BREATHLESSLY MOTHERING

EMOTIONAL, HEALTH, INSPIRING, LOVE & MARRIAGE, MOTHERHOOD, THOUGHT-PROVOKING, Uncategorized

I have followed Rachel Clements for a while and thought she was amazing, but reading this account of her life with lung disease has proved even that is an understatement, she’s truly ‘something else.’ What’s more her story, apart from the challenge of parenting with only 24% remaining lung function and whilst rigged up to an oxygen machine, is full of wonderful surprises.

I’m 30 years old and no ordinary mother of 3.

I am oxygen dependent 24 hours a day, 7 days a week.
At the age of 15 I was diagnosed with a rare lung disease called Pulmonary fibrosis.
My right lung had been collapsed for over a year, but my GP *thought* I was anorexic; he wrongly diagnosed me because of my age and I was eventually sectioned and it was only upon forced admission to A&E we discovered the horrific truth.
Pulmonary Fibrosis is an interstitial lung disease in which the lung tissue becomes thickened, stiff and scarred over a period of time. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker (killed-off) the lungs lose their ability to transfer oxygen into the bloodstream.
My immune system is so kick-ass it attacks itself in defence to something, but we’ve never discovered just what that culprit is because I tested negative to all antigens in my biopsies.
It’s even rarer when someone is diagnosed at the age of 45, let alone 15.
The damage Pulmonary fibrosis scarring has caused means I have Type 2 Respiratory failure, too, as I can no longer transfer carbon dioxide out of the blood stream effectively either.
Due to the severity of the disease and the weakness of my lungs, my left lung collapsed a few weeks before my 18th Birthday – when I was secretly pregnant with my daughter.
Yes, I was a teenage Mum, too – just to add to the complexity of things.
I have had 3 operations on my right lung and 1 on my left lung to reinflate them. They’ve both had a procedure called Pleuradesis.
Pleuradesis is a medical procedure in which the pleural space [around the lungs] is artificially obliterated. It involves the adhesion of the two pleurae (Kung lining) preventing further lung collapses.
I have just 24% remaining lung function as the disease continues to progress.
There is no cure, it can only be suppressed with steroid treatment.
“What about a lung transplant”? I have been denied any hope of having a transplant due to the state of my lungs (I have gone over this in detail over on my personal blog Breathlessly Mothering).
I was also diagnosed with severe Crohns disease at the age of 19, but suffered with it since I was 8; it took years to get an official diagnosis.
My respiratory consultant and gastroenterologist believe there is some a rare, autoimmune link between the two conditions.
Through my latter teenage years, I learned to cope with the restrictions Pulmonary fibrosis had placed on life and my lungs took a bit of a backseat as the Crohn’s disease worsened.
After suffering harrowing pain, uncontrollable shi*s (I still can’t spell diahrreah), severe weightloss, one too many ASIP’s (accidental shits in public) and living life drugged-up on prescribed opioids just to claw my way through the day, my surgeon removed a third of my small bowel in 2009 which was so heavily diseased and rotten, he couldn’t fathom how I’d even been surviving.
It explained the sheer magnitude of pain!
There’s no rest for the wicked though and satanical Crohn’s disease had other plans and spread to my anus, rectum and part of my lower large bowel soon after my bowel resection in 2009.
My toileting issues spiralled out of control, I couldn’t eat without severe pain and needing to poo the moment I got the urge and cramps.
I became so incredibly weak and lethargic; I just wanted to sleep all of the time. It was easier to just not eat, and I couldn’t eat if I knew I had to go out the next day. I became a complete recluse and if I did go out I had to meticulously plan my every move, where I was going, toilet location, how easily I could park. Taking changes of clothes, items to clean myself up if the inevitable happened. Running for a toilet when you have lung disease with limited lung function was torture, the embarrassment of having an accident just destroyed me every time and I sank so low. I’ve never known anxiety and depression until then.
My illness didn’t just affect me, my husband and daughter couldn’t have a life either, because of my suffering.
I reached the age of 25 (when me daughter was 7) and after exhausting all medicinal avenues, my surgeon suggested having an Ileostomy.
