My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Hi @leilab1 There must have been a ‘connection’ between us this morning! I woke up thinking I needed to check with to see how Alex is doing because it had been really quite a while since we’ve spoken. And, boop, here you are!

I’m so happy to hear he’s been doing really well considering all the uncertainty in his earlier days of the transplant. How is his appetite and activity level? Keeping in mind…as I was reminded so many times by my team…this is a marathon, not a race! But with Alex being young, it can be really frustrating not being fully active like he was prior to transplant. It gets better!! Tell him I’m going to be 70 in a few days and feel like I’m 24…seriously! It just takes time! ☺️

This event with his hip isn’t anything I’ve experienced. Has he been doing any extra exertion, exercises, etc., that may have caused inflammation there? Do his doctors feel this is in anyway related to gvhd?

Wishing you and your a family a very happy, Healthy and uneventful New Year!! Lori

Lori,
I'm so happy to hear that you are doing well! I'm afraid I have no answers yet and test results may not be available until Tuesday Jan. 2nd. 🙁 Alex's Orthopedist told him there are two possible outcomes: either it's just infection or "something else" which would require surgery.
This leads me to think it could be a synovial cyst (?) Alex isn't presenting with any other symptoms: no headaches, rash, swelling. I mentioned the possibility of GVH and was told they think that's "highly unlikely". I'm really in the dark on this one.
Anita

HAPPY BIRTHDAY !!!!!

Anita, it’s ok to be in the dark about some of the medical issues that may pop up with Alex…that’s why he has doctors. This occurrence with his hip may have nothing to do with his transplant at all. When we go through a life altering event such as a stem cell transplant, it feels natural to correlate every unusual thing that pops with that event. But sometimes things just happen and who knows, they may have taken place anyway. Regardless, we deal with these little events as they come.

Alex is well past the initial critical period of 100 days. So now issues, if any, that may pop up related to his transplant will generally develop slowly without escalating quickly. That was more of a concern in the early days.

I hope everything goes smoothly and no surgery is necessary. It’s not a setback, just a little snag. Please let me know what you found out. ☺️

Thanks!! It’s a few more days out yet so I’m holding onto this decade as long as I can! 😂 “🎶Hold onto 60s as long as you can…🎶”

Hi, I have posted before about my husband. We found out last summer he had an issue with his blood work and was very tired. After a bone marrow biopsy at a local hospital that physician sent his results to Mayo since they just accepted them a partnership with them. Local hospital said non Hodgkin lymphoma but this dr didn’t feel it matched his symptoms so biopsy sent to Mayo and MDS-EB 2 with 19-% blasts so off to a local bone marrow specialist. And within 2-3 days he was getting chemo all as an outpatient. He did very well through that until he didn’t. He developed a fever and was very delirious with them and was hospitalized for two weeks and was told he wouldn’t be a candidate for a transplant. Well as I have said before and Lori has heard it he was a guy who worked out every day before all this. So off to PT and she worked wonders and so in Feb 2023 we got a transplant from a most gracious unknown 30 yr old male. I’m not saying it was easy as he also had graph vs host disease and a very bad bout of cdiff that again caused delirious temps. So today as I write this we had a very nice Christmas this year unlike last year. He does have some fungus in his lungs, low sodium levels, blood clot in his groin but platelets going up and alkaline phosphorus going down. But he is walking almost every day or going to his yes Parkinson’s exercise class twice a week. We have had a lot of prayers being answered and so grateful for the second chance. Just love our extended family members at the BMT clinic and hospital. Prayers for the rest of people going through this process. 🙏

Hi @jrwilli1…it’s been one heck of a year for you and your husband. Phew, huh? Within the first year after a SCT it’s not unusual to have that new immune system test your stamina and toss in a couple surprises just so you don’t get too complacent. 😅. I’m happy to hear he’s doing much better with the recovery now. I know he had some pretty rough moments in the beginning and still has some health issues he’s working through. But it sounds like he’s turned the corner for the better now!

It’s a good sign, or at least it was in my experience, that his ALP number is trending down. It’s also encouraging to learn he’s going to his exercise classes and walking daily! Little bits of normalcy returning.

Wishing you and your husband a Happy, Healthy and “unremarkable” New Year! ☺️
( Unremarkable was always the key word I wanted to hear at my followup appts).

Yes we finally got the ok to come back in a month for the first time except he still has his Hickman so go weekly for that dressing change. They couldn’t think of a reason to make him continue to come weekly unless he feels something is off. 👏🏻👏🏻

Getting your husband’s “leash” lengthened between followup appts is a really positive sign! It can feel a little scary at first though too! You get so used to every week or every 2 week visits so when you don’t have to return for a month it just feels weird! Conversely, don’t feel like it’s backsliding if there are times when he needs to return more frequently. I still have that happen occasionally. If there is an anomaly in bloodwork, my 3 month window will return to monthly visits just to monitor. That’s happened several times over the past 4+ years. I felt a little defeated the first time but then realized it’s no biggie. Just the doctor being able to spot trends in the blood work.

Most likely, it won’t be long before your husband has the Hickman removed as his appointments get further apart. It’s so nice to have it in place for infusions and blood draws, but the weekly dressing changes get a bit tedious. I was offered the option for instructions and supplies to change the dressing at home. My husband was pretty adamant that it wasn’t going to be an option! 😅 He’s solid as my caregiver but drew the line a changing that dressing.

Happy New Year…now, if I can remember to write 2014. 😁

I’m a retired labor and delivery nurse and we had a few lines to change and wish they would allow me to change it but I think they still want to have eyes on him. Which is comforting as well. Thanks for always letting me vent through some of those really tough times. Hope your new year stays healthy.