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Battle With Diabetes
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Kidney Failure

     Dr. Soller told me, shortly after I started dialysis, that I should consider getting put on a transplant list.  I went to Hershey Medical Center and Johns Hopkins to take tests to get on the transplant list at both centers.  I had been informed that I had the option of getting a kidney and pancreas transplant because of my age, the fact I was a Type I Diabetic, and in relatively good health otherwise.  I opted for this choice over receiving just a kidney transplant.  By receiving both transplants, the new kidney would have a better chance of surviving and lasting longer by eliminating the Diabetes that eventually would do the same damage as it did to my original kidneys.  The day I went for orientation on kidney and pancreas transplantation, they did a preliminary examination and took blood for Lord knows how many tests just to qualify to get on the list.  They took 19 vials of blood!  I had to return a week later for a day of various other tests to check my bone density, bladder control, heart strength, etc.

     On March 7, 2001, I received the call from Johns Hopkins at 5:30 am that a kidney and pancreas were available.  I rushed down to Baltimore (which was a two-hour drive) and surgery began at 10:00 pm.  The reason for such a long period of time between the call and the surgery was because the kidney I received was a perfect match.  Perfect matches are rare, but usually the most successful.  When a perfect match is found for anyone on a transplant list, the person waiting is automatically moved to the top of the transplant list.  Unlike other matches, perfect matches are rushed to any part of the country.  The kidney and pancreas had to be flown in from Kansas City, KS.  I was in surgery for ten hours.  The kidney and pancreas transplant went well thanks to Dr. Robert Montgomery and his transplant team, but I had other problems.  I was in the hospital for 6 weeks and went through two more surgeries to fix bleeding, an infection, and intestinal problems.  I had suffered muscle and nerve damage to both of my hands.  They are not sure if it was because of the several surgeries, the anti-rejection medication or both, but the damage to my hands is permanent.  My post-transplant doctor, Dr. Kraus, discovered that one of the anti-rejection medicines might have been causing the problem and switched me to a new medicine.  The shaking, numbness, and occasional pain in my hands eventually disappeared. 

     After being released, I was readmitted a week later for a slight pancreas rejection.  I stayed in the hospital for a week receiving daily IV's of steroids.  I was then released and was healing until the end of May that same year.  I was rushed down to the hospital again due to severe abdominal pain and had one last surgery in which I had my appendix removed.

     I am grateful to say I am doing ok today.  Technically I do not currently have Diabetes since I am not taking insulin injections, but that will not stop me from making every effort to see an end to this disease.  Even when I was tired from dialysis treatments, I insisted on walking in the America's Walk for Diabetes (now renamed Step Out: Walk to Fight Diabetes).  I never missed a walk since it started in 1991 in my area.  I decided to start walking in the Kidney Walk in 2009, to help raise money for research and education in kidney diseases and kidney transplantation.

     Even though I had a double transplant, my problems are not over.  I have had several side effects from the anti-rejection medications.  I must take these medications for the rest of my life and they are expensive.  Information on my medications is on the Prescription page of this web site.

     I have osteoporosis now and I am only 46.  I was diagnosed with it in November 2001.  The severity of the osteoporosis was not fully realized until June 2002 when I fell down and broke both of my wrists.  The fall was not a big fall, so the breaks would have not occurred if my bone density was normal.  I spent four weeks with casts on both of my forearms and partially covering my hands.

     I had internal bleeding in February 2003.  I was hospitalized.  I had lost about 40% of my blood volume.  They did three blood transfusions and ran tests to locate the bleeding.  Unfortunately, because the bleeding stopped, they were unable to locate it.  They did both an upper GI and lower GI test to see if the bleeding was in the abdomen or colon and a barium test to see if it was in the small intestines.  I was sent home and took iron pills for a period of time due to anemia.

     I had a cataract in my left eye and had surgery to replace the lens in July 2003.  I now have glaucoma in my left eye.  Thanks to Dr. Dailey my vision is better in the left eye than it was before I had developed the cataract.  I was taking Prednisone at the time.  This medicine may have contributed to my cataract developing as fast as it did.  I was put on this medication right after my transplant surgery and thought I would have to take it for the rest of my life.  After discussions with Dr. Kraus at Johns Hopkins, my Prednisone was slowly reduced and eventually stopped in August 2008.  I do have a cataract in my right eye but I had surgery to remove it in June 2009.

