FIRST…if your’e seeing this on Facebook please read and not just like my new pic! 🙂 yes, my hair is growing! Still no haircut- yet. I am curious how long it is straight but I think it would look weird.
It’s been a year and a half since transplant. I’m so tired of hearing about “the roller coaster” and reminding people in the clinical trial about it myself….I’m ready for this ride to come to a halt.
I was prepared for some challenges and ups and downs….but I thought they’d all be MS related. It never occurred to me that I’d encounter other health issues. And the MS is still really good! I have started taking antivert (for vertigo) and baclofen (for spasticity) again but I’m okay with that. Those were early symptoms, particularly the vertigo, so I will likely always have that to deal with. HSCT doesn’t promise to reverse symptoms, only to halt progression. But I’ve been VERY lucky and most of my symptoms are significantly improved or completely reversed. I do worry about my level of fatigue and cognitive issues- I forget a LOT. “Cog fog” is a real thing and I’m afraid that being off of a DMD for awhile in preparation for transplant may have been problematic. I was without a neurologist for a short time since I had to fire the old one who didn’t agree with transplant and was waiting to get in to see the new one. He did put me on steroid infusions but I’m afraid it may not have been soon enough. I liked to blame it on “chemo brain” but I’m not sure that I can still say that all this time later. I’m hopeful it will improve. Somehow.
I’ve been to a number of doctors lately. I’ve been hanging out at Rush way too much. I am glad to have quality healthcare nearby….makes ubering much more affordable and is even cheaper than parking too. Within the past month I’ve seen 4 different doctors and I have appointments to meet 3 more.
In October, I went to my PCP because I had some strange rust like bleeding and I’m in menopause. My doc did a pap smear (which turned out normal) and she could see it internally. She sent me for pelvic and abdominal ultrasounds and said she’d give me a referral to a gynecologist to follow up depending on what my results showed. My results showed that my uterine lining is too thick. So I was referred to an oncologist who specializes in gynecology. When I got off the elevator I saw the word “Cancer” everywhere and I’m thinking, “how could I have cancer when I had chemo?” Well hopefully I don’t.
The oncologist was going to take a sample from my uterus but she didn’t dilate me and said my uterus was “closed.” Well, duh. She tried to take a sample from outside but it came back as just tissue nothing could be read from it. The oncologist said to stop taking the bio-identical hormone because maybe my body is trying to have a period and see if that’s all it is. So I’m waiting. Unfortunately I’m having hot flashes at night so I don’t think that’s it. I have another pelvic ultrasound scheduled for the end of this month to see if the lining is still thick or has gone down and then another followup appointment after that with a regular gynecologist to talk about next steps.
Then a few weeks ago I saw my PCP again because my knee has been hurting to the point that at times I can’t bear weight on it or I’m limping. I’m not sure what happened. It’s been puffy a couple of months- I remember showing it to the nurse at work and not remembering what happened to it. Being clumsy and forgetful isn’t a great combo. I assumed I banged it on the desk or something. So it got to a point where icing it and heating it really wasn’t doing anything so I saw my PCP and she gave me a gel to put on in for pain. I had an x-ray done and it just says “joint effusion” which just means fluid. So next step is with sports medicine doc a week from Monday. I’m using a cane again. And a knee brace. Blah.
At the same time, my positional vertigo seemed to be back as I rolled over on my left side in bed and the room was spinning. So I went back to my ENT but by the time I finally got in the BPPV had subsided it was just general vertigo. But I still wanted to talk about the cracking and fullness in my ears that’s been going on since last year after transplant. I had gone swimming, when it was allowed, but since July of last year I’ve had crackling in my ears and antihistamines have been very slow at working. It’s gradually improving but it’s still maddening at times. A friend in my group has the same thing and I was hoping she found a solution but not yet.
The PA at the ENT confirmed BPPV somehow resolved itself but gave me orders to see an audiologist for hearing and balance testing and a referral for allergy testing. Yesterday I went to the audiologist for a hearing test and a balance test. I couldn’t take any antivert or antihistamines in preparation for three days. So that was a challenge. My hearing was normal which I expected. I haven’t heard anything about the balance testing yet but don’t expect to for a bit. I won’t get into the allergist until next month.
Work. I seem to have confused a lot of people with my Linked In update. Am I working? Barely. I’m consulting for someone for pharmacogenetic testing for senior citizens. I obviously have a strong interest in precision medicine since transplant and I think it’s fascinating that your DNA can tell you and your doctor which medications work for you and your genes. Like, I always knew Tylenol didn’t work for me but Aleve does and now I can prove it. Since I’m consulting I can work as little or as much as I can tolerate. It’s also good to have a placeholder in my resume. I’m also taking one course at a time toward my MHA….5 more classes and a capstone and I’ll be done. I wish I could do more….but right now I just can’t.
I have faith that in another year….hopefully less…..I’ll be great. But for now I’m just going to do what I can and continue to focus on my health.
Sadly, one of the patients in the trial recently passed. HSCT is a very serious process and Dr. Burt warned me, as all his patients, at every appointment before the transplant “you could die from this.” And a few have and it’s very sad. But other medical complications do happen and a weakened immune system makes us vulnerable during transplant.
This blog entry is dedicated to Carol. May her memory be a blessing.
Thank you to my friends and family for their continued support. It means everything.
Bekki Lindow said:
Hi Ellie. I haven’t commented in a long while, but appreciate the updates. I wish you well with all of these side effects and other challenges and losses along the way. Best, Bekki
Debra Eubanks said:
Do you have any updates on your roller coaster? My husband is about a year and a half post hsct. Wondering if what’s going on with him is roller coaster. Of course we always are concerned that he’s regressing versus terrified. He had ppms
Hi, I’m so sorry I’m just reading this. It’s been a crazy rollercoaster and I will update my blog when I can- but I would say I started to really level out by 2020. I’ve maintained steady employment for almost 4 years.