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

Good morning, @leilab1 When you say Alex is going to be discharged from the hospital, I’m assuming he’ll be going to another independent living arraignment with your husband? I can understand your reluctance to have him away from the hospital because of his ongoing yeast infection and a staph infection. I’m fairly certain that he would be admitted back to the hospital setting immediately if there are any serious complications.
My entire BMT was outpatient. But there were 2 events that landed me back in the hospital when required. There is a basis behind the discharge…statistics show it can be healthier with faster recovery for patients to be in a homelike setting, away from the hospital. It’s cleaner, less chance for infection. With a more ‘normal’ environment, patients are generally more mobile when they have to be self sufficient…with little things like walking to the refrigerator to get their own snacks, getting up to use the bathroom, walking around the apartment, etc,.

If that’s the case with Alex, I would expect your husband can let his doctors know if there is anything concerning and they’ll have him readmitted asap. Also, he’ll no doubt be returning to the clinic daily for blood work and med checks. He isn’t being dismissed from patient care. He’s just being removed from the hospital setting. However…do not hesitate to ask questions and to find out what the options are for immediate care!

With Alex’s Pancolitis a couple of thoughts popped in my head. His doctors may suggest a colonoscopy where a quick biopsy is taken to make sure he’s not dealing with GVHD. That’s pretty common in the early months. Or, this colitis could also be caused by the antibiotics/antifungals he’s on…or C-diff. The micro biome in the gut can be heavily impacted by the BMT itself and all the meds. Especially now with his yeast infection. Those are notoriously persistent so don’t feel too disparaged. You might talk to the dietician about getting in some probiotics or even a good yogurt. Even something like Activia yogurt can help restore the normal good bugs to the gut.

What are his treatments for the staph infection?

Good afternoon @loribmt .
I appreciate you're thinking of us and am thankful for your support!
My son's blood counts continue on an upward trend so we are encouraged by this.
There has been a new development: on Day +32 a Pelvic CT scan revealed Pancolitis of Alex's entire colon. He is now also dealing with a staph infection. This is concerning due to the fact that Alex's Grandfather was diagnosed with severe Ulcerative Colitis for which he now has an ileostomy. So the genetic predisposition is a present concern. My other concern is the yeast infection which has been ongoing for weeks. When Alex's Doctor mentioned the possibility of discharge as early as next week, I was taken aback. Why on earth would they release Alex with an ongoing infection?

Good morning, @leilab1. Thinking about you and your son today. I hope he’s continuing the steady up hill progress post transplant. Any news?

I agree with the comment about finding a doctor who is willing to pray with his patients. This would increase my confidence in the doc's abilities ; like finding a diamond in a cornfield.

I had to laugh about the doctor who left his crystal ball at home. Next time you should ask if he brought it with him to work. I agree that it’s hard to predict how long GVHD flare would last, but the doctor should have observed enough patients with that specific GVHD to give a better answer.

I would have liked for a doctor to pray for me when I was going through my transplant. This just shows that we are all different, and what would be meaningful for me wouldn’t be for you.

I also had a lot of different doctors since I was diagnosed with AML in 2016. Moving to different states twice since then didn’t help either. For me, it’s important to have a doctor with many years of experience with blood cancers and transplants, someone who listens, answers my questions, explains well what I am experiencing and proposes a course of action.

Most of my oncologists have been top notch. I did have a young oncologist three years ago who ordered an unnecessary biopsy that resulted in me needing a thoracic surgery to treat the biopsy infection that could have killed me. He didn’t listen to me when I told him that the growth wasn’t new and was previously evaluated by another specialist.

Anyway, this unfortunate experience led me to connect with Mayo Clinic and now I have an excellent doctor.

The hospitals infectious disease department revealed that Alex's fevers are being caused by a fungal infection that took hold in his central line. Because the central line was contaminated, they had to remove it and install peripheral IVs. It's day plus 23 and has ANC is now at 260. The small upturn in his health has been a huge relief for both my husband and I. I know there will be good days and bad days but the upward trend in blood counts is tremendously encouraging. Thanks for your continued support and thank you for sharing your journey. 💞

This is wonderful news to hear that Alex is finally seeing some improvement! 💕 Those first few weeks of transplant can feel so tenuous to all involved. I had a few of those moments too. Fortunately, our transplant teams have seen it all and ready for any contingency.
It’s really an encouraging sign that his fevers are now under 100; A good indication that his meds are working and his blood numbers are increasing. And if that isn’t reassuring enough, then seeing him texting friends for the first time in 2 weeks seals the deal! He should have steady progress ahead.
I bet you’ll have a much more restful sleep tonight. Thank you for the update and keep me (us) posted! Hugs!

One of the things I have noticed is that my doctors all seem to have different personalities. When I was first admitted to the hospital for treatment I talked with an oncologist. We talked about my wishes regarding an advance directive. I told him that I thought it would be a fate worse than death to be in a comatose state for weeks or months, or even worse, to be conscious but not able to communicate. He told me, don't worry; whatever will happen will happen a lot faster than that. That actually helped.

Another oncologist in the hospital who was concerned about my condition told me that he would pray for me. That was the last thing I wanted to hear. I told him that I would prefer that he think for me instead.

My transplant specialist had a way with words. At the informed consent meeting when he described the possibility of a reaction that would cause itching, he said that I might itch like a chimpanzee with fleas. He also told me that a bone marrow transplant was biologically implausible; it was against the laws of man and nature.

After the transplant I asked the doctor how long my GVHD reaction would continue. He said, sorry, I left my crystal ball at home.

Hi Laurie!
Thanks for the hug and support! My husband and I did see Alex over the weekend. What a difference a day makes. When we arrive to see him Saturday he was sleeping and hardly spoke. We watched him sleep for more than 2 hours. Sunday when we arrived he was actually sitting up in a chair with the shades open and eating a little bit of yogurt. I was jumping for joy. His ANC is now at 260 but white blood cells haven't caught up yet but are slowly increasing. He is still having fevers from his fungal infection but the fevers are 100° or below which is a huge improvement. He actually texted friends on his phone for the first time in 2 weeks. Thank you for your prayers and support. I think that's what got me through the weekend. Warm hugs!

Hello @leilab1. Just thinking about you today and hoping things are improving with your son’s condtion after transplant. We moms never stop worrying. Sending you a warm hug.