So. The followup in regards to my appointment that I had this afternoon with Rheumy & Dr.F — who is now going to be nicknamed Dr.Cute, cuz she is rather sweet & cute looking, has resulted in no cellcept.

I am actually really, really, really thrilled by this news.

Back when we were discussing the possibility of the Cellcept during the fall(?) of last year, I was wanting to get on with it as soon as possible so as to get on with moving forward. But as time ticked on by and it took forever for things to be approved, I actually sat down and thought long & hard about the side effects of the Cellcept and started feeling less and less enthusiastic about taking it.

Now that I’ve had my appointment today, I am feeling immensely relieved and rather ecstatic. Dr.Cute wanted to get up to speed with the abridged version of SALLY and after talking to her about what’s going on, how I’m feeling, doing multiple tests this afternoon at her request, it would appear that we still can’t figure out what’s going on, as usual. At least from her pespective it’s definitely not the interstitial lung disease or an increase of scarring that’s causing me all the tiredness and shortness of breath. With those particular thoughts in mind, she doesn’t think that we should put me onto the Cellcept when it’s not going to be of any benefit to me and the side effects will just make me miserable.

With all that out of the way, she wants to know for sure what’s causing my exhaustion and shortness of breath. She definitely wants to do more testing: I have an Echo booked in 2 weeks time. Depending on the Echo results and how Dr.Cute feels about it, she may or may not pass me back to Hawt Doc’s Pulmonary Hypertension cohorts, which is his specialty. Depending on the PH team’s decision, they may opt to do another Right Heart Catheterization to see if the PH is worsening and that may be the answer to my problems.

On the other hand, there is also another possibility: she doesn’t think I am using my oxygen enough. What? Really?? Ya. Rly. I generally use my oxygen only when I’m out and about. I rarely use it at home except for at night, but after walking around the clinic this afternoon with an O2 sat monitor taped to my forehead, we’ve discovered that my levels dip down to 82% without wearing my oxygen. With that discovery in hand, Dr.Cute wants me to change the way in which I use the oxygen: She wants me to wear it 24 hours a day. Obviously if I’m just hanging out sitting in front of Ponyo, I don’t need to wear it. But if I get up to pee, or grab a drink from the fridge, or make myself a snack, or feed the cats, she wants me to wear it. It doesn’t matter that it’s only two steps away from where I am sitting, my oxygen levels drop considerably with those small bursts of activity and that little bit can contribute to my tiredness and exhaustion.

Seeing as I’ve gained about 20lbs since starting the Imuran, there’s a possibility that I’ve developed sleep apnea. Since I am wearing my oxygen primarily at night, and I usually feel better with it on after I get up to go to the bathroom all the time, that is easily remedied and drug-free. The only thing we’d have to do, is yes, more testing — basically another sleep study.

Since Mom & Dad were with me this afternoon, Dad asked if there was any chance that with the new test results, if the government might now cover my oxygen. Dr.Cute was surprised that no one had considered booking me in for the testing that would be required to determine my eligeabilty for government-paid oxygen. I’ve said this time and again, unfortunately I’m not suffocating enough to covered and she said that as of this past week, the government body that oversees the oxygen thing finally announced changes which would make getting oxygen easier for patients that need it. SO, that means that I might finally be getting my oxygen covered! Hurray!

So that’s what’s going on… no cellcept, lots of oxygen, even more testing and maybe get to have my oxygen more affordably ^_^


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