The beginning is rough. Not knowing or understanding. But the Evaluation should shed a lot of light. I hope.
I have never been this anxious about a doctor's appointment. To be fair, this was more than just a doctor's appointment. This transplant evaluation would start with tests and then an afternoon of meetings with so many people I would lose count. Because of COVID, I was not allowed to have a caregiver with me during any of the proceedings. This made everything more daunting and harder to recall what everyone said.
I was at the Kirkland Clinic at 9 am for an echo-cardiogram. I had to do lab work and chest x-rays. I was lucky to have a lunch break and grabbed a sandwich. I took this time for a deep breath. Because at 1 pm, I walked down two blocks to the UAB Kidney and Pancreas Transplant Clinic. I didn't have to wait long before they had me registered. Then a parade of people saw me and went over my medications (for once when they say bring all your medications, they actually went through all my bottles). They also asked so many questions my head was spinning.
I saw in no particular order:
one of the transplant phrenology group
one of the transplant surgery group social worker
The last doctor said he would suggest me for a kidney transplant but that I had to work on things such as exercise. He wants 10,000 steps a day and 15 minutes of aerobics a day. I can't do that. As someone with mixed connective tissues, I have limits (I've hit over 5,000 but then I'm, in a lot of pain). I felt I was not being holistically treated; they were ignoring or didn't truly understand my chronic pain.
We also talked about Hepatitis B transplants. It's a new program where they give you a kidney and then cure you. But I refused to sign until I talked to a doctor. I wish I could have talked to my immunologist; I trust him. Their doctors said I should even with my immune system the way it is. So I signed. Let's get that kidney!
And there was the elephant in the room: my primary immune deficiency. I finally asked the question we've all been thinking about. How will we handle the transplant with my disease? Carefully, is the answer but they assured me it would not keep me from the transplant list; we would just have to work diligently with my immunologist.
The last thing I did was an EKG, and it was four o'clock. I could finally go home but it was rush hour in Birmingham and took forever to get home. I had never been so exhausted or alone after a doctor's appointment. Some progress made but a lot more to come.
Audrey Elaine Adamson