CF Happens

(This may be information overload but I always try to explain things so they are easier to understand so bear with me)

I had a Telehealth follow up with my CF nurse practitioner last Thursday. We decided that I was good to be done with IVs and to finish the prednisone taper. I did my lung function on my home spirometer Wednesday night in preparation for the appointment, unfortunately they were 27%/.75L. No improvement and a little loss. The nurse practitioner suggested I get seen by my transplant center considering my lung function is hanging out at 27% with no improvement. My CF nurse called me on Monday to let me know that they talked about me at the provider meeting in regards to the nurse practitioner suggesting that I see my transplant center. My CF doctor agreed with the nurse practitioner. I sent an email to my transplant coordinator with an update about this last admission and that my CF doctor wanted me to get seen.

I sent the email later that day. My coordinator emailed me back the next day and said that she would call me today to get the details of getting me scheduled all situated. She spoke to the transplant doctor about my email and that I was wanting to seen. He wants me to do all the evaluation testing again since I did it last in 2016 and I haven’t been back to see them since 2019 because of the pandemic. So that means it’s 2-3 days (Monday through Wednesday) of testing and then meeting with dietary, social work for insurance things and financial talks on Thursday. I will be going for evaluation the week of August 20th.

Evaluation testing consists of a bunch of lab work, 6 minute walk where they are monitoring my oxygen level the whole time to see if my sats drop below 90% at all which would indicate a need for supplemental oxygen, chest x-ray, chest CT, full PFTs (what I like to call the “gas chamber”), ABG (arterial blood gas aka needle stick in your wrist), VQ scan which will check to see which lung is oxygenating better and has better blood flow. The VQ scan helps in deciding which lung would be transplanted first during surgery. The lung with the poorest function is removed first then the new lung is all hooked up and gets working, then the next lung. The next test is a RVG nuclear scan which is to see how well the heart is pumping. I will then see the transplant doctor on Tuesday afternoon after all those test are completed to discuss all of those tests. If they want more testing now is the time that they will order those. A heart cath (both sides of the heart) will be scheduled for Wednesday as if they will want to proceed with testing. It can be canceled if they don’t want anymore testing at that time. I will also meet with dietary to address any dietary needs I may have and social work to talk about insurance and financial planning. If they don’t want anymore testing after I meet with the doctor on Tuesday I will be able to head home the next day (it’s a 7.5 hour drive for me). If they want to do more testing, to include the heart cath, I will be able to head home Friday. They will call me to fill me in on things after the whole team discusses my case.

With all that said (I know it’s Information overload) I’ll try to answer some of the common questions I’ve gotten about this whole transplant evaluation/transplant process. Most common question is how I am feeling about it all. I am actually really good mentally with it all. I’m not freaked out or thinking the worst. Doing the testing/evaluation is a necessary evil in the process. It’s better for me to get all my testing up to date in the event that I have a random rapid decline and need to get listed quickly. You always want to be ahead of the game so you aren’t backpedaling trying to get all the required testing done yesterday. I always try to look at the positive side of things and not dwell on the negative side. Yes, it a scary process more so because I don’t know what to expect because I’ve not had a transplant before. No matter the number of friends I’ve been with on this transplant journey, it’s a whole different story when it’s me actually going through it all.

Next common question, what is the magic number (lung function) that will get you listed? There isn’t a magic number. There are other factors that come in play like quality of life, running out of antibiotic options, not responding to treatment anymore, oxygen needs, not bouncing back after an exacerbation, needing IV antibiotics more frequently and needing to be inpatient more often for treatment to name a few. The goal has always been get everything I can out of these crappy lungs before getting a new set. Yes, it seems like just getting new lungs now would be easier because I’m more “healthy” so to speak but there’s a process for a reason. The lung transplant doctors are the experts on this so I will listen to them as far as how this all goes. This isn’t their first rodeo.

I think that covers pretty much all of it. Feel free to comment or email me with any, and all, questions you may have. My passion has always been to help educate about CF and lung transplant. The more knowledge you have the better.

Until next time…