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…
May is Cystic Fibrosis Awareness Month. If you are friends with me on Facebook or Instagram you will be seeing a lot of CF awareness posts this month. I won’t flood my blog with them. Haha.
I’m aware of CF everyday, there’s no getting around it. I’m currently on IVs and prednisone for an exacerbation which means a CF infection. My lung pain that I was having is mostly gone thankfully. I will do lung functions on my home spirometer tomorrow and send them into my doctor. Hoping they are up some without the pain. Tomorrow night will be one week of IVs. I have one more week to go for a 14 day total round. I will be done with the prednisone tomorrow, I believe. Can’t remember, I take so many pills they all blend together. Haha.
If you have any questions about CF feel free to comment or email me at firstname.lastname@example.org.
Until next time…
I have been having back lung pain for 2 weeks so I called for a chest X-ray yesterday. I had a Telehealth with my CF doctor this afternoon. My X-ray was actually decent. With the pain, increased cough and more shortness of breath we decided that I will do IVs and a burst of Prednisone. I will be doing IV Cefapime every 8 hours. It is an IV push which takes 20 minutes which is nice. I will get started on them tomorrow at some point. I will go to the hospital to get my port accessed and labs drawn before I start so we have baseline levels tomorrow. The Prednisone is 60mg the first day and then 20mg everyday for a week. I’m just ready for the pain to be gone so hopefully this does the trick. Well of course to feel better is always the goal. I will do IVs for 2 weeks and we will reevaluate then to see if I need a third week or not. I will have a clinic appointment in about 6 weeks for a check up. Oh yeah, I did my home spirometer Sunday night and it showed that my FEV1 was 32% (lung function) which is down from when I was last seen in clinic which was 36%. I will send them another set of lung functions mid week to see how I’m doing after a week of IVs. I’ll keep you all updated when there is something to update about….haha.
Until next time…
Hey all! Life has been good for the most part. Haha. I have received both of my Covid vaccines. I had a routine colonoscopy last Friday. Everything was fine, no cancer or polyps. I don’t have to be seen for 5 years. Colonoscopies are a routine screening tool for CFers due to our messed up digestive systems. CFers have to have them sooner than healthy people. I had my bone density scan (dexa) today which I get them every 2 years. I won’t know the results for 3 days when they are sent to my doctor. Last time I was diagnosed with osteoporosis. I take Fosamax for it which is once a week. Hoping I had some improvement since the last one.
I have been having some back lung pain for about a week and a half. I will keep an eye on it. I have been taking ibuprofen for the pain. It’s been helping for the most part. At least taking the edge off.
I have a clinic appointment in May. I will update after my appointment.
Until next time…
Today I had a follow up appointment from being on IVs. First up was vitals, all good some too good (weight….). Next up was lung functions. I’m holding steady for a year now. Of course there has been some ups and a lot of downs but I’ve managed to hold steady. My FEV1 was 36% / 1.00L. My sputum that I brought into clinic was a little pinkish from blood and is something to keep an eye on. If I have real blood then it would mean an admission to figure things out with more testing and to do IV antibiotics of course. Next up was pharmacy techs to go over my meds. I had stopped the azithromycin (Monday, Wednesday, Friday) because I didn’t see the point of it and wasn’t seeing any affects of it. I was then schooled in azithromycin 101 (because I was honest and told the truth that I had stopped it…haha) and told that it is not only for anti-inflammatory properties but it lessens CF exacerbations as well in studies. I will be restarting that one. I also questioned the singular (for allergies and asthma) because I once again wasn’t noticing any difference. I was told I could stop that one and see how I do off of it because it can have some psych side effects and we all know that I already have depression and anxiety and don’t need any help in causing problems in that area.
Doctor time! We discussed a lot today since it had been a year since I’ve been seen in person and not a Telehealth visit. He informed me that I am due for my bone density test yet again. I swear that thing sneaks up on me every time. I will be scheduled for that and if it shows no improvement since the last one, which showed osteoporosis, then we will talk about doing Reclast infusion once a year instead of the fosamax pill once a week to see if that makes any difference. I was started on Vitron+C (iron plus vitamin C) a month and a half ago because my iron was on the low side. He had them draw labs today to check my iron to see where it’s at. I’m not a huge fan of the vitron because it upsets my tummy in the sense of stinky gas and bowel movements. I told him my husband was really the one who wanted to know how much longer I needed to take it…haha. If I still need it we talked about doing an iron infusion instead of the pills. We will cross that bridge once we get results from the bloodwork.
CFers need colonoscopies starting at age 40 and I am 41, oops. Some clinics start at 35. So we will be getting that scheduled as well. He gave me the option to wait until I get the COVID vaccine or just do it now. I said do it now and get it over with because who knows when I’ll be eligible for the vaccine. It’s not pleasant so just get it over with. CFers have to do a much longer prep than you healthy folks. I will have to be on a clear liquid diet for a few days leading up to the prep to help clear out my colon. I also have to do more of a prep (lots of GoLytly), not looking forward to it but it must be done. My mom and grandma were prone to polyps so I need to get it done. I think that might be all. I’m sure I forgot something. I should have taken notes since it was such a long appointment…haha.
