From Atlanta, Georgia, USA:
I HAD type 1 diabetes for approximately 18 years, from 1992 through 2000. I manipulated insulin to control my weight. I had the following during that time: nine laser surgeries for diabetic retinopathy; kidney failure and dialysis; vascular damage--calcified vessels; poor healing and neuropathy.
In 2000, I had a kidney/pancreas transplant which worked immediately. I no longer take insulin and have had perfect glucose and creatin scores every since, excpet for my BUN being high. All other blood tests are perfect. I had no side effects from the antirejection drug until recently. My skin seems a bit saggy, but I am also 46 now. I did have a fungus infection in my scalp immediately after my transplant and survived the Amphotericin treatment and have had CMV (cytomegalovirus) a few times. I have been treated for dehydration about three times in the hospital, as it is still difficult to drink appropriated amounts. I also developed a foot ulcer about six months after my transplant, which was treated by the burn/wound clinic at Shands Medical Center, the place I had my transplant. They were suspicious of osteomyelitis, but never conclusive. I put that on the back burner.
Three year ago, I developed Charcot syndrome in my right foot. A year ago, I fractured my right tibia plane due to a dog accident. In April 2005, the foot ulcer reared its ugly head. The doctor attempted to treat it for a month, but amputated my right fourth toe. It healed very well.
I'm currently taking Lamisil for bad fungus infections in all toes and nails. My liver panel came back normal on September 6. To assist in filing my toenails, due to the Lamisil healing process, I had a pedicure where the toe part went great but they sanded a spot on my heal that immediately became infected (staph-type) and a deeper ulcer-type spot the size of a match head developed and appeared black. One week ago, they were able to make the area bleed. The black spot, which was thought to be necrotic, has gotten smaller. It is no longer black, but still there. Measurements indicate it is getting smaller. A skin graph may still be a thought, if it does not heal, but it seems to be doing so very slowly., I will likely be on crutches another four weeks.
I also have osteoporosis, diagnosed in 2002. I take Fosamax, although I can't remember the amount off the top of my head. It's right on the borderline; it has not gotten worse. My pelvis is worse than the hip area, I believe.
Prior to the amputation, I had a cardiac work-up done to see where I stood, so to speak. I believe my results came back like a regular person. My pre-op vascular testing came back inconclusive because my veins are calcified, but they were that way in 2000 as well. I know that for the past four years my veins show in a x-ray. I'm not sure how long this has been going on.
I have worked out about two hours a day since the age of 15. If I have missed 20 days a year in the past 30, I would probably be overestimating until the past year. I no longer live in Florida and it is to cold in Atlanta for the level of exercise I did in Florida. I still work out about two hours a day, five days a week, but not as intensely due to the constant state of an injured foot. I see no improvement/or reversal of diabetic complications due to the transplant, but I imagine I would have had accelerated damage had I not had the transplant. I am scheduled for an MRA (Magnetic Resonance Angiography) next week just to see if, by chance, I have a blockage above the ankle, but I doubt it since I have no pain or symptoms associated with this sort of damage.
I currently take a baby aspirin, 2000 mg Omega Fish oil capsules, 1000 mg Flaxseed oil capsules per day, and one Lipitor tablet daily. My cholesterol is 140. I take 6 mg Prograf per day, 1000 mg CellCept twice times per day, 5 mg prednisone once a day, Fosamax (normal dosage), a multi vitamin, 500 mg calcium twice a day and will complete the Lamisil treatment next week.
Are there any natural type things or any cutting edge treatment for my current eye damage? I can see fairly well, but there are uncorrectable issues such as distortion, depth perception, color issues, and blind spots. My doctors have confirmed it has not progressed much, if any, since my transplant.
With respect to neuropathy and vascular damage, I think the vascular damage is especially critical. I am destined to lose a leg if the current trend continues. I can't feel much sensation in my feet up to my ankles and I have some damage to the anatomic nervous system. i.e., digestion and I sort of think it's hard to have a bowel movement sometimes. I'm not being treated for the last two symptoms at this time.
I currently go to Emory in Atlanta but, thus far, there do not seem to be any "new" treatments for my issues. I'm too young to be suffering these things and am otherwise in fabulous shape.
We take care of patients after kidney/pancreas transplantation at our institution, too. It is a great blessing to have the ability to go off insulin and have normal blood sugars. However, the vascular and neurological damage that you are describing may still progress as they were put into motion prior to receiving the kidney/pancreas transplant. There is now a rather substantial literature on what happens to diabetes-related complications after a kidney/pancreas transplant. It appears that there is some protection of the transplanted kidney from have the development of diabetes-related complications. With retinopathy, many of the symptoms you describe are known complications of laser treatments. Kidney/pancreas transplants have been shown to stabilize eye disease, but regression is not usually described.
One of my colleagues has the largest series of patients to receive pancreas transplants and she has found that vascular disease does not necessarily regress but does not progress at the same rate as those who did not receive a pancreas transplant. When you have the kind of problemslike you describe, in your feet, there is usually neuropathy, with loss of sensation, and decreased blood flow to the area. You need to know what your anatomy is in the area of the foot to see if there are critical blockages that can be treated. Good surgical debridement of the wound and off-loading it are important to help it heal. It is a slow process. Be careful. You may only have a window of opportunity to heal it and you want to do everything possible to do that. It will also be important not to traumatize your feet in the future, as a means of preventing further sores that are slow to heal.
Additional comments from Dr. Charles Garcia:I am encouraged by your determination to pursue the best diabetes management you can achieve.
I would recommend that you seek out a "Low Vision specialist" in your area. Your ophthalmologist should know of one and, if not, the local commission for the blind may provide a name. This does not imply that you are blind and I do not like the term "Low Vision. I prefer "Challenged Vision specialist," but these folks are trained to investigate your useable vision, color vision, etc. and provide a variety of aids to optimize your available vision.
The local Lions Clubs and the Internet may help you with finding a Low Vision specialist.
Original posting 29 Oct 2005
Posted to Complications
Last Updated: Tuesday April 06, 2010 15:10:04
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