Mind over Matter

Dear world,

I always seem to start my blogs by saying each time I can’t believe it’s been so long since I last wrote. But this time it has been quite a while and even some people have asked when they can get their next fix of me. Surely my writing isn’t that addictive?! I’ve not stopped since I was high above the Atlantic back at the beginning of November, busy socialising and getting into the festive spirit. Although our only house started to look in the festive spirit this weekend when I finally found a garland and a Christmas wreath that I liked. I’ve been very organised this year, all presents bought and wrapped already which is very unlike me. I normally take after my dad, typically last minute, but this year I’ve been all over internet shopping and it’s worked a treat, well bar a complaint to amazon about one delivery, but it wouldn’t be right if I didn’t complain about something! Again father’s daughter.

So what have I been up to you may ask? Well I’ve been a few times to the hospital but pleased to say all pre-booked appointments. Firstly I met with the transplant co-ordinator at Wythenshawe hospital. I think they had only allocated 45 minutes but the typical recruiter I am I went with a list of questions that covered A4 paper front and back, so we ended up being in there nearly 2 hours! (At least it wasn’t the 18 pages front and back that Rachel made Ross read that time they were on a break). I was mightily proud with myself though, as Dr Leonard mentioned a few times how impressed he was with my questions. It’s always the little things with me! The actual consultation was very informative. I learnt what the process was, how you get on the list etc. and then the scarier facts and figures of survival rate etc. It was quite eye opening and definitely made me think whether a double lung transplant is the route for me right now.

For the nerds out there who like a good fact, I included, these are the stats I came away with. Currently 30 people on the waiting list for a double lung transplant at Wythenshawe; they perform 20-25 per year and typically someone on the list is waiting on average 12/18 months. 80% of patients who have the transplant survive for the first 2 years, 50% survive 5 years and 20% survive 10 years+. Since having PH and learning more about transplants I knew they couldn’t guarantee the lungs for anymore than 5 years, like a car warranty I suppose! Although I know which I would prefer!! The results didn’t necessarily shock or surprise me as to be fair I wasn’t sure what the figures would be. But what did surprise me was anyone who has a transplant is very highly susceptible to other diseases, for example cancer, diabetes, high blood pressure etc. I remember my PH friend Sarah when she initially was going through the assessment for a lung transplant she told me it wasn’t the golden ticket you naturally assume it will be. Whilst it may cure you of one disease it can open up a whole can of worms for other diseases. That’s why Dr Leonard said they choose very carefully the people they put on the transplant list. Their decision is based on whether they think you will only have 1-2 years to live as you are now if nothing changes, if that is the case and you are classed as fit for transplant then you will likely go on the list. Whilst no one knows how long anyone has to live, for me the way I am feeling now and knowing other treatments the doctors can try first, I don’t think I am in that category for now. So hopefully once we have done all the assessment for transplant they will agree with me that now is just that bit too premature.

As I write this now I am currently sat in ward F2 at Wythenshawe hospital waiting to go into theatre for a right heart catheterisation. It’s the start of the assessment as to whether they think I need to go on the lung transplant list. I have had this done twice before, so kind of know what to expect – or at least that’s what I thought, I’ve just found out they have now changed where the wire is going in. Each time before they have gone in through my neck. It’s the weirdest feeling as you can hear and feel them inserting the wire into my neck and then making its way round to the right side of the heart where they will then take a number of pressure readings. Whilst you aren’t in any pain you feel them clamping the wire in and the pressure that goes with that. It’s quite a surreal feeling. Once it’s in you get a fluttering feeling, I compare the same feeling to the first time I saw Andy! Ha! Pure cheese! Think I would prefer the first time I met him in a bar rather than lying strapped to a bed with a team of consultants and nurses around me with an x-ray machine above me, but hey we can’t all get what we want can we!! Typically you are on the table for about 30 minutes and they can give you the instant results when it’s done. However this time I have just been informed they are going to try going in through my groin. Fun and games! 

As some of you will have seen from my recent Facebook status, I had my 4 month review at Royal Hallamshire hospital a few weeks ago. It was a clinic appointment with the standard tests which include bloods taken, incremental shuttle walking test (bit like a bleep test) and ECG. Typically my walking tests have been on average around the 250m mark. Last time was 380m although I really over did it last time and was unable to control my breathing for hours, with my heart feeling like it was ready to jump out of my chest. This time though I just had a feeling that it was going to be a good clinic. And I was right, I managed 540m!!! Best ever distance since getting diagnosed. The only reason I had to stop was more that I just ran out of time with the bleeps and unless I was to start running which whilst I am feeling better I’m not ready to run just yet I just couldn’t keep up. My legs gave in and became dead heavy, reason being oxygen doesn’t get around quickly enough and therefore I fatigue quicker than a “normal” person, but the fact that I wasn’t gasping for air or really exhausted after I was delighted. I’m sure the doctors will say it is the medication and whilst I agree that obviously does help, I also feel a big part of my improvement is the fitness that I am doing.

