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Caregiving Frustrations: When the stuff hits the fan!

Caregivers | Last Active: Sep 21, 2019 | Replies (34)

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@bradmm

Very kind of you, Becky! I had to look back through this thread to see what all I have shared in the past. For some reason, I didn't see anything about my wife's transfusions which began in late June. Maybe I missed it. Her weekly injections to keep her blood counts up apparently have not been enough so the next step is transfusions. After the first one, we realized it was not that big of a deal in terms of having it done. It is a big deal, however, for her prognosis. The only other treatment is bone marrow transplant but that's very risky and is only offered, to my knowledge, to younger, healthier people. Maybe if it was that last resort... I guess it's just a matter of risk assessment. The injections used to be every three weeks. Now they're every week. The transfusions are about every two weeks but they may get more frequent as her body is less and less able to produce healthy blood cells. At some point, that will no longer work....

I hope she NEVER DISCOVERS THAT I'M WRITING THIS... I'll be in big trouble. 🙂 She's very private and hardly anybody knows about her disease except me and our kids. I've told my three remaining family members but she doesn't share it with her friends. Makes me feel disloyal but I need someone to talk to. She has me to vent to and I am always playing the cheerleader role to help keep her from getting depressed about all this. Most of the time, we lead a normal life except for the doctor visits (our new normal). She has amazed everyone at the oncologist office because she still goes to her work out class and has recently increased it to four times a week. I always tell her that the most either of us can do is to try to stay as healthy as we can! That's all we can control, the rest is out of our control. I think by me staying positive all the time it really helps her and we are constantly holding hands and being affectionate. I tell her I love her frequently and she expresses her appreciation of having me there to support her. I think it's about as good as it can be considering the reality of the situation.

As for me, I had heart catheterization and, going in with such a high calcium score, I was scared. I got what I considered great news... most of my arteries were only 25% blocked except for my LAD which had a "small part" (not sure what he meant) that was 40%. They don't do stents until you get to 70% or above so I didn't get any. Now, I'm also working out with my wife (not in her class, I do other stuff) and eating as healthy as I can. My cardiologist doesn't want to see me for six months and I'll get my cholesterol numbers again. My weight is as low as it's been in 20 years and I'd like to lose just a bit more. I'm still very anxious about the whole thing because I used to think I was perfectly healthy... but I know it was a good thing to find out when I did so that I can now work harder to be as healthy as I can. Like I said, we now share this goal for different reasons but that's our focus and it provides a positive attitude for us both to know we're at least trying to hold it all together.

May have said this before but my purpose in life is to give her the best life I can so we're going to Greece and Santorini in October. Don't know how much longer we'll be able to travel so gotta do as much as we can, while we can!

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Replies to "Very kind of you, Becky! I had to look back through this thread to see what..."

@bradmm I am glad to see that you posted here. It's hard to be a cheerleader all day, everyday, isn't it? So, it is good you checked in here. Changing your lifestyle around sure sounds like it has worked for you and your health levels! Your wife is lucky to have such a supportive partner.
Ginger

@bradmm Have a wonderful trip!! We also went to Europe this summer because I wanted to prove to myself that I could do it. And we were successful! I made sure I took a portion of my medical records, doctor’s names, etc. I just didn’t want my husband to have to explain everything, just in case. I just know you’ll have a wonderful trip! Let me know how everything goes