so what’s this lung transplant business all about?

by kaleidegirl

when someone finds out i am on the waiting list for a lung transplant nearly every person asks some version of the same question. “when is the surgery?”

i have absolutely zero control over this. well technically i can refuse the lungs when they call but why would i go through all this and then do that? so yeah. no one at U of M can even guess at how long i might wait. some people get the call within hours of being listed, some people never get the call. several factors are involved in this. things have to match up perfectly in your area and your LAS (lung allocation score) determines your spot in line if more than one person matches a particular set of lungs. the factors i know of are blood type and body size, like height. for example, my blood type is B+ and that has to match and the height range for lungs for me is 5’3″ to 5’7″ and my LAS is 35, slightly above average for U of M i am told. i think LAS scores go up to 100. my blood type is rare and from what i understand this could work in my favor or possibly against me. on the one hand less people are a match but also less donors are available. i hope all of this makes sense. i hope i am not giving any incorrect information. this is how i understand these things. i am learning new things all the time.

as for the surgery itself. wow. it is a very complicated procedure. more so than any other transplant unfortunately. i am sure i could google videos of the actual surgery but the DVD that U of M gave me was plenty for me. it didn’t show the actual procedure but did show what to expect during recovery. well some things. it explained the things i really needed to be prepared for like all the chest tubes and getting up and walking and using my new lungs right away. like literally usually the day after you are off the ventilator they have you up and walking with all your tubes and wires and the things they are connected to rolling with you on poles and in a wheelchair in front of you. like the chest tubes are draining into these boxes and they go with you until they are taken away. i am on the list for a double lung transplant. i will be put on a ventilator and they will replace my lungs one at a time and then i will be in ICU for at least a couple days, usually taken off the ventilator after about a day, then will be moved to a step down unit for maybe two weeks. honestly the time frames for these things is totally dependent on how well i am recovering. some people do really well and get home pretty quickly and others might have problems and be in the hospital for months.

obviously recovery doesn’t end in the hospital. they require you to have 24/7 care for a certain amount of time once you are home. for a good while i won’t be able to lift anything heavier than a gallon of milk. i will have a scar from the surgery, i think the most common for a double is what they call a clam shell incision which would be an incision all the way across my chest. i will be on several anti-rejection meds. for the rest of my life. these meds suppress your immune system so that your body doesn’t fight this foreign thing in your body. so it doesn’t reject it. they say if you make it through the first year without rejection then you will do better than those who get it right away. there is acute rejection, like a flare up that can be cleared up and then there is chronic rejection that often leads people to getting a second transplant. i had no idea that was a thing. anyway. so then we get into how dramatically my life continues to change. a common explanation for this is that you are trading one set of problems for another. i am already on one immunosuppressant drug so i already have to be careful of sick people but after the transplant i will be on at least three so i will have to be super careful. i will need to wear a mask in large groups of people or when in close quarters with strangers, like if i’m on a bus or a plane. i will also have to be very careful when it comes to allergens, like mold and birds and such. these things can make me very sick. no more feather pillows or blankets. well that is already a thing because one aspect of my lung disease is due to the birds we owned for 8 years. i am already avoiding buffets, which isn’t really an issue. i’m not worried about buffet style meals with family. i will have to have my steak and burgers well done, no mushrooms i think and no raw fish. so no more sushi which means i eat that every chance i get until they tell me i can’t. now i have not been told to avoid these things by any dr right now. i have learned all of this from the support group i follow on FB. such a wealth of information. every center is different so my drs have the final say on anything but it helps to have a place to ask questions to be sure i know all the questions to ask said drs. there will be many things i have to avoid, i will be educated on this and have a list when the time comes.

so that is i think most of what i know about this whole process.

i am still learning more about my diagnoses. i know that i have pulmonary fibrosis which is lung scarring. this is irreversible but can be slowed down or even halted altogether? i’m not sure about that. i also know that i have Hypersensitivy Pnemonitis which is due to the antigens from the two cockatiels we had. the diagnosis on my letter of acceptance on the transplant list is NSIP, non-specific interstitial pneumonia. there isn’t much information online at all about NSIP. it can be linked to some kinds of autoimmune disorders which i believe i have tested positive for from what i am told but i think that is still being figured out. i need to get more information now that i have tested positive twice out of three times. it is also associated with the Hypersensitivity Pnuemonitis. so while it most definitely was bad for me, i did not cause this with my smoking. i was never told that i did but i smoked for a long time and i felt like a right idiot for it when all this came about. i mean i know it was a horrible habit and should have never picked it up but the shame i felt thinking i had done this to myself so stupidly was just awful. i still feel like an idiot but knowing that the only other thing i maybe could have done to at least delay this is never own birds. really though there is no way to know. i should have never smoked but that isn’t what is killing me right now and that helps me live with myself a little better.

so going forward. i take my meds, prednisone at least for now. she is tapering that down, i’m down to 7.5 mgs and i imagine if possible she will continue tapering until i am able to stop taking it. steroids wreak havoc on your body and we already know i will be on at least a low dose again after transplant and for the rest of my life. i take the immunosuppresant and two antibiotics. the antibiotics are a preventative measure because of my compromised immune system.i’m a lot of meds. any health issue i have has to be dealt with so that i am healthy as possible in any way i can be. right down to mild allergies. so far i have done well since June. aside from the lack of sleep. i’m slowly getting my weight down and i MUST keep it at or below 192 or i will be taken off the transplant list. so no pressure or anything. ha! i’m not ok with being this overweight anyway but the meds cause weight gain. gah! i will see my transplant dr every three months. the day of those follow up appts i go for breathing and walk tests. these tests show progress or decline and let my dr know how i’m doing and also determine any changes in my LAS. now that my carpal tunnel is managed i can go back to pulmonary rehab and that will really help keep my strength up and help me get my weight down.

this is my life. this is what’s going on with my lungs.