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Ramjid11 karma

I'm not /u/Noonealex, but as a fellow CF patient who received a double lung transplant 4 years ago, I feel qualified to comment on long-term recovery.

Is it just a matter of healing up all the wounds and getting to grips with the medication?

It is just that, in the same way as becoming President of the United States is just a matter of winning enough votes and candidating in the first place.

You've seen the scar pictures OP posted? These are but a small glimpse of what went on underneath. Lung transplantation is an incredibly invasive procedure.

Just to gain access to your lungs, surgeons have to cut through skin, nerves, blood vessels and multiple layers of chest musculature just to reach your ribs and your sternum. Next your sternum itself will be cut in half, then large retractors will be inserted both at the top and bottom of that cut. With a bit of mechanical force and at the expense of a few broken ribs usually, your chest opens like a clamshell. In fact, google for "clamshell thoracotomy" or "clamshell incision" if you need graphic examples of this, but be warned that it isn't a pretty sight.

Still, healing itself can be surprisingly quick unless there are complications. It takes but a few days until your skin has sealed and those staples can be removed. A few weeks until your muscle fibers have healed and a few months at most until both your sternum your broken ribs have fused. 6 months after surgery all structural damage should be healed completely.

The lung itself may take a few months to "settle" in its new habitat as well. Mostly because at first your chest is so beat up from surgery that even if you didn't mind the pain, you can't fully inhale and thus can't use those lungs to their full potential. And by the time you need a lung transplant, you'll probably have forgotten how to take really deep breathes anyway. So once your chest has healed up, you'll have to train your chest muscles and your breathing patterns before your new lungs reach their full capacity.

All this assuming you don't have any complications. But even the most healtiest of persons can expect some complications after a procedure such as this. Yet those who require a lung transplant aren't the healthiest of patients in the first place - quite the opposite. In many cases just survivng long enough to find a matching donor is a challenge in itself and complications of some kind are almost guaranteed. They may be small and insignificant, they may be severe and life-threatening.

Even though skin, muscles and bones all just need a bit of rest, a bit of luck and a few stitches/staples/screws to heal and your wounds should be healed up within a few months, most transplant centers will tell you that recovery after lung transplant takes 2 years.

The thing is, your immune system is a real weirdo. It doesn't like having strangers around and it can't be argued with. If it doesn't like something, it attacks. So initially you pretty much just beat your own immune system into submission by taking massive amounts of immunosuppressive drugs.

After a while you slowly reduce those drugs, carefully watching how your immune system reacts. If it remains calm, you pat it on the back by lowering the dose of those anti-rejection meds. If it starts to act up, you give it another beating.

It shouldn't surprise anybody that you and your immune system will never be able to trust each other again after a few months of doing this. It'll never forget those beatings, you'll never forget who tried to kill your beautiful new lungs. But after two years the two of you will reach a sort of cease fire.

Well, not really. You just establish a military occupation and drop a few bombs every time your immune system dares to protest. If you're lucky your bombs cause only minor collateral damage and your immune system backs down for a while. If you aren't, you've bombed nothing but civilians and your immune system is more angry than ever.

My point: "getting to grips with the medication" may sound easy and straight forward, but it isn't. Immunosuppression to avoid organ rejection after lung transplant is pretty much like occupying a foreign country: it is hard accomplish at first, gets a bit easier over time but becomes almost impossible to sustain in the long term.

EDIT I forgot to adress limitations...

And besides taking meds and being careful of your surroundings are there going to be any limits on your activities?

Yes, there are some. Extreme changes in pressure are one thing that can cause structural damage to your new lungs, especially to those sutures where they attach to your main bronchi. So no scuba diving or sky diving and probably no space travel either.

Sudden physical exercise is another thing to avoid. Due to severed nerves, your brain can no longer tell your heart to beat faster/slower. So your heart has to rely on hormon cues in your blood instead of nerve signals from your brain to adjust its rate, requiring more time to "ramp up" during exercise and more time to "ramp down" during rest. So if you suddenly go all (physically) crazy, your heart just won't react as fast and you'll end up exhausted no matter how well trained you are. Just as your heart will keep pumping at full speed even some time after you've stopped exercising.