I’ve been doing Pilates once a week for the last 18 months and have found as it’s centred around breathing it has helped me to control my breathing. Since September (well since being engaged to be entirely truthful) I have been having PT sessions. Beth certainly works me hard and I’m utterly shattered after our 1 hour session per week but she has commented a few times recently I’m definitely getting stronger and I can feel that it’s all helping me with my breathing and just general well-being. I am able to walk further than I have done for quite a while and whilst I am still not ready to go and climb Mount Everest just yet I do feel so much happier in myself. A positive mind-set is just as important as all the other physical symptoms you can get. 

It’s nearly 2 years since I got diagnosed and according to the NHS website at the time I am lucky to be alive. Based on results 2 years ago only a 1/3 patients survive the first 2 years of being diagnosed PH. So I have nearly met that milestone and the way I feel now I have a lot more time yet! 2015 has been a rollercoaster ride, some great times as well as some very sad and unhappy times. I’m not naïve to think 2016 will be a walk in the park, as all us PHighters know the disease can take hold at anytime and start to go on the decline but Andy and I have lots to look forward to. Getting married being one of those, starting our news lives as Mr and Mrs. As I’ve no doubt said before and probably written in one of my blogs, life is too short to not live it and I very much intend to do that in 2016.

To all my readers (of which I am sure there are thousands) I hope you and all your family have a great Christmas, New Year and a happy and healthy 2016.

Look forward to sharing my new stories with you then.

All my love,

Gem xx

High up in the clouds

Dear world,

I’m currently writing this 35,000ft over the Atlantic, according to the flight path we are flying over Porcupine Plain (who comes up with these names?!). We have 6 hours 13 minutes left before we land in Orlando and we are travelling at 563mph. So that’s the interesting stuff done with! (Technically as I'm posting this I am now sunning myself in our very own private villa, it's about 32 degrees and not even lunchtime yet! Such a tease aren't I whilst you all endure the UK winter) 

The last month or so feels like I’ve been at the fairground and struggling to get off the Ferris wheel. It’s been a constant cycle of drama that I just can’t seem to shrug off. Take me back to the normal days when I could just get through the day without ending up at A&E; or seeing some kind of health professional; or seeing more blood than I should ever see in my lifetime let alone in 6 weeks. I feel since I started this blog that I have had more drama than normal and there was me worrying that I wouldn’t have enough to write about! I hope I haven’t jinxed myself by starting this blog that now my life feels to take on more drama.

I have come to realise since having PH that normal stuff that had no negative effect on me before seems to these days cause me so many more complications. I have always been allergic to penicillin since I was little but as I am on sildenafil for my PH (more commonly known as the little blue pill, Viagra) it turns out it doesn’t like me to be on any other antibiotics. So after I had the flu and pneumonia jab I noticed my arm was starting to really ache and I could barely move it, 24 hours later I ended up in out of hours surgery to be told I had an infection from the jab and needed to be prescribed antibiotics. I wished the doctor luck with this as I knew this wasn’t an easy task to do!

Last year I had my wisdom teeth out and got a really bad infection and at that time they prescribed me erythromycin which I quickly learnt I was allergic to. So knowing I had limited options she suggested a tablet, doxycycline. I must admit in the last 18 months I have become very weary of any medical professional who don’t know about PH. Not because I don’t value their opinion, but as it is such a rare, unknown disease, I don’t need anymore added complications thrown in by someone treating me who doesn’t understand my condition. You probably think I sound like a right spoilt brat, “oh she won’t be treated by me as I’m not good enough for her” but at the best of times I struggle to have little control of my PH that to add someone in who isn’t an expert in it just makes me question them. Anyway I digress as always! So I waited to take my prescription until I had phoned my pharmacist at Sheffield just to check that I was always ok to take this. He confirmed I was fine to take it and that it shouldn’t interact with my PH medication. I take it and 48 hours later having not stopped being sick from the tablet I ended up back in A&E, this time the infection had turned into cellulitis. Turns out I’m also now allergic to doxycycline! Told you more drama! My arm was badly swollen, ridiculously hot and I was in a lot of pain with it. So the hospital started me on IV treatment for 4 days and then a course of oral tablets 12 a day for a week. Pleased to say the IV worked and now the infection has disappeared.

Me whilst on IV drug. The squiggly line shoes where the infection was spreading. 

