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Hi there, my name is Pete and I've lived with heart troubles all my life.
At the age of 9 I had my first operation and then at 19 I had an artificial aortic valve installed. A little while later that failed and I had to have it repaired - but while in the process of finding someone to do it for free (Deborah Heart and Lung in Brownsmill, NJ) because I didn't have health insurance and couldn't afford it on my own - my heart got weaker and larger.
Fast forward to about age 35 and I had stem cell therapy performed on my heart which didn't take and failed.
In my life span I've probably had cardioversion done a half dozen times or so, and 5 years ago they finally did an ablation and implanted a defibrillator.
So within the last 4 months or so my cardiologist informed my EF is "around" 20-25% and my heart has become even larger and she wanted to put me on the transplant list. However, I declined.... I have several reasons for it, first and foremost I am a terrible patient. I rarely get my blood tests done when I'm supposed to and often I forget doses. I couldn't imaging being under the strict regiment that is required of a transplant patient.
Well, after my latest appointment and the discouraging news, it really messed with me. I've taken an "I don't care" approach to things now. She didn't really give me an expiration date but I strongly feel it will be within a couple of years and I can feel the decline in my health. It's more difficult for me to do the things I used to be able to. I recently lost my father and saw how we had to dispose of his "stuff" which made my feelings even worse knowing that's how it is when we leave this earth. And today I decided to go to a local support group and the website said it started at 6pm but instead it started at 1:30pm so I missed that too.
I realize there are people worse off then I am but they are them and I am me and me isn't feeling great about the future. I see no point in doing stuff because it will all be in vain. I have no desire to go out and meet new people or attend events as soon they won't matter. Everything seems absolutely pointless now. I'm not self destructive but I'm also not not self destructive if that makes any sense. I just don't know how to handle this information properly... There just doesn't seem to be a point to anything anymore...
I'm having a heck of a time moving forward with any form of desire to do anything. Well, I'll stop the rambling for now....
AHAASAKatie, February 5, 2019 9:06am EST
HI Pete321, first lets start with, you are not rambling. You are sharing what is happening in your world and where you in processing all of this. I can understand how you can feel frustrated and not really sure what to do next. In reading through your post, the word ambivalent keeps coming to mind- maybe that is how you are feeling? And although I understand where you are coming from, I encourage you to consider talking to a therapist and working through this. Even if the longer term prognosis is not favorable- you have life left to live NOW. There are still joys in the world that you can explore.
Please know that where ever you are this- we are glad you landed here with us and we want to help support you. Best Katie
NurseTessa, February 5, 2019 9:39am EST
Hi Pete, I’m so sorry that you got the short end of the stick when it comes to your heart health. What you’re feeling is very normal when facing such severe health issues at such a young age. Reaching out here is a great start.
I understand not wanting to be placed on the transplant list, and being realistic with your own limitations and ability to take your meds and have your blood drawn.
In the meantime I would start thinking what you want your legacy to be. How would you like to be remembered, what do you want to leave behind. If you start by thinking about this in a positive way you may be able to turn around your way of thinking. You need to find something positive to focus on, it will help you not dwell on the negative.
Ultimately the best plan would be to take ownership of your health, take your meds, have your blood drawn, see your doctor, and have your mental health taken care of. You deserve the best health you can achieve, you’re worth putting in the work.
Be well, T.
llorenz1221, February 5, 2019 9:42am EST
Pete321, never feel like you are rambling and please do not feel that just because others may be worse off than you that your story doesn't matter. It does matter, it matters tremendously, because it is your story. In a group that I have become a part of that has been my biggest learning experience, everyone has stuff going on, and is fighting a battle of some kind, and no one person's battle is better or worse than anothers. Please reach out to a therapist, or try the local support group again, and find a group or person that can help you understand that you do have value in this world, that your life if worth living, and that there is so much good in this world, even when you feel like there isn't any. Fighting through the darkness is a tough battle, do not feel like you have to go through it alone, reaching out to others here is a wonderful start, and shows that you aren't ready to be done, continue that fight one step at a time. Please continue to reach out, and let us help you, wishing you my very best.
JamesPL, February 5, 2019 8:49pm EST
I want to echo some of what others have said in terms of taking control of your health. It IS important that you make the most of whatever time you have left on this earth and really that is true for any of us. Regardless of how we feel or what kind of diagnosis any of us have been given, none of us really know how much time we have. We have to take the hands we have been dealt and play them as best we can. I hope you would reconsider being placed on the transplant list. You appear to have lost hope and being on that list will help you regain some of that hope. If you end up getting a heart transplant, your life will change and you will react accordingly. There are many heart patients on this site who have experienced life changing events that have made them view life from a different perspective. It is truly remarkable what you have had to endure but I hope you can make every effort do all you can for yourself as difficult as that is for you.
I truly wish you well and I will have you in my thoughts.
JimSinclair, February 9, 2019 7:32am EST
While I agree that your situation is not sounding good and you may have a long difficult journey ahead; I think this journey will be more successful if you can convince yourself to focus on changing your attitude from a Woe is me to a Wow is me attitude. This could start with three things; accept that living through all you have gone through demonstrates a strength that will carry you through the journey ahead of you, think in terms of having a best before date rather than an expiration date and that while we do not know what that date, it simply means that while things may no longer be there best they can still be good until we are gone. Of greatest importance jess to stay in the moment and look for whatever positives you can find in your life or in life in general. It is amazing how simply viewing and contemplating one of nature’s wonders can change attitudes and inspire some folks to keep moving on through life. For others an appreciation of the people around them may be what inspires them. For many of us it is a matter of focusing more on what we can do and our strengths rather than what we can not do and our weaknesses. Pete, if you make it a priority you will find your own positives.
My issues have not been with my heart, they have been with my brain (massive bi-lateral strokes).For the first few years, when my focus was on all that I had lost and things I could no longer do I was a terrible mess. Once I started to focus on the things that I could do and made efforts to do those things I knew that obstacles were just challenges to be overcome and I eventually progressed to what I considered to be a full recovery.
Pete, I believe that once you find the positives in your life you will realize that deep within you; you have what it takes to do what it is needed to be done.
DolphinWrite, February 15, 2019 1:58am EST
You have gotten some good words of wisdom from some great folk. I want to add something. The good Lord made you. He loved you so much He created you. He knows your difficulties. There is a reason for all of this. I don't know what it is. But knowing this gives hope. In your difficulties, perhaps think how going through this, praying, may put things in a different light. Also, as others go through difficulties themselves, if you start hoping, helping others in their difficulties, your words is encouragement, how this may help them. I hope all the best. God bless.