Alma's Story

Hi, my name is Alma and I would like to join all the other Pancreatitis sufferers and tell you my story. I had to have my Gallbladder removed in 1985 due to abdominal pain and excessive vomiting. There were no stones but the Gallbladder had hardened like a rock. The Dr.’s did not know why this happened.

I was fine and had a very normal life and worked until 1994. At that point, I was having some mid-back pain and abdominal pain/nausea and heart palpitations after eating. I was sent to an endocrinologist who ordered a CAT scan. On the scan was noted a lesion on the head of the Pancreas. I had my first ERCP and let me tell you, my Dr did not knock me out...talk about pain! I told him he would not do that to me again without putting me to sleep. I also had to have a Pancreatic biopsy which was painful too. Thankfully, it was benign. I was told I had Chronic Pancreatitis.

Well, I guess all that fooling around in my belly set things off and they have not settled down since. Thank God I am a born again Christian because I don’t see how anyone handles this without His help.

Things progressed rapidly in 1995. I stayed with abdominal pain, nausea, weakness and fatigue. I was hospitalized many times with Pancreatitis and no one knew what caused it since I had never drank in my life, except one time at age 17. We all have to try it once don’t we? My GI was at his wits end so he sent me to Tulane Medical Center in New Orleans, LA.

I saw the head of the Gastroenterology department. He too felt he must do an ERCP. Ugh!!! His was worse than the first one. I swore off it, told him never again. Later I did let him do a total of three more within six mos. On the second one, again, I was only sedated, and he said when he touched certain parts of the Pancreas, "I danced the Labomba on the table." The third one I refused to have done unless I was completely knocked out so he had anesthesia put me out just as if I was in surgery...thank God.

I was found to also have Pancreas Divisum which is a congenital abnormality. He put me on eight Viokase with each meal. That was 24 tabs a day. I couldn’t handle that physically or financially so I was cut back to four with each meal. Still no relief. He also found a spot on the head of the Pancreas and thought I again should have a biopsy. Boy they do love to cause pain in people don’t they? Thank God, no malignancy this time either. I continued to go downhill...stayed in constant pain 24 hrs a day. I was just about ready to give up. I kept on, though, for my family.

I have a son and a daughter and I also adopted my niece when her mother, my sister, was killed at age 22 in an automobile accident. I now have 7 grandsons, no granddaughters (and will not have any as they have all had their tubes tied) ages 2-14. They are my heart. When I am sick I try to think of them so I can get better but sometimes thinking of them doesn't help cause it makes me remember what I cannot do with them. I married very young! Just call me Loretta Lynn and that should give you a hint how old I was. I was one year older than her.

The pain just would not cease so I was sent to a surgeon at Tulane. My sugar levels fell...one time while in the hospital it fell to 32 and I almost went into a coma. As the sugar levels fell the insulin levels skyrocketed. Thank God it happened while I was hospitalized or I would probably not be here today. Now they thought the spot was an insulinoma and I was operated on in 1995. No insulinoma but lots of scar tissue. They found the Pancreas was atrophying and sclerosing or in laymen's terms...turning into stone & destroying itself. Still to this day no one knows the reason why. Thank God I did not have to have the Whipple procedure.

After the surgery my abdomen constantly stayed distended. I actually had to wear my daughter’s maternity clothes since my stomach was so big I could not wear any of mine. I went back to the surgeon and told him something was wrong as I had not been distended like this before the surgery. He said it was just coincidence. YEAH...RIGHT!!!. He put me on total TPN...no food allowed for 8 weeks. He said he wanted the Pancreas to rest and do no work at all. I did this at home and became very proficient in IV solutions. My home health nurses said I knew more than they did. I could only have ice chips. Now I love eating ice chips. When I have to be NPO except for ice chips it does not bother
me. I really had no hunger during this time. I even gained 30 pounds because of the lipids which is pure fat that was in the TPN. I lost it after I stopped the TPN. The distention and pain continued.

He wanted to try a nerve block and let me tell you something do not, I repeat DO NOT let anyone do this to you. They have to keep you awake as they stick needles in your spine to find the nerve that goes to the Pancreas. This was the worst pain yet. The block lasted only 4 hrs. They wanted to cut the nerve to block the pain. I refused to have the nerve cut because I figured this would destroy the Pancreas and I did not want to do that.

