Mark Welch is recovering from Neurosarcoidosis
Comments (2) TIMELINE:
- April 2021: TIA (small stroke).
- June 2021: Diabetic low-sugar event, unconscious on floor for 14 hours. Yovany Acosta, my roommate, found me and called 911. Later, he called my wife (Kary Stowe) to ask for her help.
- Sept 2021: Prostate issues forcing me to get catheter. Persistent vomiting, abdominal pain.
- Oct 2021 – Feb 2022: Repeated hospitalizations (100+ days total) for health issues with various preliminary diagnoses. Moved from California to Springfield, Missouri. Gall bladder removed. Zillions of tests, including multiple colonoscopies and lumbar punctures. Wide range of symptoms, including bizarre hallucinations/delusions. Doctors referred me for hospice care.
- Feb 2022: Kary identified issues that did not match any of the preliminary diagnoses, arranged for my discharge, then transported me to Barnes Jewish Hospital in St. Louis.
- Feb – March 17, 2022: Neurology team at Barnes diagnosed and confirmed #neurosarcoidosis, and with treatment, within weeks I was mentally back near my normal.
- March 29, 2022: Prostate surgery (TURP, trans-urethral resection of prostate) to allow removal of catheter.
I’ll soon delete the newer FB account (MarkWelchTemp) which my wife Kary set up for me while I was incapacitated.
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March 17, 2022: Kary (my wife) has saved my life. Kary wrote:
March 15th… Mark is improving every day and is getting out of the hospital!!!
We are moving to a hotel that has a 1 Bedroom unit with a full kitchen and handicap accessible. We have “home health care” coming in to help. This is the plan for the next 3 weeks. This way we will stay in St. Louis to be able to follow up with appointments and stay within an ambulance ride to the team/hospital (just in case).
There is no cure for #neurosarcoidosis however there is treatment. He will continue to get steroids for 6 months. He has a weekly “chemo” pill and a very expensive IV injection medication (as soon as we get approval) to help treat this infection and knock it into remission.
This also means the surgery for his prostate (now scheduled for April 29) has become important again in order to get the catheter removed and stop the repeated UTI’s as we need to do everything possible to avoid any infections in his system. We are already working on this.
Physical therapy has already started to get him stronger and deal with the dizziness he continues to have. Only hard work, time and follow up will determine what, if any, long term damage has been done.I think that is it for now… lol… but there has been a lot going on! Riley brought supplies and we picked Mark up on Thursday. Riley stayed with us overnight until we had a bit of a routine and make sure Home Health is in place.
Hope you are all doing well and again we all thank you for all the support and encouragement!
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April 3, 2022:
Finally headed home (from St.Louis to Springfield MO)!
Remember, folks, Kary saved my life by fighting to get me from approval for HOSPICE in Springfield, to the Barnes Jewish Hospital in St.Louis, where the neurology team finally came up with a diagnosis (#neurosarcoidosis) and effective treatment plan.
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April 27, 2022: Kary Stowe wrote today, about me:
Update … doing so well!!! We traveled to St. Louis and saw the Neurologist on Monday and the doctor was impressed by the recovery!!! They are starting to taper down the steroids. Still waiting for approval for another medication.
Physical therapy is also going well, getting stronger each day!
Thank you again to each and every one of you for your love and support.
More recovery to come and a family reunion to attend in August!
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May 1, 2022:
My brain is working pretty well again (after emerging from hospice to a strong recovery from #neurosarcoidosis and other ailments).
This past month, I read multiple mystery novels each by Janet Evanovich, James Patterson, Stuart Wood, Harlan Coben, John Grisham, James Lee Burke, and Michael Connelly (along with more mysteries and a couple science fiction novels from several other authors, plus a few nonfiction books and more than a wee bit of poetry).
I’m now 133 pages into Guns of the South by Harry Turtledove, and wondering why I didn’t read any of his “speculative history/sci-fi” books in the past. https://en.wikipedia.org/wiki/The_Guns_of_the_South
And I’ve subscribed again to the Economist and the New Yorker (online + print) and resumed reading the online Washington Post which auto-renewed (at a high price) while I was hospitalized. Next, probably, I’ll add the Atlantic and The Nation.
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May 13, 2022:
Kary Stowe wrote: “Mark Welch and I went back to the hospital here in Springfield to say ‘thank you.’ It was so exciting to see the staff reaction to how well he is doing! We made 100 of these [gifts] and passed them out at the two nursing stations, the coffee shop and the cafeteria!”
May 23, 2022:
@MarkWelchMktg with Allegra. May 23, 2022, at home in Springfield, Missouri.
Yes, as a side effect of steroid treatment, I’ve gained back about 60 of the 40 pounds that I lost while ill.
May 29, 2022:
A few weeks ago, I attended the Artsfest event in Springfield, and realized quite suddenly that I was contemplating the purchase of new art — which I hope to enjoy for years. WOW!
Less than four months ago, after months of hospitalization, I was referred to hospice care, with many symptoms but no diagnosis. My wife, Kary Stowe , wasn’t willing to accept that some issues (such as a spinal infection) did not match any preliminary diagnosis, so she and our kid arranged for my hospital discharge, hired a van and helper, and drove me from Springfield MO to Barnes Jewish Hospital in St. Louis. The neurology team there diagnosed my neurosarcoidosis and began treatment, and a couple weeks later my brain was back. (See posts below on May 4-6 for more details.)
I had accepted the idea of hospice care, and had expected to die before summer. Everything has changed.
Book suggestion: “The Patient’s Guide to Neurosarcoidosis,” by Denise Sutherland, author. Useful for those diagnosed with #neurosarcoidosis. Provides details on symptoms, diagnosis, and treatment; second half of book is devoted to “patient stories” which identify issues in getting diagnosed as well as symptoms, side effects, and such.
