8/6/10-Wait and see?

Hi All,

So tired, so tired. Just got home from a long visit at UWMC and am pretty pooped. It was a fine visit and nothing too wild happened.

Labs were mostly fine, and we'll be doing a few tweaks here and there. We did talk about my upcoming visit with cardiologist in early September (I saw my nurse practitioner today). I told her that if the echocardiogram I have in late August doesn't show improvement, I want to start thinking about transplant. And she put on the brakes.

I know it's her job not to rush things and to give the meds time to work. But we are now past the window where the meds would have worked, if they could. She talked about how you don't want to transplant too early, because the transplant meds can be hard on your other organs (kidneys, liver, etc). I told her I was aware of that (I've done pretty extensive research already) but that at this point, I'm getting really close to my wit's end.

Honestly, I'd rather get a new heart, go on with my life, and do all we can to help my other organs as we go. Plus, new meds come out all the time, and my hope is better ones will come on the market. Also, the meds I'm on now have lousy long term effects to my lungs and eyes, and if I got a transplant I could get off those.

I told her I can't just keep waiting for years for the meds to possibly work. My life is dramatically on hold right now and I don't want to stay in a waiting pattern for years. It's not fair to me, to Nick, or to our families. We are literally stuck and can't move forward with the life we want until I get somewhat better.

That was about the time the tears started. I'm glad I let her see my frustration and sadness. The docs need to see that. So by the end of the conversation, my NP said that we can certainly have more discussions about transplant as we continue down this path.

I'm perfectly happy to wait until September when I talk to my doc. But if she's not ready to make an action plan at that point, I'll have to get another opinion. Because every time I'm in the hospital, the other docs I see say it's time to get seriously going on transplant evaluation, but then I see my doc as an outpatient and she's wanting to "wait and see". I do know she knows my history better than anyone, and has my best interest at heart. My NP told me today that I'm at the forefront of the entire department's minds because I'm having these new symptoms (Sparky firing, etc) and they are all trying to do the best thing they can for me. I actually was stopped by 2 cardiologists, an electrophysiologist, and 2 nurses as I walked down the hall, just checking on me and saying hi.

The more I think about it, the more I think my NP may have just been giving me "the company line" about transplants, but maybe she's in the dark about what my doc and her counterparts are thinking. As I've learned from reading lots about transplants, it's wait wait wait wait then all of a sudden it's go go go go!

One other thing that happened today is my doc signed the paperwork for a disabled parking permit. I've put this off for a long time, thinking that I can make it, or having Nick drop me off a the door. But I've decided to put aside my pride and just have it for those times parking is just too far to walk. It really can make the difference me barely making it in the building and then spending the rest of the night paying the price, or feeling fine.

So that's all I've got for right now. I'll keep you all posted on any further developments, but as of right now we're just gonna "wait and see". : )

Love,
Jana