Cindy's Story

My name is Cindy. At the time when this all began I was 28 years old. Married to a wonderful man who has been by my side dealing with this horrible condition with me. We had only been married a little less then a year when this all started and when you take those vows “for better or worse in sickness and health”…he has definitely been there through it all and for what lies ahead. Thank God for him.

Let me first say, thank you to Mark for having this wonderful site with this section for us to tell our stories. My feeling is it is helpful to those of us with this horrible condition to at least have some places to go for answers, ask questions, and most importantly connect with others who have gone thru or are going thru the same as you. Maybe my story or someone else’s on here sounds familiar to you, maybe parts of it you have been thru or maybe you don’t know what lies ahead and want answers or just someone else you can read about, maybe contact, hey maybe even form a friendship unlike others you have because face it nobody else knows 100% how you are feeling and what you are going thru with this than others who have it.

I feel it is helpful to all of us suffering from this horrible condition and reading others stories makes you feel that you are not the only one out there with this horrible condition. I feel it brings others with the same or similar condition in touch with each other, if they want to. This has happened for me.

Even though writing this story and doing updates takes awhile I feel it’s worth it and telling it for two reasons. One is I do refer back to it at times for myself as well as to refresh my memory to specific things a doctor has asked me. But the other reason is YOU. If I can help just one person and hopefully more than it was worth it. My story has been on Marks site and some others for a while. As well as I have been a user and have gotten close with some over the years of a wonderful pancreas board. Marks site has the link if you want to check it out; Gary was the Administrator of and did an excellent job. Part of my story is unique as you read it because I went through a pregnancy and have a miracle healthy baby boy. As Gary had told me the end of 2005, ”Cindy you were the first member to deliver a baby in our group of pancreas sufferer’s here.” So yes my story does have a twist in it that makes it unique and maybe the information will help you if you are pregnant or wanting to be. Either way you are welcome to read my story. If you would like to contact me I have my email at the end of the story. Just remember everyone is different just like their pancreas condition

This is on the lengthy side, but for you to understand it all, I feel I need to give a detailed complete history. A year and half prior to February 1999 I was having pains when I ate certain foods (i.e., sauce) and my primary doctor said he thought it was just Gastritis and stay away from spicy foods. So I stayed away from eating sauce out at places and some other spicy foods. He also put me on Prevacid, once a day. Later I was switched from Prevacid to Prilosec.

Then in February, I started having bad attacks of pain in my abdomen and went back to the primary doctor. From then through April I was sent for many tests from blood work to GI series, Sonograms, cat scans, and the list goes on and on. All these tests came back negative but my blood work levels showed acute Pancreatitis. The doctors kept thinking it was my Gallbladder, after all, the two main causes of Pancreatitis is Gallbladder or alcohol. I am not an alcoholic; I do not even drink. He told me go see a Gastroenterologist. The Gastroenterologist did repeat tests and still wasn’t coming up with anything. He put me on Creon-pancreatic enzymes - 2 caps per meal and said stay on Prilosec. He also said stay on a Low-Fat diet, meaning no more then 3g fat in the food. I was on various painkillers at home, changing when they didn’t relieve the pain anymore (Darvocet, Vicodin, Percoset, Extra Strength Vicodin). In the hospitals I was on Demerol then they added Visceral, later switched to Dilaudin.

The Gastroenterologist also sent me for a sweat test for the 1 % chance of cystic fibrosis. It sounded so crazy that I couldn’t have this because it is a childhood disease and it would have come out prior to now. You also need to have the gene from at least one parent to have it. Well, to make a long story short I was told I had cystic fibrosis. Thank God we followed up at a cystic fibrosis care center at another hospital and did repeat tests and a gene test and turned out I do NOT have it. I don't even have the gene. But what hell they put my family and I through. After that I was scheduled to go for an ERCP but it wasn’t going to be for a month and I could not wait. I went back to my primary doctor who in turn called a different Gastroenterologist and had me go right over to his office.

This Gastroenterologist had me switch from Creon to Pancrease still 2 caps per meal. He had me go right over to the hospital for blood and urine work and I was told to get a Gallbladder series done the following 2 days - it is a 2 part/day test. The next day, while I was going to get the Gallbladder test done, they asked questions about what medications I was currently taking (because I had to take pills for the second part of the test) they stopped and called my doctor. The test was not done at that time because it turned out the doctors were trying to get in touch with me because the prior days Amylase and lipase that I did at the hospital lab came back very high and showing in my urine as well. I was told to meet them at the emergency room and I was being admitted. He was even surprised I was feeling okay being able to walk let alone drive my car due to how high the numbers were.

This was in April 1999 and I was in the hospital for 11 days. Repeat tests were done again and the Gallbladder series, all of which did not show what was causing the Pancreatitis. They were trying to get my levels to come down with being NPO/on IV the whole time in order to perform an ERCP. The levels never really came down and I had to have the ERCP done anyway. The ERCP showed Pancreatic Divisum. He said when you are born you have 2 ducts that should fuse together as one over time. Mine did not, they were smaller than usual and the major duct did not work at all.

Films were taken and I was told go to New York City and see this specific stent surgeon who does stent surgeries everyday. He warned me though that stent surgeries may not fix me and he has seen some patients get worse. But at that time with the pain, thinking if I didn’t get the stent put in I wasn't going to be fixed anyway and still have this condition I wanted to hear what the surgeon had to say. When I met with the stent surgeon he was optimistic that he could help me, we liked him and trusted him. While under his care, the Pancreas enzymes were increased to 4 caps per meal and 2 caps each snack. The Prilosec was increased to 2 caps per day.

The lowest my Amylase ever was 581, at a good time. The highest I have been until recently was 2,000+. Now 4,000+ (12/99).

On 5/20/99

the first stent was placed in the duct and two weeks later removed; I wasn’t better. Each time I went through these time periods my food intakes got worse and worse and that's where I lost 53 lbs.

On 7/6

I was back in the hospital for the doctor to possibly put another stent in. He did exploratory at the time and found that not only did my major duct not work but also the minor duct had a kink/stricture in it. He was not able to place a stent there at this time so he stretched/dilated part of the duct. I was told wait 2 months and come back for placement of a stent. He was hoping the stricture would open a bit to put a stent in next time and in the meantime give my insides time to rest and stay on strict diet.

On 9/8/99

second stent was placed. Was told if tolerated, it will be left in for 6-8 weeks. The appointment was set for 7 weeks. But by 5½ weeks I was having horrible pains - at this point my acute Pancreatitis now went chronic. I could not handle the pain, could not move, I had blood work done my Amylase was up again. At 6 weeks (10/20/99) I was in the hospital to remove the stent. They mentioned the pain could possibly be from a scar tissue build up. There was no scar tissue build up, my body was kicking out the stent and the kink/stricture was still there. The stent was removed, debris cleaned out and a larger stent placed. I was told if tolerated, 6-8 weeks for this stent to stay in, that the longer it stayed in the better chance of it working. If it didn't work and the pains were still there when eating the next step was to see a bypass surgeon.

I knew by my eating issues and pain that this stent did not work either. The bypass surgeon was already told about me and he was looking at my films during this time. In addition, when my surgeon saw me in the hospital in September and how much weight I lost he told me to see a Clinical Nutritionist/Dietician to help me as well as stay on eating small meals more frequently. The Dietitian had said that for me I needed 2100 calories to maintain my weight and to gain 1/2-1 LB a week. I was on a low fat-High Carb diet now. I was only able to get, if I was lucky, 1000 calories into me a day because of the pain and not being able to eat a lot of things. I wasn't even able to drink Ensure light because it gave me pain now. The Dietitian recommended trying these predigested nutritional drinks. Called Subdue they are drinks broken down into the simplest form with everything you need in them. We had to specially order then, have them delivered at home-we tried-but I still had the pain.

I ate just to eat with all the pain. It was then that it was brought up if this continues I might have to be put on TPN - total parental nutrition - feeding tube as a supplement with whatever food tolerated. I didn’t like this idea. During Sept-Oct the surgeon and some other doctors were saying they were not sure if the kink/stricture was my source of my pain or if there was something else going on causing it. They said my pains should be immediate after eating to hours later, which sometimes is true. Other times it's during the night or the next day and that is not typical. A blood test fractionating my Amylase was done and was in question. This one came back saying 100% Macro Amylase, which was explained to me that the Amylase was coming from somewhere other than the Pancreas. So I had gone to see another surgeon on the same level as this one (the stent was still in at this time) hoping he would come up with something. He spoke with my doctors, dietitian, looked over all my films, sent me for a Doppler Sonogram, which looks at your artery blood flow. That came out negative.

He switched me from Prilosec to Axid, as he said sometimes Prilosec could cause abdominal pain (changing to Axid was OK'd by my other surgeon also). He did repeat blood tests including fractionating the Amylase which now showed 76% from the Pancreas and the rest he said was because my Amylase was so high that it was attaching onto cells in my body and not flowing smoothly through my kidneys. At the end of all this, the surgeon said he did not see anything else and it all stems back to my original issue and that was all with him.

At this time the TPN was brought up again. During the conversations between the doctors and dietitian they decided I was not going to just have the TPN as a supplement with food but total and no food at all. To say the least, I was upset but I had weighed 157 lbs. prior to 3/99 and dropped down to 104 lbs. My insides were so swollen and I was weak. They didn’t want me to lose any more weight, wanted me to gain some weight, calm my Pancreas, stomach, etc., all down from the Pancreatitis.

On 11/22-11/27

(yes, for thanksgiving too) I was hospitalized for insertion of the infusaport. I am on home TPN and I feed during the night for 14 hours. Due to being so skinny and this is a foreign object in my body it was painful in the beginning, now just uncomfortable. It did calm my Pancreatitis down which is great after all the pain I was having. I do not need to take the enzymes and Axid while on TPN. I have named the TPN/feeding tube Marguerite, as it sounds better then saying feeding tube or TPN.

On 11/30

(still had the third stent in) I went to see the bypass surgeon. He was very optimistic and is from the old school of looking you over from head to toe to make sure there isn't something else causing the Pancreatitis and pains before he would just cut me open, in case I don't have a chance of the surgery helping me. He did not believe the kink/stricture is my source of my pain/problem. If it was, my films would show a bulging/backup on one side of it and it does not. He said besides the TPN I can have some water, (yes- for weeks the other doctors said only sip of water when taking a pill and lemon swabs) try lettuce with lemon and salt and we will speak in a week on how I am doing.

