Breathing easy

Friday, 18.06.2021, 01:30 a.m.: "We have lungs for you."
Less than 24h on the transplant list. Still trying to accept that transplant was the only and last option if I wanted a realistic chance. Not only to regain quality of life, but to survive. 

I spent the last 5 weeks leading up to my double lung transplant in hospital. Despite our best efforts and trying every possible treatment option I wasn’t showing any signs of improvement. I knew my lungs were failing, yet I wasn’t fully aware how ill I really was. 

Letting go of that spark of hope that my lungs would improve again and agreeing on actively listing me on the high urgency transplant list was tough. Not just did it feel like I failed my own lungs, but also failed seeing the severity of my condition. 
I wanted more time. More time with my lungs. More time to process that it was time to take this huge step. I wanted a guarantee that new lungs wouldn't just give me more time, but enough time. And while none of this was possible, moving forward was.   

The first three days after having my lung transplant, I was kept sedated, ventilated and on ECMO to give my body time to adapt and recover from surgery. 
Soon after waking up, still hallucinating from the strong medications and distressed from the pain I became aware of the fast and shallow breaths I was taking. I still felt extremely breathless but my new lungs were working. I was off supplemental oxygen completely. 

I think I expected myself to feel happy and grateful I no longer had failing lungs, instead I wasn't feeling anything (except from horrendous pain from surgery).
I did what had to be done. Sat up, stood up and even walked a few meters with a physiotherapist. I was fighting. And knew what I was fighting for but it also was a fight against an enemy that did not exist. 
It probably sounds paradoxical, but I only started fully accepting my new lungs, whilst my body was rejecting them. I developed acute rejection 3 weeks after transplant. In a matter of hours, I went from experiencing mild shortness of breath to feeling like I was suffocating and needing support from high flow oxygen. Thankfully I responded well to treatment and recognized we could only move forward together - as a team. 

And that's exactly what we did this past month on rehab. 
I can talk, walk and even climb a flight of stairs without getting out of breath.
For the first in years I'm actually getting somewhere, rather than going around in circles, or even taking steps backwards.

 

Going through this whole transplant process was the hardest thing I ever did. But it was worth taking that step, I thought I never could. 
Today I don't just feel hopeful but feel my lungs expanding when I take a breath. 

Breathing easy, no longer wheezing.

All in

After years of playing safe it was time step up our game. 

We planned our next move, aware this wasn't a strategy game. Ultimately made the decision without knowing the rules of the game. 

Evidence based medicine has limits and so have I.

Desperate for relief we decided to go forward with plasmapheresis. Therapeutic plasma exchange can be used to remove autoantibodies or immune complexes circulating in the blood, attacking certain parts of body and causing symptoms. Plasmapheresis for seronegative whatever this is I have, definitely was an unconventional therapy approach. Credit to my doctor for agreeing on and reasoning this experimental treatment. 

After an exhausting week in hospital, I was discharged home. Relieved and hopeful. A week after plasma exchange my breathing started improving a bit, my fevers became less frequent, joint pain settled and most of all I had more energy.
Maybe numbers weren't doing it justice, but plasmapheresis really had a noticeable effect.

The effect of the plasma exchange started to wear off after about 6 weeks and we were left with the same set of cards. We went all in anyway.
I felt surprisingly anxious switching to a different antibody treatment. Considering our previous success rate, probably not that surprising after all.

It’s been a month since starting Dupilumab.
Patiently waiting, willing to give it a fair chance. 

Knowing we have an ace up our sleeves certainly would put my mind at ease.

Covid-19 and Chronic illness

2020, a year full of unknowns, restrictions, isolation, fear, anger and frustration. Covid-19 has and continues to affect each and every one. 

This virus has definitely affected me differently than other people my age. I would even go so far as to say, that some of the restrictions and measures haven't necessarily impacted me negatively. While I really enjoy meeting up with people and can’t deny the importance of physical interaction, having a severely impaired lung function does transform simple everyday activities into a workout. The first lockdown gave my body a very much appreciated break. Also, living with a chronic illness the past 8 years of my life has made me develop quite impressive lockdown-skills.
Whereas the thought of having to wear a mask, creating extra resistance, while already struggling with my breathing, did cause a bit of anxiety at first. Turns out it’s not that big of a deal. Wearing an FFP2 mask doesn’t exactly help with shortness of breath, but sure does reduce the risk of catching Covid, which most likely would cause a lot more shortness of breath. The current public hygiene measures aren’t just stopping coronavirus from exploding, but have the positive side effect that the common cold and influenza aren’t spreading like a wildfire. I honestly can’t remember the last time I went this long without getting “normal people sick”. Again, very much appreciated, as my lungs tend to struggle with the slightest cold.

But the negatives definitely outweigh the positives.

I belong to the high-risk-group for developing a severe Covid-19 infection. Obviously, this doesn’t mean I couldn’t have an asymptomatic or mild case, but let’s just not go there. It’s rather a gamble. Going outside and meeting up with people, using public transport and working in the medical field to complete my final year at university all come with bouts of guilt. A rush of awareness, that I’m potentially exposing myself to Covid making my stomach turn.
Shouldn’t I be self-isolating?

I don’t think there is a right or wrong answer to this question. I just know I’ve put a lot of energy into getting myself to the place where I am now, after spending months and months in my personal illness associated lockdown in the past. Which makes the idea of crashing and potentially losing more than I can afford quite daunting.

And while I’m in the very fortunate position to have a pulmonologist who always goes above and beyond, my physical health has been affected by the pandemic. I’ve actually felt quite lost on a couple of occasions. Therapeutic and diagnostic procedures have been put on hold, due to the high number of Covid patients needing medical attention. I know we have limited capacities, but chronic health problems become acute too.

Covid-19 and chronic illness actually behave quite similarly.
Even the right medication doesn’t cure the underlying health condition but treats and improves symptoms. In theory, you should feel better as long as you don’t stop your therapy.
Lockdown, social distancing and masks are acute therapies, no cure. As soon as you lift the restrictions the infection rate will rise. The only long-term therapy and the closest thing to a cure is the Covid-19 vaccine we’ve desperately been waiting for.

I’m still waiting for a suitable long-term treatment so that I can keep up with you, once we’ve all got the vaccine and the pandemic is over!