I had a productive check-up yesterday.
Later in the month I’ll explain why my appointment was so long.
But so much good came out of it, I’m feeling so much better about things.
I was able to get my transplant doctor up to speed on what’s been transpiring the past few weeks, especially what happened while he was on vacation. We also sorted out some of the testing & scheduling snafu’s too.
I’m in a weird position.
My overall Lung Allocation Score (LAS) which moves me up on the list is moving some, but not as much as they hoped. Even though I’m feeling worse, yet there’s reasons for this.
One of them is even though overall my lung function is declining, it’s not in proportion to the score. I’m under 20 percent now with my FEV which measures my overall function, but the number used in the LAS is not that number. The number that’s used (the FVC) is not dropping at the same rate as my FEV. It’s a more subtle drop so I am moving up the list but in less points than what I’m losing in function.
This is both good & bad because I feel worse, but in comparison to other candidates, I’m still healthier.
However, I’m still in transplantable range & they are still holding fast to that 6 month mark, though it might take slightly longer.
The good news, is that while Rapamune is still black boxed in lung transplant, more data is pouring in worldwide that it might not be that detrimental & in serious cases might even be useful. So they are putting me back on at a 1 mg dose. Which was half the dose I was on originally. The drug would clear out of my system in a few days at this level. I would just have to immediately stop it if & when I got a call.
This is risky, but one I feel comfortable with given what’s happening with my overall function. Both my doc & I are on the same page with it. I am especially relieved because then I know my kidney problems (from the TSC) won’t progress as fast as if I was still completely off the drug which has been a concern to me since February when they had pulled me off.
Secondly, the steroid tapers they’ve had me on the past few weeks seem to make my symptoms more manageable. So after I finish another burst, I’m going to be on a small daily dose to avoid my lungs locking up.
To manage my underlying asthma a bit better they want me to move back to nebulizer treatments for rescue medication versus using an inhaler. Because of my reduced function my team worries that the inhaler isn’t getting deep enough & that could also be posing some issues or making an impact to some of this, even if it’s more subtle (best just to eliminate that possibility, period).
Next week, I’ll have a plan from the outpatient rehab department there I can take the to the pulmonary rehab team near my local lung doctor’s office to resume some exercise safely.
I’ll have to pay out of pocket for my rehab but it will be worth it because I’ll have supervision along with exercise, which is something I need right now with my liter flows & problems I’ve been having. I’ll also have easy access to whatever amount of oxygen I require for exercise (which also eases my mind).
This will also make it easier for me in tank math since I won’t be using my personal supply to exercise with like I had been doing.
I have a plan I feel comfortable with now. I feel so much more at ease. Perhaps these blips I’m having will calm down finally.
I’m glad they have also agreed to see me on a monthly basis versus every two months or even just at 5-6 week intervals (for disruptions like the National Convention). This way I’m still in front of them & they can actively push & see changes a lot more clearly.
I am really fortunate I have such a smart transplant doc who really has the right amount of care & compassion. That’s part of the reason I chose this program over others & I haven’t regretted it even with a few wrinkles here & there.