He said get off the painkillers as my pain tolerance is low after all this time and if surgery is an option down the line I won't be able to get through it all. He went back to the hospital where my videotapes of each ERCP were done and saw a narrowing in the head where the duct meets the head of my Pancreas. He called me and said get the stent out now as it sometimes can cause this/make it worse and might be causing/adding to my pains. He had asked the other surgeon to take films he needed when he removed the stent. He also noticed blood results on my thyroid showing hyper. There were two done and one was high. He wanted me to see an Endocrinologist.

I saw the Endocrinologist who examined me and said he doesn’t believe I am hyperthyroid. He said the reason the level was high and will continue to be up and down is because I am on birth control (for ovarian cysts) pills and estrogen does that. He explained that the thyroid tests that doctor did, did not back the estrogen out of it for the results. Also my pituitary gland would be extremely low if I had it, which it isn't. On 12/8/99 the stent was removed, films were taken and then we spoke again. He said the Gastroenterologist and himself want to get me off the TPN because it was already 4 weeks of being on it and the risk of infection goes up as the weeks go on. He said start eating some foods --adding cucumbers to the lettuce, bread, ensure, etc., and to wait 4 hours between each. The hope was I could go back to eating and get off the TPN.

On that Friday I started to eat and by Saturday I was in pain and by Sunday and Monday I was back to not being able to move again so I stopped eating and kept on just TPN until I was going to speak to the doctors again. When I spoke with the bypass surgeon again he had spoken with the Gastroenterologist already and he said the Gastroenterologist will handle all the day-to-day care with me and he would be there if and when I needed to get operated on or need to discuss something with him. The Gastroenterologist is local and the surgeon is not. I was told again to eat, don't wait the 4 hours in-between, and keep eating even with the pain to see what happens. This time take the enzymes and Axid.

In the past they said they didn't make a difference but I followed instructions from the doctor. I was told when I get the pains to go have blood work done to see if my levels were high again which always happened in the past. Basically, the surgeon was not going to operate on me without seeing definite correlation between the pain and levels at this time when I did not have a stent in. They had me eat for couple days through pain and the same thing happened again and kept getting worse. On two separate days I had blood work done. The results came back and the Gastroenterologist called me that my first Amylase was up to 2,000 in change. The next day it was 4,000 in change with a lipase of 9,000. He said call the surgeon, if he’s going to operate it should be now.

I spoke with the surgeon he was happy to hear this because now he said I have an objective disease without stents in. Now he would operate after the first of the year, as it was Christmas week and then New Years week. We went back to see him to discuss the surgery which is scheduled for January 3, 2000. The surgery is the Puestow surgery on my duct. He is going to cut where the narrowing part of my duct is and bring my intestines up and connect. It could turn out that he might have to do a Whipple surgery depending on if he cannot locate or get to that duct and has to go through the head of my Pancreas. In addition if there is hardening of my Pancreas, which was caused from the stenting, he will have to cut that away as well. He said he is leaving my spleen in.

At this time, prior to surgery the GI doctor called to say my hemoglobin dropped a lot. It should be 11.5 and up to I'm not sure the level. On past tests it was 11.1. Well on 12/23 he just got them back-it dropped to 8.5 so he said now I'm anemic--opposite of diabetic. At first he said call the surgeon because I'm going to need a transfusion prior to surgery on Monday. He also mentioned I needed more Vitamin K even though they had been giving me injections (the nurse) when she comes 2 times per week. I was given another dose of Vitamin K prior to surgery.

UPDATE:

On January 4, 2000 I was scheduled to have the Puestow surgery. However, I had more fixing that needed to be done than just be drained. I ended up having the Duval surgery. I was in the hospital for 9 days. Besides draining, 40 percent of the Pancreas was removed due to disease and the Gallbladder and spleen were removed. When I read my records from surgery it says that the following was performed: Distal Pancreatectomy X3 Splenectomy Cholecystectomy with exploration of common bile duct Duodenotomy Sphincteroplasty of Bile duct Sphincteroplasty of Pancreatic duct Roux-en-y Pancreaticojejunostomy Rous-en-y Jejunojejunostoy Laparotomy.

In the past the doctors said that it looked like I had 2ducts, one that didn’t work and the other with a kink/stricture in it. But, when they opened me up I had 6 no good ducts. They resectioned 3 parts of my Pancreas; they opened it and sewed it to the inside of my Pancreas. They brought a loop of the intestines up and connected that. Now the Pancreas drains from both ends directly into the intestines. I was told this is something I was born with and it took many years to get to this but that I would have needed this surgery in my lifetime whether it be that it came out now to effect me or later in life.

Thank God by drinking Coke/Pepsi soda my sugar levels had gotten better that I did not need a transfusion prior or during surgery. The surgeon believes I'm fixed and so do I. It might be too soon to tell but prior to the surgery I had not been able to eat anything and was on TPN. During my stay in the hospital they had me start on soft foods, chicken cutlets, etc., and I did not have Pancreatitis pain. Only a week since I’m home I have already eaten some of my foods I craved--pizza and carvel ice cream with hot fudge. I eat small meals right now as my stomach has shrunk a lot as I haven't eaten regular in a year as well as I need to still heal. I was told it would take 4-6 weeks to get my appetite back. I do have air/gas pains from the surgery but I am told that will go away in time. I currently take prescription Tagamet and Tylenol with Codeine, if needed, for pain. So far the only pain I have had is if I sneeze, cough, laugh and now the incision is starting to heal so it is giving me some discomfort

The TPN port was still in prior to going in for surgery. For me it was easier as I don't like needles. They used the port when needed for the IVs and anesthesia. We are awaiting results of the biopsies of the parts taken out and blood tests, which will take a couple weeks. Prior to my surgery my Amylase was up to 4,000. When it was tested with eating in the hospital it was down to 400. On 1/25/00 I went back to the hospital for removal of the TPN port. All went well except for the usual soreness that comes with it. On 2/8/00 I had a follow up appt with the surgeon. Got great news that everything looks good and healing well. I do not need to see him for another 3 months unless I have a problem. I need to continue taking the Tagamet for 3 months then that is it. I have gotten myself off Tylenol with Codeine as it caused problems with constipation for me.

As far as not having a spleen anymore he said I need to get the vaccine every 5 years and if I have any work done for instance dental work I need to take an antibiotic. I am still healing from the incisions, cannot lift things and need to take it a little easy but I'm definitely on the road to recovery. On top of all of this I had just gotten terminated from my job as they said they needed to fill my position. I was told I can re-apply and that they do want me back. I am in the process of doing so and hope for the best.

Update July 2000:

Prior to my surgery in January I had become slightly anemic. It was told to me after being able to eat normally again I would get better. I never was anemic before having pancreatic issues-- not being able to eat and being put on TPN. In April/May the primary doctor did blood tests and it was found that the anemia is worse than before. My iron and Ferritan levels are half of what they should be. I was told to take an iron pill (Ferrous Sulfate) once a day and to do three hemocults (stool samples). I couldn’t continue taking the iron pills because they caused really bad migraines for me. After only taking 2 days of iron pills I had a migraine for 4 days and I had to get a shot of Toradol to stop the migraine.

The hemocults showed blood. I was told between the hemocults and blood tests I was/am bleeding internally. My GI doctor scheduled me to have an Endoscopy done on July 3, 2000 to check if the bleeding is from gastritis, bleeding ulcer or from the surgery. In the past I was checked for gastritis and bleeding ulcer they were negative. My doctors said 9 times out of 10 its from the surgery, that inside everything might not be healed yet. So we will see what they say after having the Endoscopy done.

I still go to physical therapy to continue to work on building my strength and flexibility. I am doing really well with eating. The only foods that I cannot eat are spicy and peppery foods, which was a problem before. Some goodies make me feel sick to my stomach, maybe they are too rich. Besides those, I eat normal now and have no pancreatic pain when and after I eat. The surgery in January definitely was a success.

On another note, back in January when I was let go at my job, I was told I could re-apply and I wouldn't have a problem getting back in. It never worked out because there was a change in upper management and she did not give me a chance. So I had to move on. I pray that I am fixed and can lead a 'normal' life going forward. I pray for all of you to be pain free and healthy as well. If you would like to contact me please E-Mail me. I thank you for letting me share my story.

UPDATE:

It has been awhile since I updated my story. I would like to first say that it has now been over a year since my Pancreas surgery. I can still say it was a success. I hope it gives all of you hope that miracles do happen; I am living proof of that. Back in July 2000 the Endoscopy that was done to check for bleeding was negative. The GI doctor said the hole either closed up already or was very small. In time, my anemia went away. I believe this is because now I am able to eat foods that my body was deprived of when I was sick and on TPN (I was never able to take iron pills due to migraines).

Unrelated to the Pancreas issues I had, I had to have two kidney surgeries this year. I tell you this because I was told it was another "You were born with" condition. A Diverticulum (pocket) half the size of my kidney had developed in my left kidney. The urine was able to get into the "mouth" of the Diverticulum and stones had formed. The real issue at hand was I could get infections from this as well as I could have excruciating pain from this. My husband and I do not have children of our own yet and one day would like to. I was told by several doctors not to get pregnant with this until it is taken care of.

In January 2001 (one year form my Pancreas surgery) I had percutaneous surgery, which is less invasive, on the left kidney. The doctor removed the stones, drained the Diverticulum, sealed off the opening and cauterized the walls of the Diverticulum hoping it would collapse on its own. However, the surgery did not work and now I was in pain. In February 2001 I had open surgery on the Kidney. The Diverticulum was just too big to collapse on its own. During surgery the doctor also found I had another "mouth/opening" to the Diverticulum. The doctor said that I was the first patient he saw with two openings. During surgery both openings were sealed and parts of the Diverticulum were cut out that it is no longer a pocket. The surgery was a success. I am doing well now and will be returning back to work this month. I hope and pray I am done with all surgeries and can go back to living a full life.

Update November 2001- April 2002

In November 2001 I started having pain again from eating along with always going to the bathroom. It seemed to be only with milk products at this time. I went to my primary doctor and he ran blood tests and thought it was a virus. The blood tests showed my White Blood Cells a little high 13.5 and Amylase 435 (which for me will never be normal-but this is a better reading then prior which was in the thousands).

