My first appointment with the Pre-Heart Transplant Clinic was August 11, 2014, and at that time, the decision was made to go ahead with an assessment of my health to see if this was the appropriate time to do a transplant. With the flurry of tests and such, the time frame was 4-6 weeks, it’s now been almost 8 but it looks like the decision may be coming soon. I have one more appointment on October 8 that will investigate further something that was found in the test results, no one really anticipates that it is anything to worry about, they just want to be sure that all is well before proceeding. It definitely makes me feel better to know that they are doing their due diligence when it comes to potential pot holes but waiting is hard yo.
It’s funny cause I say waiting is hard but it’s not like it’s something new for me. For the last two and a half years I have been waiting for many things. I have been waiting for another shock, I have been waiting for a diagnosis, I have been waiting for some new treatment that would make this all stop, so I’m not sure why waiting for this decision is harder than any of the other waiting I have been doing. I guess because it will have such a huge impact on my life either way.
I have a lot of anxiety around will they say yes, will they say no let’s wait. Then I start thinking about having the surgery, not having the surgery. Then next it’s about my device, I’ve grown so used to it being there, will I be able to cope without it? Will a new heart really give me the freedom back that I have lost? Will it be more predictable? Questions I don’t have the answers to that only a crystal ball could begin to shed light on. It’s hard being anxious and afraid all the time, it really takes a lot of energy to constantly fight back at thoughts that have legitimate reasons for being there, big scary thoughts that are hard to argue with. I actually had to start seeing someone to help me manage my anxiety, to help me be more aware of the bad thoughts I have that can tailspin me into a deep depression, to catch them before I get too far down and to deal with them. It’s hard being vigilant against your thoughts and it’s exhausting. Lately I have had an increase in nightmares, they are almost a constant thing, dark, bloody, violent dreams that wake me up shaking, my heart racing and scared out of my wits. Often, my husband will tell me that I was thrashing about in the night as if I was fighting some sort of battle while sleeping, I often wake up dog tired, all of this weighs on my mind so heavily.
Through all of this I have found that meditation, relaxation and walks in nature have helped me cope quite a bit and as corny as it may sound, I try to take it one day at a time and not get too far ahead of myself. I can absolutely drive myself crazy if I let these thoughts and fears run my life because no matter what the decision is, I go back to waiting for the call that they have a donor. or waiting for the day my device has to save my life again. Thankfully I have the loving support of a partner that listens to me, hugs me and assures me he is there for me. Also I know that I just have to trust that decisions are made in my best interest, that everything happens for a reason and that everything will work out as it should.
And to live by my new motto…
It does not matter how many times you get knocked down, but how many times you get up. -Vince Lombardi