That was the sound of reality up against my face.
It was suggested to me that I use my Blog as a place to vent and log the journey I am on. I kind of have already been doing that, but a lot of the time I try to keep it a little upbeat. Not having that many good days, so there may be a lot of whining. Please don’t feel the need to respond to everything, I just need to talk it out.
I spent this past week up at Mayo. I went for my bi-weekly visit. It was a series of UP and DOWNS (note the lack of plurality on the UP). I have been battling some major depression lately, Saturday night was a meltdown of EPIC proportions. Worst one yet. But like all the others before it, I am working to move past it.
I got the approval from the cardiac surgeon to use my shower bag. Which means I will be able to shower. It won’t be easy and it won’t be often, but it will be!!!
I’ve been feeling sick the last week or so and a CT Scan that they took on Tuesday showed the beginning stages of pneumonia in my lungs. Woohoo.
Had to have (1) weekly blood draw (2) had to get an IV (3) had to have blood drawn to do bacterial cultures. Not a happy camper because I am seriously running out of veins for them to roll and blow.
Had to do a basic Oxygen study overnight Tuesday. Discovered that my oxygen drops down below 60 when I am sleeping and rarely makes it above 82 when I am awake. This lead me to the sleep center where I had to be under direct observation for the night while they did a sleep study. When it was all said and done, they determined I had severe sleep apnea. I stopped breathing and average of 61 times an hour. So I will be going to get fitted for my new CPAP.
And my favorite: Someone actually said what I had not heard directly since this all began. “Karen, the sooner you accept the fact that even with the LVAD, you are in ‘End stage heart failure”, the sooner you can start learning to work on your quality of life.
Well, there you go. I know I am sick, I get it, but to hear someone say so bluntly was devastating all over again.
Well, it finally happened. On AUgust 7, 2014, I was officially listed on the Heart Transpant list. I did not think it would happen, but it did. I am pretty sure it because of the outpouring of prayers and support.
I feel a bit weird for havig got such good news. Kinda like it isn’t real. Of course, the thought of another surgery brings on a whole new set of problems. But I’m pretty sure we can handle it. I thought I would be happier, more relieved, but I am just a bit numb.
Don’t get me wrong, I am thrilled, but don’t know how to act or what to think.I just thought it would feel different.
My life has become worse than a damn theme park with nothing but roller coasters. I would much prefer a Winnie the Pooh feel, even on a blustery day.
But alas, it is what it is and I am sure once it seeps in, I will be over the moon.
I have been waiting since December 2013 to have my follow-up heart cath. It has been a grueling wait, and after two postponements (we drove up on Monday for a Tuesday appt. I got in and they could not do the test because no one told me to stop taking one of my meds.) So we came home on Tuesday and drove back on Wednesday for a Thursday test.
We have been so optimistic about the results because I feel better.
Yesterday at Mayo I finally had my right heart cath. The goal was for my lung pressures to be lower. As they were in the beginning, they would not put me on the transplant list because my lungs would ruin a new heart. So they did the test and when it was all said and done, the pressures were down, but not far enough.
It was all I could do not to burst into tears right there on the gurney. My stomach turned over and my mouth went dry. All I could think of was having to live with this damn pump for longer. It is what keeps me alive, literally, and yet it causes me the greatest amount of pain. I’ve started having panic attacks again and I just want my life back.
The doctor tried to cheeer me up and he did his best to keep it positive, but I all I kept hearing was “not low enough.” Still not qualifying for the list is just not an option and I am not sure how to deal with the disappointment.
I am tired of crying.