I just had a telehealth appointment with my CF doctor to follow up after my hospital stay. My lung functions on my home spirometer were 32% again which is the same as they were at the end of my 14 day course of IVs and steroids. I told him how thankful I was for him being reachable/available while he was sitting on the beach in St. Lucia while I was in the hospital. It made a world of difference because he was able to tell the pulmonary doctor that was on service in the hospital what I needed and he confirmed that I am in fact a compliant patient and would do everything I was supposed to at home. I told him I owe him a gift. Haha. We decided that this admission was more so my asthma acting up and then a CF exacerbation and the parainfluenza as a side note. Hence the reason I needed high doses of steroids to open my lungs up.
All is going well since finishing the 14 day course of IV antibiotics and the prednisone taper. I was needing breathing treatments every 4-5 hours when I got home from the hospital. I’m now able to go longer between treatments. I’m averaging 3 treatments a day unless I need an extra one. I’m basically back to my baseline with my lung functions between 30-35% and treatment need decreased and not as short of breath when doing nothing.
Wednesday I received my loading dose of Dupixent, the asthma medicine. We are hoping the Dupixent is going to reduce the inflammation in my airways and decrease my wheezing and shortness of breath. My allergy doc called my CF doctor to make sure he was on board with giving me Dupixent due to me having CF. He told her that he was on board and he had quite a few CF patients on it. I’m thankful that I have doctors that are willing to communicate about my care. I will now give myself the Dupixent injection every 2 weeks. It could take a few doses to see improvement. Here’s to hoping it works!
My CF nurse called today to check in and see if I needed another week of IV antibiotics. I told her I’m as good as think I’ll get and that another week of IVs won’t do anything. My doctor wanted me to do home spirometry (lung functions) and to send it in so he can see it. My FEV1 was 32%! So I’m back up to my baseline between 30-35%. My last days dose of IVs will be my 10pm dose tomorrow night. I can then deaccess my port and be free!
I’m not as tight or wheezy as even I went into the hospital. I was up at 4am wheezing so I did a breathing treatment and stayed up until my 6am dose of IVs. I’m also not as short of breath so I’ll take it. I’ve been able to do more around the house, like cleaning. I do still have to take breaks like I usually do but I’m about to push through.
I’ve had some people ask about lung transplant and where that stands with having my lung function having been down to 21%. I’m still not ready for transplant yet. To be reevaluated for transplant, my lung functions would have to be 29% or under (steadily) along with other things like being resistant to IV antibiotics meaning they are having no effect on my lungs. IV antibiotics already are not as effective as they used to be when I was younger. I don’t bounce back like I used to. There are still different antibiotic combos they they can try for me with the hope they will help. We aren’t out of options quite yet.
Like I said before, you learn to adapt to lower lung function as it slowly goes down. The reason I noticed such a difference in my breathing when I went to the hospital was because it had dropped like 12% rather quickly. Yes, new lungs seem like a solution but there’s more to it than just getting new lungs. It’s a lot of hard work getting listed and enduring transplant. I will cross that bridge when the time comes. I’m still not mentally ready for transplant. It is so scary! It’s a journey for sure. Yes, I would get ready real quick if I declined quickly and had to be listed sooner than I would like. There are a lot of moving parts that have to be figured out when I do list for transplant. We will figure it all out in due time though. I know I have a lot of support with my family and friends. I will make it!
I have a telehealth appointment with my CF doctor on Friday the 20th for a check up after finishing IVs. I will do lung functions again and send them in the day before my appointment for his reference. I’ll update after that appointment.
Oh, and I got word that I was approved for Dupixent, the asthma medicine. I have an appointment with the allergy doc/nurse on the 18th to do my first injection in the office so they can teach me how to do it. The initial dose is 2 injections and then it’s 1 injection every 2 weeks. It’s in a pen injection like an epi pen is. I’m really hoping this helps my asthma and I won’t get as short of breath. We shall see.
