My body is rebelling yet again

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Last Monday sharp pain started on the right side on the front of my chest. I carried on with my transplant appointments on Tuesday. The pain got worse as the week went on. I powered through our very busy weekend with friends in town. Sunday morning I sent the “white flag” message into my CF clinic diagnosing myself with pleurisy and asked for antibiotics and prednisone. Ya know, if I had my own Rx pad it would save me a lot of time sending messages to my CF team and at the doctor’s office for appointments. Pleurisy is inflammation of the area (pleural space) that separates the lungs and chest wall. The pleural space is usually filled with a satiny liquid that allows your lungs to expand when you breathe. If that liquid is not there and there is inflammation/swelling, they rub together like sand paper that causes pain when breathing. Since I can’t take a break from breathing, the pain is always there until the pleurisy resolves. The pleuritic pain is sharp/stabbing pain with deep breaths, coughing (ouch) and sneezing (double ouch). 10/10 would NOT recommend!! Treatment for pleurisy is pain control and treat any underlying infections that may be the cause.

My nurse called me this morning to tell me she wasn’t ignoring me but that she was trying to figure out who could see me because my doctor was cruising somewhere in the pacific at the moment. Of course he is. It never fails, when I actually need to be seen because of an exacerbation (actively sick) or end up in the hospital he is on vacation. haha. She said she did hear crackling in both lungs.

One of the nurse practitioners was able to see me this afternoon. We decided that I’ll do 14 days of IV antibiotics (Zosyn 4.5g every 6 hours) and a prednisone. I’ll get labs drawn each Monday until finished with IV course. We go to Cancun VERY soon so this will get me 14 days of antibiotics in my system with a few days between finishing and leaving for Mexico. It seems like this is par for the course when it comes to my body not playing by the rules, especially when I have a vacation in the very near future that I’m trying not to sick for and not be miserable for.

Update on the burning in my leg: My left thigh (femur) has had a burning sensation since I received the Reclast (osteoporosis med) infusion December 11th. Most reactions to Relcast present in the hip or jaw and for the most part resolve in about 2 weeks. I apparently like to be in the “less than 1%” club when it comes to side effects. Once again my body likes to keep my medical team on its toes. I did get a X-ray of my left thigh, it showed NO abnormalities as expected. Next step is a MRI which I’m waiting to hear when that is scheduled for. They are checking for avascular necrosis which is the death of bone tissue due to lack of blood supply. Common causes of AVN is extended use of high dose steroids, extended excessive amounts of alcohol consumption and long term use of bisphosphates (like Reclast, Prolix and Fosamax). I have taken high doses of steroids but not extended use. I’m not a drinker. I took Fosamax for the recommended 5 years and only had 1 infusion of the Reclast. So who knows where this pain is truly coming from. I would just like it to stop or at least be controlled and be more tolerable. It is so uncomfortable sometimes that I can’t sit still be I need to be moving (which is not ideal when in the car) so that I’m not thinking about it 100% of the time. So we shall see what comes of the MRI.

Until next time…

6 Month Transplant Check Up

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I had my 6 month check up for pre transplant today. First stop was labs. I only needed 2 tubes drawn which is nothing compared to past appointments and she got it with one stick which is nice Next up, chest X-ray. Labs were all within normal limits. Chest X-ray was unchanged. It noted my usual bronciectasis in upper lobes and scarring throughout.

The 6 minute walk was next on the schedule. I did well. I walked 1,176 feet with no breaks and maintained 98% oxygen. At my last appointment (6 months ago) I walked 1,023 feet with no breaks. I don’t remember what my sats were last time but I didn’t need supplemental oxygen during the walk.

Next up, spirometry and an ABG (arterial blood gas). My fev1 was 32%/.90L. My numbers were the same as last time. ABG measures the balance of oxygen and carbon dioxide in your blood. It is a little needle stuck in your artery on your wrist. They are no fun. With that said, my ABG was all good after 2 tries, ouch.