An Ileostomy is when part of your bowel is pulled through your abdomen surface and you poo into a bag so that food wouldn’t need to travel through my large bowel, anus and rectum where there was heavy disease.
I had my Ileostomy formed in February 2014 and it was the best thing I ever did, I finally had the chance of living life; my husband had his wife back and my daughter had a Mum again.
It took months to recover, to gain weight, to get used to looking after a bag and the troubles it to brought; to get over the trauma of how life had been before. I still struggle massively with anxiety when I return to certain places where I had toilet accidents. The mind and memory is a funny old thing that you can never block out.
In 2015 we had the BEST year. Of course the severity of my lung condition still controlled many aspects of my life, but nothing like Crohn’s disease had. We had an awesome start to the year, financially things were comfortable so I didn’t need to work and could enjoy being a stay at home Mum properly without being crippled in bed.
We even had our first foreign holiday as a family and I’ve never known happiness like it, it was pure bliss! It might only have been Tenerife, but for all the planning and insurance it took, travelling with oxygen, I was thrilled we managed to do it and give Chloe her first holiday abroad. Something I only ever dreamed of.
The day after we returned home I got the shock of my life and something happened that was supposed to only ever be a dream…
In early 2010, when I thought I had got over the worst of my Crohn’s disease, we decided to try for a second baby. To no surprise, we hadn’t been successful and after a few rounds of Clomid we were then fortunate enough to be referred for IVF.
Not full blown IVF, there was no issue in that department, I just required help to get me ovulating again. Being malnourished and disgustingly underweight for so long had reeked havoc on my cycles.
I had 5 rounds of HCG injections, but not once would those follicles mature to eggs.
So naturally, we haven’t needed to use contraception since 2010 and accepted that my baby-making days were over at the ripe old age of 22.
That was until of course the day we returned time from that holiday in Tenerife, October 12th 2015, I discovered I was pregnant in a Tesco toilet cubicle.
On holiday my boobs had somehow doubled in size to the point that i was spilling out of all my new bikinis. I was exhausted. I was nauseous.
Being pregnant hadn’t even crossed my mind, but it had crossed my husbands and out of the blue, in Tesco, in insisted I did a pregnant test.
I was so angry with him for suggesting it, all the heartache we’d been through all those years suddenly revisited.
Me being the hostile little Rottweiler (his nickname for me) that I am, to prove a point, marched off to the ladies as he loaded he car up.
Well, the rest as they say is history and Louis was born 5 weeks early via c-section on May 4th 2016.
Despite all my ill health, I felt incredible during the pregnancy. Both my lungs, ileostomy and Crohn’s disease coped really well with my ever-expanding bump and life was good. I even managed to breastfeed him until he was 18 months old.
Then….THEN we got complacent. Too complacent…
And on June the 9th 2017 I discovered we were unexpectedly expecting once again. A bit like buses really.
I’m not going to lie. I cried. I’m not sure why. Louis had just turned 1 and I was enjoying life with him. With Chloe going in to her final year of primary school, it was like being a mum to one again and i was coping well having the best of both worlds and the dedicated time for each of them.
Of course it was all the emotions of early pregnancy getting to me and eventually the excitement set in.
I absolutely dreaded telling friends and family because I knew the judgement and concerns of how I was going to cope with 2 under 2 and being ill, would hit. And they did.
October soon came and I was 25 weeks pregnant and struggling. BAD. I was measuring so much bigger than I had with the other 2 and assumed I was struggling because I was carrying a bigger baby. From that point onwards I was now on oxygen 24/7 as opposed to just nighttime like I have been for 13 years now.
It was one of the worst pregnancies EVER. I couldn’t catch my breath, was constantly wanting to sleep, I felt sick all the time, I couldn’t stop itching day and night, my ileostomy caused me skin problems on my stomach, and my liver function was so unexplainably bad I had to be hospitalised.
It was a hard slog making it to the planned 34 weeks when I was booked for my section, hanging by a thread!