He could not do anything for me so my GI sent me to a local general surgeon. He found that I had a blockage in the duodenum and I had to have a stomach bypass called a gastrojejunostomy. One good thing about that...I was told once that was done I would not be able to have any more ERCP’s. Finally, I could eat again without too much pain although the pain has never gone away. Being able to eat without pain only lasted 3 mos. My Gastroenterologist says that when the Pancreas finishes destroying itself I will no longer have pain but then I will be a severe diabetic. I don’t know which is worse. I still stay in constant pain from all the adhesions and the pancreas and stay nauseated. I was in the hospital in
1996 for 156 days...always on the same floor and the nurses got to thinking I just wanted Demerol and one in particular told me nothing was wrong with me. She no longer works there. I learned to fight for my rights. Sometimes I think the nurses feeling that way about me was almost as bad as the disease. Now however, on the 4th floor, my floor I say, they tell everyone I am family. I tell them I own a room at Gulfport Memorial Hospital. Heaven help me though if I don’t get to go to the 4th floor. I have to start all over again explaining to the nurses why I need so much Demerol. I am allergic to morphine.

During all these invasive procedures and surgeries I developed MRSA which is Methacilin Resistant Staph. I had a fever of 105 which the nurses at first did not believe was that high cause it shot up so fast..30 min. earlier it was just 99. They took my temp rectally to be sure I was not faking it!!! The nerve of them!! That really angered me. Anyhow, it was 105 and I had to be put on a cooling blanket for 3 days and very nearly died. The only antibiotic to cure it is Vancomycin and it is getting to where it does not help much.

I was told by my physician that once a person has MRSA he always has it dormant in his system and it will flare up during illness or stress. Boy, it has done that!

I also developed an infection in the mitral valve of my heart due to this and blood clots from so many central lines. I virtually have no veins to use any more, hence the central lines. I have had about 6 infusaports inserted that my body has
rejected each time. I had 2 Hickman catheters inserted for the TPN. Now I am getting blood clots every time a central line is inserted and must take Coumadin. I just returned from a 2 week hospital stay yesterday, 9-21-99. This time the pain was under my left rib cage and felt like someone was stabbing me with a knife! Usually I feel like I have been hit very hard in the stomach and don’t dare touch it. My Dr. laughs at me cause when he touches it I reach up and grab his hand...it is only instinct. They were never able to get an IV line started during this hospital stay. Well, they did get a triple lumen in the left groin but I got clots again and it had to be taken out.

I had a CAT scan which showed the Pancreas is definitely decreasing in size but still has a long way to go before it is finished destroying itself. I had a barium swallow and was told the stomach was not emptying again and would probably need more surgery. I decided not to at this time due to all the problems surgery has caused.

If you can make it without surgery I highly recommend you stay away from the knife. I feel I got worse after surgery.

My husband has been wonderful throughout all this. I don’t know if I could have made it without him and I don’t know if I would have handled it as well had the shoe been on the other foot. We have both had our bad times with it but we have adjusted. I do HATE this disease. I cannot do the things I would like to do. I cannot attend my church as much as I like. I love to sing gospel songs for my church family but do not have the lung capacity I used to have so I don't get to sing as often as I would like. I do try to sing as often as possible though because it helps me to get through the bad times. Singing also helps keep me closer to my Lord.

My grandchildren have learned as early as 1 yr. of age that Maw-Maw is sick all the time and goes in the hospital a lot. They just crawl up in the bed with me and we watch TV together. They love to let the bed up and down, but they can only do that after I get to feeling a little better because when I first go in I don’t want to even be touched because of the pain. All you have to do is tell them when the nurse comes in, whoever is in the bed with me gets the injection and they hop up instantly when the staff comes in. It is quite funny to see how fast they can get out of that bed! If just an aide or the cleaning staff come in they are out of that bed like a shot. One good thing, they have no fear of hospitals and people who are sick. I just wish they did not have to learn it the way they did. I have been able to travel a little recently and that has helped. I love Colorado! It is my therapy. I can forget my problems for a little while. The first time I went I made the comment that God was tired by the time he made Mississippi, where I am from, cause he used all his handiwork in CO.

But God is in control and is very good to me. I am also a twin but my twin is never sick....lucky girl. We are paternal which means we do not look alike. We developed from 2 separate eggs.

I now have had a Hickman catheter since Dec 2001 and so far have only had one bad infection with it. I hope that luck continues. The pain does not seem to get any better but at least I can eat. There are those I know that have to have a feeding tube. They wanted to put one in me last year but I refused. I told them as long as I could eat and taste the food I was going to. I am staying away from knives if at all possible.

Update

I was in the hospital again for 2 weeks during the last part of July and first part of August. I had another one of those dreadful staph infections in my bloodstream. One of my GI doctor's partner wanted me to have the Hickman catheter removed but after speaking with the thoracic surgeon who put it in, I decided to keep it awhile longer. It is a life saver when you don’t have decent veins for the IV’s they put in you. We are watching it closely and so far it is still doing good. I will have had it in one year in December.

