Moving to NYC…Kind of!
Hi y’all. A lot has happened since last month so let’s get into it.
At the end of March, I had a call with my doctor and the transplant coordinator at NIH. They informed me due to a few bad outcomes at Baylor with STAT1 patients, they were halting transplants for patients with my disease. In February they informed me this was my best shot for survival, so this was an unwelcome shock.
On April 11, my parents and I trekked to Memorial Sloan Kettering in New York City for what was originally going to be a third opinion. But now I was viewing this appointment as my last hope for transplant. NIH wouldn’t be resuming transplants for STAT1 patients for at least 9 months while they worked on a new protocol. Sloan had become my final stop on the transplant train and I highly doubted they’d want to take a chance on me. I’m too old and have too many co morbidities to make me an easy case.
The doctor at Sloan is named Dr. Joseph Oved and he is a friend to my immunologist at Mount Sinai, Dr. Cunningham Rundles. Before my appointment with him, Dr. CCR briefed Oved on my extremely long and complicated medical history. Going into the meeting, I assumed she’d just given him the highlights.
But when I met him, I soon found he knew a ton about me. He knew the transplant coordinator at NIH, he knew of my main doctor there, Freeman, and he knew the ins and outs of my disease. In fact, he informed me, he was the only doctor on the East Coast who had successfully transplanted a patient with STAT1.
His STAT1 patient is a ten year old girl without diabetes or other problems, like my lupus and gastroparesis. She sailed through transplant after he tweaked the protocol to better control inflammation. This made a huge difference & she had no serious complications and no Graft Vs Host Disease, which occurs when your immune system rejects the donor cells instead of grafting normally.
Oved went over transplant with me: the insane amount of chemo I’d need, the four doses of an interferon intercepter that cost $100,000 PER dose, the loss of hair, the severe complications, the high risk of death. He didn’t give me a survival rate but I’ve previously been told it’s anywhere between 40 and 70 percent. I’m highly complicated though so it’s definitely a high risk for me.
Oved told me he would get me through transplant. He’s a pediatrician and so I’d likely be residing on the Peds floor which is honestly better for me because the nurses are much nicer. He told me Sloan has an amazing pain team and they’re using ketamine to treat pain. My friend Suleika, who’s had 2 transplants at Sloan, reported to me that she had 0 instances of being denied meds. NIH is awful with pain management, often forcing oral painkillers on me while I’m vomiting, and not relenting until I proved I’d thrown up the pill. My pain there is always under treated and it’s a huge reason I did not want to go through transplant. When there’s a good chance you’ll vomit up the lining of your esophagus, you want the best pain meds possible. I felt totally uncomfortable having my transplant there for this fact alone.
Dr. Oved made me feel so much better about transplant than NIH ever did. I got the sense he really saw me as a patient and a person and not a research project. I wasn’t his first STAT1 patient so the burden on me was lesser than it would have been at NIH, where they’ve never even tried transplanting a STAT1 patient.
I left the meeting feeling certain that Sloan was the right place for me. In the weeks since, I’ve been battling my demons over transplant. I’m anxious and depressed that it’s come to this. I also hurt my leg badly so my walks, which I usually take to clear my head, have been short and painful. I see an orthopedist on Tuesday to get to the bottom of my calf pain and swelling.
So far transplant is scheduled for the week after the Fourth of July. I will be spending at least 30 days inpatient. But with likely complications, it’ll be more like I’m in and out for the first 100 days. We have to live close by too, so we are looking for 2 bedroom apartments in the city.
I’m completely overwhelmed and totally terrified. I’m not looking forward to this is any way, shape or form. I’m so stressed out and sad I will miss summer. I won’t be able to see the kids for awhile as I will have a completely obliterated immune system and cannot be exposed to germs.
Many of you have asked how you can help. I’m sure there will be things I need to get before I move into the city. But for now, I could use help figuring out a place for Pete to go for 6 months and finding a sublet on the Upper East Side. If you know of anything, please hit me up.
Other than that, I’ll keep y’all posted. Hopefully transplant will happen this summer but I need to stay stable before that. I’ll be heading into the city on May 9 to “get the ball rolling” in Oved’s words. I’ll be undergoing a ton of tests to see where my organs are at at baseline. Please keep me in your thoughts.
I promise to update more after the 9th. Thank you all so much.