The week began as most weeks begin. My weekly visit from my home health nurse. Everything went without a hitch. The picc line dresssing was changed. My weight is stable -219 pounds, my fasting blood glucose is less that 120, and all things considered, I was feeling good. The week passed – mostly uneventfully. There was that one thing about actually GETTING LISTED FOR A HEART TRANSPLANT on Thursday, but all things considered, it was a quiet, uneventful week. Oh, I was approved for listing a couple days earlier, but I didn’t actually make it onto the list until Thursday.
All of a sudden, the real…reality of the situation hit us. Where was the phone? Our instincts were to hold on to the phones lest we miss the all important call. I am not sure why, perhaps it was the excitement or the anxiety of the situation, but I noticed a bit of chest pain. Not bad pain and not familiar pain. Do you know what it is like getting slugged? Not the moment of impact. A moment later. The muffled pain, not quite an ache that remains after getting hit. That is what I was feeling in my upper left chest. As it was not a crippling pain, and it seemed to come and go, I chose to ignore it. But the pain never disappeared. Oh it did for brief moments, but I noticed it hanging around more and more.
Finally, next Tuesday rolled around and the home health nurse was back. As always, the first question out of her mouth was ” How are you feeling Mr. Hayden”? At first I hesitated. Nurses do not like to hear that their patients are having “chest pain”. I felt that there was a better chance than not of being instructed to go to the emergency room. I told her. At first she looked disapprovingly at me. I explained that if I went to the emergency room every time my chest hurt that I would have to move in. My blood pressure had not changed. Nor had my breathing. I was a bit nausiated, but that could be a hundred things. She called the cardiologist and left a message. From there she changedd the picc line dressing, told me that she would call as soon as she talked to the cardiologist, and off she went.
About an hour later, I received a call from the cardiology nurse. The doctor wants me to come in for an EKG. They just want to be sure it is nothing serious. A patient in my condition…with chest pain…I am thinking, there is no way they will let me go. I am going to be sent to the intensive care unit. Augh! A short while later, the ekg is accomplished, some blood is taken, and the doctor enters the room. He begins…(paraphrasing) he asks me about the stent that I had placed several months ago. We talk about it a bit. ( If you don’t remember, go back several months in this blog for details). He said that it may or may not be heart related. He thought that maybe, just maybe the re-stent of the artery is closing. It is a very small artery and we were told that closure could happen. Especially since I was now off of “Plavix”. He was not too concerned though. He said that even if the artery did occlude (close) that it was an insignificant artery that should not cause too many problems if it does close. “Besides”, he said We will be replacing you heart soon.
The conversation changed to the transplant. He said that he had already had two offers for new heart. He turned them down, considering them “Marginal Choices”. He felt confident that a good offer would happen sooner than later, although I must say here and now that there really is no way to predict how soon. Today, next month or next year. Know body really knows with any certainty. My panel-reactive antibody test was 0%. That means that I am least likely to reject a new heart. Not that I won’t, but people with a 0% have a tendency to do better. We are ready!
But getting ready takes some doing. First, you need to scope out the hotel that Denise will stay. Although we live in the same city as the hospital, it is on the other side of the city. I don’t want here to have to spent 12 hours straight in a hospital room. She needs to take breaks, do other things. But, I would obviously like to see her periodically through the day. Getting a hotel room nearby allows Denise to come and go through the day. It is stressful enough. She shouldn’t have to drive back and forth. We have to make arrangements for Bear. I need my children with Denise during the first 12 hours or so after I get called. They need to be there to support Denise, so someone needs to grab Bear and take care of him for a week or so. We need to make sure all of the paper work is in order. The power of attorney, medical living will, stuff like that. We have all that stuff, but copies need to be in the right hands ahead of time. The less obvious things need tending to as well. It would be a tragedy if I get called for the transplant, but I have pneumonia. I would not be able to get the surgery. A dozen other ailments would equally squash the surgery. Both Denise and I must take extraordinary precautions to stay healthy. Those efforts are kind of like practice, as that how we will need to carry on after I return home from the transplant. Making sure the cars (both of them) are in good working condition and gassed up at all times, a telephone tree set up so that we do not have to notify everyone ourselves, and of course my blog. I have already written the blog announcing the transplant. I will post it as I walk out the door. I have another one which I hope will not be used. It is titled “The Last Word”. My daughter will post it if the need arises.
I have so much more to share with you, but I see this blog is already getting long. Let me finish by saying this: Do not ever delay going to the emergency room. The rule of thumb is: if you are not sure, GO!. I didn’t because I have over 20 years of knowing the chest pains I get, and while I didn’t go, I did disclose the information to a health care provider, and did’t argue with them when they made up their minds about how to proceed. Always tell someone if you are not well. Always seek medical advice. Always better safe, than sorry.
Please tune in next week. Tons of stuff to talk about.
If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here. http://www.brianhayden.com/ My book is available in Paper back, Kindle and Nook.
This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that know matter what -you do not give up. There IS hope.
Oh Brian this post made me teary. Not in a sad way because I know you will be SO much better after your surgery but in an anxious excited way. As always I am praying for you and your family. I am adding your doctors and medical staff and your donors family. God Bless you:)
I am so impressed with your courage, Brian! You don’t give up and you stay positive, which, considering all you’ve been through, is amazing!
My prayers are with you, always!
😉 Cyndy Peak Essahbi