Until next time…
Today is my 41st birthday!!! When I was born, the life expectancy was 12. I don’t even think about the life expectancy now because it doesn’t define me. I had a good day with many phone calls, texts, Facebook messages and posts. Thank you to everyone that showed me some love today. It was greatly appreciated.
Until next time…
I did 2 weeks of IV Zosyn and was still not back to baseline. My lung functions had dropped from 35% at the beginning go IVs to 31% at the 2 week mark. We decided to do another week hoping to get over the hump. IV Zosyn is a bit daunting at every 6 hours but I manage. It wears me out to say the least. I sleep at every chance I get. I am able to “bump” my doses an hour either way which helps me get a little more sleep at one time. I’ve mastered it over the last few decades. At the end of 21 days/3 weeks my lung functions hadn’t come back up to where they were when I started IVs. I was at 32% at the end of IVs. With all that said, I am feeling better for the most part. I am however coughing a little more and coughing more up. I say better out than in! So it’s a good thing.
We had talked about putting me inpatient for IV colistin which was the one that messes with my kidneys and sent me into acute kidney failure a few years ago. That being said that is the reason they want me in the hospital for it because they would want labs everyday and be at the ready for extra IV fluids if needed. We decided against that for now. I may have to revisit that in the future when I get sick the next time (have a CF exacerbation). Yes, I say WHEN because it’s inevitable…it’s life with CF. I have another chest x-ray on February 16th to see if the pneumonia is gone. Hoping it is. If it’s not we will have to revisit IVs again I’m sure.
I barely made it through January emotionally speaking. This year my mom’s passing anniversary was harder for some reason. I found myself in bed more. Being sick on top of it didn’t not help either. I hope I’m coming out the other side of it now. My birthday is Monday which I always celebrate gladly unlike others. haha. I love getting older! Every birthday is a great milestone in my life. Especially since I am now past the “life expectancy” for CFers. I am always happy I made it another year. I might post on my birthday, I might not. Just depends on how nostalgic I am feeling…haha.
Until next time…
February 2020 was the last time I was on IVs. I would like to think it is Trikafta making the difference. I usually do IVs every 3-5 months so that’s a plus of Trikafta. It makes me attempt to take the bad (weight gain) with the good. Oh I did my lung functions with my home spirometer. My best fev1 was 35%. So basically holding steady which is good. They had dropped a little over the last few weeks but managed to be back to my baseline today of course. Haha
With that said I have been fighting something for a few weeks. I’ve had an increased cough, coughing more stuff up (which is less since Trikafta), more short of breath, been using my oxygen at night to help, wheezy and fatigue. I made the call for IVs. I have a telemed appointment on Thursday with my CF clinic. So I called to see if they wanted to see me or would prescribe IVs without. Thanks to Covid I was about to get things going without being seen but still have me appointment on Thursday to check in. My port is accessed, labs are drawn and a chest X-ray is done. Busy day at the hospital. Now I wait for the home health to deliver my IV supplies. I will be on Zosyn every 6 hours for 2 weeks. Here’s to no sleep!
Mentally I’ve been in a funk. We are coming up on the anniversary of my moms passing, Jan 19. It’s always a tough time reliving it. We are coming up on 5 years. So my depression has been creeping up. I’m trying my best. Yes I’m still seeing a counselor and taking my antidepressants but that’s not a cure all. There are still bad days. I take what I get.
Until next time…
I have been on Trikafta for one year as of today. The major things I have noticed is that I am coughing less, less coughing attacks and weight gain. I have not gained any lung function like others have reported. I have been stable though as far as lung functions are concerned. I have been lingering around 35% FEV1 (give or take a few percentage points). I still however get very short of breath with exertion like walking in a store or. any long distances, moving things around the house, making a bed, carrying things, etc. I wish I could breath better because that is the most frustrating thing right now, but that’s life with CF (getting closer to end stage CF).
As far as transplant is concerned, I’m still too healthy to be transplanted. I am ok with that because I’m not mentally ready for it at this time anyway. According to one of my transplant doctors most CFers get listed around 20-25% lung function or less. So I still have a little ways to go. Mind you one bad exacerbation (illness) and I could drop lung function pretty quick. That’s about it as far as an update on Trikafta. I have a virtual CF clinic appointment on December 17th, just a check in/check up.
Until next time…
It’s been a little while since I have updated. I’m doing pretty well considering the state of our world with COVID. I had my 3 month Trikafta labs. My liver function was fine as was all of other labs especially my vitamin D level which was elevated last time. I will have more labs drawn in 3 more months. I also had my mammogram this week. The results will be sent to my primary doctor and to me within a week or so.
I don’t really have much to update health wise which is good. We are getting into the weather change from summer to fall which affects me every year. My asthma gets in the way and I start wheezing more and coughing more. With that said I have been more wheezy and short of breath with exertion. That’s about all I have to update on.
Until next time…