A Positive Note

Some positive news, finally

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A Positive Note

A positive note. Finally, some positive news, and some less news. An update on the last events.

Tuesday, June 9, 2026, I had another appointment at Erasmus MC. This time it was for a PET-CT scan, full body. My immunologist wanted to see what the situation is inside. Because I have been using the injections now for a year, he wanted to know if they had any effect on all the infections inside. It was an early appointment, followed by an appointment with him to talk about the results. The whole preparation for the PT-CT scan is very long. First, they need to put in the needle. Then they will inject some radioactive thing for the scan. After that, you need to sit or lie still for 45 minutes. Also, in preparation for the scan, I was not allowed to eat anything within 6 hours before the scan. I was only allowed to drink. And I had to drink 1 liter of water. This last one is a bit difficult, because I am only allowed to drink 1.5 liters per day. So I drank a little less.

The scan itself took only 7–9 minutes. After the scan, we had to wait for almost an hour before I had the appointment with my immunologist. In that time, we had time enough to finally eat something.

The wait for the appointment in the waiting room would take maybe 15 minutes, but after 7 minutes, I was already called in. He pulled up the scan and said that he was very happy with the results. All the infections and inflammation were reduced by up to 90 percent. You could still see a little bit in the scan, but most of it was very little. He said that the injections had a positive effect on it. I still needs to continue taking the injections. Still, one injection per week.

On the scan, he also saw that my heart was enlarged and that the right kidney had shrunk. Both not really good news. And that also explains the reduced kidney function. I told him that my cardiologist had admitted me to Erasmus MC for a heart transplant or support heart. And that maybe they also would contact him regarding the Rosay Dorfmann Disease. He said that he would give them a positive result after seeing the scan. But he would also advise them to do maybe a kidney transplant. That was a little bit of a setback. But still, I take it. All in all, we went home happy because of the result.

Now it will still be a waiting game on what Erasmus will decide regarding the heart transplant.

My CardioMEMS is also doing its work. The last time they had called me, that the pressure had gone up and I had to take a bit more medication. And that worked.

This time, I had to get a call again. And I was expecting it. On June 14, it was my birthday. As usual, we had gone out with family for dinner. And of course, I had eaten and drunk too much. In the evening, I already told my wife, “For sure, tomorrow I will find out that I have gain wait, and maybe they will call from home monitoring”. The next day, to my surprise, I saw that I had lost 0.2KG. Strange, but okay. But around the afternoon, I got a call from the people who monitor the CardioMEMS. They had seen a raise in the pressure and wanted to check how I was doing. She had several questions. I told her that it was my birthday yesterday and that I probably had eaten and drunk too much. She said that she would discuss the results with a specialist, and later that day, I would receive a message about what they wanted to do.

Late afternoon, I received that message. For three days, I have had to double the dosage of my pee medication. Then, on Thursday morning, I still had to take the double dosage, and after that, back to my normal dosage. I can live with that. At least I got a big appreciation for the CardioMEMS. It proves that it really is working. Normally, you wait until your weight goes up before you take more medication. But in this case, my weight had gone down. If I didn’t have the CardioMEMS, I would not have done anything and just continued as normal. With maybe the risk of ending up in the hospital because I retained water. But this time, it prevented that.

Closing

I am happy that, finally, there was a positive result. And that it proved that the CardioMEMS is working for what it was designed for. Preventing a hospital stay.

It is still waiting for what Erasmus MC will decide regarding a heart transplant or a support heart. And what will be done about the kidney?

For now, I thank God for the positive effect of the injections. I still need to take them, but at least I know that it is working and worth the effort of taking them. And also for the good working of the CardioMEMS.

As always, please take care and be safe. 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.

I hope these posts can be of some help to everyone.

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