When I was actively going through the ordeal of HF/LVAD/Transplant and sketchy recovery, I fell into the trap of questioning my Higher Power’s decisions about me. I could pull myself out of these morose meanderings of my feeble mind, but, not always easily. There were days and weeks where there seemed to be nothing but bad and then worse news then maybe a dose of a little more bad, worse news. It was during these times that I inquired of that Higher Power, “ what the hell did I do to deserve this one”.
I know that I was not alone in the bad news department but Heart Failure, especially end stage Heart Failure is a very lonely disease sometimes. It’s not a disease that carries straight forward answers to our debilitation. The things you read are very generalized statistical descriptions of things they can try, new trials going on to help minimize the condition or extend your life, but, nothing that say’s; “treat it this way and you can be cured”. There is not one thing you read that even comes close to that, other than, if you get sick enough, and you are blessed enough to not die of this or that typical complication, you may get a new heart. Even in the realm of transplants, you always know, these odds are not good. There is nothing that say’s – take it to the bank, it’s gonna happen. No, in actuality, these are odds that favor you going up to the Big House rather staying around here with your family, friends or pets, and that’s what gets scary when you go down Negativity Lane.
What I have found out, a bit over 2 ½ years post transplant is, all those trips back and forth on that lane is that they were just a bunch of mental machination made up of my own fears and lack of Faith in my Higher Power. I have found that I am still recovering everyday. I am getting stronger even though I have had a, “complicated post transplant experience”, as my transplant coordinators and doctors describe me.
I have been given a second chance to improve my condition and hopefully the condition of those now going through it by sharing my trip. It’s been “a long strange trip” as the song goes and I think it will continue be that way, mainly because my mind has been expanded, dramatically awakened from this incredible ordeal.
The many many stories that we at the HeartBrothers have heard since we started the foundation a year ago boggle my mind. They boggle my mind but, at the same time they enrich my soul because of the raw emotions that our fellow patients and families are going through and pouring out to us. Each and every story is different, each one uniquely theirs but similar in so many ways. I can understand them because I have been there and made it through, scathed and tattered, but through. I empathize because I have been awakened by the experiences and I believe I am a far better man because of it.
I think I am less selfish, more caring, more kind and loving – all due to the amazing “long strange trip”of HF/LVAD/Transplant that I am on.
To those of you reading this that are on that trip right now, whether it’s a patient just hearing they have Heart Failure or those hearing they need a VAD or Transplant, or a loved one of them, please just take deep deep breaths. The trip that you go on will be uniquely yours but similar to millions of others – you are not alone and there are millions moving along and living life at whatever stage of the trip they are on.
hrough my experience, my thoughts are thus ; do not waste any more time than humanly possible on negativity lane. Go through the trip with the thought that you will make it through, and like me, you will come out of it a healthier, better, more caring and loving person because of it. It’s not always easy to do this, but, maybe you can remember this Blog when you slip into the negative space and come out of the funk sooner, more easily or, never go there at all. That is my hope and wish for you.