He told me to slowly start eating again and I should be better. I still was having problems eating and decided to check with my surgeon (not take any chances). I called the surgeon and he ordered a CAT scan to check out my pancreas. The CAT scan came back negative and he told me to see the primary doctor. The doctor said I had an intestinal virus and looks like I'm Lactose Intolerant. He said to stay away from dairy and use Lactaid milk and lactose enzymes. Eventually I was able to eat more but even with taking Lactose enzymes (and now watching that Lactose is hidden in many foods) I was still having pain to the point of taking pain killers at times

Beginning of 2002, I was concentrating on more of buying our first home. We went ahead signing the papers once the Cat Scan came back negative and closed end of January.

In March 2002, I made several visits back to the primary doctor that I am not doing well with eating and still having pain. It has gotten worse now and not just dairy products. He set me up with a dietician in his office. I saw him in April and he said he didn't think my problem was only lactose intolerance and maybe I was allergic to something else. He put me on an extremely strict diet for 4 weeks and then to come back to see him. This diet would contain no foods hard to digest (no lactose, salad, sauces, gravies, raw veggies, citrus, no seeds/grains etc) and I was to write everything down. Still on this diet at times I was having pain so I decided I was going to research Lactose Intolerance and bought a book called "Living well with Lactose Intolerance". This was one of the best things I could have done. This book said do NOT assume you are lactose intolerant because it mimics other conditions. I read about a test called a Breath Hydrogen Test, which is the most accurate test to determine if you are Lactose Intolerant. The test is based on the fact that hydrogen gas is rarely found in the human body unless you are Lactose Intolerant. I went back to my primary and told him send me for this test and I have to get to the bottom of this. I told him even if I have this I know there is something else wrong. I had this 2 hour test done and it came out normal- I was NOT Lactose Intolerant. I guess you can say sometimes patients know better than doctors and you have to force them to test you for a diagnosis via test.

During this time I also asked the doctor to give me a referral to go back to the Gastroenterologist. He said okay but advised I get another CAT scan done. He wanted the CAT scan from November compared to the new CAT scan. I went for the CAT scan April 22 with the IV. As far as what it picked up on my pancreas it was negative. I am not surprised because Cat Scans NEVER showed my pancreas issues. The one thing I would like to mention is in the report they wrote "spleen is normal". I do NOT have a spleen anymore so I don't know what they think they saw.... The only thing it also showed was constipation--which is from all the Vicodin from all the pain I have been getting after eating.

I went to see the gastro doctor (after 2 years) he is not sure what is going on with me. He advised to stop taking Vicodin and gave me a new pill called Nulev. This is a pill for spasms and pain that you put on your tongue and dissolve. He said try this instead of Vicodin. The Nulev did not help at all. He gave me a script for the next time I have extreme pain to go to the lab and have Amylase, CBC, Liver Panel done for him to see my levels and to come back in 2 weeks. I asked if it could be I have adhesions from surgery but he didn't think so.

Update May 2002:

I faxed the latest reports to my surgeon and spoke with him. He personally got on the phone with the gastro doctor and requested he send me for a MRCP. He said the MRCP would be better than the ERCP at this point for me. He just wasn't sure if the MRCP could definitely be done because I have Titanium clips in me from the surgery (didn't know this until I saw the Cat Scan report). Was later told its fine to have the MRCP with the clips. Long story short...the Gastro doctor never called me back or made appt for MRCP. I left him several messages and no return call. The receptionist told me he said "Same plan as yesterday". I figured this meant he wanted me to first get the blood work done. So far no MRCP was done

I had the blood work done when I was a level 6 out of 1-10 pain to just get him some type of readings to go by. The following week I called the Gastro doctor for the results. He did not get on the phone with me. I received a voicemail message saying "your Amylase is high per the surgeon go to New York City and see the stent specialist ". I tried to speak to the Gastro doctor and get a copy of my blood work at the time with no luck. I figured by the message the Gastro doctor spoke to my surgeon and that's what they decided. In speaking with the surgeon the next day it turned out the Gastro doctor never called him. They didn't speak since the week before about the MRCP. I informed the surgeon what happened. He told me that specific stent surgeon is not practicing right now at the hospital (he had surgeries of his own) but I can see one of the associates (which was fine with me as one of them assisted several times prior). He said I will call him and you call to get an appointment for an ERCP. He explained the ERCP rather than MRCP because it will give more definitive answer to what's going on.

An exploratory ERCP was now scheduled for May 6. I explained that anything else but exploratory needed to be okayed with my surgeon (i.e.: stenting).

Had ERCP done --just exploratory. The doctor was great and followed instructions from my other surgeon and myself. Additionally, this time I went prepared to the hospital with paper tape as I'm allergic to everything else--and they actually did use it!!! Asked anesthesiologist to give me Toradol with anesthesia due to migraines from the anesthesia. He was wonderful--gave me Toradol and used the paper tape--finally someone listened!!! Wish the recovery room did!!

My surgery that was done was my pancreas drains (supposed to) out both ends. In this ERCP he found one side the opening and drainage and couldn't find the other opening--hence the problem!!! He listened to what I said and stopped right there. He explained if he used wires, ballooning etc he would have had to stent to drain. I was released hours later after being told I had to drink and eat something. I was given water, tea and asked fruit or muffin. Took the muffin. Found out later I was to be on liquids for rest of day...Hence almost home and the pain started. Vicodin, Tylenol w/codeine anything that would help but nothing did. Deciding to go to ER or not. Now its midnight and I paged the doctor (covering doc on). He would have called in a new script for me but the pharmacy here closed at 9 he explained I can come back to the hospital where I was which is 4 hours away. Explained if I have to go to the emergency room but they will probably keep me. I decided to wait it out and finally fell asleep a bit.

The next morning I was up at 7 took a sip of water and pill and started throwing up. I looked up information to a 24-hour pharmacy now to give to the doc (remember I just moved to this town) paged the doctor and he called me in script for vomiting and Oxycontin for pain.

During the day I tried to drink sips of ensure then later on 1/2 Popsicle then I started throwing up again--forget drinking or eating.

That night spoke to surgeon who performed the ERCP he said I'm sick from the ERCP and he said he spoke with the surgeon in Westchester and they wanted me to go for the MRCP. Now if that gastro doc would have listened and sent me for it....

So he faxed a script etc. I was able to get in the next day and get the MRCP done. Next day back to work- if I don't I don't get paid. The only thing the MRCP showed was "pancreatic duct dilated". They told me it looked like part of it was dilated but not sure if it was dilated all the way through. I was now informed contact the surgeon and go for consultation for possible pancreatic biliary bypass surgery.

Had to wait a couple weeks to see the surgeon as he is out of town. In meantime I'm to be on 0-extremely low fat diet and Oxycontin for pain and I'm trying to stay out of the hospital.

Met with the surgeon. He said he is going to review the pics and videotape of the exploratory ERCP and meet with the stent surgeon. While we were in his office he also called to get the actual films to review the MRCP. I brought him the films I had from the past 2 Cat scans but they weren't a clear picture. He said it does look like there is some dilation but maybe not all the way through in one of the ducts. My amylase level was taken last month being high at 867. With my issues and with high amylase he is saying leaning towards it the pancreatitis acting up again due to the divisum. He explained about how my pancreas and ducts were before I had the surgery and what he did during surgery on how it should be working/draining. For me he said my ducts were/are really screwed up and extremely tiny (2 millimeters). He doesn't want to put me back in for major surgery and doesn't want to touch my pancreas (meaning slicing anymore of it off as he already removed the tail). He said he thinks the problem is the one duct (dorsal) on the right of my pancreas that was created with the loop of intestines brought up to it. He gave me a script when I have pain after eating to go 3x and get the amylase and lipase done. He said its not the fat in my foods bothering me it seems to be the volume of food and to eat 5-6 small meals a day. Depending on the films, he wants to aim that part of the duct is open and that he will have a tiny stent put in (by the stent surgeon-but they are working on my case together) to hopefully drain it and I will be all better. Maybe I wont need major surgery again and just stent. I am terrified of stenting again though. I just have to keep in mind the stenting before was different and prior all the surgery he did. I did mention to him I have already dropped 14 1/2 lbs and about me not being able to eat much without pain.

Turned out the ERCP that was just done did not help him because it was this dorsal duct that the stent surgeon could not locate the opening of. Now he is waiting to talk to someone else about the MRCP and get my blood test results. I took 1 of the 3 blood tests, which the Amylase was high at 758. He said I don't have to go for the other 2 blood tests as I did have another about a month ago. But I'm used to the results being in the thousands. He said its scar tissue from my surgery from 2 1/2 years ago is causing the blockage. He said (and he will call) to go back to NYC and see the stent surgeon. He will cut the sphincter muscle and insert a stent to hopefully drain and clear up the scar tissue issue.

6/3

ERCP with stent insertion. Was in overnight and released next day. The stent surgeon found the dorsal duct and yes scar tissue was the problem. He was only able to get into the head of the duct and place a tiny stent. He was not able to get through the duct either with wires, fluid, etc because of the scar tissue being so bad. Basically the stent will only be able to drain a small portion and not fix my problem. The stent should fall out on itself. I will need to go for x-rays in 2 weeks to see if it did or not. If not I will have to go back for ERCP to remove it. He did consult with surgeon from Westchester as well as taking pictures he would need to see. I was basically told he (stent surgeon) could not fix me. I was told the surgeon in Westchester said he doesn't want to do major surgery on me again. That I do not have a good chance and that more scar tissue would form after that surgery. I was basically told there was nothing that could be done for now until and if my duct dilates by itself bigger from scar tissue that he will be able to work with it. In the meantime gave me another script for Oxycontin for pain, gradually increase types of food with 6 small meals per day. I have made an appointment with the surgeon for next week to talk to him about all of this and what am I supposed to do? I have always been a fighter and sounds like they are not giving me options except live with this. I do not want to get as sick as I was years ago and on TPN again. Have to wait now to see the surgeon and if I have any options.

Boy I don't know where to start...I left off that the stent surgeon last Monday put stent in me to come out next week. When he went in this time through ERCP he said it looked like both ducts had problem he couldn't get all the way through to the dorsal duct cause of blockage. He inserted stent in opening of the other duct. He spoke to surgeon and told me he said there was nothing he could do for me until/and if the duct dilates bigger to have something to work with (meaning more scar tissue). We went to see surgeon Tuesday and glad we did. Spent like an hour in with him with tons of questions and drawing diagrams. Because I know so much now over these years he even gave me a book he co-wrote that the medical profession uses--but to help me with the pictures but basically to read about a full Roux-en-Y surgery.

