Dang, it’s been almost two months since I last posted anything! I guess like most things, no news is good news. This will be short: nothing much has changed, just humming along.
Today is my “chemoversary.” Four years ago today, I got my first infusion in Pittsburgh. Hard to believe. It’s been such an incredibly long road since then, but I won’t bore you with all that.
I have a meeting with my oncologist in July. I believe the plan is for me to stay on the Kyprolis until the end of this year, then maybe switch to an oral type of chemotherapy? I think that’s what he mentioned last time. He told me the name of the drug then, but I don’t recall what it was. This time I’ll have to put it in my phone. Once again, I just wonder how long a person can stay on chemo before it causes some serious issues…
I also have an upcoming appointment at the end of July with the endocrinologist. This is a new-to-me practitioner in the same office (Lovelace) where I got the non-stop run-around for the diabetes medication. I am TRYING to get an appointment with a different provider completely separate from Lovelace. It’s proving to be a challenge, like all things medical. I am on the waiting list at UNMH but, get this, the first time I called, they didn’t have any endocrinologists who worked with diabetes patients. Huh? Most endocrinologists work with diabetes patients. That didn’t make any sense to me. I threw in there that I also had thyroid cancer but that didn’t move the needle at all.
The second time I called, they had a new provider but were waiting for her “onboarding” process (credentialing, background check, etc.) to be completed before they could schedule patients with her. I basically got the “Don’t call us, we’ll call you” routine, although in a nice manner. I’ll say one thing for UNM: anytime I’ve had to call there, the customer service people have been VERY nice.
So… it seems unlikely that I’ll get scheduled with the new UNMH provider prior to my already-scheduled endocrinology appointment at Lovelace. I guess I’ll keep the one that is scheduled then switch over to UNMH at some point.
There was an endocrinologist I saw at Lovelace a number of years ago. She has now opened up a “concierge” practice where you pay her a flat fee per year with essentially unlimited access. I decided I was going to go that route, but when I looked on her website, she’s not taking any new patients. Once again…roadblock.
That’s all for now. Like I said, short and sweet.
I’ll leave some articles here about the amazing recent advancements in kidney transplantation.
https://www.washingtonpost.com/health/2024/03/21/gene-edited-pig-kidney-transplant
“…a 62-year-old man is now the first living person to receive a genetically edited kidney from a pig…” in what is being called a “landmark surgery.”
Sadly, he passed away suddenly about two months after his surgery, although the cause of his death may not have been related to the transplant.
https://www.npr.org/sections/health-shots/2024/04/24/1246577224/gene-edited-pig-kidney-transplant-nyu
A 54-year-old woman became the second living person to receive a pig kidney. She also received a surgically implanted mechanical heart pump at the same time.
The hope is “that someday, an ample supply of genetically modified pigs will save thousands of lives.”
I won’t be one of those lucky recipients, but once this is perfected, it will save so many people. About 13 people die EVERY DAY waiting for a kidney transplant. It seems these researchers are right on the verge… and that will open up so many avenues for other organ transplants. This is very exciting.
Some feel-good transplant stories:
https://www.washingtonpost.com/lifestyle/2024/01/28/strangers-kidney-paired-transplant-arizona-illinois
Two families waited years for new kidneys. Then they found each other. The pair, who had never met, were the beneficiaries of a specialty organ donor program.
https://www.washingtonpost.com/lifestyle/2024/04/09/pool-player-rival-kidney-donation/
They were bitter rivals. Then one of them needed a kidney.
Happy summer!
Low, Low, Low 