I had my transplant clinic visit today. It's been 8 months since the transplant and I can't believe how the time has flown! All my numbers showed that the new kidney is doing GREAT!! Yeah God! My Creatine is at 1.5 which has been lower but is due mainly to the elevated Prograf levels of the last 2 months. It's coming down and the doctors are pleased and say it should come down some more with time as long as my Prograf level remains in the normal range. The doctor told me today that my kidney should last me a good long time as long as I take my medicine. He stressed that a couple of times. I am amazed at the number of people who for one reason or another change their own medicine routines. Medicare after a transplant is practically an automatic thing and for 3 years it becomes your primary insurance and the medical insurance you had before the transplant is known as your secondary. After 3 years this changes and Medicare becomes secondary with your personal insurance as primary. Apparently under Medicare you can choose to option into the Prescription plan and this saves people alot of money on the medications. When your personal insurance becomes primary if a prescription plan is not included or the benefits for medicines aren't that great, the cost becomes prohibitive of getting the medicines. People try and space out their meds so that instead of taking the meds 2x a day they try 1x a day or even once every other day. After a time rejection becomes an issue and a good number of people permanently lose the kidney. If you are a person who is struggling with this issue of trying to make your medicines stretch. DON'T!!!!!!!!!!! There are programs I am told available to help with the cost of medicine. We are blessed in the fact that we have good insurance and didn't see the need to add the Medicare plan. We are still trying to get me optioned out of Medicare and I'm keeping my fingers crossed that it will resolve smoothly. Currently our insurance has sent 2 letters saying they have received notification of me having another insurance. We keep telling them we have not taken the Medicare plan and of course have never used it either. I'm hopeful this will all work out eventually. The doctor said some people just get tired of taking all those pills and stop. I reassured him I had taken needles everyday for over 40 years (well minus the time on the insulin pump) and that taking pills was nothing compared to that and I had waited too long for this kidney to let it just go by the wayside. UAB has added another kidney transplant surgeon so their total is 4 now with the 2 liver transplant surgeons filling in when needed. On one hand this is great news for Alabama but on the other hand it's sad that their is such a need for another surgeon. Alabama ranks 4th in the nation for Chronic Kidney Disease patients. This visit was what I called my 3 month leash. It had been 3 months since I had last been seen by the transplant clinic. The doctor gave me a 4 month leash so that my next visit would coincide with my 1 year mark. After that if all is still going well I'll go to a 6 month leash and then yearly. And the best news yet is I'm to have my blood drawn every other week thru November and in December I can go to monthly!! YAY!!!!!
My fellow Musketeers are all doing well and I got to have lunch with one of them today while in Birmingham. The other Musketeer (Ann) had her 6 week clinic visit on Wednesday and was told depending on the CAT scan results that she may be able to stop her every other day infusion therapy for the mold in her lungs. What great news for Ann!
Because of the kids having classes today, Bruce was not able to go with me to Birmingham. I really miss him when he's not there on these trips. The last 13 years we have traveled together so many times to Birmingham that when I see the skyline of the city and he's not with me it's very sad. After being evaluated for a transplant 10 years ago, everytime we would drive past the hospital parking garage I would think to myself, "One day we'll driving into there for my transplant". As I came upon the garage today I was overcome with tears of graditude and relief. When you go through stressful times in your life, mine fields are set up and sometimes you never know when you will hit a trip wire to set off the emotions of that time. Obviously the UAB Hospital 4th Avenue Parking Garage was a trip wire for me today.