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!

This is my normal.

My normal isn't your normal and that's ok. 

Sometimes my normal means I won't be able to join in when you share your experiences about seemingly everyday things. 

Because my every day, isn't your every day. 

I just can assume what you worry about, but I'm convinced you don't lie awake at night searching for your answers in medical journals. 

This isn't about who's struggles are more valid or who's living the most liveable life. 

I just want you to realise that I am happy even if I do miss out on a lot. 

Please don't tell me what I'm doing is extraordinary and you couldn't do what I do. 

This is my normal. I don't have a choice. 

In fact, I admire you for studying, working two part time jobs, running a household and still having time and enough energy for your friends and a late-night work out. 

A lot of the things I have to do aren't optional, but they do allow me to live and work towards the future I imagine for myself.

I rarely wonder what it would feel like to have a different normal. If I’m going to be honest with you, the thought of being healthy does scare me to a certain extent. I just don't do your normal anymore. 

Of course, there are things I wish wouldn't require as much effort and energy but with a bit of preparation, creativity, help and planning ahead I do make the majority of my plans possible. 

And don't forget I’ve had the time to adapt to my lungs worsening. I still remember how short of breath I used to feel just sitting with double the lung function I have at the moment. Today I often don't even notice that I'm struggling to breathe until you draw my attention to my wheezing and rattling breathing sounds. 

Back when all this started I wasn't always ok, but I did try to pretend I was. I still knew what my normal should have felt like so it was really hard for me to accept anything but my old normal.
Today I rarely lie at you when I say I'm ok. My old normal isn't my normal anymore. 

As long as I'm in a certain range of ok, I will get on with life. 

When I talk about what I have been up to it might not always sound like a big deal or living life to the fullest to you, but it does feel like it to me. 

Actually, some of your crazy adventures sound like a trip to space and landing on the moon to me. Sometimes you do things I don't even dream about. 

My normal just isn't your normal and that means I get to be ok. 

You get to be ok. Even if you are struggling for whatever reason right now.

Just remember one day you really will be ok.

Hiccup

"a temporary or minor problem or setback"

Not going to lie - I felt it coming, but I didn't expect it to escalate quite the way it did. 

I knew I was in big trouble, when I reached the point where I didn't want to be left alone in my room - the thought of not being able to breath and having no one near by, made me feel rather distressed.

Just standing up caused my oxygen saturation to drop down to numbers I had only seen during severe asthma attacks in the past.

A&E handed me over to the pulmonary ward more or less straight away - there wasn't much point in faffing around pretending this was going to be quick fix.

My lungs had partially collapsed due to the inflammation and mucus stuck in my airways. Intensified breathing treatments and high flow oxygen definitely made me feel a lot more comfortable but weren't solving the problem. Every time I moved more than two centimetres I had the nurses rush into my room as my monitor went off. 

I know there isn't such a thing as a good time when it comes to having your health worsening - but the timing my body chose did feel particularly inconvenient. I fought so hard to get myself healthy enough to finally study something I'm truly passionate about. These past months have been extremely challenging but also rewarding months - I've done so well up to now and I'm definitely not letting this setback stop me from completing what I've started. 

During my hospital stay a bronchoscopy was performed to clear out my lungs and hopefully get an idea of what caused this exacerbation. The actual procedure was successful, despite not being quite as easy as planned.
Whereas coming round from anaesthesia was a bit traumatising.
I honestly can say there are nicer ways waking up than in the middle of an asthma attack. - Actually don't blame my body for not being impressed and choosing a time out. 

Waking up the second time felt a lot better. 

The following days consisted of slowly weaning me off high flow and getting me back on a decent amount of supplemental oxygen, while working on my strength and breathing with a physiotherapist.
The test results we were waiting for made it even clearer my current therapy needed a bit of adjustment. Only time will tell if we're on the right track. 