Coughing is another limitation. Our airways are covered with small "hairs" that detect any foreign particles and cause a coughing reflex to get rid of such intruders. Transplanted lungs have those "hairs" as well, but when they're irritated they can't communicate that to the rest of your body. You no longer feel the urge to cough if your lungs are congested, you in fact don't even feel that they're congested in the first place until mucus reaches your trachea. So you have to consciously cough if you suspect there may be something clogging up your airways.

Ramjid5 karma

Adult CF patient here.

I have never seen any comment disparaging the work of a nurse (...)

I don't know about the wider public, but if you get a chance to talk to one of us (chronically ill patients) in private, you'll soon realize that for every story about an amazing nurse, we have at least 5 stories about horrible nurses. Not to mention all those mediocre ones we just don't remember. Most of us learn quickly not to say so in the presence of another nurse, but trust me: we're painfully aware of how many bad nurses are out there. And just as an amazing nurse will often leave a lasting impression, being at the mercy of a horrible nurse can be truly traumatic and will leave its mark as well.

Don't pay heed to the bullshit aobut all nurses just wanting to help and doctors all driving around in porsches and not giving a shit. Your patients (people like me) can tell when someone's genuinely caring and when someone is just doing their job. And most of all we notice when someone doesn't care at all; no matter if it is nurse or doctor.

(...) but doctors always seem quick to be criticised on this site.

Again, I don't know about all of reddit, but I do know a few fellow patients and myself. And I can assure you, we appreciate a good doctor just as much as a good nurse.

But while we'll encounter a huge number of nurses during the years, we'll meet far less doctors. So numbers alone dictate that an exceptional doctor is more rare and therefore memorable than an exceptional nurse.

But there is another catch:

If a nurse messes up, usually she'll "just" ruin my day. But that's it, I'll just try to ignore or avoid her next time and eventually forget her.

If one of you doctors turns out to be incompetent or an asshole, it won't just ruin much my day. At the very least it'll damage my trust in that particular doctor, affecting every future interaction, every medical advice given and every treatmet prescribed by that doctor. Which is quite the catch if you're a chronically ill patient and doing treatment/therapy or interacting with healthcare professionals is a large part of your daily routine.

So even if a doctor makes the exact same mistake as a nurse or is rude and offensive in the same manner, such a behaviour coming from a doctor will affect me much longer and much more severely, so naturally I won't forget quite so quickly.

On the bright side: If I encounter a good nurse, he or she might make my day. Quite important especially if my day has been horrible until then.

But if I end up in the care of a good doctor, that may very well save my life. Or at least change it for the better. And not just in medical terms. I can't really put in words how much of a difference a confident, considerate and caring doctor can make, regardless of any medical stuff. Of course this doesn't happen as often as a nurse makes someone's day.

Anyway, I'm sure many doctors would gladly trade a little less social status for more actual gratitude, just like nurses probably trade a bit of increased social status for a little less "thanks". Neither of those professions are treated fairly I guess.

As a doctor just finished work on a respiratory unit, what can I do to make you say I've had an 'amazing mark' on a patient's life?

Looking at what doctors impressed me the most, the best doctors I met were both confident and honest.

Whenever they give medical advise or just offer their personal opinion on something, they does so not with authority but with full conviction and zero hesitation. And if they do have reasonable doubts, they say so straight away and try to explain why.

As a chronically ill patient we quite often find ourselves between a rock and a very hard place. We have to make pretty hard decisions regarding our own treatment without any medical expertise to go on. We're dependant on the advise you doctors give and we need to trust your judgement anyway. Of course we all know that doctors aren't infallible and we don't expect you to pretend otherwise. But imagine a commander sending his squad of young, forced conscripts into battle saying "we probably should've waited for air support... ah, too late for that. We could flank the enemy... or maybe try an ambush? What is your opinion, guys?" Not very helpful at all, on the contrary. That isn't _honesty but incompetence.

