We had a clinic visit on Monday and a lot happened. First, we brought our friend Ta with us. That was a huge step. Gess is always very protective of his health. Since we have been married (10 years), I can count the number of times on one hand that someone besides me has visited Gess in the hospital. In fact, neither his mother or only sister have been there in that entire time. We have never had friends involved. So, the fact that he is letting friends in is huge. A couple of months ago, R--who is Ta's husband--took Gess to the ER for me.
We asked Ta to come to clinic so that she could see the process, meet the docs, and just feel more comfortable with the situation so that I have "back-up" if necessary.
We, of course, went in with a huge list of things to talk about. Gess had started coughing up blood the weekend before so no PFTs for him. We did meet with the social worker and talk about some of the continuing issues we have had with the clinic. The scary thing is that she confirms everything that we are experiencing and says that she has heard it from patients before. The question to me is why then is nothing being done? I can't believe the issues at this clinic! Anyway...
We insisted that we see a different doctor and that has been a good move. He seems to be very knowledgeable and on top of his game, which we appreciate. I also see that there is still a level of trust there--I can tell in how Gess responds.
Because of the bleeding and Gess generally feeling crappy, he started back on IV antibiotics. He is doing tobra and ceftaz. Tobra is hard because it makes him feel crappy and we have had problems with his kidneys. At the same time, it is usually good at knocking out infection. So, I am keeping my fingers crossed.
I also asked the doctor if there was anything that we can do to help reduce the number of infections and cycles of IVs. I think that last year he was on IVs as much as he was off. The doctor said that exercise is key (which I have told Gess a million times). I really don't think that Gess "gets" how important exercise is and what the doctors even mean by exercise. So I asked the doctor to define "exercise" for Gess. And from that discussion came the suggestion for pulmonary rehab. I am all for this and in fact brought it up several times. Gess agreed to do it, but I am afraid that he will back out when he finds out the time commitment, but I am hoping that he will. I really think that he needs it.
The other thing that we talked about was his sleep. His sleep is so erratic and he makes funky noises and moves and wakes up, etc. I can't believe that he is getting good sleep in that. So, he did wear a pulseox meter for one night and based on that the doctor suggested that he do a sleep study. I, again, have been telling him to do that for a long time, so I am happy that he agreed.
He also has been vomiting a lot, so I brought up the possibility of doing a gastric emptying study--which he agreed to do as well!
So...hopefully these things will help and we will be on our way to a better year. Gess sees the pain specialist and also has some liver appointments scheduled. It is exhausting just thinking about it! Oh...and he decided to see a naturopathic doctor. I am excited about that too :)