I’m home now but these past weeks have really taken a toll on my body.
It’s taken solid two weeks to get my walking distance to the point where I can leave the house and actually make it back without needing a ride home in my wheelchair.

I wouldn’t say I have been, or currently am being patient with myself. Rather tolerating this situation, while being incredibly grateful for the support I’m getting from all sides. Knowing me I probably always will fight the help to a certain extent but I’ll never take it for granted.

The next time you have the hiccups I’ll probably be thinking of you.  

The Very Hungry Caterpillar

Remember meticulously watching your parents cut your slice of cake, making sure you are getting your fair share, aka. the biggest piece? Throwing a tantrum when your best friend took that last cherry you have been watching over like a hawk?

I'm getting quite greedy in terms of things I would like to be able to do. 

Envy my friends for the memories they are creating, while traveling the world. Feel like I'm missing out on something, despite being the happiest I have been in years. 

Given the circumstances, a psychiatrist probably would tell me to focus on the things I can do and not plough my energy into comparing my achievements and standards to others. 

Valid point.
But I do think me feeling this way, means I'm closer to getting where I would like to be. I remember the days I literally had to live in the moment, it actually didn't even enter my mind to make plans for the next day. So this is rather an improvement. 

Every now and again I just get frustrated that I have to put so much effort and thought into seemingly simple things. There's no just grabbing my purse and off I go. I joke about not being able to make my own bed as I get too out of breath from spreading out my duvet. And rather wait 20 minutes for the tram, than waste my energy I'd need to walk that one stop. 

Actually there isn't a day that goes by without me actively having to fight not to fall over my own two feet. 

Yet I'm somehow managing to study. And coping. So much better than I thought I would be. 

I enjoy going university to the extent, that I actually get quite excited when packing my bag on a Sunday evening, all ready to start a new week. 

Obviously there have been the odd few Mondays all I've wanted to do is stay in bed and not move. But generally, I even look forward to getting out of the house, when I feel absolutely exhausted after having a rubbish night and a quite rough morning, getting my body to function like I need it to. 

Morning tunes

I'm so grateful for the lovely people I met at university. They don't rush me, when I need a little longer to get from one course room to another, help me carry my bag even before I'm visibly struggling and don't question my ability to keep up with them, rather make it possible. 

Though I believe it helps I don't give them chance to assume "I can't". 

But again, some days I just wish it was a tiny bit easier, I could join in on the nights out and on the weekend trips abroad. 

Sometimes I can't help but wonder if I'm really that close physically or if it's just my head telling me "mind over matter".  

I'm working on catching up, making sure I'm getting my fair share. 

Cat righting reflex

I have been busy living a cat life.

Literally and metaphorically.

I blame not updating my blog on writer's block and the inability of me finding the right words to describe the whirlwind of emotions I experienced over the last months.

It terrifies me to think that I reached a point where I was actually convinced that I didn't stand a cat in hell's chance of getting better. My mental and physical health both were heading downwards in a seemingly free fall. 

I was completely exhausted and at my wits' end.

I would have landed flat on my back if it wasn't for the unconditional love from my family, the endless support from some very special friends and the help I received from the doctors and nurses caring for me.

Landing on my feet was the solid foundation I needed to put things back into perspective. Slowly but surely I was able to rebuild some of  what I had lost. Regaining independence was a huge milestone. I advanced from being pushed around in a wheelchair to whizzing around on an electrical scooter. The day I walked 2 km surrounded by nature I knew I was actually living again. 

Cat righting reflex 

I feel ready but equally scared starting this new chapter. 

Adrenalin from excitement definitely will help me to push through the first weeks of university but I know I have set myself up for failure if I don't make some drastic changes. 

I need to work on letting go of my "all or nothing mindset" and actually start pacing myself sensibly. I worked too hard on getting my health back to this point to simply undo all this progress again. 

Just knowing it's up to me to decide if I can do it has put my mind at ease. 

