An Update On Things

Here is an update on things. I know, I did not write much these last few months. Also for me/us, we needed time to think things over and process things. We never know what will happen next.

I thought at the end of November, that I had all my appointments for this year and that I would not need to go to the hospital. But I had spoken too early. I know that the month of December is always a month for me that I would like to skip over. It looks like that every time in December, things are happening with my health.

November

In November I had several appointments. Medio November I had an X-ray of the lungs and after that an appointment with the lung specialist. This was just to see how thing were going with the lungs. This was good, because I am still coughing. Now already for almost two years. Some days it is okay. Other days, I am going crazy. I am than coughing too much.

The X-ray was okay. According to the specialist, everything looked okay. When she saw me, she already started to say that I was very special and different. Mainly because she had read about the Rosia Dorfman disease that was discovered. She had not heard of it before, so she had to read more about it. According to what she had read, it had some minor effects on the lungs. But again, she could not say that for sure. So the medication she had given before, I still have to use it. I could try to reduce it and see how things would go.

Because of the Rosia Dorfman disease, she wants to keep an eye on things. Just to see how all the tests would go and what the results would be. She would make an appointment for three months, so she could keep an eye on things.

Other Appointments

I also had a telephone appointment with the heart failure group. Because of changes in the medication. I noticed that after the last change, I did not really feel that well. So we went back to the previous dosage. After two weeks they would call me again, just to check how things were going.

Near the end of November, I also had a CT scan of the brain. The original plan was to do an MRI scan of the brain. But because the Cardiologist informed the Hematologist, that there is a loose wire from the previous pacemaker, the advice is to not do the MRI scan. They could not tell for sure, what that wire would do during the scan. There is a chance that maybe the wire could start wandering through the body. That is why the MRI scan became a CT scan.

After that, I also had an iron treatment. My iron level in the blood was low, so the hematologist advised me to have that treatment. I already had one, maybe two to three years ago, so it looked it was time for another one.

Pacemaker/ICD Checkup

The next day, I had my pacemaker/ICD checkup. it was already 6 months after the last checkup. But because of the battery status, the interval between the checkups was shortened to 6 months.

The checkup was okay. In the logs, they could not see anything strange or different. The battery was still good for a minimum of 4 months and a maximum of 17 months.

Just to make sure, they let me hear the sound again, that the pacemaker/ICD would make if the battery status became too low. When I hear that sound, I have to call the pacemaker/ICD group and inform them about it. So they could plan for a replacement. I also asked them, if they could see, around what time this alarm would or could go off. I heard one time from someone that his pacemaker always would make a sound around the same time. And I just wanted to make sure, that the sound would not go off in the middle of the night. He told me that if there would be an alarm, it would sound around 9:00AM.

So, the next appointment for a checkup will be in 6 months. Unless of course, the alarm goes off before that. We will wait and see.

December

Of course, I was hoping for no appointments this month, but suddenly there was one appointment with the hematologist. She wanted to go over the results of the CT scan and see how things are so far.

The result from the CT scan of the brain was okay. In the past few days, she also contacted the RDD (Rosia Dorfman Disease) specialist in Amsterdam and explained my case, to see what he is thinking of it. The advice was, to send the tissue of the testicle that they had removed, to Rotterdam to the anatomy pathologist, for a second opinion.

For now, the hematologist thinks, that the RDD is contained only to the testicle that they had removed. But she wanted to wait and see what the results would be from Rotterdam and from the blood and urine check she wanted from me that day.

The thing is, last time they discovered also iron deficiency and anemia. Because I had that iron treatment, she wanted to see if that was okay now. This is, because she was thinking of also doing a gastrointestinal examination. To see if they can see if there is something going on there or if it is bleeding somewhere, internal. But this kind of examination is very difficult and complex in my case. Because of the medication I am using and because of the heart failure.

The Difficulty

In my case, I have an artificial heart valve. For this, I am using medication. I would have to stop this medication and use injections. Also, because of the heart failure, I have a limitation of liquid I can take per day. I am allowed to have between 1.5 and 2 liters of liquid per day. For this examination, you have to drink a lot of water. More than what I am allowed to drink. This is why the examination is put on hold. If it would push through, then I would be admitted for maybe one or two days.

Things are never easy or simple, in my case. But it is good that it is put on hold, for now.

It was agreed that she would make a telephone appointment, to talk about the blood and urine check and see how we would go on from here.

If RDD is only contained to the (removed) testicle, the follow-up will be, that every now and then I need to have checkups. Just to make sure.

Rosia Dorfman

RDD is a family of cancer. It is not on the good side, or on the bad side. This is somewhere in the middle. It is very rare and there is not much known about it.

If it is only contained to the (removed) testicle, then every now and then a checkup. If not, then she wants to talk about further treatment. Because it is a family of cancer, it could spread to other parts.

What I could find about it and what the hematologist told me about it, it has got something to do with the white blood cells, and your immune system. There is more, but all that I could find is all in medical documents, full of terms and words that I didn’t understand.

I asked her if she could tell me how rare this disease is. What she found in the documents was, that it affects 1 in 200.000 people. Something like 100 people per year are discovered to have this. But these are all numbers from the USA. She told me, we are much smaller, so it would be something like 1-2 people per year. And then mainly in the age between 8 to 20 years old.

That is also the reason why I could not find anything about it, in regards to here in The Netherlands.

Closing

For now, I am happy that this was discovered, purely by accident. At least they are in time to see what to do or how to proceed from here.

On the other hand, there is no certain thing. It is something new and there is not much known about it. I am happy it was discovered, but uncertain of what is going to happen further. Many mixed feelings and sometimes difficult to explain to others what is going on.

Sometimes I wonder, why life is so difficult for me. Why am I the one that all of this is happening to. But, as with many things in life, we cannot get the answers to that. I need to accept it and deal with it. This is sometimes not easy. I am not showing this much to the outside, but inside there are so many questions.

People on the outside tell me several times, that they admire my persistence. That I don’t let things like this let me down. But what else can I do? Give up? I think that that is the easy way. This is not what I have chosen, but I need to accept it. It is not only me but also everyone around me.

I am trying to make the best out of it. Everyone has his own burden to carry, and the health situation that I am in right now is something that I need to carry. Not easy. Sometimes I wish I could talk to people who are in the same situation as me. They understand or have been through the same things. But there isn’t.

Sometimes I read things on the Facebook group for heart patients, and that sometimes makes me depressed. So I will stop reading those stories.

Anyway. That is life. For some it’s easy, for others, it is a struggle.

For now, you are up-to-date again. When there is more known, I will try to post something again.
Have a nice and blessed day. As always, take care and stay safe. God Bless.