Final stop, see the doctor. He noted rattles and wheezing in my right lower lobe. Things haven’t really changed in the last 6 months. Just keep doing what I’m doing. I’ll take maintaining and being steady. I go back in 6 months for another check up. I’ll continue seeing them every 6 months to keep all my testing up to date. Seeing them every 6 months is more of having a back up plan if I were to have a rapid decline and need to be listed for transplant quickly. If I didn’t maintain all of the pre transplant testing we would be playing catch up when needing to be listed comes.

Thank you for all your love and support! It is greatly appreciated.

Until next time…

CF Clinic day

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Today was clinic day which are long days but I’m used to it. I’m a professional waiter after all these years of all day or half day appointments. First stop is always pulmonary lab to do lung functions. Today my FEV1 was .87L/32%. The last time I was in clinic in October, they were 34%. My last home spirometry in January, they were 30% which was during a time of a lot of tightness and shortness of breath. They are basically steady. I’ll take it.

Next stop is clinic for the parade of people…nurse, pharmacist, PA (physician assistant), social worker, dietitian, PT and finally the doctor. My blood pressure has been running on the higher end of normal for a while, today it was ok. My weight is down 2 pounds which I’ll take!!! Apparently their height measuring equipment is off because according to them I have shrunk about a half inch. I’m not old enough to be shrinking already! haha. I am going to start taking Yupelri (Revefenacin) which is an inhaled COPD med. Yupelri is a long-acting bronchodilator that basically is supposed to open the bronchial tubes and increase the air flow. It is NOT a quick acting med like albuterol which you take for tightness and wheezing with asthma.

I’ve been getting random bruises without bumping into anything because my body likes to be difficult. I am getting more labs drawn in March when I get my port flushed because it’s much easier to draw them while I’m accessed for the monthly port flush than get stuck in my hand which is the only place left to go. We will be looking at blood counts, anemia markers, vitamin levels, B12 among some other things.

I’ve still have intermittent burning in my left thigh since getting the recast infusion mid December. There is a section of the outside of my left thigh that is numb as well. They are thinking the numbness and burning are an indication of a nerve problem, possibly sciatica. My CF doctor messaged my primary doctor to ask her thoughts on the numbers and burning sensation in my thigh. I now have an appointment with my primary doctor next week to discuss that. Needless to say, recast is now on my “allergy” list because of the side effects. I asked about Prolia, another osteoporosis infusion med, as another option. The pharmacist said she doesn’t want to do that just yet because once you stop it you lose all your gains in bone growth and I can’t be on it forever. There’s just not a lot of research on osteoporosis in pre-menopausal women needing bisphosphates (osteoporosis meds). As per my usual, my body doesn’t play by the rules and keeps my doctors and care team on their toes and tests their diagnostic/treatment skills. We have time to do more research and get a plan in place because my next infusion is not until December.

Before we started talking all things CF my doctor asked how things were going outside of CF and if we had any fun trips planned. I said, “well yes we do have a fun trip to Cancun coming up.” He said, “do you need anything for that trip?” I said, “like what?” He said, “well I was thinking a script for antibiotics and prednisone in case you were to get sick and need it while in Mexico.” Well of course I need that!! Done and done! I love that guy for planning ahead!

All in all it was a decent appointment. I have another appointment in 3 months for a regular check up. We shall see what my labs show and if they give any answers. I also have transplant clinic in March so I have to look forward to. Taking of me is a full-time job. I just wish it paid better!

Until next time…

Trikafta…4ish Years Later

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I have many friends that have benefited so much from Trikafta with an increase in lung function and a better quality of life. I’m so happy for them! Many have even been able to stop doing breathing treatments. Many call Trikafta a “miracle drug” because of the changes in quality of life. I know for many it is a miracle just in the way they feel. With all the good things that have come with Trikafta there are also not so great side effects in regard to the mental health side effects of things. Many say they will deal with the mental health side effects of it because they have a better quality of life in the physical aspect.

