Tuesday, 24 February 2015


I thought I would mention a bit about all my new medication and morning routine now that I am out of the hospital. Pre-transplant, I would hear people in physio complain about the amount of medication and I would think, "I'm already on a ton of pills due to CF, what are a few more anti-rejection meds, I'll be fine." Well pre-transplant self, maybe you shouldn't have been so cocky as it really is a lot of new medication. I can see how anyone not use to taking pills every meal would be completely overwhelmed. I did have a lot of pills pre-transplant but I'd been on them for so long that it was basically routine.

Currently, I start the day with a puffer and one aerosol mask. Most people with CF no longer require a mask post-transplant but my donor lungs were infected with a bacteria that the doctors (and I) would like destroyed so I am on an inhaled antibiotic for (hopefully) only the first three months post-transplant. And that date is coming up soon!

I need to meet with the infectious control doctors before anyone will recommend stopping it but that means in two weeks or so, I might be able to wake up and not have to do an aerosol mask immediately for the first time in my life! I can't imagine how good it will feel to be able wake up and just roll out of bed, I will be so confused for the first few weeks. It already feels like I'm forgetting something when I don't do a second mask or my chest physio in the morning.

After my aerosol mask, I have to take my blood pressure (the apartment is filling up with medical supplies), temperature, and blood sugar levels. I also check my weight and Fev1 with the spirometer. All those numbers are recorded in a little book the hospital provided that I am suppose to take to every clinic appointment so the doctor can look for any upward or downward trends. Obviously, if I notice any myself, I'm suppose to contact my coordinator immediately. Seeing as all the numbers are all over the place, I'm waiting until they stabilize a bit instead of frantically calling every morning.

No need to use the machines at the drug store!
Isaiah then stabs me with the insulin and blood thinner needles before I can have breakfast and take my other medications. I am still a giant wimp about stabbing myself. The insulin needle is pretty much as small as the one used to to draw blood to check my sugar levels but since it's exposed, I have a mental block about putting it in my body. The other one is about triple in size so it actually is kind of scary.

Stupid needles.
For the actual medication, we thought it was best to buy a weekly medication sorter so I don't have to spent 20 minutes every day looking for and opening up all the pills bottles. It's amazingly useful considering I have a few pills that are only taken on certain days. The best part is that the day bits pop out which is useful on blood work days as I can't taken the medication until after the blood is drawn and have to take all the medication to the hospital with me.
So organized!
As with the aerosol mask, a few of the medications are only required for about the first three months as those months are considered the most dangerous time for infection or rejection. The anti-rejection levels are at the highest plus the body is sill trying to recover from having its lungs ripped out. The manual recommends living in a bubble for the first three months after transplant, except for all the times you have to visit the germ-y hospital...which is about every day. Every time I ask the doctors if some meds can be reduced, I've received a resounding "bahahaha....no". I may have to wait for awhile for that to happen seeing as my new anti-rejection medication is still slowly being increased.
Sunday morning's medication. Yes, I have to take them after I eat otherwise I'll fill up on juice.
The side-effects from the medication are definitely the worst. I'm starting that horrible loop the anti-big-pharma people always preach about where I'm taking medication to combat the effects of the first medication which then creates more problems and so on. The steroids have put my blood sugars out of whack, hence the insulin which can cause weight gain so that may actually be a positive for me.

My new anti-rejection pill (the one that replaced the seizure-inducing one), is giving me a permanent case of the shakes and is also starting to cause my hair to thin, either that or my bathroom is being taken over by stray hairs looking for a home. At the same time, another one is causing hair to start growing in random places. Hairy knuckles are now a thing, right?

I can't exactly break any of these medication cycles as I'll need all the anti-rejection medication for the rest of my life but hopefully the side-effects will diminish once the dosages are able to be reduced a bit.


LittleM said...

lol i think the side effects diminish. Way back in 2008 when i met my first and only intimately close (rule-breaking-hospital-room-invading) CF friends.. this one girl was waiting for lungs doing standup about how shes heard that she'll have to get a job just to support her Nair habit after transplant. She's now proudly 7 years post transplant as of April, and relatively knuckle-hair free.

Alley said...

Haha I'm also starting to feel like I'm going to need something to support my Nair needs. 7 years is amazing!

Judy saunders said...

You are definitely n my top 5 hero list. Wat to go. What a wonderful brother you have. Marlene's friend Judy.