Another Blow
Another thing to process
Another Blow
Another blow to process.
It has been just over one month since the implant of the CardioMEMS sensor. By now, I know that it is working and that people are checking the data they are collecting. After the install, I got two calls asking if I was okay. Because the sensor detected an increase in pressure. I already had some idea that they would call, because I also noticed an increase in my blood pressure. Not much, just a little.
The last time that they called, just be consistent, I had an appointment in the hospital for the results from the checkup I had the week before. This time, my specialist wanted to see me in person, instead of a telephone appointment. He also wanted to talk about the future, sort of.
As I mentioned in a previous post, he would forward my case to UMC Utrecht to see if I was eligible for a heart transplant or an external support heart. It was already more than a month ago that he submitted all my files. The results of the checkup the week before were okay. The day before, he contacted UMC Utrecht to inquire if they had already made a decision on my case.
He started by saying that he could not bring this in any other way, but UMC Utrecht said that they found the risk too high to perform a heart transplant or place a support heart. The main reason was my medical history and the several operations I had in the past. And the situation with my health regarding the immunodeficiency disease.
This was a hard thing to hear. Somehow, I already knew that maybe I would be a high-risk case. But in the back of your mind, you always have that small hope that it would be possible. And now, hearing that the risk is too high, it was a blow to the face. My specialist already said sorry that he had to bring this kind of news, but there was no other way. He understands that it’s hard to hear this. At first, he said that that was the option that he hoped would work out. He mentioned that there was some kind of second option. Plan B, so to speak. He is not sure if that will work out or not, but if I agree with it, he wanted to give it a try.
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Plan B is to ask for a second opinion. The second opinion would be asked at Erasmus MC. This is one of the other places where they can perform a heart transplant or implant a support heart. The reason to ask for a second opinion at Erasmus MC is that I am already known there because of that immunodeficiency disease. The answer or the result from that, my specialist told me, could take several weeks or maybe a few months. Until then, we can only wait and keep me under control.
When you leave the hospital, you have no idea what is next. Your mind is empty. You can’t think. It was lucky that it was Friday, so I had the whole weekend to think about it and let it sink in. Get your mind straight again. It’s not easy. But after two days, I had kind of come to peace with it. Of course, I am still worried, but somehow, the focus is now on Erasmus MC and waiting to see what they will say. On June 9, I have an appointment at Erasmus MC for a PET-CT scan. And after that, an appointment with my specialist there. My specialist there wanted that PET-CT scan to see how things are in my body in regard to that immunological disease and the injections I have been taking now for a year. Maybe when I have that appointment with him, I will also tell him that maybe he will be asked about my heart failure. We wait and see.
Still, in my mind, I am still thinking about what if. But that’s all guessing. Because I have no idea what to expect from my future. For now, I put my hope and faith in the hands of the Lord.
Anyway, that’s all for now. As always, please be safe and take care. I will do the same. God Bless.
About My Posts.
About my posts. My posts are personal. It is about things I experience in my daily life. It can be about simple things, or about troubles that are going on.
The reason why I write these posts is that I want to share my life with others. Just to show others that they are not the only ones who are going through difficult times.
With my posts, I also hope to help others. Maybe they are going through the same things, or maybe there are people around them who have the same issues.
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