I know I haven’t updated in awhile but count that as a good thing this time. I did have a birthday. I turned 42 on February 1st. When I was born, the life expectancy was late teens. So to say that I am very proud to have turned 42 is an understatement. It hasn’t always been an easy road but I’ve kept pushing.
Since 2016, January is not an easy month for me with the anniversary of my mom’s passing. By the time my birthday comes I’m ready to be happy. It’s still a hard time without my mom because my mom wanted nothing but the best for me and was my biggest supporter. I keep fighting in her memory. She is greatly missed.
Now for a health update… I am doing well for the most part. The weight gain I have had from Trikafta is not fun but it is what it is and I have to endure it. I have been sleeping a lot. I take after my mom and grandma when it comes to being a night owl and sleeping late in the mornings. I have to get up to take my morning meds and do a breathing treatment but I have been laying back down when I’m done if I have nothing else to do. I have had some blah days mentally/emotionally. I do have SAD ( Seasonal Affective Disorder) or commonly known as the winter blues. It’s real and it sucks. I need sunshine…real vitamin D and warm temps. Granted here in Tennessee we don’t get crazy cold and lots of snow so I’m not complaining too much but I’m still ready for summer. I don’t miss midwest (KS/MO) winters what so ever.
I think that’s a good update for now. 😆 I have a CF clinic appointment in March, I’ll update after that.
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…
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…
The new triple drug for CF has been approved! You can read the FDA article here. It is supposed to help about 90% of the CF population. It is for my CF mutations (double delta f508). The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor). I can’t help but to think trifecta when I see the name…haha. Continue reading
Hey all! It’s been a little while since I have updated. I have not been feeling well for a few weeks. I have been coughing more, especially at night. I went for lung functions and to give a sputum sample today. My lung function is down just a tad. My FEV1 was .95L/33%, down from 35%. That’s the amount of air that I can push out in the first second after taking in a big deep breath. Which basically means I’m using 33% of my lung capacity. Continue reading
I started Symdeko April 19th. It started to affect my mood (depression and anxiety), my hair has been shedding and giving me slight acne. I decided to stop taking Symdeko mainly due to the depression and anxiety issue. I have not felt like myself in awhile. I made the decision to stop the Symdeko and the Effexor and find another antidepressant that will hopefully work better for me. Now I’m thinking maybe I should have just stopped the Symdeko, but I didn’t think it was causing any issues until I realized that was the only new thing. Now that I’m off of the Effexor I will try my best not to go back on it if at all possible since it was so hard to come off of it. Continue reading
When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs. Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs. With my line of drugs that don’t work I’m limited. Well I had to call them back because my cough and wheeze were still hanging around. I asked only for a short burst of prednisone hoping it would help. You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased. I went for lung functions and they were down a little (FEV1 34%/.98L). When compared to my last set of lung functions they are down 4%. Continue reading
I am officially off the Effexor and it has not been easy. I am experiencing what are called “brain zaps.” It is really like your brain goes “bzzz zzzz zzz.” It is very annoying and makes me want to scream. My body is sore. The commercials that say “depression hurts” are the truth. It doesn’t help right now that I am on Levaquin that causes joint and muscle pain. It’s a double whammy. Continue reading
Today was a regular CF clinic check up. Unfortunately I haven’t been feeling the best for about a week. I have been coughing more and coughing up more as well as super tired. This all could be playing into my depression and antidepressant med change. Continue reading