Wednesday, 18 February 2015

1st Post-Transplant Clinic

Whew, what a day. It wasn't even necessarily super long, it was just information overload and a lot of standing in lines which is both good/exhausting for my legs.

I'll review my day (kind of) in the order that everything happened:

-Xray: My xray looked great. Yay for non-scarred lungs! The nurse practitioner said they looked "amazing" which was good to hear as I've had a bit of a dry cough the last few days but everything was clear on the x-ray. While I was waiting for the x-ray, I caught up with another post-transplant person who was on the 7th floor the same time as me. We shared horror stories and complaints. It was nice to bitch to someone who knew 100% how I was feeling. Not that other people aren't sympathetic but it's not the same as comparing medication side effects or incision nerve damage and numbness.

- Pfts: Oh how I hate their pfts. I'm fine with the regular ones where I inhale and exhale as quickly as possibly and then I'm done. Apparently for 'clinic days at TGH', I also have the pleasure of doing the ones in the plastic box. It's a clear plastic box that I'm closed into and required to pant "controlled and easily" while the respirologist turns the airflow on and off. I always feels as though I'm going to pass out during the panting without oxygen part and I start panicking a little. Rationally, of course I could get air if I just pulled away from the machine but I know if I do that then I'll have to start the entire process over. It's better just to panic internally and afterward. For some reason I thought it might be easier with better lungs, nope.

Also, my fev1s are officially crap. It's not my little machines fault at all. They were .87 which is about 28%. I would have been excited about that pre-transplant but I was hoping for way higher with the better lungs. Everyone in clinic who I freaked out to about the low numbers told me it's okay as they should slowly improve as my strength returns. They didn't seem concerned so I guess I shouldn't be either. The positive part is that my oxygen saturation levels are excellent, my heart rate is fine, and I don't feel short of breath so clearly something is working.

- Clinic: There was a ton of information thrown at me in clinic between my coordinator (who is honestly way better than my pre-transplant one) and the nurse practitioner (I didn't actually see a doctor).
1) I am scheduled for a broncoscopy tomorrow. This was new terrifying information. They just fit me in this morning so it's not as though someone forgot to tell me. I guess the last minute planning doesn't give me much time to start getting concerned about it. They'll wash down my lungs and take samples of everything. It's the best way to know if there is any rejection or new infections.
2) They (thankfully) decreased my blood lab requirements so I only now have to get poked for blood samples twice a week. My veins are happy about this news.
3) I should expect to stay in Toronto until at least the end of April if not May. My coordinator guessed that they'll want me here until my 6 month check-up seeing as they'll want my wound to heal and my medication to be stable before I go anywhere. But that may change after my bronc and all my 3-month post-appointments.
4) I'm being referred to the infection control doctors, the blood clot doctors (thrombosis), and neurology. Basically to get their individual opinions on the drugs I'm taking in their specialty to see if any dosages can be decreased or stopped. I would especially like to stop the daily blood thinner needles as I'm a total wimp about them and Isaiah is already tired of stabbing me.
5) Two of my anti-rejection medications were increased again. So many pills. Sigh. Honestly, I thought I took a lot of pills before, I now have to take them after breakfast otherwise I fill up on water. The new one gives me the shakes which I complained about and was told it was normal with the medication and that I basically just had to live with it. Awesome.

- Day outpatient unit: I had my wound dressing changed at the outpatient unit. I'm now going to have it changed there weekly, hopefully on clinic days, as those days are hard to schedule in the homecare nurse. I'll still have homecare the other two times a week. The nurse stocked me up on supplies which was super helpful as the homecare people don't provide any (it makes no sense, I know....). She also removed the last of my sutures from my surgery in Dec. The area that they re-cut has once again healed up nicely so it was time for them to come out before skin grew over them.

After the day unit, we picked up a medication refill, changed around some physio times due to the unexpected bronc tomorrow, and fled as quickly as possible. My plan of 'I'll tidy up the apartment after clinic' quickly became 'I'm going to lay in the bed silently for the next hour' as soon as we arrived home.

Now I have to eat as much as possible before I have to start fasting for tomorrow.


LittleM said...

cool story! hope you found something worth eating!

Heather McGrath said...

Yay! Things are finally progressing positively! 😄

Sue said...

you just exhausted me! :-) but so glad to hear that things are looking up and that sponge thingy is out of your body! You know what I and hugs...