Dealing with potential lung issues: How NOT to do it. And… How. It’s. Done.

At my last ALS clinic appointment in November the doctor suggested that my sleeping problems could be related to breathing/lung issues. She recommended I see a lung specialist to find out if that was the case and if I might need a breathing mask. Luckily that ALS clinic is part of the Charit√©, the large Berlin university hospital, where they have lung specialists, of course. One might have to wait several months for an appointment but surely a call from the ALS clinic… will make no difference whatsoever. My appointment was over 2 months later on February 10.
Imagine my surprise when my appointment was… with a nurse! Again, nurses are great but when I’ve waited over 2 months for an appointment with a “lung specialist” to discuss potential lung/breathing issues related to ALS… what can I say, I expected a doctor. But I got this nurse and she was very confident. At the time I had a cough left over from a cold, which got worse with emotional stress and talking. So it was pretty bad that day. She immediately “diagnosed” it: “This can only mean that saliva and probably food and drinks too are constantly getting into your lungs, which will eventually cause pneunomia.” Oh. She needed surprisingly few tests to make very detailed and dire predictions. She only checked my lung volume using the exact same small portable device they have at the ALS clinic. And she took a drop of blood from my earlobe for a blood gas analysis. One of the BGA values seemed to indicate that I might not always be able to fully exhale all the CO2. All my other results where within normal range. So she looked at me with kind concern and said: “You clearly have serious lung issues and should check into the hospital as soon as possible for one or two weeks so we can give you a breathing mask. Be aware though that breathing masks often don’t work for ALS patients, in which case your only other option would be a tracheotomy. And while you’re here, we can also give you a feeding tube, might as well, you will need it eventually anyway.” I would like to add that at that point my weight had been stable at 53kg for months and I was having no trouble chewing and swallowing whatsoever. But… wow.
I like to think I’m pretty smart and level-headed and I was soon able to see this appointment for what it was: A sales pitch, in which this nurse irresponsibly used scare tactics to get me to come to her hospital as an in-patient. My rather good medical insurance may or may not have played a part in this. But despite this realisation I was totally freaked out. Scared. And it took all my other doctors and therapists to talk me down. My new neurologist was especially helpful: He was absolutely irate and said no responsible doctor would give me a feeding tube when I clearly didn’t need it. And if I was having CO2 related breathing issues I would sleep better, not worse. So a breathing mask would be totally unnecessary at this point and why on earth she would mention a tracheotomy was beyond him. And we never talked about my cough because I wasn’t coughing any more. So I guess I don’t have to worry about pneumonia either. Phew.
You know, writing about this appointment with the lung specialist nurse from hell has upset me (and my mom who is typing for me) all over again. I can’t believe this actually happened but it did. And it was traumatic. Deep breath. Thankfully there are other hospitals¬† in Berlin…

My general practioner and I had decided to keep an eye on my lungs in a not-panicking-way. So a few months later, at the end of April, it was time for another lung check-up. She recommended a true specialist for pneumology and sleep medicine at DRK Mitte. It so happened that my mom had an appointment for a small procedure at that hospital (everything is ok, don’t worry!). She asked her doctor (who by the way had been recommended by my wonderful general practitioner) for directions to the pneumology clinic, her doctor asked what she needed, she explained the situation, her doctor picked up the phone and got me an appointment for THE NEXT DAY.
That first appointment with… I’m going to call him the Professor was quite short: I described my problem and he said: “Let’s do a full lung examination right now and on Friday you can come to the sleep clinic for two nights and we will take it from there.” How about that… no predictions, no speculation… test first, talk later… I like it! That lung examination was what I expected: they had different machines and a special chamber, and I had to breathe like this and like that, with resistance and without, through my mouth, through my nose… it felt very comprehensive.
Two days later my dad, my mattress and I went to the sleep clinic. My dad came with me because I need so much help. The mattress came with me because I already know that spasticity is a problem and my mattress has made a huge difference. And what’s the point of going to a sleep clinic if I can’t sleep because I don’t have the right mattress? Everybody at the sleep clinic was absolutely wonderful. The nurses especially were so kind and helpful, not just for me but also for my dad. The night however was horrible. They attached all kinds of cables to me, EEG, EKG, sensors in front of my mouth and nose, a microphone and there was a camera pointed at my bed. All in all not the most comfortable situation for sleeping. But I did sleep apparently, at least the computer said so: I was monitored for almost 8 hours and I slept… 3.5. I do have sleeping problems, I’m not making it up! That night the spasticity in my legs was really bad (I really wanted to walk around but couldn’t because of the cables) and I was just plain uncomfortable with all the cables. Bit of a conundrum, isn’t it: they need the cables to monitor my sleep but how am I expected to sleep with all those cables?!
Anyway, they removed the cables at 6.00am and at 8.00am the Professor came with good news: almost all my lung results were within normal range, the low end of normal but still. Two results were a little worse: one has to do with lung expansion and one has to do with the spreading of oxygen. But neither was bad enough to make treatment necessary, thank God (he actually wrote “thank God” in his official letter!). He wants to see me every three months to get a feeling for how these symptoms develop in my case. Wait, what?! A doctor in a hospital who doesn’t just shove me in the ALS box but actually cares about how symptoms develop in my particular, individual case?! I … don’t know what to say… this man and his staff have restored my faith in hospitals. See you in three months!