Today is Day +70, the day I should have been going home. The day I dreamed about going home. It was an eventful day and I am gonna bore you with some of the details. But the big take home of this day is, I am stuck here for at least another 30 days, and I think how long I end up staying is by total whim of a very large Doctor. Dr. A, pretty much alone gets to decide if I am going to be released on time or have to stay cuz of the GvHD rash and the stupid fricking cough.
Day started out as they are apt to do on doctor visit days, blood draw. Yep, twice a week for now which seems like a year or more, I have been getting blood drawn downstairs here at the Gift of Life Transplant House. As a courtesy to patients here, Mayo sends a nurse and a lab tech every weekday morning to draw blood. Saves us at least 1 trip to the hospital. The only catch is they do it between 7 and 8am, so no sleeping in on blood draw days.
Sidebar: Everything they are testing for looks groovy (today at least). So nothing to complain about from today.
On days I haven’t posted… I am short of copper (so I am taking copper pills). I am short on Folic Acid (so I am taking a Folic Acid pill) and finally my Vitamin C was almost nonexistent (so I am chewing Vitamin C chewables every day for the foreseeable future. More pills.
A couple hours later, I went for a Pulmonary Fitness Test. Yes, I still have the cough. Yes, that made things awkward at times. But thanks to the nice nurse running the test and not high expectations I got thru it. I actually didn’t do nearly as bad as I expected to do (which I found out later). The stair step routine nearly killed me though, stairs and my cough do not get along.
A couple hours later I met Dr. Scott, the pulmonologist (actually he is a lung transplant guru, playing the role of pulmonologist). He, Teresa and I talked a long while about my asthma. Turns out that even though I am not asthmatic anymore, asthma still plays a big role in my sicknesses. Whenever I get sick it goes to my chest. So, anyhow, he gave me a steroid inhaler (Advair) which should, eventually, help my cough. He did however also say that it might take 2 months for the cough to go away (ugh). He was the one who informed me that I did fairly well on the Pulmonary Test, setting a pretty high bar for any future tests, which he suggested we do monthly for the next 12 to 18 months (ugh). But he did it was such niceness and his cool accent, it didn’t sound bad when he said it.
An hour later, we met with Callena the nurse. Since everything was going ok today blood wise, and I felt pretty good, her visit just gets a blurb on my blog.
Then we met with Dr. Alkhateeb. I had been really pissed at him, almost to the point of asking for a new doctor mad. I really didn’t want to do the Pulmonary Test, but Dr. Scott calmed me down so by the time we met with Dr A, I was mellow and happy. Dr gave me an ultimatum though, I have to learn the name and what the medicine does for every medicine I am on. That’s a lot of meds. He said he won’t release me (even at 100 days) if I don’t know them. Since, I have been relying on Teresa’s phone app and Teresa doling out my pills, I haven’t bothered. I know the names of my new pills, I just don’t know which is which. Should be no problem. Also today, he moved me down to one visit a week if Teresa and I don’t think I need to see him more often. WOOT. I hope he chooses Thursday. But right now, the app is blank for when I see him next. But they screwed up my blood test location again, so I have to call them tomorrow and move it to the Gift of Life House. Blood Test on Monday, Blood Test and see him on Thursday, works well for me.
Between all this, we discovered that room 50 sprung a leak. A pretty bad leak at that. That prompted the Gift of Life people to move us to room 64. Which is a serious room downgrade, just saying. So, I moved a few items, and Teresa has done all the brute labor moving. She would not let me do much more that I did, which I am ok with as I have little to no energy after my eventful day.
Tomorrow I go stick my head into a box and breathe anti-pneumonia goodness. I did it about a month ago (hey, I got sick about a month ago, coincidence? probably) and they want me to do it again. That’s fine, 10 minutes or so in the box and its all done. And I shouldn’t get a certain type of pneumonia. My one partial immunity at this stage of my life.
So, day +70 came and is going to went, and all I can say is it was quite a day. And I am glad it’s over. Now I got 30 days, August 26, then I should be out of here. Well, actually the 26th falls on a weekend, so it’ll be either a day or two before 100 or a day or two after 100. So falls the days doctor’s work. It’s all good, I will not go crazy here. I have gone this far, what is one more month?
Here’s WatchMojo’s list of the greatest rock bands of all time. Agree or not. I just wanted to end on something musical.