Well, I am home from my first week in hell. To say I am exhausted would be a gross understatement. I underwent so many tests I cannot even remember them all. I do know there was lots of poking involved and that just sucks. We have run into a small obstacle.
What they were able to find out is that I am considebrably sicker than they thought I was. After everything, we have determined I have a longer journey than expected.
I go to committee on Thursday. This means all the people who saw, and talked to, and poked me, will get together with the folks who decide whether or not I can go on the list. Chances are I will be rejected. I know, right. After everything I have been through. How can they do this to me?
At first I was horrified, but they explained that my pressures are too high and right now they could not put a heart in because my body would just ruin it again. I had no idea I was that sick. Too sick. So I will wait to find out if and when they will put in the LVAD. Once I get that, we will work to get my pressures down and then when they are down, I will go before the committee again to get approved.
It may be as soon as before the end of the year that the device goes in, but they assure me I will feel better once I have it. I met a couple folks who have the LVADs and I am not as freaked out as I was in the beginning. I am determined not to waste a heart.
It was weird, yesterday they doctor was talking to me about my condition and everything, and he touched on me being a writer and a publisher and he suggested I consider writing a book about my journey. He says that so many others could benefit from my experiences, the highs and lows, and everything.
Any thoughts on my doing this? I am by no means the only one going through this, but he says, not everyone can write it. I’d really like to know what you guys think. Ya’ll are my support system, even if we have never met. I rely on your positive notes and so forth, because I am sure as hell having a hard finding them on my own.
This is a wonderful idea, Karen! This would be, not only good for those going through this journey, but writing everything down will make it much clearer in your head, and help clarify decisions. Very exciting idea. Kudos to your doctor! And kudos to you for being so strong and keeping everyone up-to-date on your progress.
Write the book. That is all.
I think that is an awesome idea. it would help others to know that someone else is going through what they are. and it will help you just to get some of the frustration of everything out also!
I want you to do whatever will help. You have kept us all up to date with your postings on FB and I think you have probably enjoyed a place to plunk thoughts down – writing it all as you go would probably be cathartic, even just for you. I am as you might imagine fascinated by this device. It is amazing how far medical science has come since Kel was sick. I am so glad you have this option! Seriously glad. Hugs, big sloppy ones even. I will be in Florida again when the kidlet graduates and I plan to be seeing you then, face to face for bonafide hugs and squeezes. 🙂
If nothing else keep a journal but the journal should include more than facts it must include your feelings.
Books are best written when you are farther down the road and the journal will help you to remember. When you are going through all of this it is easy to think that the experiences are so profound that you will never forget them but you will and that’s because the experiences that are coming will be even more profound and judging from my own experience there are so many of them it all becomes a fog…a twisted pile of steaming memories all welded together and unidentifiable.
Why do I know this? Because I am in the process of writing a book right now, not about my transplant but rather of my memories of living of which the transplant is one very large and significant event. What I have found as I try to recall the transplant and the 12 years that led up to it is that my memories are hazy, inexact, and often innacurate. Sometimes I mix events together that shouldn’t be and I have the wrong people in the wrong place and the wrong time.
So write the journal first. I found that my instincts told me to write objectively with emotional distance but those are journalistic instincts and this journal and some day book must reflect your humanity. So do what the docs suggested. Write. If not books write something…you can write in my group, you can write a guest blog on Bob’s Newheart and you can write your own blogs but write, write everything you can because some day it will all be invaluable.
Yes. Write that book! I regret that I did not keep a journal of my transplant “adventure”. So even if you keep a journal for yourself, It will help you now and later and when you are ready the notes will help you write the book.
I wish you only the best outcomes with your LVAD and future transplant.
I hope this is the right solution for you, Karen. And yes, writing a book about it may help you figure out how to process it all as well as help others going though the same thing!