It’s now been almost 3 weeks since my feeding tube surgery and I’m almost used to it now. My pulled rib muscles have eased and the nerve pain is gone. Now it’s strictly the passage (stoma) itself that gets a little irritated with jostling or big coughing fits… yeah, stomach acid burns. I even made it to Boy’s baseball game on Saturday. Wore my backpack oxygen instead of dragging my tank on tiny wheels! We swung by Redbox on the way home and I got Dr. Strange for my first viewing of it and my wife went to a baby shower and hung out with her sister until late while Nana and Papa had the boys until half an hour after she got home. I watched the whole movie and all the extras and really recharged my geek batteries.
When clinic called
I was having a rough energy day on Monday that prompted me to step away from my desk before lunch and grab a few winks. Then I repeated around when school was letting out. Right before everyone came home from school, my phone rang. It was the clinic number. Of course, now this incites much involuntary excitement but I’m pretty sure it won’t be a clinic number calling – hospital prefix, maybe, but not clinic.
It was my new awesome pre-transplant coordinator saying that I cultured strep and they wanted to put me on a round of oral antibiotics. I hadn’t been feeling the best for the past 3-4 days but I’d attributed it to pushing it at my desk too hard. I guess we can see now how a raging lung infection affects me with 26% lung function. It doesn’t feel great, but they clearly caught it super early since I didn’t call them yet. This made me feel super safe with them going forward post-transplant.
Now I’ve had 4 doses and am feeling considerably better (which is odd to say since I’m still on O2) than I did on Saturday and Monday.
Making new friends
I’ve made quite a few new friends on Facebook since I re-joined to make our secret page for family and friends. I joined a global lung transplant group and one that’s just for my hospital. Having a lung transplant is starting to feel like an initiation into a super cool club. I guess the evaluation and waiting on the list is their idea of hazing. 😀
While I felt really grateful to everyone in the support group we visited recently (I forgot to mention that), they were all seniors and none of them had CF. Their knowledge and care is evident and I’ll be sure to tap it as long as I can and still live my life with our family, but there is something missing in camaraderie when there’s a 30-year age difference and they were faced with sudden transplants because they hadn’t lived with CF their whole life. Well, then I found one.
In support group they kept mentioning one young guy who came, got his new lungs, and stopped coming to go live his life and I found him when his mom answered a question for me. I read his whole story from listing to now, at my hospital, living life in the Tampa area. I can’t put my finger on why, but reading his story and seeing his photos at the actual hospital I’d be at and dealing with CF after transplant really put things at ease. He just celebrated his 1yr 2nd birthday, as we call transplant day, on March 31st.
Some interesting facts for the readers here:
- His lungs were put in from the back. It’s called “getting your wings” among lung transplantees.
- He gained 23 pounds in 2 months and was blowing a 94% lung function.
- 33lbs ater 5 months and 102% lung function.
- The docs discharged him after only 11 days after transplant!
- He felt so good, he went to a Lightning hockey game a couple of days after coming home, but that didn’t end well, so I’ll learn from his example.
You may notice that I put a ticker in the sidebar set to the exact time we got an email from the coordinator that I was live on the transplant list.
I found myself using meta data and searching the national organ list database. I’m the only person at my hospital listed in the last 30 days, so it was pretty easy. Yes, I’m that geeky.
I’ve created a new segment in my CF Fatboy MailChimp account so you can subscribe by email for updates to this site apart from Facebook. I don’t believe you can get multiple emails per day if I post more than once per day. I’m going to set them to go out at 11am every morning to hopefully ensure the doctors have done their rounds and I’ve done any morning stuff the nurses need me to do. The form is in the sidebar.
These posts will almost all be from me, but my good friend Ben in North Carolina may do daily updates here based on the Facebook statuses and keeping in contact with my wife. I don’t want her feeling like she has to post to too many places because I’m in infoholic. As soon as I’m able to post (and not use the force to close windows on my MacBook) I will be. No multi-day lapses here, folks! I’m ensuring full coverage, as it’s very important to me to document this for me and for anyone else coming along after me to know the whole deal.
I leave you with a video of me trying to use The Force while on muscle relaxants and pain killers after my feeding tube surgery.