Today was clinic day. It’s been about 6 weeks since I finished IVs. My lung function was 35%/.99L FEV1, which is basically the same as it was on my home spirometer last time I did them. All of that means that I am holding steady at 35% with no major decrease or increase in lung function. Everyone said I “looked great and healthy.” Sometimes I take that as “fat and tan,” haha. My weight is holding steady at XXX…yeah right I’m not telling you all that part because I’m not comfortable with my weight. Thanks to Trikafta I have gained at least 25-30 pounds, if that tells you anything, haha. I have been on Trikafta for about 18 months I think. I’ve lost count but I think December will be 2 years. I saw the nurse practitioner today. She said I did have a little wheeze and tightness in my bottom right lung. If it doesn’t go away with more airway clearance (the vest) then I will take prednisone. She said I’m sure you don’t want that right now with all you have going on. My response was “nope.” What she means by “all that I have going on” is that we are closing on our new house tomorrow so the moving and unpacking begins soon.
Everyone else (respiratory therapy, dietary, social worker and nurse) that I saw said I “looked great” as well. I’m telling you that having a tan helps trick them into thinking I am good to go. I really am feeling decent enough with all the packing and living amongst boxes going on. I am wheezy though which is annoying. It could partially be the weather since it has been humid since we have gotten some rain. I am scheduled for another check up in 3 months. Now hopefully I make it 3 months without having to call them for IVs.
Transplant talk: I am holding steady at 35% which means I am still too “healthy” for a lung transplant. I have to be under 30% FEV1 to start the testing again. With that said most CFers don’t get listed until they are around 25%. So it’s a good thing that I am holding steady but I’m kinda in limbo. I am in between being healthy and sick in a sense. Don’t get me wrong, I am not rushing my way to transplant because I want to get as much out of these lungs as I can. I know people that hung out in the 30%’s for awhile before declining to the listing percentage.
Now for a life update: We are moving to get closer to my husbands work. Right now his commute is about an hour each way, give or take. When we get moved he will be 15-20 min from work, give or take. Much better for him. The move doesn’t put me any further from my hospital/CF clinic. If the traffic is not bad it is actually about 5 minutes closer. On May 14th we had to put down one of our dogs, Squiggy (shih tzu/Lhasa apso mix). He was 13 years old. We rescued him 11 years ago. He wasn’t eating and not acting like himself so I took him to the vet. He was diagnosed with pancreatitis so he went to the vet everyday for a week for IV fluids and meds. He wasn’t getting any better so the doc took X-rays and did an ultrasound. The X-ray and ultrasound showed that he had a large pancreatic tumor pushing on everything, an enlarged liver, an enlarged heart with the sack around his heart having too much fluid. With his age and the size of the tumor and all the other things going on the best decision was to let him go. We didn’t want to put him through chemo at his age and keep him in pain. It was so hard losing our furbaby. He was our first furbaby. We still have Otis (shih tzu) who is 11 years old and has anemia (IMHA) and a slow progressing lymphoma, poor baby. We are hoping we have him for a long time to come. We aren’t treating the lymphoma since it is slow progressing and with his age plus he’s so small (11 pounds). We don’t want to put him through all that. So needless to say the 14th was a very hard day in this house. Otis is doing well now without his brother being around. It took him a few weeks. He was mopey but still eating, drinking and going for walks. Then about 2 weeks ago I lost my uncle who I was close to. It was a short battle with cancer, so it was rather quick. Cancer is stupid!!! I’m ready for good things to happen and no more death and hard stuff. Life sucks sometimes.
I think that brings you all up to date with me. I will update when there is something to update about.
Until next time…