Hey all! I was educated on what parainfluenza is so I thought I would share. Parainfluenza is not actually like the regular flu. First of all the flu shot doesn’t cover parainfluenza so even though I got my flu shot it wouldn’t have protected me from parainfluenza. It can last up to 16 days, if not longer. No tamiflu is given for it, just Tylenol or ibuprofen for aches, pains and fevers. With that said, having parainfluenza along with a CF exacerbation (whether the parainfluenza brought on the exacerbation or not doesn’t really matter) it’s going to take me awhile to recover from this.
I spoke with my CF nurse this morning. I had sent her an email about the steroid debacle and just to fill her in in general. Apparently my CF doctor is in St. Lucia for vacation. Rough life I tell ya. Haha I told her I finally got the correct dose of solumedrol finally. She did tell me what my lung functions were when I did them yesterday since no one ever came to tell me. They are 21% FEV1. So yes I am much lower than my normal which is between 30-35% regularly.
So with my oxygen saturation being down when not on oxygen, low lung function and having parainfluenza it might be a long recovery ahead of me. I will need to get my lung functions up some, off IV steroids and on oral prednisone and hopefully off oxygen so I can go home. Going home on oxygen is not the end of the world but not ideal. It would be much easier to not need oxygen at home. I will be on IV antibiotics when I got home as usual. I usually do 14 days total of antibiotics but sometimes I need a total of 21 days. We will have to just wait and see how things pan out. I might be a little less tight but still getting short of breath when I go to the bathroom without oxygen. I don’t have anything planned today (that I know of) just the usual antibiotics and breathing treatments and resting. I think that’s all for the update for now. Thank you for all your support and prayers. I appreciate them so much.
I coughed up more blood last night and morning, totaling about 1/4 cup if not more. Well we know what that means by now. Yep, another embolism. I went down for the procedure at 10:45am but I didn’t get into the procedure room until 12:40pm. They were so over busy. I made it back to my room around 2:30pm. The best part of getting back to my room was I got the luxury of laying flat for 6 hours! I had to eat laying down. I had to pee into a bed pan laying down. That is something I would rather not have to do ever again. Continue reading →
Let’s see….where to start. It’s been 7 days since my power port was placed. I’m healing nicely. There has been minimal swelling and bruising. The most painful part is the incision healing. I have been using ice packs for the swelling and bruising. There is a steri-strip over the incision that will come off when it’s ready. I sure do want to rip it off though, it is making it to where if I move a certain way it pulls and is painful. Continue reading →
I was paroled from lock up on Monday the 7th after 12 long days. It seems that every time I’m on the ride back home from the hospital that I notice all sorts of new things along the way. This time it was road construction. The Smokey Mountains are never a new view to me but the drive from the hospital to our house has one of the best views of the mountains and I am always in awe of them. Never fails, it’s my favorite drive with the best view. It’s home to me. Continue reading →
I finished IV antibiotics last night. It’s been a long 5.5 weeks of multiple antibiotics. Doing IVs is second nature now after all these years. I’m very organized so I always have things set up to make IVs easier to weave into my regular schedule.
I finally had my GYN appointment yesterday and had a vaginal ultrasound this morning to check things out. Man was I excited for the later of that last sentence. haha I have been having the typical symptoms of a cyst some of which are nausea, bloating, painful “other actions,” (if you catch my drift) and obviously abdominal pain/cramping. Continue reading →
DISCLAIMER: Men (if there are any that read this blog of mine that is) this may or may not have a little TMI and talk of girlie stuff with a side of CF.
I have mentioned before how my periods affect my lungs every month. Well this month my “lady parts” decided to go off on a tangent and not obey the rules at all. I am not a fan of “lady parts,” or at least my internal “lady parts.” Let me explain why I dislike them so much. I promise there is a little bit of CF in this post too. Continue reading →
Today was a good day and a good clinic day at that. First stop is always the scale, everyones favorite thing. I have been keeping my weight up which is a good thing medically speaking but not so good in the clothes department. I have gained 12 pounds since January, 4 of which have been since last month. There is a lot of yoga, sweatpants and other workout gear being worn around here. Mind you, there is no “working out” going on here except shoving myself into my skinny jeans/non stretchy shorts and “fitted” tank tops. Of course there is the real exercise going on at Physical Therapy for my shoulder, which is getting much better by the way, but that is it. hahaha Continue reading →