The one thing that kept me going throughout is that we didn’t know the sex and it was the most magical experience to have my baby held up in front of me so I could find out for myself. Another beautiful baby boy, Ivan, on 7th December 2017 weighing 4lb14oz – big for 6 weeks early!
He was born at 3:30 in the afternoon and taken off to NICU as expected. As soon as I was out of recovery I was on the Medela Symphony knocking out the milk ready for his NG tube. Having had the same experience with Louis it was a lot more relaxing to know how NICU worked and what I needed to do to fulfil NG feeding requirements.
I felt relaxed, my body felt relaxed and I was breathing calmly once again.
Then when it came to turning my oxygen down and weaning away from daytime use, I wasn’t able to maintain my oxygen levels by myself.
There was a lot of concern from various consultants, but I was just so in this glorious newborn bubble of love, that I was naive to the severity of it all.
I was having regular Arterial Blood taken from my wrist during the section and for a few hours afterwards to monitor the oxygen and carbon dioxide levels in my blood. Type 2 Respiratory failure means that as well as not being able to absorb enough oxygen, it also means I can’t expel carbon dioxide very well either. It can be very dangerous and damaging to organs if carbon dioxide levels build up in your blood; unfortunately they were and that’s what my consultants were losing their s***t over.
I was warned that there was a huge chance I was going to be taken to Intensive Care to be ventilated so the Co2 could be “blown off” with a ventilator. I hadn’t even seen or had cuddles with my baby who was having treatment if his own in NICU.
Thankfully, on the blood gas front, everything calmed down and I avoided ICU – just! – and I finally got taken to NICU for first cuddles at midnight!
A few days of recovery passed, and on day 4 Ivan came to join me on the post-natal ward. For 6 weeks early he was incredible; nothing but a precautionary NG tube for feeds so that he wouldn’t get tired. We’d established breastfeeding, too, and I was eager to get home!
Except, we couldn’t go home because I had a lung infection and we needed to get to the bottom of why I had become dependent on oxygen, frustratingly unable to maintain my own o2 level.
I had a CT-scan to rule-out the possibility of a blood clot, which was negative, as well as complex blood samples grown in the lab to check for specific fungal infection in the lung that can go undetected.
A week passed by and I started to lose my cool; doctors were avoiding us, I was still on IV antibiotics (but feeling well), I was blocking a much-needed post-natal bed and was missing my 2 kids at home like crazy! I demanded an explanation and eventually I lost it at one of my consultants and the flood of hormonal tears ensued.
They finally declared what I’d feared all along over the last week, that the x-ray and CT scans had revealed further disease progression with further scarring. There is no cure for this disease.
As I already had an oxygen concentrator at home (a machine that produces oxygen) we were eventually permitted to go home just before Christmas. It was such a bitter-sweet time and I felt incredibly low over the festive period, crying everyday. I felt trapped because I couldn’t leave the house and wondered how I’d ever be able to be a proper mum to my children.
For weeks there wasn’t a night when I didn’t cry myself to sleep at the thought of not seeing my children grow up, graduate, get married, have their own children…and it ate me up inside. It still does.
My respiratory nurse set me up with a portable oxygen concentrator (the size of a handbag) which meant I could finally leave the house alone with the kids and have my freedom once again.
This really lifted my spirits; I managed to build some fitness back up and pushed myself to fight through the anxiety and go out as much as I could, even just for coffee.
I soon felt like me again, the positive girl I used to be, seeing the best of every situation. It’s like a light had switched back on inside and I realised I couldn’t let this situation dictate my life, I needed to make the most of the time I did have to give my kids the very best life and memories. I couldn’t wallow in self-pity any longer, for their sakes as well as mine.
Ivan will turn 1 in just 16 days and I can certainly say it’s been an interesting year, but we’ve certainly made the most of it. And now I’m getting all festive and can’t wait to have our first PROPER Christmas full of nothing but joy and happiness…and possibly a hangover or 2.
So here I am, now completely dependent on oxygen; still riding the erratic rollercoaster of motherhood like the rest of us, just breathlessly…

