Tag Archives: life

IV time again

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Welp, I made it 4 months and 20 days since I was last admitted to the hospital. Which means it’s been 4 months and 8 days since my last round of IVs ended. I have been extra out of breath the last week and a half, give or take. Walking and bending over are making me more short of breath right now and it’s taking longer to recover and get my breathing back under control. I did lung functions on my home spirometer and they were down 5%. In March at my clinic appointment my FEV1 was 35%. Yesterday my FEV1 was 30%. I sent an email to my nurse yesterday with a copy of home spirometry results and asked for IVs and a prednisone taper. I hate admitting defeat and waving the white flag of surrender but it’s the necessary evil. I will be doing IV cefapime (IV push over 10 minutes) every 8 hours for 11 days. My prednisone taper will be 60mg for 3 days, 40mg for 3 days, 20mg for 7 days and 10mg for 7 days. We are hoping that by dragging out the end of the prednisone taper it will give a good burst at the beginning and then keep it in my system for longer to hopefully open my lungs up better. Prednisone hasn’t been working like it used to. Prednisone is to help combat the inflammation in my lungs and airways. I also have bad asthma on top of crappy CF lungs so it’s a double whammy. My lungs are very scared from CF disease progression and inflamed from asthma. Unfortunately you can’t reverse that damage so I have to work with what I have.

I’m only doing 11 days of IVs because we will be going on vacation very soon so I’m only able to do a shortened round of IVs and hope for the best. If I’m not feeling any better when we get back from vacation, I will call my doctor and we will work out a treatment plan. I’ve traveled with IVs before and it’s a pain in the butt so we’re squeezing in 11 days so I don’t have to travel with them. My IV supplies and antibiotics will be delivered this evening. Tomorrow morning I go to get my port accessed and labs drawn. While I’m at the hospital I will get a chest X-ray as well just to make sure I’m not dealing with anything extra since I have had some lung pain. I’ll go back to the hospital to get my port reaccessed (the needle has to be changed every week while accessed for IVs) and more labs next Tuesday. Hopefully this does the trick so I can enjoy our vacation. If not, I’ll push on through like always and have all the fun while we are gone and then come home and get going on another round of IVs most likely.

Nothing like ending CF Awareness month with a round of IV antibiotics. haha Although, I’m always aware of CF in my life and it’s inconvenience but that’s ok, it’s my life and I’m thankful to have the life I have. I’ll update next week after I do my home lung functions.

Until next time…

CF Clinic Check Up

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TodayI had my 3 month check up. I’m seen every 3 months when I’m feeling decent. I was last seen in January after my stay in the hospital. My lung functions are holding steady. My FEV1 was 35%/.94 L. My baseline is between 30%-38%. My weight was down a few more pounds which I’m happy about. I’m not doing anything to try to lose weight but with the amount of weight I put on from Trikafta, losing a few pounds is a good thing. Don’t be worried about that part. It’s A OK! My lungs sounded decent. All other aspects (dietary, pharmacy, PT) of my appointment were good. I’m up to date on all screening tests as well like abdominal ultrasound, bone density, labs, glucose tolerance, chest X-ray. I go back in 3 months for another regular check up. There’s nothing much to update on which I’m perfectly fine with. I’ll definitely take the normal CF crap over sick CF crap. I hope you all are ready for spring. I know I’m very ready for warm sunshiny weather all the time. Although I am in east Tennessee so we don’t get bad winters and we don’t get very cold. We have had some beautiful days in the last few weeks.

Until next time…

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…

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 2

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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…

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…

Appointment with Allergy Doctor

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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…