Ups And Downs

It has been a month since my last post. The last weeks I had several Ups and Downs. At some point, I did not know it anymore. Not knowing what is going on and what will be next. Also, the “Why” question is back again. The question I don’t know the answer to yet.

In the previous post, I already mentioned about my stay in the hospital. The first examination of the testicle revealed that maybe it was some kind of very rare disorder. But my specialist had his doubts about it. He suggested that they would send the testicle to the UMC Utrecht (The University Medical Center Utrecht). There they would be able to have a deeper examination and testing options than what they would have in my own hospital. Because of the holidays, this could take several weeks before he would have the results.

Not knowing what it could be, is not really good for your mind. It starts thinking of all the “bad” things that it could be. But on the other side, it also would give a good idea of what is going on. The waiting is the most difficult part.

My Coughing is Back

One of the most annoying thing is, that my coughing is back again. Things went well. For a short time, it was gone. But suddenly it was back again. The lung specialist also doesn’t know what to do. She cannot find anything wrong with my lungs. The only thing she could suggest was to raise the dosage of the spray medication that I had. But even after using that for a few days, there is no change.

I also noticed that since the removal of the testicle, that I had lost 3-4 kilos in the last 3-4 months. No idea what this could be. I talked this over with the nurses of the Heart Failure and they thought that maybe it was the pee medication. The first step was, that for one week, I take one day a whole tablet and the next day a half table. After that one week, if things are okay, then every day one half tablet. So far things went okay. But I could see that my weight was not going up. It did go up a little, but the next day it went down again. So the next plan was, that one day, no tablet, and the next day halve a tablet. Try it also for one week. and if things go okay, then maybe stop with the pee medication and only use it when needed.

This Did Not Went Well.

The first night after I did not take the tablet, an old problem showed up again. I could not sleep. Every time I lay down on the bed, I had trouble breathing. When I sat up, it was okay. This went on for a few hours before I was able to fall asleep. The next day, I took the half tablet again.

This was strange. I did not eat anything salty that day. I also did not drink more than normal. I stuck to the 1.5-1.8L per day. And still, my body retained water.

The next day, I checked my weight, but this did not go up. So, no idea why my body was retaining water. After I took the half tablet the next day, that evening I had no problem sleeping. Also, my weight looked okay. During the weekend I informed the Heart Failure nurses about this event and told them that I would go back to using half a tablet of pee medication every day. And if needed, then I will take a whole tablet.

The Last Result

This week I had a telephone appointment with my specialist. He told me that the blood results looked okay. So the dosage for the testosterone cream was okay and I could keep on using this. We will check this again after three months.

He also had the results from the UMC Utrecht. He mentioned a lot of medical terms and I did not catch everything. He mentioned something like a chronicle disorder. This could explain all the activity they had seen on previous PET CT Scans. His advice was, that he would pass me on to a hematologist. This specialist could go deeper on the cells and could see what kind of treatment would fit me best.

Later in the hospital app, I saw his letter to my GP. In there there also was the name of the disease that could be the cause of my current health situation. The name is Rosia-Dorfman Disease. The short name is RDD.

Like the Erdheim Chester that was mentioned before, also this disease is not that common. It is also rare. I had looked around on the internet and was able to find a lot about it. According to what I read, it falls in the same category as cancer. But this one is not malignant. It is not life-threatening but there is also no cure for it. There is also no fixed medication treatment for it. For each person, there is a specific treatment.

Some Symptoms

It is also affecting your immune system. You are more susceptible to viruses. Also some of the other health problems I have at the moment, are also mentioned. Lose of weight, less appetite, more flem, coughing, but also diarrhea. I already noticed that after my stay in the hospital, almost every three to four weeks, I had diarrhea. Every time I blamed it on something that I had eaten. But now when I had read this, it also made sense.

No idea when I will have my first appointment with the hematologist, but my specialist would try to see if this could be before my appointment with my lung specialist. This will be on November 15. Right now I can only what and see.

But things like this don’t make it easier on my mind. Very often I am thinking about it and wondering in what kind of circus I will end up now again. More specialists, more medication, more visits to the hospital, more tests?

Why me? And what will be next? Will this ever end?

Housing

Maybe some of you already know that because of my health situation, we were looking for e new place. A place where everything is on the same level and there are no stairs.