It was during this week in hospital that it was my PH friend Sarah’s funeral. I had hoped to make it but due to issues internally at the hospital I didn’t make it so my dad went in my place. He brought me the order of service back to me at the hospital and even though I wasn’t there it was nice to read the programme and feel like I was there in spirit. There was a reading at the back of it which hit a chord with me. It reminded me life can be so short, whether short or long, you must live it. I’ve copied below as it summed up Sarah’s attitude to life and one that I think since being diagnosed with PH that I follow the same mantra.

The Dash

I read of a man who stood to speak at the funeral of a friend.

He referred to the dates on her tombstone from the beginning to the end.

He noted that first came the date of her birth

and spoke the following date with tears,

But he said what mattered most of all was the dash between those years.

For that dash represents all the time that she spent alive on earth

And now only those who loved her know what that little line is worth.

For it matters not how much we own, the cars, the house, the cash.

What matters is how we live and love and how we spend our dash.

So think about this long and hard; are there things you’d like to change?

For you never know how much time is left that can still be rearranged.

If we could just slow down enough to consider what’s true and real

And always try to understand the way other people feel.

And be less quick to anger and show appreciation more

And love the people in our lives like we’ve never loved before.

If we treat each other with respect and more often wear a smile.

Remembering that this special dash might only last a little while.

So when your eulogy is being read with your life’s actions to rehash

Would you be proud of the things they say about how you spent your dash?

This reading really resonates with me.  I have always been a magpie as Andy will confirm, loving everything sparkly and shiny that I can get my hands on! But since being diagnosed it’s only now I realise how much before I used to take my health for granted. I always thought I would be like everyone else, be able to have my own family, become a Grandma, live to be old age with Andy, we would be the old couple at the beach holding hands eating our fish and chips (gluten free of course) and if I was to get ill it would be when I was old and grey not still in my early 30s.

Whether you have an illness or you drop dead tomorrow with no warning you need to live life as though today is the last. Don’t have any regrets. Make up with people you fall out with. Have a smile on your face even when life takes you through the shit times. Most of us who will read this live in a far better place than other people we see on the tele most days, who are fleeing from their countries due to poverty, rape, war, terrorists. Whilst we all have our own bad days and worries, you only get one life.

Make it count.

As always thanks for reading.

Lots of Love,

Gem xx

PH Twinnie - In Memory of Sarah Mary Herron

Dear world,

It’s this time again when I start to put pen to paper (ok finger to keyboard) and write about the last 4 weeks. Can’t quite believe it has been 4 weeks since I last wrote, and A LOT has happened. I’ve had some very happy and exciting news, another blue lighted incident which was less happy and unfortunately becoming too routine for my liking, and well some devastating news for which there are no words. So out of all the blogs I’ve written I have a feeling this is going to be the most emotional!

Thursday 10^th September (4 weeks and one day ago), I had spent most of the day writing my blog (clearly I can procrastinate while on my day off) when I received a text from Andy suggesting as it was such a gorgeous day we should go out for a walk in our picturesque park opposite our house, and he would pick up some ciders on the way home (for those that watched Real Housewives of Cheshire this week, the river episode is our park). Hmmm he’s up to something I thought! Most people know I should have been a detective and if I can try and spoil a big surprise then I will. I remember my best friend Katie telling me her then boyfriend Jono (now her husband), was taking her to Disneyland in California for her 30^th and I told her in a not so quiet voice that he was definitely going to propose. I had no clue at the time that this was true by the way, just a total guess. Jono at this point was in the other room cursing me for ruining the surprise. I obviously just have this knack of knowing when something is going on, a 6^th sense I like to call it, nosy I’m sure my friends just call it!

So I called my other close friend Amie at 5.17pm precisely (told you I should have been a detective) and let her know that something was untoward. Andy arrived home in an unusually good mood and we had tea. As we know I’m not one for big walks, especially after food, and I thought can I really be bothered to go outside when I’m quite happy cuddled up on the sofa with my big blanket in my pjs?! But not this time. Andy was insistent we went for a walk. Definitely strange!! So off we went for our walk, meandering along the river, I couldn’t tell you what we talked about, all I kept thinking was is he really going to do it?? Now as we know, PH and walking aren’t the best of friends, so walking up a hill and PH are pretty much enemies! We got to the top of the hill and I was gasping for air and headed to the conveniently located park bench and dropped my bag on it. I then turned around to see Andy on one knee. “Oh god” is what I was thinking (not in a oh crap I don’t want to marry him way, but I struggle to give people hugs and do PDAs let alone have Andy be on one knee in a public place, so this was pretty damn difficult for me to comprehend). I quickly checked out the immediate area (again detective like) to see whether there were any people around (luckily he did well and it was just the two of us) when he asked THE question. All I could muster out loud was “NO” (the nerves) and then straight away I was like “oooo let me try the ring on”. Typical woman I suspect! Perfect fit and there it sparkled. Now one surprise Andy had cleverly disguised from me was that he had champagne in his bag, so I had a few sips before I started to ring my entire phone book! We then realised about half an hour later I still hadn’t said yes! By this time the ring was clearly on my finger with no intention of coming off so I think he knew the answer!