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BREATHLESSLY MOTHERING

I am oxygen dependent 24 hours a day, 7 days a week.

At the age of 15 I was diagnosed with a rare lung disease called Pulmonary fibrosis.

My right lung had been collapsed for over a year, but my GP *thought* I was anorexic; he wrongly diagnosed me because of my age and I was eventually sectioned and it was only upon forced admission to A&E we discovered the horrific truth.

My immune system is so kick-ass it attacks itself in defence to something, but we’ve never discovered just what that culprit is because I tested negative to all antigens in my biopsies.

It’s even rarer when someone is diagnosed at the age of 45, let alone 15.

The damage Pulmonary fibrosis scarring has caused means I have Type 2 Respiratory failure, too, as I can no longer transfer carbon dioxide out of the blood stream effectively either.

Due to the severity of the disease and the weakness of my lungs, my left lung collapsed a few weeks before my 18th Birthday – when I was secretly pregnant with my daughter.

Yes, I was a teenage Mum, too – just to add to the complexity of things.

I have had 3 operations on my right lung and 1 on my left lung to reinflate them. They’ve both had a procedure called Pleuradesis.

Pleuradesis is a medical procedure in which the pleural space [around the lungs] is artificially obliterated. It involves the adhesion of the two pleurae (Kung lining) preventing further lung collapses.

I have just 24% remaining lung function as the disease continues to progress.

There is no cure, it can only be suppressed with steroid treatment.

“What about a lung transplant”? I have been denied any hope of having a transplant due to the state of my lungs (I have gone over this in detail over on my personal blog Breathlessly Mothering).

I was also diagnosed with severe Crohns disease at the age of 19, but suffered with it since I was 8; it took years to get an official diagnosis.

My respiratory consultant and gastroenterologist believe there is some a rare, autoimmune link between the two conditions.

Through my latter teenage years, I learned to cope with the restrictions Pulmonary fibrosis had placed on life and my lungs took a bit of a backseat as the Crohn’s disease worsened.

It explained the sheer magnitude of pain!

There’s no rest for the wicked though and satanical Crohn’s disease had other plans and spread to my anus, rectum and part of my lower large bowel soon after my bowel resection in 2009.

My toileting issues spiralled out of control, I couldn’t eat without severe pain and needing to poo the moment I got the urge and cramps.

My illness didn’t just affect me, my husband and daughter couldn’t have a life either, because of my suffering.

I reached the age of 25 (when me daughter was 7) and after exhausting all medicinal avenues, my surgeon suggested having an Ileostomy.

An Ileostomy is when part of your bowel is pulled through your abdomen surface and you poo into a bag so that food wouldn’t need to travel through my large bowel, anus and rectum where there was heavy disease.

I had my Ileostomy formed in February 2014 and it was the best thing I ever did, I finally had the chance of living life; my husband had his wife back and my daughter had a Mum again.

The day after we returned home I got the shock of my life and something happened that was supposed to only ever be a dream…

In early 2010, when I thought I had got over the worst of my Crohn’s disease, we decided to try for a second baby. To no surprise, we hadn’t been successful and after a few rounds of Clomid we were then fortunate enough to be referred for IVF.

Not full blown IVF, there was no issue in that department, I just required help to get me ovulating again. Being malnourished and disgustingly underweight for so long had reeked havoc on my cycles.

I had 5 rounds of HCG injections, but not once would those follicles mature to eggs.

So naturally, we haven’t needed to use contraception since 2010 and accepted that my baby-making days were over at the ripe old age of 22.

That was until of course the day we returned time from that holiday in Tenerife, October 12th 2015, I discovered I was pregnant in a Tesco toilet cubicle.

On holiday my boobs had somehow doubled in size to the point that i was spilling out of all my new bikinis. I was exhausted. I was nauseous.

Being pregnant hadn’t even crossed my mind, but it had crossed my husbands and out of the blue, in Tesco, in insisted I did a pregnant test.

I was so angry with him for suggesting it, all the heartache we’d been through all those years suddenly revisited.