Among the most memorable bad experiences with a doctor was this: I went to a young specialist after suffering from yet another severe lung infection and too weak to even walk. I was in the process of getting listed for a bilaterl lung transplant, so everybody knew that I wasn't doing great. The young doctor glanced at my file completely indifferent and told me: "Not feeling great, are you?" No shit. "Ah, you probably need an antibiotic. Let's see... penicilin: resistant, oxacilin: resistant, vancomycin: resistant... which antibiotic do you want to take?" If you ever want to tell a patient that you absolutely no clue and don't even care or that you've practically given up on him already, say this.

Among the best experiences was probably this episode: I just had a bilateral lung transplant and was still in ICU. I had four large drainage tubes sticking out my chest, was in incredible pain and could barely breathe. The nurses all were incredibly compassionate but just looked at me with sad eyes and told me there was nothing they could do and that I would just have to endure it. The surgeons in charge just looked at my vitals and told me that "everything is fine". Only to walk over to a nurse and ask her what all the fuss was about. Then they explained that they could give me more pain medication, but it probably wouldn't work and left in a hurry. All the while I was in so much pain that I needed every last bit of concentration and energy just to force myself to keep breathing. Pure, primal agony.

Finally an anesthesiologist arrived. He actually sat down beside me, not just standing in the doorway. In fact he seemed to be the first person in the entire ICU who wasn't either in a rush or somehow constantly alarmed. He was calm without being indifferent. He asked me about the kind of pain I was suffering and then explained in very precise terms not just why I had such pain but also what he would do to stop it.

He wasn't just confident that he could manage my pain: he gave me every reason to believe him. He realized that I was in no position to discuss all the intricacies of post-surgery pain medication. So he made a professional choice, told me what he wanted to do and just asked for my permission. All I had to do was to nod.

After he left I felt like a drowning person that is being pulled back up. The pain was probably still the same, for the nurse with the morpine pump would arrive much later. But just knowing that something was being done about it, knowing that this was perfectly normal and trusting in the person who told me so made all the difference in the world. For the first time since I woke up from surgery I had a feeling that things might turn out okay. Other doctors had told me that everything would be alright and that pain was to be expected before, but none of them had put any effort into these words or truly believed them in the first place.

Yeah, a long story. My point: part of being an amazing doctor is acting in a way that patients don't just need to trust you but acutally want to trust you, even have to trust you. And being mindful of the responsibility that comes with such trust.

Ramjid4 karma

I went over your comment quite carefully; thank you for taking the time to write that. A lot of it was useful to read as someone who's in the medical field, particularly for someone just fresh to it like myself.

I've talked to aspiring young doctors before about my experiences in the ICU in particular and as a chronically ill patient in general. Most doctors (or nurses for that matter) have never been on the other side of that equation, have never been in a hospital as a patient.

In some fields of medicine I think you can become a decent doctor without caring much for your patients. My transplant surgeon for example saw me but once after surgery and didn't appear particularly compassionate or caring at all. Yet he did a hell of a job on me and I'd certainly consider him a good surgeon. But I can only wonder what an amazing doctor he could've made if he had actually talked to me in the same manner as that anesthesiologist did. He surely didn't lack confidence, he simply didn't care to communicate this.

Which is totally fine. Not every doctor has to be a great doctor and different people value different qualities at different pionts in time. I'm sure some of his patients appreciate him much more and would name him as an example of an amazing doctor. For all I know that anesthesiologist I am so fond of might have gotten arrested for criminal negelct a year later, but at that moment in time he was exactly what I needed and left a lasting impression. Timing is important as well, I guess.

I'm sorry you've had such a rough time of it, I met lots of chronic respiratory patients at my last job and all the empathy in the world couldn't allow me to fathom how incredibly hard, and constantly taxing, a journey it must be.

It wasn't fun, that much is for certain. But hey, I got a double lung transplant - you can't expect that to be fun, can you? ;)

As for chronic respiratory issues, CF patients like me usually have the advantage of growing up with all this. Treatment and therapy and the limitations they bring are part of our daily life and become normal. We gradually declining over the span of a decade or more and have plenty of time to adapt. This brings some unique challenges as well, but whenever I was in hospital, I always found the older guys (40+) had a much harder time dealing with the realities of respiratory insufficency, the treatments and all that. Not that I wouldn't give anything to change places with a 60-year old guy who is able to spend most of his life without a worry in the world until his smoking habit catches up with him. Well, at least that is how I imagine it to be, deep down I know that even healthy people got their problems...

