Worsening fatigue 9 months post allogeneic Stem Cell Transplant

Good morning, Deb. Wow, I’m really sorry to hear about your worsening fatigue this many months out post SCT. It’s not unusual to have those up and down days from time to time, like you mentioned. Having a couple of those myself with this pervasive and lingering wildfire smoke. But what you’re experiencing doesn’t seem normal.

I wonder…first thing that popped into my mind with your good labs, except for the low ferritin, is iron deficiency without anemia. Ferritin is important in helping the body to store iron…needed to make red blood cells which carry oxygen throughout the blood stream. Labs, such as the hemoglobin reading, aren’t reflecting anemia yet. But you can still be experiencing the heavy fatigue of anemia if the blood cells aren’t rich in oxygen. There are stages to iron deficiency, which can eventually lead to anemia.

Posting a couple of articles for you that I think might be helpful in explaining iron deficiency more succinctly than I can this morning. ☺️

From Good RX:
https://www.goodrx.com/conditions/iron-deficiency/iron-deficiency-without-anemia
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From healthline.com
https://www.healthline.com/health/iron-deficiency-without-anemia
I know you’ll be getting more feedback from our BMT posse so it will be interesting to see what they have to share.

Are you still meds which could be interfering with your iron absorption? Vegetarian diet?

Hi Lori - I am taking an iron pill for iron deficiency without anemia but am not having any positive effect yet - has been a few weeks. They do not want to do iv iron. The only meds I’m still on are tacrolimus (which i stop next week), valacyclovir, famotidine and bactrim. I eat a regular and varied diet.

I am frustrated at myself and frustrated with my team that they weren’t taking my complaints of increasing fatigue seriously for months since I was otherwise technically doing well ; I actually had to ask for the ferritin / iron test. Now they finally have done the additional fatigue tests like thyroid etc but those were normal. I guess this is one more example of how we need to advocate for ourselves because we know our body best and I knew my fatigue was getting worse. Im just so miserable because it’s hard to do anything. I know the transplant teams are primarily focusing on all the potential bad complications of transplant but I do wish there was more education and effort put into helping us get back our quality of life. Thanks for all your words of advice.

Deb, sorry to hear that you have lingering fatigue 9 months post transplant. I had my SCT 9 years ago and had experienced the highs and lows of the recovery. One thing that my doctor recommended was walking. It sounded counterintuitive since I didn’t even have the energy to stand, but I took his advice and started walking 5 minutes at a time. Pretty soon I began adding more minutes to my walks until I reached one hour a day. This was in the dead of winter in Michigan, so I was walking around the furniture in my living room. This really helped me regain my muscles and battle fatigue. You may have a different underlying reason for fatigue, but see if walking will help you!

Hi - thanks for your comment. I actually do walk almost every day from 15-35 minutes. But it has become harder not easier over the past 5 months. My biggest problem isn’t that I can’t do any one thing like a walk, but rather that I’m so exhausted all the time that everything feels hard to do - even just planning to go out to dinner. But thank you for the suggestion.

Hi Deb, I can just feel your frustration with this whole fatigue situation. Not sure how your team missed all of your complaints about increasing fatigue. Usually our BMT teams are all over comments like that.
You touched on an interesting subject about post BMT care. We get so much prep, info, hand holding beforehand and during the process, but survivorship can be a real challenge.
We go from intensive and comprehensive immersion in medical care with our BMT teams to…home and now what?
That’s where Survivorship Education comes into play. Guidance and a plan for life!

My ongoing care involved those discussions but not every clinic is equipped or offers post transplant education in survivorship. I think that may be a good topic for me to start here. I’ll work on that.
In the meantime, a fantastic link for survivorship mentoring, discussions, podcasts, etc. is the National Bone Marrow Transplant Link. You might enjoy some of their podcasts and educational materials.
https://www.nbmtlink.org/
I’d also posted a link in Connect last year: https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

The National Marrow Donor Program has fantastic sources as well this is a link to their survivorship discussions:
https://www.nmdp.org/patients/transplant-support/life-after-transplant/survivorship-program
It’s great that you’re near the end of your Tacro taper. Once you’re off that, you’ll be able to proceed to your vaccinations and then finally off the lingering meds. Which leads me to this thought about the famotidine. It works by changing the pH in your stomach, which can alter your body's ability to absorb the iron. Wonder if this could have anything to do with your low iron level?
Other ways to enhance iron absorption is with drinking citrus juice or foods high in vitamin C at the same time that you eat high-iron foods.

I’m sure this feels incredibly discouraging after all you’ve gone through so far. We’ll be optimistic that the iron supplements will begin to have some impact soon!! ☺️ You didn’t go through all of this to feel like a slug…🐌

Hi Lori, Thank you so much for your suggestions. You and this group have been such a source of comfort and support and I really appreciate it. And lol your slug made me smile.