During this past week I have been doing researching, thinking what am I going to do, get my pancreas out, find another doctor etc. My surgeon (who we all like) said for right now I'm in "holding". There is nothing he can do right now as my chances of the surgery working right now is not in my favor. He is not quick to cut which is good, I think. I have heard too many horror stories. He has been doing this for a long time and my problem is specifically my ducts with drainage. My gland (pancreas) is perfectly fine and I am not diabetic. In the surgery in 2000 he did remove the tail of my pancreas. Regarding an Islet Transplant (when I was researching if I needed to go the route of total pancrectectomy which then I would go for islet cell transplant to hope I wasn't a brittle diabetic) he explained the islets are throughout your pancreas not just the tail. If I didn't have anymore I would be diabetic now. We did talk that there are some out there with pancreas and because of surgeries, pancreatitis etc. some are diabetic already. He said when he did surgery I was fine and had tons. He will re-look at films for me though. He also said most could function fine with only 20-25% of pancreas and not be diabetic

He told me that before my surgery my ducts were not even 1mm (actually less than that). The problem is they are not draining properly at both ends. He needs the duct bigger to be able to get in there to work with it.

For now I am to eat small meals 6 per day, RECORD everything from meds to pain to meals etc. Talk to him next week (while he is going to look at the last ERCP films and islet info). He says maybe some miracle this will heal itself after the stent was just put in but if not we have to wait until I have a better chance of him fixing the duct. He said if I did get really bad he wouldn't let me just suffer so he would help me. He totally doesn't advise I jump into getting my pancreas taken out. Actually he knows the surgeon I was speaking with --he knows him for over 20 years...Seems these top surgeons (there aren't that many out there) all know each other. He had all good things to say about him but there are all different stages with pancreas problems. Being my glad is perfect and its drainage with my ducts he feels eventually when it dilates more he can go in and fix me permanently with a full Roux-en-Y. He basically described that it will make the ducts even bigger and even if scar tissue formed it wouldn't be that big to close them. Kind of like (so hard to describe) taking the duct and cutting it down the middle longwise. Then insert tubing (like stent) permanently sew it all up and to intestines. I am happy if it works that there is another way to solve this eventually without totally getting pancreas out. I asked about the islet cell transplant also. He had mixed feelings, which I understand cause there is no guarantee and just like any surgery good and bad happens. My husbands concern was injecting islets into liver can it ruin my liver--well there is possibility and of course taking insulin meds there is possibility of over injecting...I don't like the fact of not having a "quick fix" so to say. That I have to wait there is nothing to be done now. But to jump into getting pancreas out and going through that for right now I am holding off.

Went for X-ray to see if stent fell out on its own and it didn't. I knew that as I could feel it... The stent was to come out this week being 2 weeks in however the stent docs’ dad passed away this week so he is not in and other doc is out of country. They can’t get me in until the 27th, which would make it 3 1/2 weeks stent in. I left message for my surgeon to see if that was okay or what I should do cause he wanted it out and not stay in longer. It didn't help me anyway and I'm having attacks and not sure if its from that being in or not. Still out on STD.

6/27/02

stent going to be taken out. I went in with pain and migraine. I hate these procedures but just wanted to go under to get rid of the pain and migraine. He did give me Toradol for migraine so I woke up with no migraine. They took stent out. Woke up with pain. Got Demerol shot before went home but it didn't make the pain go away. As soon as got home took meds and to bed I went. Friday was bad with nausea and vomiting and pain. Finally called doctor. Got prescription for Compazine and he did say I could take more than 1 Oxycontin at time. He offered I could come back to the hospital but I said no as all I would do is sit there on meds and it takes 2-3 hours to get back to the hospital.

Since then I have nausea and pain. Trying to eat some things like jello etc so the headaches stop. Tomorrow however I am unable to with not eating, pain and being dizzy from not eating.

Update (8/02):

Went back to work July 3 2002. Compazine didn't work at all. Doc then prescribed Zofran (4 mg) worked on and off then stopped working. Called surgeon he said body just has to work its way through the nausea. Nausea finally went away for most part except still comes back if eat too much dairy. The only thing that helped the nausea was Ginger Snap cookies however couldn’t eat all day long (only small meals with breaks in between)

Hopefully that's the end of this ordeal forever or at least for a long, long time....

Update Feb 2003

As I spoke about prior back in 2001 I kidney surgeries due to a diverticula. I was told by the doctors to not get pregnant until this was taken care of. Then in 1/2002 we bought our first home. In between the buying of the home and summer of 2002 I had complications due to a build up of scar tissue in both pancreas ducts from the 1/2000 surgery and had to get that taken care of.

After all this we decided to speak to the doctors regarding my health and our thoughts was that this was the best time to start our family as I was doing well again. All the docs as well as we went to see a high-risk doctor agreed with our thoughts. I would be high-risk due to the CP and would be monitored closely for diabetes, malnutrition and CP attacks. Six months later we did it!! I have had a couple appointments with the doctors and sonograms. Everything looks fine! We did have to wait a little waiting game to see if it was 1 or 2 babies in there. This was a possibility because my HCG (pregnancy levels) did not just go up by the 60% to double in 2-3 days. They went from 496 to 2,217. But we now know its 1 baby!

The estimated due date is 10/5/03 but the doc will probably induce me earlier due to the CP.

PS. As my GYN put it at one appt he gives me a lot of credit due to all I've been through, being a fighter and being so positive. My response- I got through all of this and fighting and I will continue to fight and get through this pregnancy to deliver a healthy baby!!!

Update April 2003

I want to back up a little bit .up to this point in pregnancy it was great; actually the entire pregnancy was great as far as the pregnancy aspect goes. I didn't have some of the usual affects pregnancy has on you like nausea, morning sickness etc.

I will tell you the entire story of what took place not only with my pancreas but important parts of the pregnancy because maybe you are a woman like I was with pancreatitis and need to hear my experience. My pancreas board friends had also suggested I tell this part of my story as it's important and even if it helps shed some light to one person out there then it was worth telling it. I am in no way saying to go get pregnant or not too. I am not a doctor and each of our situations and bodies are different. I say to you to please research this and check with your doctor/s to find what is best for you and your situation. For those of you who have children know it's the most wonderful blessing and I feel fortunate to have found the strength in myself with the help of my family and doctors and courage to have gone down the road to end up with a happy ending. I did follow all of the directions of my doctors, new doctors I encountered, endured hospital stays, some hard decisions, some scary situations as well as some wonderful ones while being pregnant even with this disease.

When we started to discuss becoming pregnant we thought okay I'm in my 30's, haven't had pancreas issues since May 2002.At that time it was a little more than 2 years after my major surgery in 2000 that I had issues. At that time the scar tissue had built up in both my minor duct and the duct the surgeon made in the surgery of 2000 by what was the tail of the pancreas. In May 2002 I had underwent ERCP with stent placement for 2 weeks in the minor duct. Nobody knows how it worked because they were unable to get totally through the entire duct, but it worked for almost a year. The other duct they were not able to even see through ERCP and said to be filled with scar tissue.

We thought we had this timeframe to get pregnant and to carry the baby to term before the scar tissue would form again. We hoped for the best during this time to hopefully prevent any problems. We spoke to my surgeon who performed my 2000 surgery, my GYN/OB, went to talk to high risk OB doctor even went to a fertility doctor after a couple of months. You say why a fertility doctor as well as I thought you have to be trying to conceive for a year before they will see you. In normal circumstances, yes. The OB did agree with me to go see the fertility doctor due to time issues and if he agreed to work with us then fine. The thought was why not go get tested as we didn't want to "waist a year" if there was an issue that we of course didn't know about as this was the first time we would be trying to conceive.

All the doctors were behind us, some saying "go for it, go live your life" to others being okay with it but cautious. The main concerns were I was more predisposed to developing Gestational Diabetes, malnutrition and going into Preterm labor. I was told they could get me through the pregnancy even if worst case I ended up on TPN until the baby was born. We also spoke about the possibly inducing me to get the baby out earlier.

Also in November I got laid of from my job. They told me it was "reduction in workforce". They did loose a big account but I personally think I was in the selection of who went because I had fallen down a ramp at the job and injured my back. I did continue to work thinking it would help me keep my job and went to physical therapy. I was out on unemployment for a little while then moved on to another job in February 2003, which turned out to be better job than this one. Before getting laid off, we were already trying to get pregnant and then this happened we had decisions to make. Do we continue to keep trying or what? We decided, yes. We did all the "testings"with the fertility doctor and we were both fine. After six months of trying to conceive, the morning of January 24th I took a pregnancy test and it was positive! Later that day it was confirmed by a blood test that I was pregnant. The next day my family was going to a big party that we go to every year. Here we told the family I was pregnant. Everyone was excited; on my side of the immediate family there hasn't been a little one in over 11 years. Naturally, some were a little worried/cautious because of my health issues. The estimated due date originally was 10/5/03 but later it was moved up to 9/27/03 due to the measurements being bigger. . I had a whole team of doctors working with me from my primary doctor, to my OB to high risk OBs, etc. I had so many appointments and sonograms; I think I have the most sonograms of everyone. I ended up with over 30 sonogram pictures.

I was okay pancreas wise up until April 23, 2003, which I was in my 17th week of pregnancy. It was the same feeling that something wasn't right again and that pain that I knew all too well after eating (even with maintaining small meals). The next day I was worse, in a lot of pain, barely able to eat. I couldn't ignore this or take pain medicine as I was pregnant now and had to think of the baby. I kept taking my prenatal vitamins, didn't take any medicines or painkillers and drank ensure light and water to stay hydrated and continued to work.

I was to have my next GYN/OB appt on 5/9 but I knew I couldn't wait until then and didn't want to chance anything with being pregnant. I moved up the appt to 4/28. Note: I did not have a GI doctor any longer to go to. This was because back in the Summer 2002 when I had gotten sick that GI was no help to me, he disregarded the conversations he had with my surgeon (who is not local and the GI is) that he would do tests on me, etc. He also kept pushing me off to come back weeks later, so I stopped seeing him. I hadn't found or went to another GI, so I was just worked directly with my stent specialists in New York City.

