Oops, life got to lifing and I forgot to update here! I need to update about my pre-transplant check from the beginning of September, so here goes…
First up was labs and chest x-ray, all were good to go. Next up, the 6 minute walk. I have to do the 6 minute walk every check up to make sure I’m oxygenating well and don’t need oxygen with exercise. All was good there as well! I was able to walk basically the same distance with no breaks which is the same as last check up in March. I did not need any supplemental oxygen during the walk, my oxygen saturation stayed at 98% or above the whole time. I’ve never really had an issue with keeping my oxygen up in general. The only time I need oxygen is when I’m having really bad asthma flares that send me into the hospital. Extra oxygen won’t help my scared crappy lungs if I don’t need it. Most people assume with 32% lung function needing oxygen is a given but it’s not.
Next up, lung functions and ABG (arterial blood gas). My FEV1 was 32%/.89L. Holding steady. My ABG was good as well. The ABG tests the level of oxygen, carbon dioxide and the pH in the arterial blood.
Final stop was to see the doctor in transplant clinic. Once again, all is good. haha. I’m holding steady which is good. A lot of people ask why I just can’t get new lungs now with how bad mine are. If it was that easy, I’d be all over it but it doesn’t work that way. The goal is to use up the lungs you were born with for everything they have to give before getting new ones. Just because I get new lungs doesn’t mean I won’t have CF anymore. My new lungs won’t genetically have CF but the rest of my body will. Therefore, I will still be dealing with all the other CF issues I have on top of trying to keep the new lungs healthy and trying to keep them happy in my body while being immune compromised from all the anti-rejection meds I will have to take.
You do basically trade one set of problems pre transplant for a different set of problems post transplant when it comes to the lung department. Then you are also dealing with all the side effects from the anti-rejection meds post transplant. So with that said, it is best to wait as long as possible to get new lungs. Getting a lung transplant isn’t a quick fix to having better lungs and breathing better. It’s a lot of work!
I go back in March for another 6 month check up. I see the neurosurgeon this week to discuss surgery options for “Pete” the peanut sized lesion/tumor in my L2-L3.
On top of that I am currently on IV antibiotics at home because I started having pleuritic pain (pleurisy) in my upper back about 10 days ago. It wasn’t getting any better and became more constant.
Pleurisy is when the pleura (two large, thin layers of tissue that separate your lung and chest wall) become inflamed. One pleural layer of tissue wraps around the outside of the lungs. The other pleural layer lines the inner chest wall. Between these two layer is a very small space (pleural space) that’s usually filled with a small amount of liquid. These layers act like two pieces of smooth satin gliding past each other, allowing your lungs to expand and contract when you breathe. If you have pleurisy, these tissues swell and become inflamed. As a result, the two layers of pleural lining rub against each other like two pieces of sandpaper. This causes pain when you breathe in and out. It’s constant sharp pain because you can’t take a break from breathing so that it won’t hurt. Coughing and sneezing are horrible.
The cause of pleurisy is usually an infection (viral or bacterial) and the solution is to treat the infection. I culture psuedomonas in my lungs all the time. We only treat it when it is causing issues like now. Otherwise, I’d be on antibiotics all the time and they would do anything. I’m very limited on what antibiotics I can use anyway.
Every appointment I have with my CF clinic, I give a sputum sample (cough something up into a specimen cup). They send it off to the lab to see what grows and to see what antibiotics should work to fight it. The pseudomonas will never go away at this point. I will always grow it because I can’t clear it all out of my lungs to have a clean slate in there. CF causes thick sticky mucus throughout the body but in the lungs it does a number. The mucus holds onto all the bugs and lets them have a party in there. I can’t cough out all the mucus, no they can’t go in and suck it all out either. My body is always going to produce the thick sticky mucus and hold onto whatever lives in my lungs. It’s just part of life with CF. When I get new lungs, the new lungs will be “clean” per se. They will not have the thick sticky CF mucus. The goal is to keep all the bugs out of the new lungs on top of making them happy to be living in a new body.
So now back to the antibiotics, I’m allergic to quite a few antibiotics so I’m unable to use those unless we were to go through a whole process of trying to desensitize me to whatever antibiotic. I’ve tried to desensitize to Vancomycin before. I tolerated to initial small doses but had a reaction with the first full dose.
When they test my sputum, they test lots of different antibiotics to see what should work to help fight the pseudomonas. Then, whatever my pseudomonas is sensitive to (as fas as antibiotics go) in the lab are what my options are to use. They test all antibiotics, not just the ones I can take. So the list gets narrowed down quickly on what we can use. I’m down to about 2-4 antibiotics that are on my “go to”/can take list as of now. With that said, no the pseudomonas will not go away. The goal with antibiotics is to make the worst of the symptoms go away or at least calm down.
I’m considered “end stage CF” (no that doesn’t mean I’m dying) with my low lung function, limited treatment options, limited activities (when it comes to breathing), etc. When you are labeled “end stage CF,” it just means you’re getting to the possibility of lung transplant sooner than you were. That is, if lung transplant is the route you choose to go. Not everyone choses lung transplant and that is ok.
So I don’t ever have an answer to the question, “when will you feel better?” I have no clue. It’s always a wait and see when taking antibiotics. Antibiotics don’t work like they used to for obviously because I’ve been taking antibiotics consistently for over 40 years. The bugs I grow (culture in my lungs) have learned to not respond to the antibiotics over time, which is why I change them up every time (well the ones I can use) to help them to continue to be options. There hasn’t be a new antibiotic on the market in a long time, so there are no new options to try. We just have to keep working with the ones we have and hope for the best. It is what it is, I can’t change where I’m at in my CF journey so I choose to not overthink and stress about it. I just keep living life even with the bumps in the road.
That’s the update for the last 2 months, or so. I’ll update when there is more to update. Thanks for hanging in until the end of the post…that is if you did make to the end. haha
Until next time…