Andy timed the proposal well. Unbeknown to us (until I spoke with my mum later that night) she shared that it would have been my Grandparents 60^th wedding anniversary on the same day, which just sealed the deal even more that it was all meant to be. He also timed it well as the day before I came off warfarin and switched to another blood thinner, but this one I could drink on, so in true Gemma fashion style who hasn’t really been able to drink properly for the last 18 months, I made up for drinking my entire body weight in alcohol! Needless to say the Friday morning was painful. But totally worth it. 

We spent the weekend socialising, showing off the ring (not normally one to gloat) but it is gorgeous and sparkly. With everything that is going on with my health we both agreed we wanted to get married sooner than later and that 2016 was the year to do it. It became apparent quite quickly unless we had an exorbitant amount of money to spend on one day, that most venues were booked up until 2018. Who books their wedding 3 years in advance?! After looking at 7/8 venues we quickly were losing the will to live and thought we would never find the one. We sat down, worked out our criteria of what we wanted and laughed to ourselves thinking we would never find it. So I gave up. Now I don’t know about anyone else but I’ve always enjoyed watching ‘Don’t tell the Bride’ and always said I would trust Andy enough to plan our wedding (well maybe not every detail) and I would happily take the £12,000 they offer but the slight small problem is I would not want to be filmed for TV, so I figured that quickly kyboshes that idea. But I was right to think I would trust Andy as he somehow found our amazing venue which ticked all of our criteria and even when it looked like a church wedding was going to be nye on impossible he managed to pull out all the stops and booked the church too. Maybe I should hire Andy out as a wedding planner for other friends?!

My health prior to the proposal was starting to feel really good. I finally felt like my old self. Being able to walk up the stairs and not be massively out of breath and be able to do some of the stuff I could do before. Although Andy and I agreed the food shop is still out of reach as for some reason just being on my feet for too long is still causing me to be exhausted and breathless. I put my general overall good feeling to the new introduction of taking iron tablets. The doctors were insistent I was in range for my ferritin blood test but when I looked closely the range is 12-150 and I was 16, to me that seemed on the low side.  So I insisted they start me on iron tablets and since then I got the spark back; the energy; and the smile on my face. It was so nice to feel “normal”. However what I have come to realise is, take it whilst you can, as it won’t be long before something comes to upset the apple cart. That might sound like I’m being negative but actually I’m not, it’s just realistic to know that with this condition there are so many highs and lows.

As we know I switched from warfarin to rivaroxaban 4 weeks ago which is a relatively new blood thinner on the market. It doesn’t require monitoring like warfarin, which involved me having weekly blood tests and with this one it doesn’t interact with any other medication so if I need antibiotics for example or to go to the dentist I don’t need to worry that it will affect this. It also means I don’t have to worry about not eating too much Vitamin K (which is found in most green vegs, typically my favourites) or drinking too much alcohol. So I thought win win! Finally there is a drug I take out of the 20 tablets I take a day that has some positive traits about it!

After a week of taking the new drug I started to notice bleeding. 2 days later I woke up to what can only be described as looking like I had been massacred in a horror movie. I’ve never seen so much blood. I ended up with 4 ginormous melon sizes blood clots coming out of me. So at this point 4.45am Monday morning I phoned 111. Go through a series of questions and before I know it he has requested an ambulance to come and get me. Still half asleep and not really with it, I tried to persuade him to cancel the ambulance and insist that we drive the 10mins down the road to Wythenshawe hospital. I don’t like drama and the NHS is under enough strain especially A&E, and granted this amount of blood loss is alarming but still I’m awake to be able to drive ourselves to the hospital. He wasn’t having any of it; apparently I was losing blood at a rapid rate. So off we go to Wythenshawe who I have to say were fantastic. Having a rare disease means not every doctor has heard of PH and therefore they don’t understand the severity of it and they don’t understand that even though all my stats including blood pressure, temperature etc. are all normal that underneath the skin it’s not so normal. Luckily for me the lady doctor I had instantly knew about PH so she put my mind at rest. I had various tests throughout the morning and whilst they couldn’t explain why I was losing so much blood they were happy enough with my blood tests that there wasn’t anything too untoward going on. I have spoken with Royal Hallamshire about it and unfortunately this can be one of the side effects with this drug so I’m just hoping that in time it will settle down as I’m still losing a lot of blood. Time will tell I suspect. Apart from this nasty side effect I have to say my PH is feeling good at the moment. Let’s hope it continues.