At the 4/28 appointment with my OB, we will call him Dr "J", he ordered blood work STAT. The next day I did go to work. I had only started this job in February 03 and I was still on 90 days probation. They did not know of my pancreas history but did know I was pregnant. I told them of the pregnancy after I had had an incident of passing out while @ a retail store.

The reason was, I was standing @ the checkout line in one spot too long and the blood wasn't circulating the way it would if I was moving. I had passed out, fallen, hit my head and got a concussion. I had gone to see the OB doctor, who in turn sent me to a neurologist and I was to be out of work for about a week. During that time I saw my doctors, had an EEG done which results came back normal and I returned to work the next week on April 1st, 2003. I was only given permission to go to work but not to drive for a couple of weeks due to the concussion. Unable to drive I would take a taxi to work and my husband would bring me home. I tell you all this because later on when I got sick and ended up in the hospital they canned me right before reaching my 90-day period of passing probation. I was in the hospital and didn't know I no longer was employed until I had made a call to the job about something and was then told I no longer was employed there and that there was a letter sent to me. This termination letter was never received and was not sent certified return receipt.

Back to the pancreas side of the story, on 4/29/03, the day after seeing the doctor I went back to work. When I got home from work that night the doctor called with results. My Amylase and WBC levels were elevated. This was the first time I ever saw my WBC elevated, but we weren't sure if it was elevated because of being pregnant. The WBC was also elevated on and off during the duration of my hospital stays. My Amylase was 613 this time, which is not bad as I was used to it being in the thousands. Dr "J" wanted me to get in touch with my GI, but I didn't have one. He recommended a group, which happened to be the same group, my stent specialists recommended in the summer of 2002, so I felt comfortable with them. One of the GI doctors in the group had trained with the top stent specialist with my group in NYC. So Dr "J" called the GI on call. He called me to get my history and what was going on presently. This was now my 4th set of GI doctors since 1999. He wanted me to go to the hospital. We agreed on me meeting with his associate the next morning and then go to the hospital. I was to keep on clear liquids that night. It turned out I didn't even eat at all as I was in pain even without eating.

The next morning (4/30/03) I went to the office and met with Dr "K". Then went to the hospital and was admitted through the ER, as it was faster admission that way. At this point I was 18weeks 6 days pregnant. While waiting on the bed with IV hookup, with my husband it was the first time I felt the baby move inside of me! At first I wasn't sure, as it felt like bubbles, but as time went on I knew it was my baby! When I went into the hospital who knew it would not be but until 1 ½ months later that I would be home again. I went in with no belly and had not gained any weight that you couldn't tell I was pregnant. But when I got out of the hospitals, 1 ½ months later, you could tell I was pregnant. Now also I had to learn how to get up and down from bed and walk with a belly after lying in bed for so long. All of a sudden my belly had "popped" that you noticed on 6/6/03.

Everything at this hospital was coordinated between a bunch of doctors--I saw my primary doctor, GYN/OB, high-risk OBs, GI docs, as well as they conferred with my stent specialists in NYC. I also had dieticians and basically a whole team watching the baby and me. I was in this hospital from 4/30-5/6/03. While I was in the hospital I was NPO, on IV, on PPN (Peripheral Parental Nutrition), Demerol for pain, etc. The best news was on 5/1 my high risk OB came in and did a sonogram of the baby and everything was fine. At that time I found out it was a baby boy that I was carrying. He was to be named Brandon Joseph. On 5/4 I had a Groshong Catheter put in for TPN for better nutrition for the baby and me. This was the first time I had a Groshong. I was awake during the procedure due to being pregnant and was just numbed with meds that were okay during pregnancy. The procedure actually wasn't a big deal. It was just a little uncomfortable compared to an infusaport put in, this was much better. At this point in the hospital even with being NPO my levels kept going up and the pain was very bad. The doctors were honest and told me they felt I was getting out of their league to handle me and that I needed to be where my stent specialists were, who have known me/taken care of me in the past.

On 5/6 I was transferred via ambulance (my husband came with me in the ambulance) to NYC to Beth Israel North to be where my stent specialists were. I was in this hospital from 5/6-5/9/03. On 5/7 I had a thorough sonogram of the baby and everything was fine. They also did a thorough sonogram (Cat scans could not be done in this timing of pregnancy to be on the safe side for the baby) on me to check my pancreas etc. They saw a small (2.6cm x 1.7cm x 1.6cm) pseudocyst on the distal pancreas. However by the next test (MRCP which timing was okayed now by my OB and high risk OB doctors) on 5/16 it did not show that I had a pseudocyst any longer. The doctors said either it disappeared or was too small to show on the MRCP. (Later on 10/21/03 I had a 3D scan done and it was clear as well). The only thing that showed on this sonogram was a small renal cyst in the left kidney. I had had prior kidney surgery in 2001 due to a diverticulum. I spoke with the surgeon on the phone who performed that surgery and he said this was okay and not to worry about it.

Decisions now had to be made what to do with me. The choice to be made was either to do an ERCP and stent if they can place one or just do nothing. The safest time to do something was now in the 2nd trimester for the baby. We also felt we couldn't just do nothing and decided I was going to go ahead with the ERCP. I had the ERCP done with stent placement in the minor duct on 5/9/03. Just like the Summer of 2002, the doctors could see the issue being scar tissue blockage again. They were able to get a stent in but not all the way through. We hoped for the best that it would help at least the duration of my pregnancy. While here at BIN there were some issues. There was nobody monitoring the baby all the time, doing sonograms, there was not even a maternity ward at this hospital. We had gotten a baby monitor machine to monitor the baby's heartbeat. However there weren't any nurses who knew how to use it. Only occasionally did a GYN come to use it. My husband and I did learn how to use it and did use it to make us feel better. When nobody else was around we would check the baby’s heartbeat that it was within the normal range. The decision was made to transfer me to the next hospital, which my stent specialists were also affiliated with and they would be in charge of my care. The baby monitor followed me to this hospital. At least in this next hospital there were doctors and nurses able to use the machine, know what they were doing and a maternity section, which made me, feel more comfortable.

On 5/9 I was transferred via ambulance (my mom came with me in the ambulance for this ride) to now Beth Israel South. The stent stayed in for 2 weeks, being removed on 5/23/03. My doctors hooked me up with a team of High Risk OBs at this hospital who did all the monitoring, sonograms, etc. Around this time arose the issue that I could have an infection from the Groshong catheter. This catheter had 2 separate lines one to be used just for TPN and one for other medications. I was told originally to try not to have them draw blood from it as the infection rate increases. However, after all this time and having crappy veins to start with I was running out of places to draw blood. They were drawing daily bloods on me and sometimes more than 1x a day so we had to start using the port. The infection could have come from drawing the bloods, antibiotics, medicines, TPN and PPN, cleanliness, nobody knows exactly from where it came from.

I had an EKG and some other tests on 5/26. While waiting with my husband for the EKG the baby was moving like crazy. This was the first time my husband saw and felt baby Brandon move inside of me! They were trying to determine if I had an infection or not. Then it was decided to take the Groshong out on 5/28. I was put out (with safe medicines for the baby) for this procedure. When I was in recovery, I was running a fever so I was put on IV medicines and icepacks, which broke the fever. When they took the Groshong out it had puss on the end, which is sign of infection. The tip was sent for cultures where they watch it grow over a period of days in order to tell what kind of infection it is. In the meantime they put me on a general antibiotic called Cettazidine, which helps with some types of infections. On 5/30 they now confirmed what type of infection I had. It was a Fungi Yeast infection in the blood. The Cettazidine does not help with this type of infection. This was a bad infection to have especially while being pregnant. Decisions had to be made as to what antibiotic to use. If this did not clear up I would die and the baby. There were 3 antibiotics for this type of infection but only 1 was tested to be safe for the baby. This medicine could cause issues with me with my eyes, so I saw an eye doctor, as well as liver issues they took bloods to watch, etc. This infection was serious and in my bloodstream and Amphoteracif was the choice of antibiotic to use. This medicine causes fever and chills. With being pregnant I could go into preterm labor, which we didn't want of course. So ½ hour prior to getting the Amphoteracif I would get a Tylenol suppository and Benadryl via IV. The Amphoteracif was to be administered after that no later than ½ hour later so that the Tylenol and benadryl would still be in effect. I got very nauseous from the medicine so I was on Zofran via IV administered prior to the Amphoteracif Then the Amphoteracif would run for about 3-4 hours. I hated it -- the benadryl would make me sleepy, the Amphoteracif made me feel sick, I would get chills, it burned, etc but we needed to get rid of the infection. I was to be on the Amphoteracif for 2 weeks and got tested through blood tests and cultures to see if the infection was gone. The Amphoteracif made my magnesium and potassium levels decrease. I needed to be given riders of Potassium and Magnesium through IV. I also was given Zofran for the nausea that the Potassium caused me.

So now we needed another way for me to be fed with the TPN. On 6/1/03 they tried an EJ in my neck. I wasn't thrilled with this idea at all and figured it would be very uncomfortable but tried it. I only had 2 good veins in my neck to use. The first one that they had tried blew. They got the second one in, but it was so uncomfortable and I didn't have a good feeling about it. By 4 am on 6/2 I woke up not feeling well at all calling for the nurse. A nurses aid came in and I couldn't move my neck and needed her help to get up to go to the bathroom. When I tried I was in a lot of pain, was scared and was crying from the pain. When she got the nurse and she came in she said "Oh My God". That was real comforting! They helped me to the bathroom and it had infiltrated. My entire neck, down my chest and back was swollen and blown up. The TPN was no longer going into the vein, it blew. They got a doctor and he took the EJ out. I had to lay there for days with icepacks on me to get the swelling down and it was hard to talk and swallow. Now once again we needed another type of line to get fed and get medicines.

On 6/3 I went to Intervention Radiology and had a PICC line put in on my right side. This for me was not a good experience, as I had to be awake for it, took longer than expected, as my veins were an issue again. Every time he went to get the line in more it would hit a nerve. It took a lot of numbing needles/medicine to finally accomplish getting the PICC line in. Once it was in, it worked well until my end of my hospital stay. It was only used to feed with TPN and medicines. It was not used for drawing blood, as I was not risking another infection. The PICC was removed the day I went home. I was at this hospital until 6/14/03 then finally went home. In total I was in the hospital about 1-½ months.

