Friday morning, I woke to more swelling. I could not believe the size of my thighs! It’s as though I was Arnold Schwarzenegger—-that I had lifted leg weights overnight, and now I had these huge muscles!! I know that was not the case. I asked the nurse to weigh me. I was astonished to see that my baseline weight coming in was 158. Now it was 185! Me , 185!!!! I know you’re all laughing! Today I would be off to dialysis for sure!
I tried my best to get a quick breakfast in. Again, the meal was bland because everything had to be perfectly rationed. This involved balancing phosphorus, salt, and potassium. They are really good in the kitchen in knowing what is in these foods! I had to trade a sausage patty to get enough milk for my coffee—-I never knew that milk had so much salt in it???? But I needed that milk because I hate black coffee!
The phlebotomist came in early. The results of the blood test came promptly. They prepared for both the plasmapheresis and the dialysis. The creatinine had risen further, now 7.2 with my kidney function now settling in at a mere 8%. There is still no response to the therapy. However, it was only day four out of at least 14. Perhaps there is some hope.
I spent my morning reviewing labs of my patients. I was writing comments to them as Justine will mail out some folders on Monday to them. I was able to talk to some of the patients on the phone. I found it a little bit difficult to give advice for mild sugar or cholesterol elevation. This is especially true for those in their 80s. Strange how perspectives can change so quickly, as can life. A cookie wont kill you but your own immune system will!!! I’m eating more cookies. I enjoyed the conversation with some of you. It kept my mind busy. I felt I was still contributing.
I met the kindest nurse in dialysis. Her name is Fe—— that’s the symbol for iron or strength!!! She’s been doing this for 22 years and had been at Uvm for two. So experienced!! After I finished the plasmapheresis, she said it’s time for dialysis. I said “thank you“. Hard to believe one would thank someone for starting dialysis but I wanted her to “ deflate this Michelin man!”
During this time, I was visited by an extraordinary medical team, consisting of hematologist, nephrologist, rheumatologist, and the medicine team. They were very compassionate. One of the young hematologist asked me if I had ever seen this disease and I said only once. He asked me what was the outcome. I told him I did not know. I was an intern. I only cared for the patient for a short period of time. He admitted that he had never seen this disease and that it is so rare. He was comforting, however, and encouraging. All of them were!
Spending five hours in dialysis is quite boring, but I did learn a couple of tricks. My right arm was tethered with a blood pressure cuff and a large catheter in my right chest. I was able to text while holding my phone in the left hand. I also managed to fill a couple of prescriptions for patients using my phone without any problem. That was a new discovery for me. I’m learning to use the medical record on my phone. It is quite convenient. I can do this with my left hand. I thought that was quite an accomplishment!!!
Fe, my nurse, finally reminded me to order dinner. The session was ending after 5 hours of treatment. The kitchen seemed more cooperative. It allowed me to order more things, including potatoes with gravy. I think the gravy had more salt than it was supposed to have. However, I was starving, and I didn’t say anything!!!!
They had the dinner waiting for me when I arrived in my room. I was greeted with a wonderful nurse who had been taken care of me all day long, Madeline. She is the most compassionate and caring nurse in every way. All the nurses on the McClure 6 unit share this compassion and care.
Well, I expect tonight, I will get good sleep as I feel exhausted. I hope tomorrow will be a better day. I have to go to dialysis again for another five-hour session. It starts at 7 AM on Saturday.
Will update you again on Sunday morning.
(So far, the best rename of this disease, Goodpasture, is “bad pasture” and was submitted by a future medical provider. We will see if we can find the best new name for this rotten disease)


Leave a Reply to Valerie KushnirCancel reply