Me being the hostile little Rottweiler (his nickname for me) that I am, to prove a point, marched off to the ladies as he loaded he car up.

Well, the rest as they say is history and Louis was born 5 weeks early via c-section on May 4th 2016.

Despite all my ill health, I felt incredible during the pregnancy. Both my lungs, ileostomy and Crohn’s disease coped really well with my ever-expanding bump and life was good. I even managed to breastfeed him until he was 18 months old.

Then….THEN we got complacent. Too complacent…

And on June the 9th 2017 I discovered we were unexpectedly expecting once again. A bit like buses really.

I’m not going to lie. I cried. I’m not sure why. Louis had just turned 1 and I was enjoying life with him. With Chloe going in to her final year of primary school, it was like being a mum to one again and i was coping well having the best of both worlds and the dedicated time for each of them.

Of course it was all the emotions of early pregnancy getting to me and eventually the excitement set in.

I absolutely dreaded telling friends and family because I knew the judgement and concerns of how I was going to cope with 2 under 2 and being ill, would hit. And they did.

It was one of the worst pregnancies EVER. I couldn’t catch my breath, was constantly wanting to sleep, I felt sick all the time, I couldn’t stop itching day and night, my ileostomy caused me skin problems on my stomach, and my liver function was so unexplainably bad I had to be hospitalised.

It was a hard slog making it to the planned 34 weeks when I was booked for my section, hanging by a thread!

The one thing that kept me going throughout is that we didn’t know the sex and it was the most magical experience to have my baby held up in front of me so I could find out for myself. Another beautiful baby boy, Ivan, on 7th December 2017 weighing 4lb14oz – big for 6 weeks early!

I felt relaxed, my body felt relaxed and I was breathing calmly once again.

Then when it came to turning my oxygen down and weaning away from daytime use, I wasn’t able to maintain my oxygen levels by myself.

There was a lot of concern from various consultants, but I was just so in this glorious newborn bubble of love, that I was naive to the severity of it all.

I was warned that there was a huge chance I was going to be taken to Intensive Care to be ventilated so the Co2 could be “blown off” with a ventilator. I hadn’t even seen or had cuddles with my baby who was having treatment if his own in NICU.

Thankfully, on the blood gas front, everything calmed down and I avoided ICU – just! – and I finally got taken to NICU for first cuddles at midnight!

A few days of recovery passed, and on day 4 Ivan came to join me on the post-natal ward. For 6 weeks early he was incredible; nothing but a precautionary NG tube for feeds so that he wouldn’t get tired. We’d established breastfeeding, too, and I was eager to get home!

Except, we couldn’t go home because I had a lung infection and we needed to get to the bottom of why I had become dependent on oxygen, frustratingly unable to maintain my own o2 level.

I had a CT-scan to rule-out the possibility of a blood clot, which was negative, as well as complex blood samples grown in the lab to check for specific fungal infection in the lung that can go undetected.

They finally declared what I’d feared all along over the last week, that the x-ray and CT scans had revealed further disease progression with further scarring. There is no cure for this disease.

For weeks there wasn’t a night when I didn’t cry myself to sleep at the thought of not seeing my children grow up, graduate, get married, have their own children…and it ate me up inside. It still does.

My respiratory nurse set me up with a portable oxygen concentrator (the size of a handbag) which meant I could finally leave the house alone with the kids and have my freedom once again.

This really lifted my spirits; I managed to build some fitness back up and pushed myself to fight through the anxiety and go out as much as I could, even just for coffee.

Ivan will turn 1 in just 16 days and I can certainly say it’s been an interesting year, but we’ve certainly made the most of it. And now I’m getting all festive and can’t wait to have our first PROPER Christmas full of nothing but joy and happiness…and possibly a hangover or 2.

So here I am, now completely dependent on oxygen; still riding the erratic rollercoaster of motherhood like the rest of us, just breathlessly…

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My right lung had been collapsed for over a year, but my GP thought I was anorexic; he wrongly diagnosed me because of my age and I was eventually sectioned and it was only upon forced admission to A&E we discovered the horrific truth.