Looks like I forgot to update back in October. I wasn’t feeling good at the beginning of October so I did a round of oral Levaquin for 14 days and prednisone. It didn’t really do much but I held on until last week. I started with a sore throat and sinus drainage on Thanksgiving day. I went to the walk-in clinic last Saturday. It is always a gamble going to doctors that don’t know me or my CF history. I started another round of oral Levaquin (Saturday) and prednisone (Monday). I have a sinus infection that has made its way to my lungs. Today I had a regular CF clinic check up. My lung functions are pretty steady considering I’m sick. My FEV1 was .93L/34%.
My lungs sound junky, especially in the lower lobes. We decided to make a plan since I will be out of town until the 12th. I will finish the Levaquin and prednisone at the end of next week. If I’m no better by the time I get back in town I will start home IVs. I will do cefapime which is a push (just a syringe of medicine that is pushed in over 10 minutes) every 8 hours for 14 days. I will not be surprised if I end up on IVs because it’s been awhile.
I have been having random bruising the past few months so he put in orders for labs if/when I start IVs since they will be drawing labs anyway. My labs were all fine in September but things change. I’m also being referred to an allergy doctor to talk about doing asthma medicine shots, like Dupixent. My asthma has been a problem a lot lately. I’m hoping that will help with my wheezing and shortness of breath.
The national CF conference was not too long ago and they discussed doing an abdominal ultrasound every 2 years as a maintenance test just like the bone density scan. Mainly to look at the liver because the liver is not always good in people with CF. I think that sums up life to this point. I will update about how I feel and if I end up doing IVs.
Until next time…
Today I had my 3 month check up. First stop was the lab for my yearly labs. I managed to con my nurse into waiting on my glucose tolerance test for awhile. I hate that test. It upsets my stomach and sometimes gives me a headache from all the sugar. Plus being stuck 3 times in the hand (my arms are too scared for blood draws) in 3 hours sucks. Next stop was pulmonary function lab..My lung functions were basically the same. My FEV1 was 39%/1.08L. Last time was 40%. So holding steady is good. Last stop was clinic…oh yeah I was weighed in the pulmonary lab and I have lost weight which is good. With Trikafta I gained a lot of weight. I think I’m down about 10 pounds. I’ll take what I can get! I haven’t really been trying that hard. I did start calorie. counting and watching my diet but I saw that I was rarely going over my allowed calories so I stopped counting. haha. My doctor said my lungs sound good and I look good. My oxygen company contacted me to let me know it was time for my reevaluation to see if I still need oxygen. I haven’t used oxygen in about 2 years so I will be saying bye to my concentrator and portable oxygen. I’m ok with that because I wouldn’t fail the 6 minute walk showing I need oxygen. I just liked having it as a crutch just in case I was having a bad day. I can always get it back if needed. I see him back in 3 months for another regular check up. Now I just wait for my lab results.
Until next time…
I had covid last month and my lung functions went down to 37%, from 41%. I had a mild case of covid. I had a cough and I basically slept for about 5 days. Not much more than that. I did have the antibody infusion and a weeks worth of prednisone for the chest tightness.
Today was my regular 3 month check up. My lung functions went back up to 40% / 1.12L FEV1. I have managed to lose 5 pounds, which is good. My lungs sounded good, no wheezing, at least when he listened to me. We discussed the mental health side effect of the Trikafta that I have been dealing with. It has been worse since Covid as well. I have more blah days than I would like. I made an appointment with my psych doctor to discuss my meds and a possible change in one of them. That appointment is in 2 weeks. Maybe with a med change my blah days will be less and I will have motivation. Summer is my favorite season because of the ability to be outside in the sunshine which usually helps my mood.
I go back in 3 months for a regular check up. I will have my yearly labs drawn at that time to check my vitamin levels, liver function and kidney function, among other things. They check my sputum culture every clinic visit to see what bugs I’m growing in my lungs. I am usually growing only pseudomonas. We only treat it if I am having symptoms of an exacerbation. That would be increased cough, drop in lung functions, more wheezing/tightness, fever (I rarely run a fever when sick though), fatigue, lack of exercise endurance, etc.
