Had my transplant check-up at Duke today. Still holding steady at 19% lung function, which is good news. I’ve had a cough that’s been tough to manage, so they’re adding some nebulizer treatments soon. Still waiting to hear if I’ll be listed for transplant — they’ll discuss it at their next team meeting. Nausea and coughing have been rough, but I’m hanging in there.
Grateful to have one of my best friends visiting and supporting me through it all.
oday I had transplant appointments at Duke, which included the typical labs, xray and pfts(pulmonary function test) and then met with one of the pulmonologists. Today was primarily to see where I’m at bc I developed a cough a few weeks ago and it’s been hard to cough anything out and so I was worried it would cause problems. They did start me on an antibiotic 10 days ago but will also start some albuterol and hypertonic saline nebs but just waiting for my nebulizer to arrive from Amazon. (I don’t have my old one anymore).
Thankfully my pfts have not dropped since the first week of December, so that was positive. I’m still at 19% lung function!
We were also hoping to find out about when they’re going to list me. He said my weight is still an issue but they all meet Tuesdays to discuss cases so they’ll see how they all feel at this point bc I’m staying within a range of weight and go up and down but never surpass a certain weight 🥲
The nausea/ queasiness every single day is very frustrating and bothersome. It’s not all day but a good part of the day intermittently. So that’s been lovely! I do have the dissolvable zofran but it doesn’t always help or how I’m feeling is beyond help. Sometimes just with how hard I cough, it makes me gaggy and want to throw up!.
It’s been lots of fun having one of my best friends from college come visit and stay with us!! she’s been beyond helpful in every way.
She wanted to come watch me at pulmonary rehab and would cheer me on everytime I would do a lap! Lucky to have her!