More Hospital Visits Coming

More hospital visits are coming.

Today I had my first appointment with the Hematologist. (One more specialist added to my list.) This appointment is to get to know each other and see why I was forwarded to her. I think it was good that I was assigned to her and I will explain this further later on.

She told me what she knew about my medical history and I told her why I was forwarded to her.

A Rare Disease

The reason I was forwarded to a Hematologist, was that my Internist did not know much about that new discovery and thought it would be better that a Hematologist would take over.

The disease that they think I have is called Rosia-Dorfman Disease. Or RDD in short. It is very rare and there is not much known about it. Here in The Netherlands, there are three specialists that are known for this. And my Hematologist knows two of them. And I think that that is the reason why I was assigned to her.

She asked me many questions about what I feel or what other problems I have. To get a good idea of what is going on. Also, to get a full idea of what is going on in my body, she wants several checks to be done.

Today I already had to pass by the lab in the hospital to give several tubes of blood.

Several Scans

She also wants to do several scans. The first will be one more PET-CT scan. I had this last May but she wants a new scan. Just to see if there is any change. Also, she wants to have a bigger scan. So from lower the body, to higher up.

Next to that, she also wants to have an MRI scan. This could get a bit tricky. Because of the pacemaker that I have, she was not sure if it would be possible to do an MRI scan. Normally, when you get the pacemaker, they tell you that you cannot get an MRI scan because of the magnetic fields it has. But she had talked to the pacemaker specialists and they thought that it should be possible. As long as that before the scan, they will adjust some settings in the pacemaker. If they find out that my pacemaker cannot stand for an MRI scan, then she wants to do a CT scan.

The MRI scan or CT scan, she wants to do it from the brain. Because just to make sure that there is no “activity” in there that should not be there.

For now, the “activity” is around the places where I was operated. The heart, kidneys, and lungs. She doesn’t know if there is also some “activity” in the brain because they did not scan there yet. She wants to see, because I had a stroke there twice, in 2013.

Rosia Dorfman Disease

I already searched the internet about this disease and there are some things know about it. But most of it is all medical terms. And I do not know about that. But I could relate to some symptoms that they are mentioning.

But what I understand, and also what the Hematologist told me, was that this is part of the family of cancer. But then the grey area. It is not bad, but also not good. It is in the middle. So far, there is no real treatment for it. It all depends on the person and each person has a different way of being treated.

After all the tests and results are known, she will discuss this with a team of specialists and she also will discuss the results with the two specialists that are known with this disease. Depending on those discussions, they will see if action will be taken.

There is a chance that they will not do anything and just make follow-up appointments, to keep an eye on things. If not, then I will hear what the next step or steps will be.

Things Can Go Quick

Today I was already called, that I have my PET-CT scan in two days’ time. My telephone appointment with the Hematologist will be in three weeks’ time. So before that, I will have the other scan also.

We agreed, that she will keep an eye on all the results as soon as they are added to my file. If she sees something urgent, she will call me sooner. Or if the results will take a little longer before they are in, then she will call me later.

Closing

Yes. That this is happening to me again. I am the one again that has something different than normal.

For now, we cannot do much about it. We can wait and hope for good results from all the coming tests. Maybe it sounds strange, but I will take it as it comes. There is not much I can do right now. I also hope that they can find the cause of my coughing. I am going crazy about it. Every day the same. No matter what I try or medication I take, it will not stop.

For now, we only can pray and hope for the best.

As always, please be safe and take care. God Bless.