All in all it was a good visit. We did talk about adding Spiriva (inhaler) for my asthma if I feel like I need it later. I didn’t want to add it just yet. I’m going to try using my albuterol inhaler before I do the treadmill to see if that helps with the wheezing while I exercise but that is the only change.
Until next time…
Today has been an interesting day to say the least. On my drive to the hospital I rubbed my eye and my contact popped out, yes while driving! Thankfully I had rewetting drops in my purse so I was able to get it back in my eye (while stopped) but part of it had torn from the sides being stuck together but it hasn’t bothered me since I put it back in. While holding my contact on my finger I missed my exit because I was all flustered haha. I managed to get turned around and get to where I needed to go. I then get to the hospital and the regular parking garage is closed and it directed me to another parking garage. I had no idea where I was going. I parked and the elevator was not operational yet so I had to take the stairs. All I could think of was the way back is going to really suck. I walked all the way into the hospital/medical building huffing and puffing but I made it. I hate change!
I had to get checked in for lung functions (PFTs) and then went up to the second floor. I had to have a rapid covid test which was negative then was called back for my lung functions. While waiting on the covid results my nurse took all my vitals. My lung functions were actually up which surprised me. My FEV1 was 41%/1.13L. Last time they were 35%. Maybe it was all the huffing puffing I did walking in. haha. Then I went over to clinic and checked in.
First up was the nurse checking me into my room. Since all my vitals were already taken she just verified info. Next up was the pharmacist to go over all my medications and to make sure I didn’t have any questions or need any refills. Next up was the doctor. I complained about the weight gain from Trikafta (new CF drug I’ve been on for about 2.5 years), more to come later on that. He listened to me which I was wheezy and my throat was red which it’s been sore for a few days and one lymph node on my right is a little swollen. We decided to do a week of Augmentin and 20mg of Prednisone for a week as well. I will be stopping Fosamax which is once a week for osteoporosis since I have improved to osteopenia. He said there’s not much research of people being on it for longer than 5 years considering most people that take it are over 65 with brittle bones from age. So he wants me to stop it and we will recheck my bone density next year when I am due and see where I’m at. I’m still continuing my vitamin D and calcium as usual. Now onto my inhaled meds. I am increasing my inhaled Pulmicort (Budesonide) to 2 ampules twice a day from one twice a day. We are trying another inhaled med, Brovana, to see if it will help with my wheezing and tight chest. So if you are keeping track that means longer treatment times with more meds. I’m still doing Pulmozyme once a day as usual.
Next up was dietary. We discussed my weight gain from Trikafta. I will start using a calorie counting app to help me keep track of calories. Since I have CF and am not a normal healthy person it’s a bit different. I need 2800 calories to maintain my weight because they taken into count my lung function. With that said I will be trying to do 1500-1800 calories and we hope it will help me lose weight. Exercising is part of this. We finally have a treadmill again so I can walk once again. If you know me I hate exercising but it’s what I have to do. The extra weight doesn’t help my breathing so I’m hoping I can do this. It’s not going to be easy for me.
Next up was social work. Just talking the usual mental health stuff. I have to do a questionnaire that helps assess how I’m doing. My anxiety has been more since I started Trikafta so we are keeping an eye on that with my counseling and psych meds.
All in all not too bad of an appointment and got some issues worked out with my wheezing and sore throat and a game plan with my weight. Some may wonder why I’m so open about my life with CF. I talk about these issues to let others know they are not alone in this fight of CF and you normal healthy people are also not alone in the fight against weight gain/loss and mental health issues. I keep fighting everyday. Oh yeah my walk back to the car was brutal. Those stairs were not my friend at all. I now know that I should have parked on the second level and it goes right into where my clinic is. Yes I have a handicapped placard but it didn’t help me today, unfortunately. I will be seen in 3 months for a regular check up.
Until next time…
I know I haven’t updated in awhile but count that as a good thing this time. I did have a birthday. I turned 42 on February 1st. When I was born, the life expectancy was late teens. So to say that I am very proud to have turned 42 is an understatement. It hasn’t always been an easy road but I’ve kept pushing.
Since 2016, January is not an easy month for me with the anniversary of my mom’s passing. By the time my birthday comes I’m ready to be happy. It’s still a hard time without my mom because my mom wanted nothing but the best for me and was my biggest supporter. I keep fighting in her memory. She is greatly missed.