This has been a huge accomplishment so far and I'm growing with this challenge no matter what!

Humpty Dumpty

"When life gives you lemons - make lemonade".

Personally, I prefer lemon water simply because I tried sugarcoating things for far too long, and I don't think that extra swirl of icing sugar is going to make the cupcake taste any nicer.

Back in July, my health reached the critical point where we had to stop being forever optimistic I'd manage to get myself back on track without any additional intervention. 

I wasn't just stuck in a downward spiral anymore, but actually had reached rock bottom. My doctor was seeing those worrying numbers and I was feeling them. 

There are different phases and stages you go through in chronic illness. Crisis, isolation, anger, reconstruction, intermittent depression and renewal. Everyone dealing with a long-lasting illness goes through these phases at one point or another. But don’t imagine it being like climbing up ladders and ticking off the boxes while trying to reach the top. Yes, you are going to move forward, but you are also going to take big steps back. Maybe even fall off the ladders completely, just to work yourself through a stage again, you thought you had already completed. 

Post PEG tube placement 

My last hospital admission was traumatising. Physically, mentally and everywhere in between. 

I doubted my ability of winning this fight on quite a few occasions, but not once did I feel like giving up. The stones that were coming after me, would have knocked me off the narrow wall without a great lot of effort. I just had to be strong, which is rather ironic with a body as fragile as an eggshell. 

Surprisingly I managed not to crack under the strain and pressure but in a way, I still stumbled off the wall. 

I knew it was going to take some time for me to adapt and to overcome the fear of trusting, not just the people around me but myself and my body. 

My trip to Greece with my best friends, shortly after being discharged wasn't what you wouldn't consider as "medically recommended" - But quite frankly life isn't if you ask me. It's not safe no matter how careful you are. There are so many factors that contribute to health and sickness. Obviously, you don't have to push your luck, but I do believe you have to take certain risks. And to be honest "I'd rather have a body full of scars and a head full of memories, than a head full of regrets and perfect skin." 

 

Far away from my caregivers and “safe place”, adrenalin kicked in and there was this extra battery I secretly hoped for, allowing me to do a lot more than what I expected my body was capable of.

This holiday was what I needed to get recovery rolling and was more than just a reminder that despite all the difficulties I may face in between, I am surrounded by a functioning support system. 

I was able to put things back into perspective and I've realised that going from crisis to renewal is so much easier when you have a bridge to walk over and a rock to hold on to. 

Downwards and Onwards

My lung function has been permanently low but fairly stable the last one and a half years. I’ve had my downs in-between but up to now, we’ve always seen my numbers bounce up again after a couple of weeks. Though most drastic drops have led to me stabilising at a slightly lower baseline and so we have been seeing a “controlled” downward trend in the amount of air I can get in and out of my lungs.

I didn’t expect my lung function to drop, like the pound exchange rate, after announcing the Brexit.

Back in January, we thought my lungs just fancied marching to a different tune - so we let them and agreed on subtly sweeping those numbers under the mat, optimistic I’d be back on the right track in no time.

A month later my lungs presented even smaller and weaker. With another decrease in forced expiratory volume and increase of residual volume, so the amount of air that is trapped in my lungs, making taking deep breaths quite difficult and telling my stomach it's full when it actually isn't. 

This time I wasn't particularly surprised getting those results in black and white, as I had been noticing a decline in my physical endurance the past weeks.

However, we remained confident switching up a few meds and adding a bit of PEP (Positive Expiratory Pressure) training to my daily routine would sort things out again.

Which leads us to today. To another drop. To having my respiratory consultant apologising to me for not knowing what to do, telling me he is sorry that the treatment I'm receiving hasn't been that big breakthrough we were hoping for. And expressing his concern regarding the future if my lungs don’t start stabilising and improving pretty soon.