As you know, I haven’t gained any lung function since starting Trikafta in November of 2020, I think that’s when I started it. haha. I didn’t have high expectations when I started it because I knew that I have a lot of scarring and damage in my lungs. I had/have between 30-35% lung function which isn’t great. If taking Trikafta helped me maintain 30-35% lung function for longer which would hopefully put off lung transplant for longer then it was going to be worth it. Also, my really bad asthma doesn’t help the state of my lungs as it is. No, I’m not upset that I didn’t gain any lung function. It is what it is. Just like everything in life, things go differently for everyone. You can’t compare other people’s lives or experiences to your life. It will always be your own journey no matter what. Even if you emulate others, it won’t be the same outcome.

I have CF friends that were able to stop breathing treatments because of Trikafta. Unfortunately, some were hit with viruses that went to their lungs and they needed to restart breathing treatments to get relief to get over the virus. Obviously, they are not very happy about needing to do breathing treatments again. I told my husband the other night that I feel like it’s a blessing in disguise that I’ve had to continue all my breathing treatments because I don’t know what’s it’s like to not do breathing treatments (except for when I was little, which of course I don’t remember) so I can’t get mad at having to restart them. It’s just a part of my life. I can’t miss the extra hours gained in a day not doing treatments if I never gained those hours. It would be weird to me to not do breathing treatments honestly. I know with my bad asthma, not doing breathing treatments is out of the question anyway. Plus I feel like even if I’m having a “decent” breathing day (can’t remember the last time that was the case though) they are a part of my regular maintenance, so to speak. Of course, after transplant I hope I will be able to stop breathing treatments or at least decrease the frequency of treatments at some point which will be fantastic!

I also have many CF friends that were transplanted around the time Trikafta was approved. They have a whole different set of emotions regarding Trikafta. They will always wonder if Trikafta would have helped them gain lung function or if it would have helped stabilize them for a longer period of time putting transplant off. Many are a little bitter that Trikafta was approved and they never had a chance to take it. Things happened the way they did and you can’t change the past. There’s no reason to dwell on things you have no control over. I absolutely know that that is easier said than done but you lose precious time worrying about things you have no control over. You need to use the time you’re given wisely and don’t miss out on time with those close to you. You can’t live in the “what if” mind set.

I believe things happen for a reason, even if it’s because of your bad decisions. Life happens. It has ups and downs. Make the best of it.

I decided to share my point of view because I’ve had conversations with multiple CF friends, pre and post transplant, regarding Trikafta recently. We are all in this life together no matter where we are on our CF journey. You got this y’all!!

Until next time…

Another year down…many more to go!

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I made it another year! Today I turn 44!! As you know, I’m not like most women, I actually LOVE my birthday and getting older. Growing up I tried not to think about the life expectancy number because I chose to live my life to the fullest and get the most out of life. I never wanted to miss out on things because I was consumed with “having a timeline” on my life. I want to run out of time to do all the things versus waiting for end to come.

Every day isn’t all rainbows and sunshine by any means. There are plenty of days that I keep myself busy doing random stuff because I can still do them. I know there will come a day when I’m going to be much more limited in what I’m able to do. When people say I don’t know how you do as much as you do with 32% lung function. My response is always that I take LOTS of breaks to get accomplished what I do and I want to do all the things I can now because one day I won’t be able to do them, that’s just the reality. There are days when I’m limited on what I can do because I get short of breath so easy. It pays off having days where I’m productive so that on the days I’m not feeling great I am “ok” with not doing much/anything. I have a hard time with feeling less than when I can’t do all the things I want to do. I have learned that I have to adapt to what my lungs allow and that isn’t easy. I give myself lots of pep talks. haha

I say all of that to say, be thankful you are still alive and kicking, even if you have limitations. Many people would gladly take your limitations because theirs are hard to bare some days. Enjoy the breath you have, even if it’s crappy like mine. haha

Until next time…