I can go up the stairs, but maybe only a few times a day. Especially in the evening, I only will go up the stairs once and don’t want to go down and up again.

But finding an apartment is not easy. I am not the only one who is looking for housing. The other problem is, that because of our current situation, the apartments that we could apply for, the rent is 300-400 euro per month more, than our current place. But if you have an apartment in our city center, you also need to pay for parking. A license for that can cost almost 400 euros per year. So more additional costs.

Next to that, before you move, you also want to renovate or decorate the new place to your taste. More expenses. Then you need to pack, move everything, and unpack. This also costs a lot of time. Because of my health condition, I cannot do everything myself. So you need help. More expenses.

In 8-9 years time, we both can go with retirement. This means less income. All your income is then spent on housing and other expenses. In the end, there is not much left to do anything else. This would mean, we will have to move again. Going through everything again.

We both were not looking forward to moving at all. After talking to several people and advisors, we had a long and good talk among ourselves. In the end, we decided to stay where we are now.

The Stair Solution

One of the main reasons why we wanted to move, was to find a place without stairs. If we stay where we are now, we still have a stair in the house. One way to solve this is to install a stair lift. This will be installed on the current stairs. It is a rail on which they place a chair. So you can sit on the chair and that will bring you up and down stair. So you don’t have to walk the stairs by yourself.

At first, I had some trouble with that. But I think it is a mindset. When you think of something like that, you think that it is for people who cannot walk up the stairs. I can walk up the stairs, but not that often. I also could see it in a different way. This would make my life easier. I can go up and down the stairs more often and I will not be tired once I am upstairs.

Last week we made the decision and ordered one. It is not cheap, but my health is more important. It will take around 4-5 weeks before they will come and install it.

Parking space

In our place, the parking is a different story. If you did not see our area, it is difficult to explain. We have fully open spaces. We also have spaces that are partially covered. And there are spaces that are fully covered. A lot of the new people in the street have two or more cars. So that also makes it not easy to have a parking space when you come home late. We then need to look in the surrounding streets to find a parking space. When you already cannot walk too far, this is a problem. The other thing is, that in the winter, a lot of people from the surrounding streets, all want to park in the covered parking spaces. So their car will stay snow and ice-free. The more we will not be able to park near the house.

Because I cannot walk too far, we already last year had applied for a handicapped parking card. With this card, you can park in the handicapped parking spaces. This is handy in shopping malls, amusement parks, or at the hospital and doctor. When you have this card, you also could apply for a reserved parking space near the house. It is not free. You need to pay for it. But I think it is worth the amount of money you pay.

Reserved Parking Space

Last week I applied for a space. But I had tried to tell them what space I would like to have. It is a space, where the car is covered. So in the winter, it will not be covered by snow. If I would take a half-covered space, then in the winter I still need to make the car snow and ice-free before I leave. This means that I am already exhausted before I get in the car.

I was invited to have a talk and I could bring photos of the area to show what spot I would like to have.

They would do their best to give me that spot. Normally it could take up to 5-6 weeks before they could place it. But I was told that maybe within 2-3 weeks, the parking spot suddenly would be reserved for me.

To my surprise, the next week, the parking space was already reserved. No worries anymore that when we come home late there is no space. Or that in the winter, the car is covered under snow.

On the one side, I feel a bit guilty about it. But on the other side, it is like the stair lift. It will make my life easier and maybe more comfortable. Maybe this is the time I need to start thinking more about myself and less about others.

Closing

My health is more important than feeling guilty. I also have the right to have a bit more comfortable life.

Now with the new discovery of the chronicle disease they have discovered, I am curious to see how this will go. If I get more medication, are there any restrictions or do I/we need to change anything in our daily life?

I am also wondering when this all will stop. Every time when I think that things are stable, something new will pop up. How susceptible will I be to catch any virus or cold? How careful do I need to be? What effect will this have on my heart condition?

I think that it is also almost time for a pacemaker/ICD change. the battery, I think, is maybe still good for another 6-8 months. So maybe next year it will be changed. But as far as I know, this year I still will have one more check and then will hear what the status of the battery is right now.

Life is not easy for me. But I will try to make the best out of it.

As always, please be careful and stay safe. God Bless.