Now for a health update… I am doing well for the most part. The weight gain I have had from Trikafta is not fun but it is what it is and I have to endure it. I have been sleeping a lot. I take after my mom and grandma when it comes to being a night owl and sleeping late in the mornings. I have to get up to take my morning meds and do a breathing treatment but I have been laying back down when I’m done if I have nothing else to do. I have had some blah days mentally/emotionally. I do have SAD ( Seasonal Affective Disorder) or commonly known as the winter blues. It’s real and it sucks. I need sunshine…real vitamin D and warm temps. Granted here in Tennessee we don’t get crazy cold and lots of snow so I’m not complaining too much but I’m still ready for summer. I don’t miss midwest (KS/MO) winters what so ever.
I think that’s a good update for now. 😆 I have a CF clinic appointment in March, I’ll update after that.
Until next time…
Today was CF clinic day. I am seen every 3 months, so today was a regular check up. However, I have been wheezing more so it was good timing. They had me do my lung functions at home on my home spirometer. My FEV1 was 35% which is my baseline (average). If you are new here the 35% FEV1 means I am using 35% of my lungs to breath. Most healthy people are 100% or more. They checked all my vitals and they were all good except that I had gained some more weight. Usually that would be a good thing for a CFer but I have gained quite a bit over the last 2 years since starting the new CF drug Trikafta. So basically they aren’t concerned with my weight but I am. The extra weight doesn’t make my breathing any easier that’s for sure.
We spoke about all my meds and what changes we could make, if any to change. They are going to try and up my inhaled steroid Budesonide (Pulmicort) in hopes that it will help with my wheezing. I have been wheezing a lot and getting out of breath easily with activity. My oxygen sats are fine so oxygen is not the answer. I am thinking it is a combo of the extra weight and the weather changing. The season changes mess with me every time.
They drew labs while I was there to check my thyroid, iron and vitamin levels to see if any of that could be contributing to why I’m always tired and sleep a lot. They decided to do an oral antibiotic, Augmentin, for 2 weeks and a prednisone taper over a 10 days. Hoping that combo helps with my wheezing and rattling in my chest. I see them back in December for another 3 month check up.
Until next time…
My clinic RT (respiratory therapist) told me to send in lung functions once we got moved and settled. I did and they were down to 31% on my home spirometer, from 35% in clinic on the 10th. The nurse practitioner said I sounded wheezy when she listened to me at my clinic appointment on the 10th. I held off on starting prednisone hoping the wheeze would go away. Well after the move the wheeziness and chest tightness didn’t get any better. My nurse called me to ask if I wanted to start prednisone after she saw my lung functions and I said not yet. Yes I’m stubborn. haha. I waited a few days and called her back to take her up on her offer. I did a 60mg burst for day one and then 20mg everyday for a week. Tomorrow is my last dose thankfully. Prednisone is great for opening up the lungs among other things but not so nice on the mood. I try to be on my best behavior when I’m on it. haha. I am not wheezy and tight anymore, for the most part. I mean I still have crappy lungs so there’s that. That’s about it for now
Until next time…
Today was clinic day. It’s been about 6 weeks since I finished IVs. My lung function was 35%/.99L FEV1, which is basically the same as it was on my home spirometer last time I did them. All of that means that I am holding steady at 35% with no major decrease or increase in lung function. Everyone said I “looked great and healthy.” Sometimes I take that as “fat and tan,” haha. My weight is holding steady at XXX…yeah right I’m not telling you all that part because I’m not comfortable with my weight. Thanks to Trikafta I have gained at least 25-30 pounds, if that tells you anything, haha. I have been on Trikafta for about 18 months I think. I’ve lost count but I think December will be 2 years. I saw the nurse practitioner today. She said I did have a little wheeze and tightness in my bottom right lung. If it doesn’t go away with more airway clearance (the vest) then I will take prednisone. She said I’m sure you don’t want that right now with all you have going on. My response was “nope.” What she means by “all that I have going on” is that we are closing on our new house tomorrow so the moving and unpacking begins soon.
Everyone else (respiratory therapy, dietary, social worker and nurse) that I saw said I “looked great” as well. I’m telling you that having a tan helps trick them into thinking I am good to go. I really am feeling decent enough with all the packing and living amongst boxes going on. I am wheezy though which is annoying. It could partially be the weather since it has been humid since we have gotten some rain. I am scheduled for another check up in 3 months. Now hopefully I make it 3 months without having to call them for IVs.
