Pulmonology Update #2

I saw Dr. Ginns, the transplant specialist at Mass General, on November 23rd. I ended up having to go to the appointment by myself since I couldn't find someone willing to go with me. I didn't have any tests this time such as pulmonary function tests, so I was a little less worried that the appointment would influence my ability to drive. I ended up getting there very early and so had to wait to see the doctor. Even once I got into the exam room, I waited a good hour and half to see the fellow working with him. I find this to be one of the most frustrating aspects of working with doctors such as those at Mass General. It's as if your time is not valuable. They ask you to get there at a certain time and should you be late, you'd lose your appointment. They know that at least 90% of their patients are driving a considerable distance for the appointment, it would only seem considerate and respectful to be on time for the appointment. A half hour late is one thing, but close to two hours of waiting in an exam room alone, waiting for a doctor, is a bit absurd. He had no other patients before me, since I was his first patient of the afternoon. It is just frustrating.

The fellow asked a whole bunch of questions and of course we went over my medical history. I explained my history of breathing problems and how it started nearly at birth, and how my first severe asthma attack was at 6 months. I described how my first admission to the PICU for breathing problems was at 13 and that I was intubated for the first time at 15. Since then I have over 25 intubations. Honestly after 25, I stopped counting, as to continue to do so seemed pointless. In fact, I had just been discharged from the hospital 2 days before the appointment. During that hospitalization I had been intubated. I explained my CVID and my history with infections.

We then began to address my most frequent concerns - mainly the decrease in my lung function, increase in o2 demands, and decrease in quality of life. I voiced my concern that with a lung function of 20%, my lung function did not have far to fall. I did not mention transplant to the doctor, but rather stated that I was looking for options for the future. If my lung function continues to fall, I know that something will have to be done and I would prefer to begin to open conversation regarding this rather than get to the point that this is necessary and no discussion has been taken. For a transplant to be possible the patient must be sick enough to need a transplant, but not too sick. I don't want to pass into the "too sick" category. I told them how I was requiring more o2 than ever. That before the most I've ever been on is 2-3 L, and at this point I'm using 5+. The smallest of tasks such as walking to the bathroom leaves me short of breath. I am no longer able to do the things I used to. The most disappointing thing is that a year and a half ago, I was able to exercise. I was doing 2-3 jazzercise classes a day, at least 5 days a week. I cough up blood nearly routinely now. Some days only a little, others up to 2-4 oz. At night, I wake up gasping for breath. Whereas most people have dreams when they have to go to the bathroom that they have to go to the bathroom, then they wake up to find they really do; I have dreams that I can't breath and that I am being suffocated. When I wake up, I realize that indeed I truly am not able to breath.

When Dr. Ginns came in, the fellow reported everything we had talked about. He seemed to take everything in stride, which kind of disappointed me. I guess I expected more of a reaction. After all, I was telling him I was coughing up blood, woke up unable to breath most nights, and how limited I had become because of my declining lung function. Maybe it's just that he sees such severe cases everyday that he is slightly immune to it all. He did take me off the o2 to see "how low I could go." To which I was not a fan. I became so short of breath that I was unable to talk. I was having difficulty even with understanding what he was saying or asking me as my brain could not comprehend what he was saying. I do not know how low my sats eventually fell as I could not see the sat monitor, but finally he allowed me to put the o2 back on saying that he didn't want me "to be uncomfortable." Despite everything, I know he is a competent doctor. He put me on Bactrum as a prophylactic antibiotic. Though I am already on a prophylactic antibiotic, he said the Bactrum is better at preventing respiratory infections. He also ordered a Barium Swallow, to rule out gastric reflux as the cause of my lung problems and a chest CT. I will see him again on January 11th to do a 6-minute walk and more pfts.

I had the Barium swallow and CT scan on December 8th. Neither test was bad. I have obviously had a million ct scans, so no problem there. I had the ct scan in the morning, then the barium swallow. I had never had a barium swallow done before and everyone I talked to told me how disgusting it was to have to drink the contrast, but I did not find it bad at all. It is very similar to the contrast you drink for abdominal ct scans. The hardest part for me was drinking while laying down and having the xray machine so close to my face. I have a hard time laying completely flat anyway with my breathing and am definitely not comfortable drinking while doing so. I am afraid I will choke. When I was trying to drink laying down, they had the xray machine right up against my chest and nearly to my chin. This made me feel very claustrophobic. I was glad it did not last longer than a minute or two. The barium swallow was negative. They saw a small amount of evidence for gastric reflux, but only when I was drinking the water laying down. Since no one drinks laying down, or at least I don't, this doesn't really matter.