Tuesday, 8 October 2013

I am officially on the lung transplant list.

I have the Internet again (It is sad how I went through minor withdrawal the past week and half)! On the same day of my appointments! It's been a big day.

Today I met with the finance person, the transplant coordinator, and the surgeon.

The finance person basically reviewed the fact that I will have to pay for some of my meds upfront post-transplant but that through the NS family plan, I will be able to get most of it back (minus a premium of course). She didn't even want my credit card information which was excellent. She said the pharmacy will deal with all of that when I am discharged post-transplant. It was all information I already knew.

The transplant coordinator meeting was a bit longer as she reviewed everything I had already read in the transplant manual they had given me in June. She went over the 'what happens when you get a call' (DON'T PANIC but get to the hospital ASAP!!) process and 'how to stay healthy while waiting for a call' (don't touch anything or socialize with anyone!) .

I need to fill out another power of attorney form (this time with witnesses) for her. She had an official booklet and everything that is much better than the word doc that I had created when I made my other one.  She didn't push the support group on Isaiah as much as I thought she would but did mentioned that it can be super helpful for some people (I, of course, am not allowed to go). She also gave me a pamphlet about the cautions of using social media during the transplant process and to be careful about the media getting ahold of the story (Obviously I am ignoring all of that as I continue to blog details of my life).  She said in the past, families of the donor have shown up to the hospital as they found out through the media or Facebook who the donie (donee? doney?...person who gets the organ...) was and were not happy. That seems absolutely ridiculous to me. Who wouldn't want me to have the lungs of their deceased family member?
I'm awesome.

The surgeon meeting basically involved Isaiah and I signing a bunch of papers saying that I understand the risks of the operation. He listed all the possible complications: infection, cardiac arrest, stroke, pneumonia, death, etc... He said that for people with CF, the rate of death for the surgery is 2-3/100 patients but he would put my odds at less than 1% if the surgery happened right now as I am young and relatively healthy ('healthy' is such an subjective word).  So that's not bad. I mean it is never as good as one would hope but it is not horrible. He didn't go into details of the actual surgery (like where he will cut me open and all the crazy machines I will be connected too) which was a bit surprising but I have already read all about it so I really didn't need to hear it all again.

The tragic part of the day was when the surgeon told me that I can't have a boob job post-surgery. My dreams are ruined! Apparently if I had had one beforehand, they would have to remove it during the operation and they wouldn't put them back in. They also won't do any cosmetic adaptations during the surgery. I guess they have better things to do than worry about implants or tummy tucks. Silly surgeons focusing on things like 'transplanting the actual organ' and 'making sure your heart is still pumping'.

After signing the paperwork, I met with the physiotherapy team and I start regular physiotherapy on Thursday. It is 3x/week and it is essentially a bit of cardio, weights, and stretches for an hour and half. It looked pretty non-intense but I'm sure they will make me walk faster than the 70-something woman who was there when I went in (they don't appear to follow exercise crazes so I will unfortunately not be throwing tractor tires around the room). That will be the only time when I will meet other people who are also on the transplant list. Of course, if the scheduling is right, none of them will have CF as they don't want us in the same room together (infection control people are crazy!) but at least I'll meet somebody. I suspect most of them will be older than me.

So, by the end of today, I am officially on the lung transplant list and am essentially waiting for someone my size and blood type to die (it sounds horrible but that is essentially what I am doing). I can never let my cell phone leave my side (or my pager once that arrives) or leave the area. I am less anxious about the entire thing at this point than I thought I would be (at this precise second, that may change in an hour).  However, if I get the call tonight I will definitely panic as I don't have any of the 'what to do when you get the call' stuff ready. I am too busy updating my podcasts and catching up on buzzfeed. You know, important stuff.


Susan Pitman said...

yeah! you made the list! and your right...boobs are sooo much more important and who wouldn't want you as a receiver of a dear ones lungs? You are just so so so awesome!!all the best and am sending love and hugs
your way

Jason said...

Congrats on making the list. I am happy and excited for you. I`m on pins and needles over here waiting.

However, I want to offer you my condolences on the boob job. I know you had your heart set. Very sorry for you, but we can`t all have everything we want.

Sara G said...

I was just introduced to your blog from Palak! You are a fantastic writer, and I am looking forward to continuing to follow your journey.