Living on the edge

Please forgive me if this turns into a long and rambling post. My frustration level has reached a peak, and despite a more-vigorous-than-normal morning workout in the pool I am still stewing.

In the past three weeks, I’ve had two transplant center re-evaluation appointments, a two-day chemical stress test followed later by a separate appointment with the cardiologist for the results, provided more than 25 vials of blood (in addition to two IV’s for the stress test), and sat through three EKG’s and one chest x-ray. Plus, I drove home two hours from Toledo transplant center in 93-degree heat with no air conditioning in my car after the car baked for five hours in the sun while I was at the appointment. And somewhere in there I had an all-day accounting seminar. All while trying to keep up with my exercise routine and accounting work.

After four years on the transplant list, now with listings at three centers, I’ve come to accept all of this as part of the process, along with the hassle of making sure each center gets copies of all test results Four and a half years ago, on the day of my fistula surgery, I set my sights on a pre-emptive transplant. Like MooseMom, I’ve always been more afraid of dialysis than a transplant, even though both have risks. It was a choice I made, and I accept all that comes with that choice. I am fortunate my kidney function has remained stable and I am not facing dialysis in the near future. In January, I will have four years accrued at University of Wisconsin, just shy of four years accrued at University of Michigan, and a year accrued at University of Toledo. I never expected to stay off dialysis this long, and am very grateful I have options at this point.

I knew going into the Toledo appointment that I was a few pounds over their weight limit. I worked as hard as I could to get it down as low as possible before the appointment, but I didn’t quite make it. I know the transplant surgeon there and expected a lecture about the weight and anticipated being put on hold until I got back to their limit again. I was OK with that because I have stayed well within the weight requirements of the other two transplant centers, and with my most recent GFR coming back at 20 I knew I would get back to the required weight within a month or so.

All the people I have dealt with at all three transplant centers have for the most part been easy to work with and supportive of my efforts at staying healthy. Once in a while paperwork gets misplaced, or they want some test I don’t really think I need, but I do what they want me to do. The exception is the transplant surgeon at Toledo. Last year he came across as arrogant, demeaning to both me and his staff, and highly judgmental, especially about weight issues. He wanted me to get bariatric surgery even though I had already lost 40 pounds and was only 20 pounds from their weight goal. He told me I’d never be able to lose the weight and made it pretty clear he expected me to prove to him I was worthy of the transplant. I lost the weight within two months and got on their list a year ago.

I work hard at staying healthy, but the weight is a struggle for me. Even at my current weight, a bit above Toledo’s limit, I am still 60 pounds lighter than I was five years ago. So I work on it constantly. In the past year, I have had an ankle fracture, a persistent UTI that lasted more than a month, and a back injury, all of which made it hard for me to exercise enough to keep the weight down. Add to that, periodic problems with anemia, metabolic acidosis, and arthritis in my knees and feet, not to mention the emotional stress of waiting for a transplant and the fact that I am a post-menopausal woman with low metabolism. I did not tell him that if I walked out of there, had a few glasses of water, and came back an hour later, I would probably weigh 5 to 8 pounds more from the fluid. I am supposed to stay well-hydrated, but they don’t make an allowance for fluid gains. None of which I expected this surgeon to take into account given the type of person I know him to be.

Still, I let him get under my skin. He was rude and talked to me as if I was a child who had broken the rules. It all stirred up four years of frustration from facing all of this and trying to stay on the list and off of dialysis.

What I longed to say to him was that he has a lot of nerve to have the attitude he has toward his patients. He has been at that center for several years now, yet despite their rigid requirements for getting on their list, they have consistently showed below average outcomes on the biannual reports. As of July, they were one of only seven transplant centers in the country to show below-expected 1-year and 3-year graft outcomes, adjusted for their size and patient population. According to those reports my chances of having a functioning graft after 1 year at Toledo is 89.3%, versus 95.62% at University of Wisconsin. National average is 93.92%. Despite reassurances from my nephrologist about Toledo, I find that a significant difference and a risk I am not sure I want to take at this point. The Toledo surgeon should have to prove to me that their center is a good choice for me. Instead I am expected to prove to him I am worthy of being listed there. There is something quite absurd about going to a surgeon and feeling like I am supposed to beg him to cut into me and put a deceased donor kidney into my body. I know better than to let him get to me. I have six or seven other doctors who praise me and say I am doing a great job. Yet I let one abusive surgeon get me riled up and frustrated.

As it turned out, he did not even put me on hold, just instructed me to lose the weight. I have a feeling the transplant coordinator went to bat for me. She spoke up for me at the appointment. They did demand I go back to Toledo to see their cardiologist for a clearance even though I have already gotten clearance from my cardiologist and have no cardiac issues whatsoever. By the time I get to that appointment later in the month, I will have lost most of the weight and hopefully they will leave me alone for a while.

At this point, I don’t think I would accept an offer from Toledo even if one came through, but I want to remain on their list in case my kidney function declines rapidly. The Toledo coordinator told me that if I transferred my time from Michigan, I would go to the top of their list and start getting calls almost immediately. It is might be another year and half to two years before a kidney comes for me at Wisconsin, and probably another three-year wait at Michigan. I know I need to keep working on keeping my weight down, and I have to admit staying on their list gives me incentive to work hard on it. The price I pay, though, is having to deal with an obnoxious surgeon that makes me cringe at the thought of him cutting me open.

The blood test results just came back from the Michigan evaluation, and they were yet another reminder that I do indeed live on the edge of going into stage five. My blood test ten days prior, when I was well-hydrated, showed creatinine of 2.5, BUN 60, eGFR 20. Potassium 4.3, and CO2 25. Those are great numbers for me. Ten days later, when I was not well-hydrated, creatinine was 3.25, BUN 82, eGFR 15, Potassium 4.7, and CO2 22. I know from experience that I start feeling bad at a GFR of 14. So any kind of infection or flu or stomach bug could easily put me over the edge. I am grateful for the good numbers, and I try not to fret over the occasional bad ones, but it is always in the back of my mind that things could make a turn for the worst at any time. I work so very hard at saying healthy, but the future remains so full of uncertainty. I just get tired sometimes of dealing with it all. I’m hoping I will be like MooseMom and get a successful pre-emptive transplant and look back at my pre-dialysis days as the more stressful part of the journey.