As some of you will have seen my recent FB status I had some really heart wrenching news this week. My PH friend Sarah, my PH twin which we called ourselves when we first met, has died this week. I met Sarah on Friday 21^st February 2014. I kept a diary when I first got diagnosed as to keep track of the symptoms and side effects and in it was my first meeting with Sarah. I had been brought in to hospital for a few days as the medication wasn’t as effective as the consultants had thought it would be so they wanted to start me on some new medication and monitor me initially.  When I had been in hospital before, all the people on the ward had PH but were all really old and I had no common ground with any of them, as their PH was mainly linked to other lung conditions they had. Whereas this time I went in, it was great to be in the bed next to this girl who I thought looked a similar age to me.

I remember this girl coming over with a big smile on her face introducing herself to me and asking how I was. Needless to say I don’t think I have ever not seen Sarah in person or any photograph of her without that same happy smile on her face that makes you not be able to do anything but smile back. Quickly we started talking and I don’t think we shut up apart from when her boyfriend Gareth came to visit and when my friends Amie and Ant came to see me. She kept going on about this “gin club” she was part of, but I mis-heard her and kept thinking she was talking about “gym club”. I was getting really confused as she kept going on about how great it was and how she would try different flavours and do it with her friends. As I had just met her I didn’t want to come across as being dumb so I just kind of went along with her stories and then I finally had the bottle to say are you talking about gym club, when she just laughed hysterically and said “ha no I’m talking about gin, the drink”!! Needless to say from then on I knew we were going to be friends. She had such a warm manner and felt that even though I had known her a few days it was like I had known her all my life.

I remember on the Saturday night we stayed up talking until gone midnight which was quite rebellious as the nursing staff were very adamant it was lights out and no talking from 10pm. Needless to say I read in my diary I felt very tired on the Sunday morning when the nursing staff got their own back on us and woke us up at 6.30am to take our stats. We realised we had lots in common: both the same age; both wanted to move to Australia; both been brought up Catholic; both had Scottish family; both had giants for boyfriends and ironically they were both toyboys and were the same age too; we both wanted to get a dog; loved food; both had food allergies; loved chilli in our food and whilst at the time I wasn’t a gin drinker she soon got me into it! From then on her love of Hendricks gin, ice, slimline tonic and cucumber slice has completely rubbed off on me and now I have about 4 bottles of Hendricks gin (they were on offer and I couldn’t refuse) and I raised a g&t in her honour.

Since the news has come of her death I can’t stop thinking about her, Gareth and her family and friends, and have read all our texts we had with one another. From reading the texts I got such a sense of happiness and positivity from Sarah. If you had met Sarah and didn’t see the oxygen constantly being pumped into her, you genuinely wouldn’t have known she was poorly. Sarah was extremely poorly though and even when she was in hospital with her recurring lung collapsing she still never moaned or made out as though she was having a bad time of it. In many of her texts she wrote: “it will get better in time”. Sarah has been such a great support and rock to me. Constantly I would message her saying “is this normal” or “am I ok to take codeine with these medications” or “how do you manage to drink more than you should on your warfarin”!  Always straight away she would reply back and put my mind at rest that we were in this together.

I saw Sarah a few times since we met February last year. Once I went to her house to meet her gorgeous addition to the family, Marlow. Marlow is a cross breed of a pug and a beagle and my god I’ve never seen such a gorgeous pup. She was so good to him and you could see the instant love she had for him. I last saw Sarah when she was in hospital in the summer this year. She had just received some really bad news that day that the chest drain wasn’t working which in turn is why she would keep getting more and more infections as they couldn’t prevent the lung collapsing. But would anyone have guessed if they saw her that day?? No one. She still had the same smile on her face and was just so grateful that I had made the time to come see her. Honestly I’ve not met anyone like her and I don’t know if I will ever meet anyone else like her. She had a zest for life and just took every day like it was her last.

When I found out the news of Sarah I came home to find some post. The one letter on the doormat I instantly knew what it was. I opened it and it was my appointment for me to meet with the transplant team at Wythenshawe. What a day of all days for that to come on! At first I was so angry that it had come on the same day but then after a while I thought maybe it’s Sarah’s way as saying “I was too late for my transplant but I’ll be damned if you miss out too”. When I last went to hospital in August and the transplant topic came up I was straight on the phone to Sarah to know if this was normal or whether she would be worried if it was her. Instantly she put my mind at rest and said it’s a good sign they are talking about it as they are looking to the future and how they can hopefully treat you. It’s just heart breaking to know that Sarah was too late for her transplant and in the end was too poorly. But I know Sarah and I know she wouldn’t want me to feel sorry for her, she would want us all to get on with it and live life every day.

