Today was CF clinic day. I am seen every 3 months, so today was a regular check up. However, I have been wheezing more so it was good timing. They had me do my lung functions at home on my home spirometer. My FEV1 was 35% which is my baseline (average). If you are new here the 35% FEV1 means I am using 35% of my lungs to breath. Most healthy people are 100% or more. They checked all my vitals and they were all good except that I had gained some more weight. Usually that would be a good thing for a CFer but I have gained quite a bit over the last 2 years since starting the new CF drug Trikafta. So basically they aren’t concerned with my weight but I am. The extra weight doesn’t make my breathing any easier that’s for sure.
We spoke about all my meds and what changes we could make, if any to change. They are going to try and up my inhaled steroid Budesonide (Pulmicort) in hopes that it will help with my wheezing. I have been wheezing a lot and getting out of breath easily with activity. My oxygen sats are fine so oxygen is not the answer. I am thinking it is a combo of the extra weight and the weather changing. The season changes mess with me every time.
They drew labs while I was there to check my thyroid, iron and vitamin levels to see if any of that could be contributing to why I’m always tired and sleep a lot. They decided to do an oral antibiotic, Augmentin, for 2 weeks and a prednisone taper over a 10 days. Hoping that combo helps with my wheezing and rattling in my chest. I see them back in December for another 3 month check up.
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…
My previous counselor retired….insert sad Shannon. I had been seeing her for 4 and a half years. I last saw her at the end of July. Today I saw my new counselor. I really like her. I even was given homework.
My mental health is very important. When you have a life threatening genetic disease it is good to always have someone to talk to whether it’s a friend or family member you trust. I have plenty friends with CF which help a ton! They know what I am going through when it comes to CF which is great. I can bounce ideas and things off of them which is also great. With that said, having a professional person to talk to is always a good thing.
I see a psychiatrist that manages my antidepressants and anxiety meds but doing talk therapy helps in a whole other way. It helps me tremendously. You are not weak if you reach out for help. It is the strongest thing you can do for yourself.
Make sure you are taking care of yourself inside and out. If you are not feeling like yourself and you can’t seem to shake it, seek help. I am always here for you but professional help is always best.
My depression has been pretty stable even through this stupid pandemic. The anxiety is another story but I’m managing it with meds and talk therapy.
CF health update: I have been feeling pretty good. I had my yearly labs drawn along with my liver labs for the new CF med Trikafta. My vitamin D was a little elevated so I had to stop all vitamins, calcium and extra vitamin D. They will redraw my blood in 3-6 months to check my vitamin levels again. High vitamin D can cause problems with organs especially the kidneys which I have had issues with before. I was taking extra calcium and vitamin D was because of my osteoporosis diagnosis. I take Fosamax weekly for it as well. I do know that I am not having any of the side effects of high vitamin D which are nausea, vomiting, poor appetite, stomach pain, constipation and diarrhea.
I have been on Trikafta (the new CF drug) for about 10 months. My liver levels have been good every 3 months when they have been drawn. After being on Trikafta for a year I should be able to go to having labs drawn every year. There is a possibility they may want to check my levels more often since I do have nodules on my liver to make sure my liver enzymes are still maintaining. Who knows they could request a liver ultrasound at some point since that is what my transplant team does at my yearly check ups with them. I didn’t get to go to my May appointments because of COVID. I’m not sure when I will get them rescheduled. Maybe next summer when things “have calmed” down.
I think that is a good update for now. I do have a Telehealth visit for CF clinic on September 3rd. I’ll update if there is any thing to update about. haha
Until next time…
I have had a lot of people ask me my thoughts on wearing masks during this pandemic. I’ll start with this, it seems to me that wearing a mask is common sense where we are in this time but there are people who are refusing or saying they can’t because of “health reasons” or they “can’t breathe” in a mask. Continue reading
I contacted my transplant coordinator and had her ask my doctor about me trying Trikafta (the new CF drug) in regards to my liver nodules. Doctor said it is fine to take it we just have to monitor my liver enzymes closely. Continue reading