Hi All,
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Love,
Jana
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