I messaged her brother and he told me she was quoted as saying once, “I did more with PH than I did before it”. I can totally believe that of Sarah. She refused to let it beat her and even in her darkest moments she still fought on. I have a text from her when we first met to say she thought I was an inspiration for my courage and strength with it all, but I said this to her then and I’ll say it now. I’ve not met such an inspiring woman as her. If anyone could look up to someone she was the beacon. Even though she won’t be here for me to text anymore, or call upon her for her advice as to what to do for the best ,she has given me the inspiration to fight on and to fight for all us PH sufferers as this awful disease can’t wipe us all out. I’m going to fight for you Sarah. RIP my gorgeous smiley PH twin. Breathe easy xx 

Lots of love,

Gem xx

The mist has finally cleared

Dear world,

I never intended to have a set routine of when I would do my blogs, although I realise looking back my first three were written every 2 weeks to the day. Typical me really, I have to be precise, living with Andy has rubbed off on me and I’ve now picked up his OCD habits. But for the avid readers (of which I’m sure there are hundreds) I apologise that I’ve made you wait that little bit longer for this one.

Since going to the Royal Hallamshire at the beginning of August I’ve really been struggling to maintain the positive outlook that has so far guided me through my journey. Mixture of different things but mainly and most worryingly I felt my health really started to deteriorate. To the point where I genuinely thought here we go, it’s the start of the decline. It felt just like it did before I got blue-lighted into hospital when I first got diagnosed. My breathing became really laboured and intense. I struggled to concentrate; even not being able to focus on one of my pastimes…Candy Crush. I have a slight obsession with it (I’m on level 1035 for anyone who is interested – well I was off work for 9 months so what was I meant to spend my time on?) The fatigue just wouldn’t shift and it was like any movement I tried to do whether it was simply opening my eyes or getting up from the couch took an enormous amount of effort.

When you feel like this, apart from the physical side effects, the mental side is just as bad, if not a little bit worse. I really wanted to snap out of it, especially as I felt like a real burden. Andy had to do everything for me and I felt bad for my work colleagues as I felt like I was letting them down by not contributing. I’ve never been one for relying on people and all of a sudden I could see my life flash before me, being pushed in a wheelchair full time, being washed and cooked for by Andy. It wasn’t a pretty image at 31 I can tell you.

I genuinely really started to panic about the future. I’ve never been one to take time off work but I must have been in a bad way as I finally started to listen to the GP who told me to take time off. I wouldn’t say I’m a total stress head (my boss Mike would disagree) but I do find it difficult to switch off. I find my head is always full of so many thoughts that I feel need doing right away. So when I am told to just rest and sleep as much as I can, I find it one of the most challenging things ever.

If I’m totally honest my thoughts were also very much centred about the chat I last had with my consultant about the referral for a lung transplant. I clearly got each of the best parts from my parents, my dad’s same sense of humour and my mum’s list writing and planning for the future. Thankfully the humour part has helped but the list writing and planning for the future is the biggest enemy to someone who is living with a timebomb. My mind ended up going to a dark place.

Everybody's journey on the transplant list is different but as a rough guide: 12 months from now to get on the double lung transplant list, on average they say it’s anywhere between 1-3 years on the waiting list. Then if you are successful enough to receive an organ, actually surviving the operation and then being lucky enough to avoid rejection (where your body rejects the new organ) they only then guarantee the new organ for 5 years after.

Optimistic Gem thinks I might reach 40, negative Gem thinks I might be dead in 3. I told you I had my dad’s dry sense of humour! I can laugh about it now as I’ve had time to process it and I’ve come out the other side with my typical analogy of, I could get hit by a bus tomorrow so what’s the point in worrying about something you have no control over. That is the epicentre of what I believe anyone who has a progressive disease fears the most, not having any control.

Before this diagnosis I never had any thoughts about organ donation, and why would I? It didn’t affect me, and why would it, being young, relatively healthy (I was in the correct BMI category for my height and weight) it’s not something that I ever thought I would need.

I’ve always been a daddy’s girl and normally follow his opinions on life, hence why I’m a Leeds United fan (for my sins) and not Manchester United like the rest of my family. He had very strong opinions about organ donation; in a nutshell he was totally against it. He thought it was messing with science and would say “your time will come when it’s meant to, don’t let people try and interfere with that”. I remember when my sister and I were very young, we had been allowed to sit at the adult table at one of their many dinner parties, as long as we were on our best behaviour, and the topic started about organ donation. A random thought to remember I realise but I remember dad saying that even if Leah or I ever needed an organ he wouldn’t give it to us.

Since it’s come on my radar I’ve been very intrigued to find out what peoples thoughts are regarding organ donation. I’ve found it to be a mixed reaction, some people instantly say yes without hesitation, (rare cases) some say no (more than yes) and then you have the unsure folk (mainly everyone, including my own thoughts prior to PH). The general consensus I’ve heard is the fear that you as the donor are worth more dead than alive or “I would happily donate, but only to someone I know”. If only life could be that straight forward. Granted in the case of a kidney transplant it’s likely that you would have a higher chance of getting that organ from someone you know, but for an organ that you need someone to have died for to be able to receive it, the chances are (in my humble and non-results based opinion), is that it is extremely unlikely.

