Well, maybe not paradise exactly, but we'll get to that. Many Zity.biz friends and acquaintances have asked about how my progress toward a kidney transplant is going. First, I'd like to thank you from the bottom of my heart for your concern and support. When a member of the medical cadre asks if I have a support system, I tell them I have the best one in the world. I don't elaborate but I'm thinking of all of you! As I've said before, the thoughts and good wishes are just as valuable as the doing.
I've never done this before and normally I wouldn't but I'm going to mention the names of the facilities where I'm being evaluated for transplant. I have no financial interest in any of these entities and I'm not promoting them nor am I warning anyone away from them. It's just easier to track my progress and to describe the differences if I can call them out by name. So here goes:
Medical University of South Carolina (MUSC), Charleston, SC
Georgia Health Sciences University (GHSU), Augusta, GA
Carolinas Medical Center (CMC), Charlotte, NC
If you've read my previous blog posts, you know how my initial experience at MUSC went. Nine months from initial referral to evaluation, great evaluation and an interview with the Ice Queen of Social Workers. The final outcome is that on April 2, I was placed on "inactive" status on the UNOS waiting list. That means that I am accruing waiting time but I will not be matched to any available organs. The only way to become "active" for MUSC is to a) become a dialysis patient or b) undergo a cardiac catheterization so that the surgeons are assured that I can withstand up to six hours of surgery and almost eight hours of anesthesia. A cardiac cath has risks for those patients with end-stage renal disease; in about 1% of the cases, the patient suffers total and irreversible kidney failure with of course requires dialysis. So we'll come back to MUSC later.
This past Friday, April 20, I had an evaluation at GHSU. I'm sure it's small compare to some of the "big city" medical centers but it's the largest medical facility I've ever been to. The hospital campus covers four city blocks and for a hospital, it's lovely. I make it a habit to walk 1.5 miles every day, but I think I doubles that on Friday. I had an interview and physical exam with a wonderful PA who is a fellow dog fanatic and as it turns out we know a lot of the same people in the dog world. He went over my medical records and history and came up with a surprise. I have been classified as a Type 2 diabetic but he feels that my symptoms are more aligned with Type 1 diabetes. He ordered a urine test to check for C-peptides and that will give a more definitive answer. He is the only medical practitioner that has ever asked me to remove my prosthesis so he could examine my amputation site. He assessed my mobility so that they know whether or not I'll need PT after transplant. It won't matter one way or another, I'll be about as useful as a wet dish towel after surgery.
Next, I went down the hall and met with the transplant pharmacist, she reviewed my current list of medications and asked me how I feel about taking medications and whether or not I'm compliant. It's real simple; on Sunday morning I divvy my AM and PM meds for the week into the pill box and I have another one for the meds I take before bed. I take my insulin injections before meals and before bed. Yes, I am compliant, it's just not a big deal. I take the meds and I stay relatively healthy. I know what my meds are and the dosages. None of this "I take little pink pills for blood pressure". The pharmacist told me about the immunosuppressive drugs and the drugs I'll be on to prevent bacterial, viral and fungal infections. One of them has to be taken six times a day, sounds like I'll need another pill box.
Then the financial and fund-raising specialist. I didn't spend much time with her, I have full medical and drug coverage so all my costs are covered (thank heavens). GHSU is the only institution of its kind that has a full-time fund-raising specialist on staff. Pretty cool because that can be the hardest part of transplant.
Downstairs to the 2nd floor for a chest and abdominal rad, a kidney ultrasound, 20 vials of blood drawn (this time with the correct venous access for the job), and two urine samples (no problem there, I could have flooded a pond by that time). Last but not least, and EKG and an echocardiograph. The echo was very interesting and shows that I have a "left atrial abnormality" but the tech told me that's a very common finding and for the most part, it's insignificant. A cardiologist will review the results and if it's a problem, they'll let me and my cardiologist know.
Finally, back upstairs for an interview with the attending nephrologist and the social worker. Both went well and I was done for the day. The only snag was the nephrologist trying to convince me that I should guilt-trip my daughter into being a live donor. I finally told her that we have discussed it as a family and that she and her husband have made their decision. I have to respect the decision that they've come to, period.
End of Part I, Part II to follow shortly...