Tag Archives: lung function

Hospital Follow Up

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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…

Shannon, how are you feeling NOW?

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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…

Check in time!

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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…

Christmas in the Club: Day 4

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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…

Christmas in the Club: Day 3

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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…

CF Clinic Check Up

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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…

IV antibiotic time

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I have been sick since my birthday, so 2 weeks now.  I tried oral antibiotics which didn’t help.  I threw in the towel and called my nurse to get IVs started.  I had a “sick visit” today since they wanted to see me and get lung functions done.  My FEV1 was down a bit to .91L/33% (last time was 36%).  I’m having more shortness of breath, fatigue and cough.  It’s been a long 2 weeks of being sick and not feeling good.  After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn.  Now I’m just waiting for meds to be delivered so I can get started.  I’ll be on IV Zosyn every 6 hours for 2 weeks.  Hopefully 2 weeks is all I need.  I think that’s all.

Until next time…

2 Week Trikafta Update

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I’ve had a few people ask how I’m doing on the new medicine so I thought I would update.  Today is day 14 on Trikafta, the new CF medicine.  On day one I noticed a difference in my cough within about 4-5 hours from when I took my first dose.  My cough was more “juicy” and productive.  It was the medicine working to try and clear out the old mucus in my lungs.  I was coughing more and coughing up more than usual as well.  By day 3 my cough had changed back to my usual dry cough and was not very productive (my usual).  I’m coughing less but still having coughing fits as per my usual but they are less intense and I recover faster.  I also recover from being out of breath faster as well.  My sputum (mucus) is lighter in color and thinner (not as thick and sticky).  I’m not coughing as much at night, or at least I’m not waking up to my coughing as much.  I have not had any bad side effects thus far. Yay! Continue reading →

Clinic day/follow up from hospital

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Today was CF clinic day.  It was my normal 3 month check up that turned into a hospital/IV follow up.  It seems to happen that way most of the time.  I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one week was a bit much…haha.  No worries, I am not losing weight per se, I just had gained weight from being on high doses of prednisone.  I am just fine in the weight department. Continue reading →