This is the follow up to my long post about what has been happening to me. A quick review. I was told after I did the whole evaluation progress in 2020-21 that I was overweight, BMI too high, and that I had an abnormal cardiac result from the nuclear test that I had done. I had a report or 6% ischemia on my heart, which is basically a stiffening of the heart wall. They decided to start my time, however, I was placed as inactive.
I kept getting letters saying the BMI level required for transplant was less than 40; even receiving one in February of this year. Then, in June, I get a letter from the transplant group saying the BMI was less than 45. MY BMI was less than 45 for the last four years. I called the transplant nurse who was so casual about the whole thing and mentioned they changed that BMI a while ago. (I have letters that did not indicate that). Then she said, well you still have cardiac issues.
I immediately called my cardiologist who said they would rerun all the tests. (I made this sound easier than it was because at first the cardiologist did not want to subject me to another nuclear test. I had to explain why and then he relented) The transplant team agreed that if the cardiologist cleared me, they would make me active. The letter I have said "priority 1". I have this in writing.
I spent the summer getting the weight off that happened from the amlodipine and hydralazine my Nephrologist put me on. In early June, I had gained a pound a day and my legs looked like tree trunks. When I saw the cardiologist, he took me off them. I lost the weight and have kept it off putting me back to my lower BMI.
The tension of doing all the tests was terrible. Every test was a waiting game. First it was a CT. That came back, but no one called me on it. Then an Echo. Never heard back on that, either. Then two days of nuclear tests. I was completely unhinged with that. Get a call from the cardiologist the day of the last test, there was nothing wrong, the ischemia was gone, all functions were great, arteries clear and functioning, and he cleared me for transplant.
I immediately messaged the transplant coordinator and said..."well, now what?" She said that the results would have to go to the transplant surgeon for final approval and not to worry. The transplant team was not going to meet until two more weeks, she would let me know the day after of their decision. Like I said, this was sooooo stressful.
Today I got the final decision. Talk about ups and downs. She starts the conversation off with a cryptic comment about me telling my nephrologist what happened with the BMI. She was pissy, but I said that I did tell my nephrologist about the BMI issue. WELL.....NOW....the BMI was NOT an issue and that it was all about the cardiac issues. I just kept my mouth shut. They were not going to do anything about the cardiac issues because my weight was too high. I have it in writing. Then she starts in about an old dermoid cyst I have had on my ovary for 30 years.....thirty years. They never wanted to put me through surgery back then when they discovered it and NOW they are concerned. We went around on that and she is sending it to my PCP to decide what to do. I can tell you exactly what will happen, NOTHING. 30 years folks.... I even named him Igor. Leave him alone.
Then the one bright light in the whole situation. I am clear and being placed as active on the transplant list. My two years prior are counting as time served. I was elated......HOWEVER....she just couldn't let it be. She goes on to say, "Well, because you are Blood type A, it could be four years before we find a suitable kidney. YOU could hear the air coming out of me as I deflated completely. She goes on to say that your nephrologist wants you to start dialysis asap. I came back with, "What about the BMI condition if I start dialysis it has to be below 40? She replies with, "we want actually a lower BMI but the transplant team has agreed to your BMI even with dialysis." I have it in writing.
I feel like I have been B*tch slapped. Yes, no, yes, no. I will try to work all this out in my head. I am angry and joyful and then back to angry. One thing she pointed out was at one point my BMI was posted this summer at a higher BMI. I told her that was when I was on the BP meds that made me gain weight. That was true. But what I did not get into with her is the ineptitude of the techs who weigh you when you see the doctors. I have stopped allowing it when I can. The reason is that multiple times this summer, I had someone add four pounds to my weigh instead of reducing it for clothes. One nurse said they would take off for clothes and then did not change the record. The tech who did my echo added four pounds to my weight with clothes putting me at the breaking point of BMI. I actually called her and made her change it. She did on some of the records but not all. I even explained my reason and she still screwed it up. STRESSSSS
I see my Nephrologist at the end of the month. She is pushing hard for me to start dialysis, which is why I explained to her the weight issue. Since they have taken the BMI issue off the plate, I will probably start HD training next month or so. My labs are scary... GFR of 7. However, my Cystatin level was 12. I am going to redo the labs before I see her because I do not trust them. I went without fasting or hydrated. AND it took 9 hours before I got results. Where the heck did they go that it took that long to get results? The longer they sit, the worse the results. But in the end, I know that it is getting time. I feel great. No edema, not symptoms at all. I still am going to my aerobic and walking two miles a day. (By the way, I know that is why the cardiac results were what they are...I worked my butt off the last three years)
My journey continues. If I could change anything about the process for kidney disease it is the callous concern by the medical field of someone who is fighting for their life. One slip of a weight or lack of allowing for testing can change someone's chances for a better outcome. I have been fighting this disease and processes connected to it for close to six years now. In 2018, my neph said I would be on dialysis in six months. I have educated my own Nephrologist on issues she did not seem to get, especially from a patient perspective. I will continue to fight as I approach home dialysis. My Nephrologist keeps saying that it will change how I feel, and I will feel better. I don't feel bad now. I responded to her with this, and she lost her breath and could not reply.
I said, "I will be going from living to just staying alive."
Have to start dialysis soon
Preparing for transplant
Renal diet
Need help understanding my mothers situation
