I transplanted from southern California to Fort Lauderdale 2-/2 years ago. My extended family lives in Ohio and I wanted to get closer to them. I am the 24/7/365 caregiver for my husband who suffered a stroke and a traumatic brain injury. I'm grateful that in terms of his physical abilities, he can do msot things for himself. His difficulties lie more in communication challenges.
I've read that 65% of caregivers over the age of 65 die before those they care for. I try to eat correctly and am an avid exerciser but on 6/14/18, MDS with MPN overlap knocked on my door.
While the disease brewed undiagnosed for 4 years, I was lucky enough to be considered low risk. I take Hydroxyurea three times a week and so far take no other meds. At my 12/3 appointment wiht my oncologist, he indicated he will refer me to a Bone Marrow Transplant Doctor in January.
My head is spinning. I may or may not be approved for a transplant since I'm 71. If I am there are financial issues to be considered and that may preclude even having the surgery at all. Lastly, there is the issue of who will care for my husband during whatever hospitalization or treatment I may require.
Trying to take everything one day & one step at a time. Things will work out for the best.
Glad to have found a place where people understand and offer support
It's definitely tough to be both patient and caregiver.
First let's talk about you:
Low risk patients are less likely to get bone marrow transplants. Does your doctor think that your risk has increased, or has he given you his reason for referring you to a transplant specialist? Is the referral just to know your options, or because a transplant is considered necessary?
A bone marrow or stem cell donor would have to be identified, either from a family member or from the bone marrow registry. Finding a good donor requires a bit of good luck.
Since you take care of yourself, eating correctly and exercising, you may be a good candidate for a transplant, if one is indeed required. Age is a factor, but general health is just as important. Usually that means having no other serious health conditions (what they call "comorbidities").
A transplant isn't surgery. It's more like a magic blood transfusion. But it does take many days in the hospital, for the preconditioning before you receive the bone marrow or stem cells, and for the initial recovery period afterward.
If a transplant is a strong possibility, you'll want to talk to the insurance company to see what you're covered for. If the transplant center isn't local, you may need lodging too. The hospital can probably give you information about this.
Now let's talk about your husband:
If you're in the hospital for a transplant, somebody will have to take over the caregiving of your husband, temporarily. Since he has communication difficulties, I imagine that he communicates best with you, making you the ideal caretaker. But who is second best? The extended family members that you mentioned may be a source of help, especially once they hear the details and realize how critical it is.
If none of them are able and willing to come to Fort Lauderdale, then other source of help include very good friends, paid caretaker agencies (probably expensive, but possibly covered by insurance), and charity groups. It would take time to look into these possibilities. Perhaps friends or relatives could help you with the research. Whoever becomes a caregiver will need some "lessons" from you so they understand what your husband needs and how best to communicate with him.
All of this planning (and worrying) may turn out to be unnecessary, because you'll be continuing your current treatment rather than getting a transplant. But I think it's smart to ask these questions and solicit advice, just in case. That's my 2 cents as a caregiver myself. You can also ask for advice from the doctors you talk to, from your husband and other family, from hospitals you might use, and from anyone else whose been in a tough situation like this.
I hope this helps.
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