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!
Until next time…
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…
I’m going home!!! I just signed my walking papers aka discharge paperwork. I’m doing a dose of cefapime right now since it was due. It only takes 30 minutes. At home it is just an IV push which means I push it over 20 minutes (it comes in a big syringe). The hubs is heading here to pick me up. He’ll swing through and I’ll go down, get in and be on my way!
I didn’t know if I would be able to go home today because one of the doctors I saw said they usually want another set of lung functions after 7 days. I had them last on Sunday morning so I kinda bargained with him to do them Friday morning. He contacted my CF doctor (who’s on vacation) and my CF doctor said he was fine with me going home early! Well isn’t he the best! I might just have to get him a gift to say thanks. I am able to use my home spirometer if they want updated numbers. I have an appointment for labs on Tuesday morning. I usually get labs once a week when I’m on IVs unless I’m on colistin or other antibiotics that are hard on my kidneys. If I’m on any of those antibiotics then I get labs twice a week.
They are delivering my IVs to my house so I don’t have to wait at the hospital for them. I’m set to be done with home IVs on Saturday the 7th which will be a total of 14 days of IVs. We can always reevaluate then if I feel like I need another week. I’m hoping I’m good to go on Saturday though. I’ve been known to need 3 weeks of IVs, so I’m hoping not this time. I am also doing oral prednisone tapering from 40mg for 3 days to 20mg for 3 days then done.
I’m not going home on oxygen thankfully. My oxygen sats haven’t been dropping as low when I don’t have it on while going to the bathroom or getting cleaned up. I will be taking it easy when I get home because recovering from the parainfluenza, slight pneumonia (really only means an infection was able to be seen on the CT) and a CF exacerbation will take some time. I don’t have anything planned for the next week except for labs on Tuesday so all is good. I’ll update if/when there is anything to update.
Until next time…
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.
Until next time…
The steroid debacle of not getting what I wanted/needed has finally come to an end. I just received a 80mg dose of solumedrol (IV steroid). I received 2 doses of 40mg solumedrol before this. The attending pulmonary doctor that saw me this morning agreed to do the 80mg. Also I looked in my patient portal for my hospital and saw that I don’t have influenza A, I actually have a parainfluenza. It’s still the flu either way. I was also able to see the reports for my chest X-ray and chest CT. My X-ray showed no changes. My CT speed showed a spot of pneumonia. That only means I have an active infection so don’t freak out. It also mentioned bronchiectasis which is narrowing of the airways which I’ve had for awhile. It didn’t mention any progression.
I’m still feeling the same, no better. I’m hoping the solumedrol will kick in and help in the next day or so. It usually takes a few days to start working. Then it takes maybe 3 days or so of being on the solumedrol to be able to go to a lower dose. I’ve been continuing the IV cefapime antibiotic every 8 hours.
Today was pretty uneventful really. I did manage a nap with only 2 interruptions. I did get more sleep last night as well such was nice. I’m in the hospital so that means no sleep. It’s hard because you are supposed to be able to rest to get better but they are always in and out all day and night. I do ask that they don’t do vitals overnight so I can possibly get some sleep. But things start bright and early around 5:30am or so with drawing labs. I’m still hoping I can be out of here by Friday so I don’t have to spend New Year’s in the hospital. That would be no fun at all. I will be going home on IV antibiotics like usual so it will be at least 2 full weeks of cefapime. I will also be on a prednisone taper. I think that’s all for the update tonight. Thank you for all of your love, prayers and support. I appreciate it very much.
Until next time…
Today I had an appointment with the allergy doctor to discuss injectable asthma biologis, which is asthma shots. I have had asthma since I was a kid. It has really been bothering me for probably the last year. After getting my most recent labs and lung functions, along with my previous allergy skin testing from back in 2014 (I think) she decided to prescribe Dupixent. She gave me orders for additional labs to check my eosinophils level, a few immunoglobulin levels, pneumococcal titer and tetanus titer. I filled out the paperwork to get the Dupixent approved by insurance. The Dupixent company will mail the medicine to me when it is approved. It could take up to a month to hear if it is approved. I learned that Dupixent is not only for asthma treatment but also for nasal polyps. I had many sinus surgeries for polyp removal as a kid. My last sinus surgery was in 2001, I was 21. During the last surgery they also made “windows” in my front bottom sinuses. Basically they drilled holes in the bone to make drainage easier so they wouldn’t get packed again. It was a rough recovery from that one. My face hurt for a long time after. My sinuses have doing well since that last surgery. The Dupixent will also help with inflammation in my sinuses as well as inflammation in my lungs. The hope is that the Dupixent will decrease my wheezing, tightness and shortness of breath. I would love for that to be the case. I’m over always being out of breath and my lungs feeling tight. I do have crappy lungs anyway with 35% FEV1 but any help is appreciated. When the Dupixent is approved I will call the allergist and make an appointment to have them show me how to administer it.. It is similar to how an epi pen works as far as it being in a “pen” and you inject it in your thigh. It is every two weeks. Here’s to hoping the approval is smooth sailing!
Now for an update from my last post when I was sick. I finished the oral Levaquin on Saturday and finished the prednisone on Tuesday or Wednesday. I am feeling better thankfully. I guess I’m back to my normal crappy. For now, no home IVs! I’m due to see my CF doctor again in the beginning of March for a regular 3 month check up. As always, if I need to be seen before that I will call. I’m hoping I don’t need to call of course.
We just got home from visiting family and friends for the last 10 days. It was great seeing everyone but man was it nice to be back home and able to sleep in our own bed and just to be back in our own space. We sure do love East Tennessee. I’m thankful the Air Force brought us here. I think that is all I have to update. Thank you for all your love and support as always!
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…
Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading
I finished 3 weeks of IVs earlier this week. I do feel better than I did BUT I’m still having coughing attacks. I’m attributing it more to asthma though. I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being. I’m going to hold off and see if treatments and such can help. We all know how much I love prednisone, NOT! My lung functions were the same at FEV1 .96L/34%. My first two attempts were 33% and my last one was the 34%. I will follow-up in 6 weeks. Continue reading