@anitasharma

Good day. Thank you for updating us. One year nearly. It is amazing how time passes and the transplant portion takes a back seat to todays this and that. I feel sometimes i need to change my habits to see why something is happening. I have gotten up most days at 5am since my transplant. Living in So Cal, early gets me outside and moving.
I just went in my portal and saw i had education topics to read before my treatments. I never read them.
I note on one it says to track energy levels. When might i do most activities. Always keep your transplant team informed.

Because of my osteopenia diagnosis i am on Vitamin D, Pharmacy strength. Drisdol i think and i take it once a week.
Drisdol is a prescription form of vitamin D2 (ergocalciferol) used to treat vitamin D deficiency-related conditions such as hypoparathyroidism, rickets, and hypophosphatemia.
Uses
Drisdol is primarily prescribed to treat hypoparathyroidism, a condition where the parathyroid glands do not function properly, leading to low calcium levels in the blood. It is also used for rickets, a disease characterized by softening of the bones due to vitamin D deficiency, and familial hypophosphatemia, which involves low phosphate levels in the blood. Additionally, Drisdol may be used for other conditions as determined by a healthcare provider.
I was not aware Vitamin D had other uses. Maybe Lori or another monitor knows. I will search on mayo today.
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IMPORTANT

TODAY is my 2-year Birthday!! My transplant of cells was on April 9th, 2024. I am not sure if i had gone to another hospital if it would be the same results. My research study for GVHD is likely why i have had few bad side effects. Side effects i have now originated with my breast surgery. Neuropathy, dry skin, brittle nails and blood clots. Estrogen loss and chemo plus a body that makes blood clots.

I am grateful to be doing as well as i am.

Good morning, @anitasharma! It’s so good to hear from you!! Can it almost be one year since your husband’s bone marrow transplant??!! It’s always amazing how quickly time zips past! I know those first months of transplant, when you’re ticking off those important 100 days, feels like forever. After that, haha, time speeds up! ☺️

It’s wonderful he’s doing so well. The first year and actually into the 2nd year is still recovery mode. The body goes through a great deal of adapting and healing. Fatigue, at least for me, would come and go. I’d have great energy, like a puppy with the zooms, for a week or so and then boom, I’d require a day or more of just being a pile of mush on the couch. I napped, vegged out with good book or binge watched movies. Recovery simply can’t be rushed and each of us will have a unique journey.

As far as supplements, I’ve had discussions over the years with my team at followups. Should I take supplements to boost my immune system? The answer was always, “Avoid supplements that say they will boost your immune system. The immune system is amazing on its own. When it gets ‘boosted’ beyond its intention then it starts working against itself with examples of Autoimmune diseases. Which we surely don’t want.”
So it’s very important for your husband to discuss with his doctors first before beginning any supplements
Other than a daily magnesium glycinate capsule and calcium with Vitamin D3, (for my bone health) it was suggested that I just make sure I have a healthy, well balanced diet rich in antioxidant foods, high in colorful veggies, fruit, lean meat proteins, protein-rich foods, beans, lentils, whole grains, etc.. Too much of any one type of supplement in the body can throw off the body chemistry. Many supplements are unregulated so consistency of potency, ingredients and side effects are unpredictable. I’m not knocking supplements. There are reputable companies and some people swear by supplementing their diets.

From my own experience over the past few years, my labs showed that taking a brand-named daily multivitamin for women, impacted my liver with too much Vitamin A. As soon as I stopped the vitamins, next labs showed improvement. Took the vitamins again, repeated labs, and sure enough, labs were off again. So it was clearly the vitamin tabs. Similar with too much Vitamin D. That impacted my kidneys! So I’m back to the daily recommended allowance.
I’ve had other supplements such as too much ginger tea causing circulation issues…it’s a vasodilator.

I’ve also been told to never take probiotic supplements for gut health. They can cause an overpopulation in the gut for people who have weakened immune systems. Instead, eat yogurt, drink kefir, eat fermented foods such as Kimchi, raw sauerkraut, all natural foods for gut health. The key is to rely on healthy foods, veggies, fruits, fresh air, a ‘little’ sun exposure for Vitamin D.

For my lung health during BMT recovery, I continued to use my spirometer that I was given during my earlier chemo treatments. I wonder if that would help your husband? It’s just a simple little plastic device to breath into that helps strengthen the lungs. Here’s an article from Cleveland Clinic that shows a spirometer and how to use it. Just a thought… https://my.clevelandclinic.org/health/drugs/4302-incentive-spirometer

Has your husband discussed his breathing issues with his doctor?