I know there's no point in beating around the bush and I shouldn't cling onto numbers. But it is fact that there doesn't seem to be a suitable drug available at the moment, to break the cycle I'm stuck in. 
Which makes me wonder if hamsters ever get frustrated that they don’t move forward despite running.

I’m not discouraged, I’m just taking some time to clear my mind. Often I won't admit it, but I do have moments where it just hits me and today I had one of those.

I know no one expects me to run towards the things that are important to me, yet I have to remind myself every now and again, that I’ll get there, even if takes longer than I want it to.  

                                                                              

1 UP

I feel like whenever I update my blog I’m not doing too great. Well, “not too great” in the general not doing overly brilliant world of mine.

Oh aren’t I just making a fantastic job at turning this into something uplifting and positive. - I’m trying, just wait for it.

In the meantime let’s just face the reality…

“So if I have a hot shower and wash my hair now, I probably won’t make it to university because I’ll just end up sitting on the sofa in my dressing gown like soggy, wet lettuce because all my energy just got washed down the drain”

I always feel so stupid when someone asks me what I’ve been up to all day. I know it doesn’t sound a lot when I say I spent my day studying at home and cooking lunch. But actually that’s probably the reason I’m able to sit next to you and enjoy this coffee we are having. Yes, life is such hard work! A shopping tour takes it out of me completely and I’m probably ready for my bed after the third shop.

I do keep going as long as I possibly can but when I overdo it, it’s more like the point of no return - there’s really no going back a step and just taking a deep breath. Game over.

The last two days I’ve spent “recovering”, getting ready to start at Level 1 again and then slowly start working myself back up to my baseline.

Little steps, right? My baseline isn’t good and it’s not at the point where I should stop.

I know.

I have all these plans and pictures in my head of me doing 30 minutes Yoga every morning, followed by a lung exercise session and a big walk around the blocks in the afternoons to bump up my lung function and build up some muscles.

It sounds so easy but I haven’t found a way to make it work, while trying to juggle studying, my social life and just the necessities to maintain a certain level of health at the same time.

Actually, I hoped I would have figured out a masterplan by the end of this blog post. Well I guess there isn’t a long term plan, that even if I did follow religiously would help me reach my goals. How do I define my goals anyway?

There’s no Bowser waiting for me to defeat.

Level Up! That’s the only things that counts.

I Quit...

...taking steroids!

Not the type Schwarzenegger and Co. take to help their muscles grow, but the ones that literally eat them away. Make your face look like a balloon and give you about as much of an immune system as new born baby has - even leaving you sleep as much as one because you constantly feel like you’ve been hit by a truck. Add the the patience and mood swings of a pregnant women to the mix, lean back and enjoy the roller-coaster ride with all its highs and lows.

I can't dismiss that these nasty little ‘sweeties’ eventually helped to clear the eosinophilic infiltrates in my lungs and stopped the wicked asthma attacks I had. But there have been phases while taking steroids where I wasn't sure if the negatives weren’t outweighing the positives. Especially when I really wasn't feeling well lung wise and having to cope with stupid side effects on top of not being able to breathe properly.

This long course of systemic steroids has left me with weak muscles and bones - but that isn’t something that isn't reversible, although it definitely will take some time to "heal".

But it's not just the physical damage I'm still fighting with, but with the psychological. 

The last two years not one day has passed, without me having to really push myself to continue taking this (evil) medication. In a way it was in control of me.

I couldn’t just chuck the pills out of the window when I literally couldn’t face my own face anymore. 

You have to give your adrenal glands time to wake up again and believe me, they are about as hard to get out of bed as my teenage sister. 

It's been a stressful time and even though it's over now, the feeling of something being stronger than me and my will is still haunting me.

I still relay on a bunch of medication to help my little and sometimes very tired lungs to do their job and I am helping my adrenals out with a 'homeopathic' dose of hydrocortisone but I'm over the moon that I'm finally able to give my body the chance to show me what it's capable of doing on its own again.

Don't disappoint me.