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.
Until next time…
I just wanted to give you guys an update since I’ve had a lot of people asking me how I am feeling since getting home. Well, that’s a loaded question really. CF sick is very different from “normal” sick. Most healthy people recover fairly quickly from the parainfluenza/flu or other viruses. However, with having CF (which already has my lungs very scared and diseased) a respiratory virus takes much longer to recover from. You have to take into account how bad my lungs already are. My baseline lung function is 30-35% which is not very much. Healthy people can have upwards of 100+% lung function, so my lungs suck very bad. So with having the parainfluenza on top of a regular CF exacerbation, it makes it much harder to “get better.”
I have cultured pseudomonas for years (I’m talking like 35+ years probably) in my lungs. That means that when I have a CF exacerbation (flare up if you will) we treat the pseudomonas. I will never get rid of it. We are basically treating the symptoms (increased cough, increased sputum production, more shortness of breath, increased wheezing, etc) and somewhat hope to knock the pseudomonas down a little bit. It doesn’t go far by any means because my lungs love to hold onto it and keep it nice and safe in there.
Antibiotics (oral and IV) don’t work as good as they used to for me. That’s the case because I have been on antibiotics so much over the years, my body gets used to them and they don’t have as much of an effect. I am allergic to some antibiotics which eliminates them for being in my arsenal as well. Prednisone doesn’t seem to open my lungs up like it used to either.
So with all that said…I am basically feeling the same, no better and no worse. I am very organized with my breathing treatments and IVs. One reason I don’t like being in the hospital is that they don’t keep a strict schedule with things. Yes, in the hospital I get my IVs in the window of time (every 8 hours for the current med) and breathing treatments when I request them. When I’m at home, I am on time with IV times and do my breathing treatments every 4-5 hours, except for when I’m sleeping unless I need one. I like being in charge of my stuff. I know I will do everything when I need it. Some people may go into the hospital and assume the nurses and doctors have it under control. That’s not always the case. I take better care of myself at home than they do in the hospital for my regular CF stuff. You have to be your own advocate for your healthcare. That’s why it’s very important to know what medicines you are on, when you take them, know your allergies, medical history and much more.
I’m sorry this is long…Bear with me. I just felt the need to explain that all in hopes that you can understand better what being CF sick is all about (within reason). So yes, I wish I could tell you I’m much better after being released from the hospital but that’s not the case. It’s going to take some time. I will continue to do all the things I need to do to make the best recovery. I’m hoping to get back to 30-35% lung function since that has been been baseline for some time now. Also remember that CF is a progressive disease which means it does get worse over time, with usually a slow decline. Now going from 34% to 21% lung function (relatively quick) was a bit of a shocker to the ol lungs and harder to adapt to. With CF being a slow progressing disease, you learn to adapt to lower lung function as it comes. Ok, I think that is a good update for now. Haha. Thank you for hanging in until the end of this post. Thank you for all the love, support and prayers!!
Until next time…
One of the pulmonary doctors (Dr. G) came to see me this morning and of course I was still asleep so I had to wake up to talk to him. The result of waking up and sitting up in bed was a massive coughing fit. I guess the good side of all of that is that the doctor got to see my coughing fit in action. He asked if this was how every morning went. In between coughing I said, “yep.” Continue reading
We know that living in Tennessee has taken a toll on my health in the area of lung function. I have dropped 24% in the 22 months living here. I have asthma along with CF so that is a double whammy. I did skin allergy testing about a year ago and it showed that I wasn’t allergic to anything. I was hoping that it would show something so I could have some answers as to why I was having such a hard time. I was bummed. I wanted answers. Continue reading
What is “normal?” Normal is a relative term. My normal is not someone else’s normal. My normal is what I know. Now with that said you might ask where I’m going with this. Well let me fill you in…haha.
My normal consists of coughing, lung cookies (sputum), breathing treatments, vest treatments, lots of pills, chest port, IV antibiotics, club med stays (hospital stays), shortness of breathe, wheezing, being worn out among other things. I am not able to just get up and go and that is probably one of the most frustrating things. The first thing I do in the morning is a treatment. I am almost worthless until I do a treatment. I know some CFers are able to just carry on and cough but that annoys me (for myself). I am unable mentally to just continue to cough if I know that a treatment will help. I get frustrated with myself when I am coughing a lot. I don’t realize how much I am coughing until I hear myself on video/recording or until someone comments on my cough. Usually it is my husband who comments and asks how I’m feeling. He usually knows when I’m getting sick before I realize it by my increased cough.