Transplant talk: I am holding steady at 35% which means I am still too “healthy” for a lung transplant. I have to be under 30% FEV1 to start the testing again. With that said most CFers don’t get listed until they are around 25%. So it’s a good thing that I am holding steady but I’m kinda in limbo. I am in between being healthy and sick in a sense. Don’t get me wrong, I am not rushing my way to transplant because I want to get as much out of these lungs as I can. I know people that hung out in the 30%’s for awhile before declining to the listing percentage.
Now for a life update: We are moving to get closer to my husbands work. Right now his commute is about an hour each way, give or take. When we get moved he will be 15-20 min from work, give or take. Much better for him. The move doesn’t put me any further from my hospital/CF clinic. If the traffic is not bad it is actually about 5 minutes closer. On May 14th we had to put down one of our dogs, Squiggy (shih tzu/Lhasa apso mix). He was 13 years old. We rescued him 11 years ago. He wasn’t eating and not acting like himself so I took him to the vet. He was diagnosed with pancreatitis so he went to the vet everyday for a week for IV fluids and meds. He wasn’t getting any better so the doc took X-rays and did an ultrasound. The X-ray and ultrasound showed that he had a large pancreatic tumor pushing on everything, an enlarged liver, an enlarged heart with the sack around his heart having too much fluid. With his age and the size of the tumor and all the other things going on the best decision was to let him go. We didn’t want to put him through chemo at his age and keep him in pain. It was so hard losing our furbaby. He was our first furbaby. We still have Otis (shih tzu) who is 11 years old and has anemia (IMHA) and a slow progressing lymphoma, poor baby. We are hoping we have him for a long time to come. We aren’t treating the lymphoma since it is slow progressing and with his age plus he’s so small (11 pounds). We don’t want to put him through all that. So needless to say the 14th was a very hard day in this house. Otis is doing well now without his brother being around. It took him a few weeks. He was mopey but still eating, drinking and going for walks. Then about 2 weeks ago I lost my uncle who I was close to. It was a short battle with cancer, so it was rather quick. Cancer is stupid!!! I’m ready for good things to happen and no more death and hard stuff. Life sucks sometimes.
I think that brings you all up to date with me. I will update when there is something to update about.
Until next time…
May is Cystic Fibrosis Awareness Month. If you are friends with me on Facebook or Instagram you will be seeing a lot of CF awareness posts this month. I won’t flood my blog with them. Haha.
I’m aware of CF everyday, there’s no getting around it. I’m currently on IVs and prednisone for an exacerbation which means a CF infection. My lung pain that I was having is mostly gone thankfully. I will do lung functions on my home spirometer tomorrow and send them into my doctor. Hoping they are up some without the pain. Tomorrow night will be one week of IVs. I have one more week to go for a 14 day total round. I will be done with the prednisone tomorrow, I believe. Can’t remember, I take so many pills they all blend together. Haha.
If you have any questions about CF feel free to comment or email me at firstname.lastname@example.org.
Until next time…
I have been having back lung pain for 2 weeks so I called for a chest X-ray yesterday. I had a Telehealth with my CF doctor this afternoon. My X-ray was actually decent. With the pain, increased cough and more shortness of breath we decided that I will do IVs and a burst of Prednisone. I will be doing IV Cefapime every 8 hours. It is an IV push which takes 20 minutes which is nice. I will get started on them tomorrow at some point. I will go to the hospital to get my port accessed and labs drawn before I start so we have baseline levels tomorrow. The Prednisone is 60mg the first day and then 20mg everyday for a week. I’m just ready for the pain to be gone so hopefully this does the trick. Well of course to feel better is always the goal. I will do IVs for 2 weeks and we will reevaluate then to see if I need a third week or not. I will have a clinic appointment in about 6 weeks for a check up. Oh yeah, I did my home spirometer Sunday night and it showed that my FEV1 was 32% (lung function) which is down from when I was last seen in clinic which was 36%. I will send them another set of lung functions mid week to see how I’m doing after a week of IVs. I’ll keep you all updated when there is something to update about….haha.
Until next time…