Today was an infuriating appointment with my doctors. Because of the lung/ heart concerns I have been booking appointments with both doctors on the same day. It saves me on parking, time etc. Unfortunately, the cardiologist appointment was after the pulmonologist. I wish it were the other way around.
Let me first explain about the cardiologist. They have said for weeks they thought I had a hole in my heart. I actually became excited when I thought that maybe if it were my heart, and there was a simple procedure that could be done, that I would feel better, less winded etc. How much of what I feel is heart and how much is lungs? Well after several tests that said I did have a hole in my heart my MRI said no hole, which confused me and for which I set up this appointment for the doctor to explain. Instead he said that the valve was not closing properly and that was nothing to be concerned about, he dismissed me and said everything was lungs.
I’m sure you can see now why I wish he would have been first.
I had been through so much testing and so much money, even with deductibles, this year that I just wanted to stop and act normal for a while. So when I went into the pulmonologist I said, “I just can’t keep doing this with all the visits.” So, I guess in light of that he kind of dismissed me. He did say however that he would not renew my prescription for oxygen because of the last 6-minute walk test. This test was flawed, I’m convinced because the probe kept falling off my head, and frankly at the end my heart was beating so hard I had to sit down. In all honesty when I do the 6-minute walk tests I don’t walk at a slow pace. I mean who does that in real life? I was booking it. The heart thing in that walk test had me freaked, and it was what started the whirlwind of other tests. I reported this flawed test to the hospital that did the test and they said they would redo it, but at the time I was so busy with all of the other tests and visits that they were sending me on that I just could not do it.
My pulmonologist then said he would see me in 6 months unless I needed him before that. He said I could call or come in. He also said he would like to do a lung biopsy in 6 months. Seeing him if I need him is hard at best. He is not there all the time, so I often end up back at my GP. I suppose I should keep a list of these GP visits so that I can report it to him next time. MENTAL NOTE
I started to cry when he told me he was not going to renew my prescription for oxygen. I told him how will I work? what I should have said was how do I continue to exercise the way that I have been so that I can stay healthy? He ordered pulmonary rehab, twice a week for 7 visits. With my deductible, I figure that is $75. a visit. I just can’t afford that. I also wonder how much of pulmonary rehab is about getting people to exercise when I’m doing that already. I asked if I went to pulmonary rehab for a couple of times and showed them what I did if they could then just suggest things. Then I wondered if they could detect that I need the oxygen during therapy then maybe they can get him to write the prescription.
I think a lot about this oxygen thing. I mean it is not heroin. What is the deal? If it will save my organs, and give me some comfort then what is the deal? Will I be forced to find oxygen on the black market? I hope the oxygen supply that comes to my house does not ask for another prescription. I will, however, need a prescription if I try to buy my own portable oxygen concentrator which I would like more than anything. I feel it will give me more freedom. I can camp, while I still feel I can camp, and I could travel, while I still have the energy to travel.
The other thing that he did was he said that idiopathic was not off the table. This pissed me off. Why? Why say that? Why put that in my head until I come back. The previous visit with one of his fellows said it did not present itself like idiopathic in the CT scans. What a relief that was. Now, that negative seed has been planted again.
In hindsight, I wish I would have said more. I wish I would have taken time to take these two visits in and then call and explain my concerns and fretting. Instead, I’m trying to work through it alone.
—-
Breathing in forgiveness. They are just doctors. Breathing in that what I need to know I will find and will come to me.
Pusche