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Living with MDS

Blood Cancers & Disorders | Last Active: 9 hours ago | Replies (92)

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@nylechojnacki

I'm not to far from U of M or Henry Ford. My white blood cells are normal so my immune system isn't the problem just my marrow iisnt producing the hemoglobin l. So far I've had three blood transfustions in two months just to keep it above 7. The drug my hematologist is trying to get me on starts with a r I think. I was a little overwhelmed with the news.

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Replies to "I'm not to far from U of M or Henry Ford. My white blood cells are..."

It’s very normal to feel overwhelmed with your diagnosis and the need for a BMT. I know the feeling! The BMT process can have its little challenges but well worth the effort to have the opportunity to be in a durable remission.

There is a time commitment for the transplant. Each clinic will have their own protocol. Some institutions treat in-patient, where you are in the hospital for several weeks, then released to an offsite lodging for another few weeks of recovery before going home. I was at Mayo-Rochester where we’re requested to reside within 30 minutes from the clinic for about 100 days or so. I was an ‘out-patient’ for most of the time. My husband and I relocated to a hotel suite for 4 months. You’ll find out more when you have a conference with your transplant doctor.

Once accepted for transplant, your transplant doctor will order blood work for DNA analysis to pair you with a bone marrow donor on the registry. Once there’s a donor match found…the process begins.

You’re fortunate to be near two larger clinics. You might want to do some checking to see which clinic would be a better fit for you and what they offer for requirements of stay and followup care. Your BMT team will be your lifeline for quite a while. One little note that I will share is that it would be good to find out the followup schedules for post transplant patients. I know of some clinics stop following patients within a year or two. From my experience at Mayo, I’m relieved to know that I am a patient for life and will continue to have annual follow-ups with my transplant doctor. If there are ever issues, he and my team are still my lifeline. That brings a level of comfort for me and my husband.

Have you had a bone marrow biopsy yet? Has there been genetic sequencing to see if there is a mutation involved in your diagnosis?