Tag Archives: cflife

Happy birthday to me…I’m 43!!

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My 43rd birthday was yesterday. February 1st should be a national holiday by now! Haha

I absolutely love my birthday. I know most women don’t like getting older but I’m not most women. Getting older is a blessing a lot of people take for granted.

Life expectancy numbers have never really worried me. It’s just a number. When I was born the life expectancy was around 12. Now for CF patients that were born between 2017-2021 the life expectancy is 53!!! There are now many more treatments and medications for CF including the revolutionary modulators like Trikafta that works on the cellular level. Research for CF is so important to extend the lives of those with CF. Finding a cure for CF is the ultimate goal. The CF Foundation has more than 70 chapters in the United States. Their slogan is “make CF stand for Cure Found.” You can go to http://www.CFF.org to find a local chapter or to donate to the cause. You can also find a Great Strides walk close to you. You can start a team or be an individual walker. Great Strides is the biggest fundraiser for the CFF.

Thank you for always checking in on me and for all the prayers and positive thoughts. Just remember that growing old is a blessing that isn’t offered to everyone.

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

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First of all I hope you all have had a great Christmas so far. Now onto other business.

Yes, you read the blog title correctly. I’m in the hospital aka “club med.” Now let me fill you in on the details. As you know I was sick and on oral Levaquin and prednisone for 2 weeks. I finished those on the 10th. I had a decent week after that. After that I started getting more short of breath so I upped my breathing treatments. Yesterday I was even more short of breath and did even more breathing treatments with no relief. We were hosting dinner for Christmas Eve so I pushed on through like I do. After everyone left and I was cleaning up I had to have my husband finish cleaning up so I could do another breathing treatment. Well after the treatment I was still not breathing great and short of breath just sitting on the couch.

I made the decision to throw in the towel and go to the ER at 9:30pm on Christmas Eve night. Let the adventure begin! It was a relative smooth process which I was surprised with it being Christmas Eve. While in triage in the ER I had a bunch of labs drawn along with the dreaded brain swab for all respiratory stuff. I later found out that it did sore influenza A. I also had a chest X-ray and a chest CT. I did 2 doses of IV antibiotics while I’m the ER, meds that I don’t usually use. Then the pulmonary doctor on duty came to see me while I was still in the ER. We discussed doing cefapime like my CF doctor talked about me doing if I wasn’t any better after doing the Levaquin and prednisone. I, of course, asked to do steroids more so specifically IV solumedrol as well because I’m very tight and short of breath. He said that’s fine. Also, when I came in my O2 sats we’re at 90% so I’m on 3L of oxygen right now to help give me a boost. I’m sitting around 97% with O2 on. I take it off to go to the bathroom because it doesn’t reach and I drop again.

I got to my room at 1am. Of course I had a parade of people in and out. Finally got my port accessed at 3am. I slept from about 4am until 6am when my nurse was in drawing more labs and hanging the new antibiotic cefapime. I think I was able to get maybe another hour and a half until it was shift change and people started coming in.

Later another pulmonary fellow came in. He was not so keen on giving me steroids. I’m hoping my CF doctor talks some sense into him when he’s able to talk to him. Haha. It’s really hard going into the hospital on a weekend and Christmas Eve to boot when you have a chronic illness and know what you need but your doctor aren’t there. I may not get started on steroids until tomorrow. I hope that’s not the case though.

I’ll be here for at least a few days to get the antibiotics on board and hopefully the steroids so my lungs can get open. As usual I hope to be out by Friday. I hate weekends in the hospital. I’ll keep you all updated as things go. Thank you for all your love and support.

Until next time…

3 weeks of IVs complete

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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 →

IVs it is

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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 →