Breathing has continued to be a challenge for me. When my ankles were swollen and I walked on them it made the swelling worse. I have found the same thing to be true with my lungs. As I use them, like walking briskly or talking a lot, they seem to get worse and I find it hard to breathe. Sometimes it last for up to 2 days before it calms back down, the whole time I can’t get enough air. I feel like my lungs are full of cotton balls or like I am trying to breathe through a dust mask!
Today I meet with the Pulmonologist to talk about my challenges breathing. This is the specialist my primary specialist sent me to for a lung capacity test and consultation. I had hoped to actually do these tests right in that appointment, but it turns out that I have to setup another appointment with the hospital for the lung test and a cat scan. I hope to get this done shortly.
The crazy thing for me is having to deal with these doctors. You can never just assume that you have a good one and that they will do what you need. This doctor was a little upset that he wasn’t the primary specialist. His approach was not only different but I wasn’t okay with some of the things he suggested. For example he kept saying that he really wanted me to get a biopsy so that we could be certain that it was sarcoidosis. I asked him if he had any question in his mind that it might be something other than sarcoidosis. He said that he was almost certain that it was sarcoidosis given my classic symptoms and my family history and that he would be very surprised if it were anything else.
“So”, I said “that being the case why would I get a biopsy?”
He told me that he would not feel comfortable putting me on any of the alternative medication, especially with all of their associated high risks and side effects unless he was certain that it was sarcoidosis.
Uhh…. Hummm…. Put me on alternative medicine?
I asked him if he thought that the prednisone wasn’t working very well and if he thought that we should consider using these alternative medications. He told me that to the contrary he thought that the prednisone was working well and was encourage that it had made as much of a difference as it had in such a short time. In my mind this clearly gave no logical reason for me to get a biopsy. I clearly have sarcoidosis, the prednisone is working…. So why on earth have a surgical operation that is unnecessary? His answer was because he wanted it.
This is what I am talking about. I find that you just can’t take a doctors word for things. They should be able to explain to you their reasoning and I should be able to understand and agree with it. If not than then I’m not going to do it, and perhaps I don’t have a good enough doctor and need to find another one. I think that might be the case with this one. I’ll have to see. Good thing he is the secondary doctor, I would not have kept him as my primary.
So far I can still see the value of getting the lung test and the cat scan. The lung test should help me see if there are any air capacity issues and the cat scan can show much more detail about my lungs then a standard x-ray can. To be honest though I don’t know that it is going to tell me much more than I know already.
My expectations are that I will simply need to watch myself and not use my lungs so hard while letting the prednisone do its work. Simple yet sound advice. After all of the scans and tests, I bet this is what comes back. Have to see if I’m right about that one.
Sleep continues to be a challenge for me which is a side effect of the prednisone. Some nights I simply don’t sleep at all. Other nights I sleep almost as well as if I was not taking the medicine. One thing is for sure, when I can’t sleep I shouldn’t even try. I have had some success in just embracing that fact that I’m awake and gotten up and worked. There is always tons of computer work to do. The challenge with that is dealing with the catch-up part and not letting it impact my life. Although I don’t feel tired I still feel the loss of concentration and jittery effects of not having slept. It takes effort to stay engaged and it is easy to zone out. Ahh sleep. Never knew I loved it so much until I didn’t get it. =)
The food battle continues. I find that the prednisone hunger hits you in three ways. Your mouth wants the taste of food much more than in the past, your stomach pumps out tons of acid which makes you feel like you need to put something in it and the mechanism that tell me that I am full doesn’t seem to work as well. Put all of that together and it makes it hard to not eat all the time. “Oh, yes another thick piece of chocolate cake with heavy thick frosting… uh… and with extra frosting!” =) Ha Ha.
What I have found to be helpful is to ask myself why I am eating every time I eat. Am I really hungry or should I take an antacid? Is it just my mouth, and if so should I just have some gum, etc. I find that if I am honest I am actually seldom truly hungry.
Well, next step is to get the two tests, and to hold the course. Both doctors agree that the prednisone is working and that the inflammation is going down, all be it slowly. This is progress and I just need to keep going in this direction.
Michael