I hope those new lungs are working out for you well!

They work splendidly, far better than my own ever did! And they've done so for 5 years now, six more months and I might out-live yet another life expectancy chart. So far no sign of rejection, 110% FEV1 (prior to transplant it was ~16%) and all I have to do is take a few pills every day and go to my biannual follow-ups. It feels like I've suddenly won the medical equivalent of a billion-dollar-jackpot after spending 24 years in ever-increasing poverty. Surreal in a positive way.

On an unrelated note, I have quite a few friends and lots of relatives in the medical profession myself and appreciate just how difficult being a doctor can be. Not just here on reddit.

An extreme example are doctors who deal with cases like mine.

My CF doctor just retired. He first saw me as a toddler directly after I was diagnosed and has been my primary doctor for almost 30 years now. He is a pediatrician by trade and headed a rather large CF clinic, so he spent his entire career caring for CF patients like me.

Which means that he decided early on to care for kids that only got sicker with every year that he treated them, kids he knew he couldn't save. All he could hope to achieve was to slow down the inevitable decline. Even oncologists at least sometimes win, he dedicated his life to a fight he knew he would loose in every case.

And yet he accepted this responsibility. Where most doctors don't really get to know you (either by circumstance or by choice), being a pediatrician he'd treat most of us pretty much from beginning to end. He saw grow up, treated me all through my childhood and youth, watched me slowly decline as a young adult and finally sat down with me to suggest a transplant when he saw no other option left. In my case that worked out well (so far), but I'm but one of dozens, hundreds of similar cases he had over the years. And when he started out, there wasn't such a thing as a double lung transplant and the vast majority of his patients wouldn't survive childhood. Still, he didn't grow cynical (at least not towards us), never seemed desperate (I'm sure he sometimes was) and always managed to instill a sense of confidence and hope in us.

As far as I see it, no paycheck in the world and no amount of social status will compensate for some the things doctors like him do. I'm sure he doesn't get half of the thank you's some nurses get and many of his younger patients probably hate him by the simple virtue of him being the guy sending them to hospital or wielding the syringe - I know I did. But I hope my description of him gives you a glimpse of how much of a mark he left on me and my entire family.

Ramjid3 karma

No need for that, in many ways writing these comments is a way of processing my own experiences.

I spent far too much time drafting this stuff, but it feels nice to put my knowledge/experience to some use - all this isn't really of much use in real-life, most people don't have to worry about chronic rejection, side-effects of immunosuppression or how painful it gets to only sleep on your back for weeks.

Ramjid3 karma

Haha, I guess I had that one coming ;) English is not my mother tongue, in no way I wanted to downplay the procedure nor recovery!

I didn't think so, I just had a rather painful recovery early on and it didn't strike me as just healing up - even though it was actually comforting to look at my chest and see all those staples. It showed me that the pain I was experiencing had a perfectly innocent explanation and wasn't cause for greater concern. I got really paranoid after I had just survived lung transplant surgery and felt so much pain that I could hardly breathe. Reminding myself that my entire chest had just been cut in half helped me put that pain in perspective - indeed it was simply natural to be in some pain.

Incredible when you think about it. About a year ago I broke my lower leg pretty badly and had a piece of shinbone sticking out. Now a year later and quite a few pieces of metal richer I really cannot tell it was once broken (except when you feel around for the screws or the weather is really cold). The human body is amazing.

Incredible indeed, I agree. I went on a bike trip just 6 month after transplant - 300km of cycling in less than a week, I hadn't even been able to cycle for half an hour without collapsing from exhaustion or being forced to stop and cough every few minutes. To think that I went from barely surviving and opened up like a clam to more healthy than ever in that short period of time still amazes me!

So these nerves are severed as part of the transplant it self?

To be honest, I just had to research that myself. As it turns out it isn't required that those nerves regulating your heart rate (the vagus nerve to be precise) are cut during lung transplant. It just is a very common byproduct, especially if a cardiopulmonary bypass (heart-lung-machine) is required. Surgeons often need to act fast and decisive, they can't always afford to spend time and effort sparing that nerve when survival itself is at stake.