Recently I have been having problems with my heart rate being way too fast and cannot seem to get my BP down to a fairly decent level. My cardiologist ran all kinds of tests that show my heart is ok. He feels the rapid heart beat and elevated BP is due to the continuous pain I am always in. We are going to address that when I return to see my GI at the end of the month. I don’t know what we will do about it. I have taken the Oxycontin twice and it really helped me better than the other pain meds because it is time released. It is extremely hard to get it though due to so many people abusing it and dying from it. Those of us who use it right are paying the price for those who abuse it. It doesn’t seem fair does it? I imagine my GI will refer me to a pain specialist but I will not under any circumstances allow them to do another celiac plexus block on me. I will keep you posted as to what we decide to do.

Any ideas would be greatly appreciated..... (update on the plexus block) I consulted with a pain specialist but he said he has not had much luck with the plexus block and does not recommend doing them anymore.

December 8, 2002

Well, more hospital stays! I was in the hospital again for 5 weeks to the day! October 24 thru November 21. Yep, I have my own address there now!! I had an in infection in the blood once again. The doctor's looked and looked for a source of the infection and concluded it had to be the Hickman catheter. The doctors took out the Hickman catheter and put in a triple lumen central line in my left groin. Well, of course I ended up getting 2 blood clots there which made my stay longer than anticipated. They had to take the central line out so now I have no lines in me. Hopefully this will keep infections down to a minimum. My GI also had to do the balloon procedure on my gastrojejunostomy, which keeps closing up. He goes in via endoscopy and then inserts a balloon and inflates it to re-open the bypass.

This stay was a horrible stay in my opinion. It seems (at least in my mind) that the staff was doing any and all things to make me unhappy. Of course I know that is not true but it sure did feel that way. Guess it was just because I was there so long that I was getting paranoid.

One incident I remember is that I would not let the nurse's aide’s draw my blood. At this hospital they are trained to do that. Well, with no veins I do not let just anyone touch me with a needle! I do not feel aides should be drawing blood to begin with. The director of nurses informed me that this was the policy of the hospital. The aide tries then the nurse tries and then if they cannot get the blood, the lab can be called. I simply told her I did not agree with this policy, it was a bad policy only meant to save money by not paying big bucks to real phlebotomists and that I would have no part of it. She could not force me to allow aides to draw my blood so the lab drew it for me. Ridiculous things to make a big to do about! From now on I will demand that my doctor put in my orders for lab to be the only ones to draw my blood. That way the nurse’s cannot say anything about it.

Then one night my nurse was an agency nurse. This is a nurse who is not on staff at the hospital but is hired by an agency. They are not allowed to have the keys to the narcotics so you have to wait forever for them to get one of the staff nurses to get your pain meds. This one particular nurse was an hr late with my pain meds. I had buzzed and buzzed. The housekeeping dept was stripping the floors that night. She finally came in and told me they would not let her get on their soapy floors. I told her I would be turning them in to the housekeeping dept the next morning. Well, I did that and found out 3 days later that this nurse lied just to cover her butt! She simply was not interested in caring for her patients the way they were supposed to be cared for. I then turned her in for lying to me and called the director of the housekeeping dept that this nurse lied to me and apologized for creating any problems with her staff.

Then one night, it seems like they are only there at night, I had another agency nurse. She was constantly an hr late with all my meds. By this time I was off the injections and on pills. But I was supposed to have a Lovenox injection though at 4 am. This is a blood thinning medication given in the fat of your stomach. I buzzed her at 6 am and ask her when she was going to bring my shot. She said that there was no shot ordered. I told her I had been taking them at 4 am each morning. She goes back to the chart and comes in about 20 minutes later saying, you are right, and gives me the shot...almost 3 hrs late!

Had enough? Well, just one more little thing. I was there so long I had 8, yes you read it right, 8 student nurses during this stay!! I was so tired of student nurses I thought I would puke. Usually the teacher from the college will come to you a few days before it is time for clinic for the students and ask if it is ok for them to be your nurse for that day. This time I was never asked. I would just be awaken at the change of shifts to a student nurse saying hello, I am your student nurse for today. UGH! If it had not been so many I might not have minded. I think out of respect they should go back to the practice of asking BEFORE being assigned to a patient. Oh well, enough complaining.

I got home on the Tuesday before Thanksgiving about 11:30 pm. I was awakened at 6:15 am, (yes, I remember the time exactly!) with the severe knife like stabbing pain under my left rib cage. It has been hurting 24/7 and it has not gone away yet! That has been over a week and a half now. I saw my GI who said the adhesions I have are pulling the pancreas to such an extent that I cannot get pain free and will need surgery to remove them. Oh joy! Another hospital stay....

December 14, 2002

Well, I saw a new surgeon this past week and he does not want to touch my abdomen. He wants me to wait and see the surgeon who originally operated on me and did the stomach bypass. I hope I can stand the pain until Jan 16, 2003 cause that is when my appointment is. Guess I will just have to grin and bear it huh? Sometimes I want to tell them if this is your wife, mother or daughter hurting this bad what would you want done for them. I will keep you posted as to what my regular surgeon tell me. Till then...hope you have a pain free day.

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