I appreciate this topic in some peoples’ eyes is controversial and like religion and politics is probably not a topic for the dinner table. But as its national organ donation week I just thought I might highlight a cause that I, you, someone in your family, a neighbour or even your own worst enemy may be affected by at some point in your or their lives, and you will never expect that it may happen.

Now anyone who has ever worked with me or knows me well enough will know I love a good competition or a quiz. So I have a question for you, how many people are on the transplant list in the UK? Go on I dare you to guess.

1,000, 3,000, 5,000.

One of my other traits is I struggle to keep things a secret so I’ll tell you the answer, it’s 6933.

Another guess for you how many people have had a transplant since April this year?

100, 1,000, 10,000.

Real answer is 1482.

Final fact for you: 3 people a day die who are on the transplant list. These figures aren’t there to scare you or make you feel sorry for me or anyone who is on the list. I only thought I would share the facts and figures as I didn’t know these figures beforehand and the results really surprised me.

It’s interesting to know if we lived in France or I think any other European country, the rate of transplants carried out is a lot higher and the timescales of actually receiving the organs are a lot lower than in the UK. Why you may ask? Well in the UK we have to opt in to be on the organ donor register, whereas in France and other countries you have to opt yourself out if you don’t want to be on it. Although from my research, I have found that Wales are going to trial it the continental way and depending on how successful that proves, England hopefully may follow suit.

I could harp on about the research I have found out but I don’t want to bore you all and I’m conscious I need to get the tea on soon. So this is the best website I have found to answer any of your questions you may have about how you can register and how donation actually works https://www.organdonation.nhs.uk/about-donation/

One final point is if you do decide you would like to donate your organs when you no longer need them, something that is as important as registering is to tell your loved ones. Should you ever be in a situation where your loved ones need to make the decision, it would be so much easier for them if they know your wishes, especially at what would be a very difficult time.

Had it not been for being diagnosed with PH I would probably never have even thought to register myself on the organ donor register. But as maybe one day I might need to be on it, I would be totally hypercritical if I were to just to take someone else’s organs and not donate mine. I was surprised to find out that even though my heart and lungs are in a bad way, I can still donate my other organs. From tissue to skin through to liver, heart valves and bone and you have the complete choice of what parts you want to donate. So if you didn’t want to donate your eyes but were happy to donate a kidney for example you can do that. Since being diagnosed all of my family even my dad would you believe, has signed up to become a donor. So if my stubborn dad can change his mind, anyone can!

I’ll leave you with this final thought:

If you needed an organ transplant would you have one? If so please help those in need of a transplant by opting to donate organs and tissue.

As always thanks for reading.

Gem xx

Life is a rollercoaster

Dear world,

My new title for this blog is not about me confessing to being a secret Ronan Keating fan. In fact I don’t know if I can stand any other pop star less, just seeing his white pearly teeth give that cheesy Irish smile is enough for my skin to crawl. So you’ll be pleased to know this blog isn’t about the boyband idol himself, instead it describes the last few weeks of my life.

As you may remember from my first blog, I work in recruitment and whilst it definitely wasn’t my dream job aged 4, when I was aspiring to be a ballerina, I still love the job. Anyway I’ve done it 8 years and I actually do feel like I have my dream job (well sometimes). It’s definitely the champagne and razorblades world we all describe when in recruitment, but even the lows (which have been plentiful, after all I started just before the recession), have kept me going. Recruitment has definitely taught me a few things: resilience, persistence and to be thick skinned. All of these qualities, (as I like to see them) have probably supported me when first being diagnosed with PH. So far I feel they have held me in good stead. Well that was until a few weeks ago.

To be told by your consultant that one day the tablets will stop working, you know that at some point your body will give in, but you don’t know when, so the tiniest signs of not feeling “normal” you start to panic. It’s happened a few times where I get that bit more breathless or have less energy and everything becomes much more of an effort. Luckily each time there has been a reason, I’ve overdone it or picked up a virus/infection or even the weather (and I’m not being a typical British moaning about the weather here, it may sound unusual but it can genuinely really affect PH sufferers in both warm and cold weather, and unfortunately neither are particularly helpful to our condition). Now granted when I was younger I probably was described as a hypochondriac, but being slightly older and maybe a little wiser I’m learning when my body is trying to tell me something. And the last few weeks my body has well and truly told me to take a break.