During all these hospital stays I did get nausea, some vomiting etc so I was on Maalox, Zofran, furisette for the migraines, Demerol shots for pain, Tylenol, Benadryl, Prenatal vitamins which later were mixed in the TPN, Magnesium, Potassium, etc. The Potassium issue continued even when I went home that I had to take the pills, which made me sick. My primary doctor monitored my blood levels for about 2 months. Due to the nausea from the Potassium, I also tried another form of Potassium called K-Lyte. K-Lyte is a tablet form that you dissolve in a drink like water but this also made me sick. It was worse than the pill form so I went back on the pills. At home for pain I was on Vicodin. This really worried me and was trying to take it only when I really needed it, when the pain got unbearable. However it was explained to me over and over by all of the doctors that it was okay to take while being pregnant. That the effects of my body going thru all this stress and pain would be worse for the little one so I did listen to them & took it on a continual basis as instructed. The highest my Amylase level was 2,268 and Lipase was 710. My highest WBC was 12.2 which really got them worried. When I did bloods after all of this, in October, my Amylase was 388 slightly elevated but a baseline for me, Lipase normal at 33 and WBC back to normal at 9.1.

As far as the pregnancy, during the 1-½ months I didn't gain much weight and was all baby. Like I said, I walked into the hospital with no belly and walked out with one. The baby was just fine but it was scary. Every thought and question was "but is this medication or test okay for the baby". At times where it got real hard with the pain, infection etc the way I got through it was with family and thinking of the little one inside of me. I kept the book with his sonogram pictures with me all the time to look at. Thankfully, babies are protected inside the mother. They take from you all they need (i.e. food) & fortunately he was safe during all of this. We were all hoping after this I would be okay during the rest of my pregnancy and no more hospital stays.

I would like to add a couple things. During all the hospital stays I was put in regular rooms with other patients up until BIS after having a lot of issues. Being I wasn't having a problem with pregnancy, only being in the 2nd trimester and the problem was with me and not the baby they would not allow me on the maternity floor or Antipartum floor. During my hospital stays it was hard being in rooms with other people and I was very alert to who they were putting next to me because of past experiences and being that I was pregnant. I experienced a lot of roomies that were not pleasant. There were people I shouldn't have been around being pregnant. In the last hospital I had a lot of issues specifically with one nurse. One of the days as I listened to her asking this new patient questions and writing them down I heard that she had/has rashes all over and that she had the Shingles. I was very upset because the nurse was not doing anything about this like reporting it and me being pregnant I should not be in the same room as her let alone other patients to possibly get infected. I did pursue it and spoke to someone else who transferred this patient elsewhere. Try to get sleep when you have a roomy who was from the psych ward. Another was a homeless young girl who drove me nuts between her rudeness to everyone to being on the phone all night and early morning hours talking loudly, cursing etc. But the worst was this nurse who I had big issues with. She was new but that does not excuse the things that had happened. This is the same nurse who didn't think it was an issue for a Shingles patient to be by a pregnant woman. I had issues with her when she drew my blood and would end up getting the blood everywhere, to her unsanitary ways that I had to watch and tell her what to do or not to do. She would always try to apologize, for me to not say anything to others, she would not ask others for help, not know how to give shots anywhere besides your arm, try to keep everything a secret from the others to not know what was taking place. The last straw was issues with the Amphoteracif, which as I said it was very important to administer the Benadryl, Tylenol and Amphoteracif at specific timeframes. This one day in particular she gave me the Tylenol and Benadryl. I had fallen asleep and she was to come back in a ½ hour to hook up the Amphoteracif but she didn't. I woke up about 2 hours later and saw it wasn't hooked up. I called for the nurse. She came in saying she forgot and was going to get it now. I said no you cant just hook it up right now as the other meds are not as effective now and remember I'm pregnant. She went and got it anyway and went to hook it up. I refused her to hook it up and demanded her out of my room and called for another nurse. I was very upset at this point and spoke to the other nurse. Turned out I was correct and now I had to be premedicated again before hooking up the Amphoteracif. I talked to that nurse and told her she is not to work with me anymore and I demanded to talk to the head nurse. I spoke with the head nurse and a patient representative. I did a write up and she was not to care for with me anymore. I'm very glad I did this, it wasn't to get her in trouble, it was because she was new and put me and I'm sure others at risk and that is not acceptable. They spoke with her and she was to go for additional training.

Before leaving the hospital we talked about what do I do for the duration of my pregnancy. What do I do if I have more problems, who should I go to monitor the baby and me, what do I do if I go into Preterm labor, what hospital do I now go to to give birth, etc. My original OBs on the island didn't feel comfortable with me and said I should not be with them and should be with the doctors in NYC. NYC was 1 ½ hours away, more with traffic and if I go into labor I wont get there in time. Even if I was going to use these doctors and they were going to induce me there were no guarantees I didn't go into labor earlier or have complications. My stent specialist found a GI about ½ hour away from my house that did accept me as a patient (another refused me). The high-risk doctors at the last hospital found me a great group who would work with me and they were through a great hospital on the island also ½ hour away. Both the GI and OBs work at this same hospital. This hospital is known as having one of the best Neonatal units that other hospitals send babies here. We made the decision to transfer all my care to these doctors, now 6 months pregnant.

On 8/8/03 I saw this new GI doctor, Dr "B". He seemed okay. He suggested I go on the drink Subdue (which I was on in '99) as a supplement, sent me for blood work, medications to take were Tagament for the acid, Zofran for the nausea, Prenatal Vitamin and Vicodin for pain. He also explained the importance of taking the pain medicine when the pain starts, not to wait. We spoke about after pregnancy putting me on pancreatic enzymes (which I hadn't been on since 99) and options for the pain like Sandostatin or nerve blocks.

I soon started having more CP attacks and had to rely totally on Subdue for nutrition. The Subdue gave me so much nausea even with the Zofran. I even tried diluting it ½ water to ½ subdue, make pops out of it etc. I started to loose weight now. I was also having problems sleeping, being up between pain and pregnancy being in the bathroom all the time that the OB even suggested trying 25 mg of Benadryl which didn't work. These new OBs were great, very concerned and there when I needed them. Being I was loosing weight they wanted me to keep down a minimum of 6 cans of Subdue per day but preferred 8. I was lucky I got 4 down.

On 8/22/03 I had another OB appointment. At this appointment they estimated the baby to be 6 lbs 4 oz. Due to my condition getting worse they advised induction. Right now the baby was fine, but we wanted to keep it that way. He explained some of the induction to me and we would talk more at the next visit on the 29th.

Over the weekend of August 23rd through Monday I was not feeling well. On 8/25/03 I had a bad CP attack that lasted the entire night through next day, even with pain meds. On Tuesday 8/26 I decided to call the OB. He had me go to the hospital right away. My parents came to get me and I was seen right away. After monitoring me it turned out I was contracting due to dehydration. I was given IV fluids, which stopped the contractions. They switched me from Zofran to Reglan for nausea, which worked much better. They tried Percocet for the pain but only the first dose helped, so it was back on Vicodin. They also did blood work and my levels were elevated. While I was there they also did the Strep B test so the results would be back in time before I give birth. I was given the option to go home or stay. I choose to go home as all I would do there was stay on IV and after all I was going to be induced in 6 days on 8/31/03.

On August 29th I had my OB appt. The baby was still 6 lbs 4 oz and I was 35weeks 6 days pregnant. At this point I was 2 days away from induction. I was to go to the Antipartum floor of the hospital on Sunday the 31st. .I was to be there at 7pm and would be induced with Cervidel at 10 pm, which could take up to 12 hours to work. Monday morning, if needed, I would be given Pitocin at 10 am. I was also going to get an epidural. Depending on how fast everything worked I would have the baby within 24-48 hours. My husband and I were also attending Lamaze classes. These met on Tuesday nights and we missed the last 2 classes, being on 8/26 when I was in the hospital and 9/2 as I already had the baby. Of course these were the most important classes on induction and the end part of giving birth. I was a little nervous about not knowing but as others said " you will get through it and the nurses, doctors are there to help you." And yes, I did.

It turned out I didn't get induced until midnight. During the middle of the night/early morning I did start having contractions, the Cervidel worked well. Then it was off to Labor and Delivery room where I was given Pitocin and they also broke my water to move things along. After 4 ½ hours of pushing, our first child, Brandon Joseph was born! Brandon Joseph was born on Monday Sept 1, 2003 Labor Day at 9:03pm. He weighed 6 lbs 1 oz and 19" long. He is truly a blessing! He did have low blood sugar but they said that is common with babies preterm. I was planning on breastfeeding. I spoke to the doctors and lactation consultant in the hospital. For the low blood sugar he had to be force fed 1 oz bottles to keep him stabilized and learn how to suck. I would have to use the hospital grade pump to measure the milk. They explained it would only be for a couple weeks probably that I could give breast milk and it would probably be very hard because of all my pain issues. If I didn't breastfeed I could then go on these other medicines, try other pain management suggestions without worrying that it would affect the baby. My husband and I discussed all of this and decided it was best for both of us to bottle-fed. As long as we got the 1-ounce of milk into him his blood sugar stayed high enough to bring him home with us on Wednesday September 3rd. He passed all his tests (i.e.: hearing). He was tested for any issues like withdrawals due to the meds I was on; they said he passed that, as well. He didn't have jaundice at the time, which is common in preemies. He was considered a preemie only in respects to being born earlier but his size was good. He was to have his first doctor’s appt on Saturday the 6th.

At Brandon's doctors appt on the 6th the doctor noticed he was yellow hence jaundice. She had us bring him to the hospital to get blood tests done. His Bilirubin was 16.2, which is on the high end and he was to be retested again the next day and if it went up he was to go back in the hospital. Fortunately it went down to 14.5. We were to keep him in the sunlight (by a window) and make sure we get at least the 1 oz into him at each feeding to wash out the Bilirubin. By next visit (a week later) he was looking better and now had gained an ounce and grew an inch since birth. At his last appt he had lost a couple ounces and they wanted to make sure he started gaining. The only other issues he had was constipation which one of the things that helped was special formula called Similac Alimentum.

As far as my pancreas went, I had pain and attacks during labor. The epidural didn't work well only my foot was numb (the first epidural they put in was in incorrectly that they had to do it again). After giving birth I was soooo hungry, my parents brought me up a turkey sandwich. I ate ½ the sandwich, no cheese on white bread and went into another attack. Once I got out of the hospital, I was to follow-up with my doctors.