     In April 2004, I was feeling weak and realized this was the way I felt when I had internal bleeding in 2003. Dr. Soller had retired.  My new Nephrologist, Dr. Rothman sent me to a Gastroenterologist who had me take a capsule endoscopy test to see if they could find the area of bleeding in the small intestines.  This test involves swallowing a camera pill with a transmitter and light source that takes tens of thousands of pictures over an 8-hour period.  Ok that might be an exaggeration.  I have no idea how many pictures it takes, but it is a lot.   The pill transmits the pictures to a data recorder worn around the waist. 

Wireless Capsule Endoscopy
Capsule Endoscopy Receiver and Data Recorder
Walking around for eight hours with this belt on kind of made me look like a terrorist.

     The results of the capsule endoscopy take three weeks to analyze due to the enormous number of pictures taken.  On the day I received the results, the doctor found lesions in the small intestines and believed that they were caused by CVM, a virus that affects people on immuno-suppressive medications for a long period of time.  I may have contracted the virus from my transplants.  That same night I had internal bleeding but much more severe which put me in the hospital for three weeks.  I was transferred to Johns Hopkins Hospital from my local hospital.  This hospital stay included twelve blood transfusions before the bleeding stopped.  They performed the same set of tests that were performed in 2003.  When all the tests came back negative, they did their own capsule endoscopy test to verify the bleeding.  They gave me a regiment of expensive antibiotics for three months to kill the virus.  A one-month supply of this antibiotic cost me $1,600.  I did not have prescription coverage, so I had to pay for it out of my own pocket.  They also changed one of my other anti-rejection medicines to one with a coating to better protect me from future bleeding problems.

     In August 2004, I spent a week in the hospital due to a mild rejection of my pancreas transplant. They gave me a new type of IV cocktail to treat the problem, which worked very well.  It was later discovered that one of the blood pressure medicines I was on was causing high levels of Amylase and Lipase in my blood.  These are indicators of pancreatic rejection, but this was coming from my original pancreas not the transplant.  After the blood pressure medicine was changed, I no longer had rejection readings in my monthly blood tests.

     I had one more follow up capsule endoscopy in October 2004 to make sure the lesions healed.  It is not every day that someone can say they swallowed three cameras.

     I spent most of April 2005 in the hospital due to fluid collection around the pancreas transplant that was infected and caused my temperature to reach 102 degrees.  Surgeons tried two procedures to go in and drain the fluid.  The surgeons were unable to safely reach it using ultrasound equipment or CT scans, so they had to perform surgery.  They could drain the fluid and then put me on a treatment of IV antibiotics.  The third week I spent receiving the IV treatments three times a day while staying in a nursing home.  My health insurance policy would not cover having a visiting nurse come to my home to administer the IV's.  There are not many people can say they were put in a nursing home at 37 years old.

     My last visit to the hospital was over Thanksgiving 2005.  This initially was not due to my transplants or medications.  Earlier that month, I was admitted to a local hospital after I had severe pain in my abdomen.  Tests indicated that my pain was caused by my gallbladder and that I would have to have it removed.  I scheduled an appointment at Johns Hopkins where the surgeon scheduled the surgery the day before Thanksgiving.  He decided to use a laparoscopic (minimally invasive) procedure and repair a hernia at the same time.  Unfortunately, during the surgery, problems occurred and the gallbladder needed to be remove using a separate incision.  He fixed two hernias that occurred from the six previous surgeries to the same area over a four-year time period, removed most of the scar tissue left by those surgeries, and put in permanent mesh to hold it all together.  Dr. J. Kevin Melancon did a fantastic job with this surgery and now my belly button is an innie for the first time.

     One thing many people don't realize is that a transplant of the type I received is only a temporary fix. The transplant will last about ten years on average. With new medicines and rapid medical advancements, hopefully the transplants last longer.

     For the rest of my life I do have to have blood taken once a month to check for rejection or other complications.

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