As far as that new GI doctor "B" goes he wasn't much help to me at all. I tried getting in touch with him when I had issues. I had problems with prescriptions and got nowhere when I called to straighten it out. He didn't come see me in the hospital when I ended up at the hospital on 8/25 or follow-up with me. Which is why he was to be my doctor, being local. His staff was horrible which we spoke about a couple times at my appointments and his answer was they are hired by the hospital, he doesn't have hiring, firing rights or any say. He did give me a script for pancreatic enzymes, which was Viokase in powder form. He said its more effective in powder form. This is where I had an issue at the pharmacy, getting this filled. The way he wrote the script out the pharmacy wasn't given instructions on the dosage etc. They specially ordered this, said they looked in books, tried to do their own measurements but I didn't feel comfortable with that. One day they told me one amount, another day another amount, his office staff told me she thought another amount was correct. He didn't give direction as to how much powder vs. drink nor what drink it mix it with. The pharmacy called several times and we got nowhere. I just got bounced around with people taking messages. The main reason to have him was when I went into labor he was to be around. He didn't come to the hospital for the birth or at any time (I was there from 8/31-9/3) and sent another doctor who works on livers not pancreas issues. He wasn't any help either and was overriding others orders for my food, changing my medicines etc. I had to argue with them about it all to get it straightened out. When I had a follow-up appt with Dr "B" and brought all my meds in, it turned out some of them he did change but nobody told me it was his direction. Some of them he didn't and the other doctor was changing them which was not what Dr "B" instructed. Once we got this all straightened after my pregnancy, I was on the following medicines: Antioxidant formula vitamin instead of the prenatal-once a day, Reglan 1-10mg pill 3x day, Oxycontin-10mg pill 2x day then it was 2 pills each time (40 mg day), Vicodin 5/500 as needed for breakthrough pain and Viokase enzymes.

On top of all this at my last appt with him he told me that he wouldn't be there much longer and wasn't sure if he would even be in this state practicing. He was waiting on what was happening with some girl in his life. So the last thing I was going to do was stay with him and needed to find someone else after the pregnancy was done with. After all the problems I had with this doctor I called my stent specialist Dr "C", who I kept in contact with during all this time and went over the medicines with him. Also the Oxycontin wasn't relieving the pain, he said to take 2 pills 3x day if needed. He also straightened out the issue with the Viokase. At first he told me to mix ½ tsp in 4 or 8 oz of water, juice, Subdue etc. This made me really sick that I couldn't drink it. Being I couldn't tolerate this he called in a script for the Viokase in pill form. I take 2 Viokase 16 tablets with each meal now. He and other doctors (including my surgeon) do not know if they will really help me but they can't hurt.

I decided I was not going to go to Dr "B" anymore I decided to call Dr "K" who took care of me while in the first hospital over the summer to see if he would take me on as a patient now that I have given birth. We spoke on the phone and he took me on as a patient. He advised I go see a pain management doctor and also to have Dr "C" speak with the surgeon about what took place over the summer, how I was doing and if surgery was an option. I went to see a pain management doctor- Dr "F" who he recommended and I did like him. We spoke about different options for controlling the pain until they come up with a way to "fix me". Duragesic patches were not an option because I was allergic to even band-aids so would be to this also. The option I was going to try was a nerve block. On 11/17/03 I had my first and only nerve block. This nerve block was called a Diagnostic Block, which uses steroids and analgesics. We hoped it would work even for a little bit. I was to stop the Vicodin and only take the Oxycontin 2 pills 2x daily instead of 3x daily to see if the block worked. If so, at our follow-up visit we would have a plan of action to come off the pain meds all together, but he advised not to come off all of them at once. The block didn't work; it didn't relieve any pain not even for a day. I tried taking only the Oxycontin and fought the pain for a couple days but I then knew it didn't work and had to go back on all my pain medicine. I was to have a follow-up visit with the doctor but decided to call him the next week instead and we discussed the nerve block, pain still the same etc. I asked him if I would be a candidate for the Permanent nerve block where they use Medical alcohol but he said if the Diagnostic block didn't work at all that one wouldn't either. That was the end of nerve blocks for me. He said for me to come back in for a follow-up appointment and we could discuss other options. I did not return to see him as by now I had spoken to Dr "C" who did speak with the surgeon. They had met in NYC at the hospital and looked over my ERCP films from the summer as well as the latest 3D CAT scan films together. Dr "C" said the surgeon wanted me to call him and to go see him. On 12/2/03 we went to see the surgeon. He said now the scar tissue had built up enough over the past 1-½ years that it dilated the duct. The duct used to be about 1mm and now was between 2-3 millimeters. He now gave me the option for surgery as he has a better duct to work with. This surgery would be a revised surgery to my first, which was on 1/4/2000. He said the surgery will be easier for him this time to do and for me he said the surgery is the same -same pain, recoup time but I hope not as long, as this time I am in better shape then the first surgery. The first time I was 103 lbs on TPN, this time I'm 135 lbs and not on TPN. It would be a full ROUX-Y. He would open the pancreas gland, take the "roof" off the top of the duct and sew it to the pancreas. Then sew it to the abdominal cavity. He said then there would not be this tiny duct for the juices to flow through and that my body would not ever make that much scar tissue to clog it. After the surgery he is going to leave a tiny tube in coming out of my skin. This would be left in for a couple of months. The purpose of this is if I am saying I am experiencing more attacks he can see if it drains through this (instead of going through an invasive procedure) which would mean an issue with pancreas or if its just abdominal pain from somewhere/something else. He said most of my pain is pancreas pain but then there are other factors like nerve growth factor, transformation factor, scar tissue or "in my head".

Surgery is scheduled for 1/13/2004 (4 years 9 days after my first major surgery). I will have pre-ops done that morning at that hospital then the surgery later on. The doctor wanted the pre-ops done at his hospital- Community Hospital of Dobbs Ferry, Westchester not here on the island where I live. I have total confidence in my surgeon. He has done surgery in the past on me. For those that would like to know more: Except for a couple nurses I liked this hospital which is only 1 of 2 hospitals in New York State that does a large volume of pancreatic surgery and with a low morbidity rate (1% compared to the 30% Pancreatic resection has). My surgeon has written multiple books, articles on pancreatic and biliary diseases, has many degrees; he is the one who established the Laparoscopic Institute at this hospital in 1994, etc. Most notable in the public's eye is his official appointment as Consultant in Surgery to the New York Yankees. But for me what's important is his experience, his attitude that he will NOT do surgery unless he sees a definitive problem that he believes surgery can help you (not just cut you to cut you) as well as his caring ways. Over the years we have kept in touch, exchanged holiday cards to the most recent of the birth of my son, Brandon.

I am nervous about the surgery, especially now that I have a Brandon, but I know I have to do this. I know it's going to be a long, hard road with recovery but I have to have this surgery and finally get fixed. My husband and I decided get it done now rather than wait. My son is 4 months old now so he does not know what's going on, isn't crawling or running around yet, etc. Also for me the day in and day out of pain and all these pain medicines I have to take to get through the day to function. The surgeon also spoke about pain management after the surgery to get me off all the medications.

So now it's the count down to the surgery, heal and get on with my wonderful life with my wonderful husband and precious son Brandon.

Update: Jan 03 through Dec 2004

I have been working on updating this story since my surgery was a bit ago back, January 13, 2004. I haven’t been feeling well and had some complications along the way with writing it. I had written most of it and didn’t save it on a back up disk yet when we had an issue with our computer and I lost everything and now had to start writing it from the beginning again. So to all of you reading this and writing your stories save yourself time and frustration and as you go along save it to a disk.

This last surgery was 1/13/04 at Dobbs Ferry Hospital up in Westchester, NY. I was in the hospital for 1 week. Could have stayed longer if I wanted but I wanted out of there as fast as I could to be home with my infant son who at this time was only 4 months old. Not that I could take care of him yet at home but he could see me, hear me and know that mommy was around. It would also be easier on my husband not having to juggle the baby and me with driving 1 ½-2 hours up to the hospital each way to be with me on top of days he had to go into work. We also had my 2nd cousin helping out with watching the baby at our house and after I came home from the hospital she helped us out.

The Pre-ops were done at the hospital before the surgery, which is what the doctor wanted. The surgical report read the following of what was done:

Resection Distal Pancreas

Takedown Pancreaticojejunostomy Resection

Jejunal Segment Sphincteroplasty of dorsal & ventral pancreatic ducts w/exploration of pancreatic duct

Sphincteroplasty of common bile duct

Choledochotomy w/exploration of common bile duct

Duodenotomy

Fileting of pancreatic duct onlay

Roux-y Pancreaticojejunostomy (Puestow)

Laparotomy

Lysis of adhesions

The surgery lasted about 4-5 hours. He was able to open me up for the surgery in the same place where the incision was from the previous surgery in 2000.

After surgery I was put on Duragesic patches 150mg to control the pain, which is morphine after the initial morphine pump. This was the first time I had experienced the patches. The surgeon did not leave the tiny drainage tubing in that was coming out from my intestines that I would have had to go home with that he first talked about. First he thought I would have 1 tube but I ended up with 2 drainage tubes. There wasn’t much draining out of them at the time of going home so they took them out. I was worried about the procedure of taking them out due to my experience with my first surgery in 1/00 taking that drain tube out which was worse than the surgery to me. Back then the Demerol shot did not help the pain I had when they were trying to take it out. They actually had to take it out at 2 separate times/days and the second with a stronger medicine. For the main tube this time the surgeon hooked me up to IV in the room and monitoring machines and gave me some type of medicine. It was much better and I hardly felt anything. The other smaller tube his assistant was going to take it out the next day, I said no unless I get medicine. He gave me 100 demoral and I was just fine. But the surgeon found out and got mad saying that I didn’t need anything to take it out. I say to that…let me do this to you and see how you feel!

On 1/20/04 (1 week) I left the hospital with my husband. My mom was watching the baby @ her house and brought him home that night to us. It was so wonderful to see him. I was glad I didn’t have any tubes coming out of me that he possibly could have pulled on.

I felt the duragesic patch was good in helping to control the pain but I had other reactions from it. First I have issues with adhesives so I had horrible rashes, tenderness, etc. You have to change the patch every 3 days and I was running out of places not raw anymore from the previous ones not being healed yet as they suggested putting them on upper chest area. It also gave me issues that it wired me that I had problems sleeping. I was given Xanax for that which later I was told was for anxiety not sleep issues and it didn’t help any. Then they switched me to Elavil and I got a reaction, the itches from that. Then I went on Ambien 10 mg, which helped for awhile.

When leaving the hospital the doctor said to hook back up with my pain management doctor again and go see him. On 1/29 I saw Dr “F” for the first time in a long time and first time since surgery. The plan was to reduce the medicines (the patch). So for months we worked on this. I was slowly decreasing the mg of the duragesic under his care and supervision. In between all this I had a follow-up with the surgeon and he wanted me off this stuff fast and wanted me to go home and go right down from 150 to 100 mg. I did do that but with hesitation because I didn’t have my appointment with the pain management doctor yet who was the one in charge of this and working with me on this. I did drop to the 100 but when I asked the pain management doctor they wouldn’t have gone down so low so fast they usually go down in 25mg intervals. But now I was at 100 and wasn’t going to go back. I ended up getting down to 50mg. I was having withdrawals during this, sleep problems even with the Ambien; my skin was a mess from being raw from the adhesive. I just wanted off of the duragesic patch totally.

At my appointment on 4/2/04 I told the doctor I would not take the Duragesic anymore that I had to be switched to something else, it was making me miserable. So 4/2/04 was my last patch and he switched me to oral medications instead. The Oxycontin would take the place of the Duragesic patch which was 20mg 1 pill daily. I was also on the following: Vicodin for break through pain, Viokase panrease pills 2 per meal, Neurotin 300mg 3 per day, Antioxidant vitamin, Aciphex 20mg, Zyretc 10 mg, Reglan for nausea as needed.

On 2/10/04 I had a follow-up with the surgeon. He had bloods taken. My Amylase was 1,171 (should be 25-125) and Lipase was 130 (should be 7-60). He thought these levels were high due to still healing from surgery less than a month ago. He said I’m fixed; go on with life so I was.

After this I had blood tests done again to check the levels of my Amylase, Lipase and check my Anemia. On 4/1/04 my Lipase was 413, the Amylase 1,015 and Iron low at 3. The Iron was repeated again on 6/14 and it was 236. These numbers didn’t sound right to me and to the doctor so on 7/12 it was repeated again and now I was within normal range. In between this time I was taking Fergon Iron supplements, which didn’t seem to give me the migraines that straight Ferrous Sulfate did in the past.

On April 6, 2004 I called the surgeon. The reason was I had an attack in March, which I basically just ignored and wished it would go away. But now in April it was happening more. He called me back and I told him what’s been going on. He said “my glad wasn’t so terrible, this puts me in a terrible bind” He went to go say something about me being in the % of people having to live with this for their life but then stopped and asked that we set up an appointment for me to come in next week and talk.

4/12/04 we went and saw the surgeon (hubby, mom and dad). He basically said he did what he could do with the surgery and fixed the duct. He can’t explain why I’m still having attacks. Can’t explain why only sometimes even if I eat the identical food that one time I’m okay and the other I have an attack. He said there is an area in my pancreas that have more ducts, which are too tiny to allow him to operate on. He thinks I can survive for many years but my pain or quality of life may not get much better. Unfortunately the surgery didn’t help me as we thought it would. I would have never gone through with the surgery if I wasn’t told he thought it would fix me with the risks, the pain of surgery and healing and an infant at home. I always kept trying since 1999 procedures and surgeries, everything that the doctors recommended to fix me and now there is nothing left short of getting my pancreas out. That isn’t a good idea for many reasons, one of which I’m not a diabetic yet and secondly the organ itself is good it’s the ducts that are the problem.

After I left he called my GI doctor and Pain Management doctor to speak with them. We spoke later and he said they are both fabulous and to stay working with them, get off the meds and he wants me to see a psychologist to deal with that I have to deal with this for the rest of my life, depression, etc. He said Dr “F” has someone really good to refer me to.

On 5/12 I saw Dr “F” we spoke about all of this. He gave me the information for the neuropsychologist Dr “M”. I saw Dr. “M” on 5/25/04. This was just an overall informational appointment to get to know me and he gave me 3 tests to take come to complete and bring back next time. One was an Anxiety test, one was Depression test and the other was the MMPII. He wants me to write in a journal each day about my day, pain, ups or downs from previous day and pain medicines more or less taken that day compared to previous days. He also gave me a voicemail number to call everyday as many times as I want to check in with him tell him anything on my mind etc. This he said would help him if he sees/talks to one of my doctors and he hasn’t seen me in a week he has those updates keeping him informed. I go to him 1 x week for now. He said I have a team of doctors working with me together Pain Management, Primary doctor and him.

At the next visit 6/2 the tests were back and did show moderate depression. We spoke about adding a medication but I really didn’t want to hear it cause I was already on many medications that I didn’t want anymore. But then at the appointment with my primary doctor whom I have had for many years and trust very much we spoke about it and he agreed and I was put on Zoloft 50 mg for depression. I took it for 4 weeks and I thought it helped my ups and downs, moods, being snappy etc but I was having issues sleeping even with the Ambien. So they switched my Zoloft to Wellbutrin XL 150mg. After giving it a try it didn’t help at all so they switched me back to the Zoloft. Now as of 12/04 I am on 100mg of Zoloft.

So to sum up there is nothing further that can be done with my pancreas per my surgeon. I see my primary doctor for blood work, scripts, disability stuff; I see Pain Management for scripts for pain medicines and problems with migraines now; The neuropsychologist to work on relieving stress, biofeedback, depression etc.

Since around February-March I have been dealing with migraines everyday from 1 up to 3 a day. These are horrible and debilitating. I have been taking Fiorinol and sometimes the migraine goes away but then it just comes back again. I have tried a cervical nerve block with my pain management doctor, which didn’t help except give me more pain from the procedure for a couple days. I have tried all different oral medicines from Relpax to Imitrex and sometimes just end up taking the Extra Strength Vicodin. I have had trigger point injection shots in my neck as well. They do hurt to do and sometimes I have reaction that I cant move my neck for couple days and/or pain. Sometimes it’s not as bad. I think the Lidoderm patches work if you put them on right after he does the injections. My experience once was the patch was put on right after the procedure and that night I was in a lot of pain then I used the Lidoderm the next night also and I felt good and okay then. Every doctor has their own opinion why I’m getting these migraines. Most doctors are saying the migraines are coming from my neck with the spasms. You can and I can actually feel them in my neck so I know I have that. I was recommended to go to a chiropractor and as of 7/16/04 I started going to Dr “S”. He did X-rays and sent me for an MRI of the neck, which was negative. I also went back to the neurologist who I saw when I was pregnant and had fallen and hit my head, got a concussion but everything was fine then. He did a brain scan to see if there was anything because of the migraines everything came out fine.

So everything is muscular. During all this I had a Bone Density test done that didn’t come out fine. That revealed that I had osteopenia in my wrist and really bad in my hip almost osteoporosis. So I’m on supplements for that to. They gave me Fosamax 70mg that you take 1x week. The problem I have is you have to take it with whole glass water first thing when wake up without lying down with no other medications. I have to take my pain medicines first thing or I start getting the withdrawals and all so now the doctor gave me Miacalcin spray to be used everyday and I have no problem with it.

Between all this time some medicines have been added and some increased like the Oxycontin is now 30mg 3x daily and Vicodin is now Extra Strength. There are 13 in all.

During this time I have been on Long Term Disability. Thank God I had that. This was no thanks to my old job however. They were trying their best to not give it to me. When I ended up sick and in the hospital they tried saying that I didn’t apply for it along with they fired me (I was on probation still and it was 1 day prior). I did apply for it on the original paperwork; some paychecks even took out the premium etc. Thank God we fought them as we went directly to the company and after a long investigation I was to have LTD and was awarded it…Yeah! The next hurdle was Social Security.

My contract with Long Term Disability states you must apply for Social Security when it’s a year you have been disabled which my disability date is 4/30/03. So the process started 4/30/04 and I used a company the LTD carrier hired who I was told was really good and the LTD Company pays them I do not. That was a big plus, as we didn’t have money for that. It was a pain in the butt process with all the paperwork; waiting and all and this company did a lot on their end, which was great. I was being told that 70% of the population that applies are denied right away then you have to appeal by going to court which of course means having an attorney and all. Thank God I got someone good at SS who really looked into my case because pancreatitis and pancreas divisum was not even listed in the books. On 12/1/04 I found out I was approved for Social Security Disability! Yeah! Yeah! It took 8 months total to get an answer. Now I’m just waiting for everything to go through and get paid. Now, I have to apply (even though its automatic approval for him) for my son by going down to the office to fill out an application and bring with me originals of birth certificates, SS card, etc.

12/04 as of this month I no longer have Cobra insurance which was my primary insurance because it’s been 18 months which is the longest you can have Cobra for. Thank God I will have my husbands insurance at least even though I could use two insurances. I will be eligible for Medicare 10/05. Now my neuropsychologist decided he is dropping my husbands insurance so I have to find another psychologist who specializes in chronic illnesses, has openings etc. This has been a problem finding but eventually it will work out.

So that’s the end of my story for now. My last words are…here I thought surgery was going to fix me and that I would be a stay at home parent able to do everything normal with my son from driving him places, going places, playing all the time, anything we wanted to do. That is not the way it worked out for me. I am glad that I had that break in this illness that we thought I was okay and went and got pregnant with Brandon. He is truly a miracle and blessing. He is what keeps me going just like my pancreas friends sayings when I was going to go into surgery – I’m routing for you mom, you can do it. It doesn’t look like I’m going to be fixed in the rest of my lifetime unless maybe they come up with some new technology so I have to count my blessings for at least being able to have him, because it might mean we cant have any more children. Brandon Joseph is my miracle baby and I love him more than I can put into words. I still have to have my cousin here to help with the baby. Just never know how your day is going to start or go with your pancreas. I am basically in bed with either a migraine or pancreas issues almost everyday. I don’t drive so either my husband drives me to my doctors or my cousin will drive my car and me and the baby to appointments during the day.

If you would like to contact me please feel free to e-mail.

I wish you a pain free day today and always and I wish for a cure to fix all of us.

Click here to contact Cindy at pinocle424@yahoo.com

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