I had noticed a few weeks ago that I was truly exhausted; this was a new level of tiredness. In fact I can’t even call it tiredness it was extreme fatigue. Someone described me as looking “dead behind the eyes” which isn’t the nicest of compliments to hear I can tell you, but it probably explained what they saw. I literally couldn’t function, everything was a chore, even reading was difficult. I’d re-read words over and over again. Now as we know I am a believer of fate and I did keep thinking well at least it’s happening at the right time as I have my 6 monthly review at Royal Hallamshire Hospital coming up so I’m sure they will sort me out and tell me not to worry. It’s more than likely the weird weather we are having which is throwing me off kilter.

6^th August arrived and I had a bad morning in bed looking ghostly white according to Andy (again the lovely compliments just keep coming, good job I’m not one for vanity) and I had barely any energy to claw back the duvet. But I knew I must, and in a weird way it was a comfort to know I was going back to the consultants who know me and understand the condition inside out. I let Andy drive (which showed how ill I was, as I’m the control freak in our relationship and I’ll admit I am a typical back seat driver) and we set off across the Pennines and Derbyshire countryside, along Snake Pass. Thankfully it was foggy and I wasn’t faced with one of my greatest phobias… Electricity Pylons. Lattice style Electricity Pylons to be precise, which is ironic considering I grew up in a house that had a pylon at the bottom of the field on our street. But me and her are still on good terms. We respected each other’s boundaries, she didn’t move into my space and I didn’t go into hers. Note that I am talking about a pylon being female, for anyone who wants a more detailed version please contact me and I will happily share my view point on female and male pylons. Also for good measure she was named Audrey.

Anyway I digress, we arrived at the Hallamshire and I had the standard tests which I am well versed at. I had an ECG, a walking incremental shuttle test (like a bleep test) and blood tests. I then waited to see the consultant. I knew I had walked the longest walking test I had ever done since going, which was 380m, the highest before then on average was 250m. Now anyone just looking at those figures would think great she’s doing really well, she’s improved quite considerably. But what the figures don’t tell you is that I had pushed myself so hard to the 380m that I almost collapsed. For the next few hours my heart was racing so fast and my breathlessness was insane. I knew I had way over done it. But I am a stubborn woman who is trying not to let this illness defeat me.       

After a short wait I saw one of the consultants (there are 4 in total) and if I could spell his name I would but it’s Greek and it’s a long one at that. We went through the standard format of the appointment; how have I been, any differences I have seen, how I am coping day to day etc. It starts off fairly positive so I think well maybe all my negative thoughts are just my mind worrying unnecessarily. We even manage a few laughs here and there, one finally being after 18 months of being on warfarin (which is also known probably more commonly as rat poison) they have agreed to change it for the new drug, rivaroxaban. I “jumped” for joy to know that I wasn’t going to have to go for my weekly blood tests anymore, I could eat as much green vegetables as I like, and I could finally have a few alcoholic drinks without worrying that the anticoagulant ladies wouldn’t tell me off if I slightly overdid it on my 2 units allowance of alcohol per day! So the consultation is going well, even my conscience is willing the consultant to say “we don’t need to see you for the next 12 months”.

Wishful thinking on my part.

I should have known it was too good to be true. The consultant then started to go down the path of the future, which is something they haven’t been keen to discuss with me up till now. Whenever I have asked previously it’s been very vague and I have been almost fobbed off with “we don’t know what the future holds”. I’ve always pushed them for more of a definitive answer however I’ve always ended up with fruitless results. This time however I didn’t need to, he wanted to remind me I have a progressive disease and remind me again “one day the drugs will stop working”. Then it came…….”firstly we want to see you at the end of this year to change your medication”. WHAT?? WHY?? SO I AM GETTING WORSE?? My conscience is in her element. The consultant picks up my thoughts and carries on to say, “Well Gemma whilst you are relatively stable, you have a progressive disease so we need to stay well ahead as we can so we will look to put you on iloprost”. I was first put on this drug when I got diagnosed and it can be administered in two ways; either I will have to sit and inhale it three times a day for 30 minutes each time or I’ll have it intravenously injected straight into my chest which will be there 24/7. Both mean a lot of change to my current medication regime, but I am hoping for the inhaling one rather than constantly having a needle inserted in my chest.

Ok so new medication regime might not mean a lot to anyone who doesn’t take powerful medication but the side effects of these powerful drugs can be horrendous. When I was put on sildenafil (the more commonly associated name….Viagra, yes I am on Viagra 3 times a day, you can start the innuendos now!!) my face went a deep shade of purple and within 15 minutes of taking the drug I went blind for about half an hour before passing out, which I think was the most scary situation I have ever been in. In addition I got and still have to this day the most horrendous headaches. It took my body months to get used to these drugs and the side effects they all bring. So now they want to change all that. Not ideal when I work full time in a stressful job that demands long hours. Being a control freak that I am I absolutely detest when I’m not in control and to know that come the end of the year I will be admitted back into hospital and given a new set of drugs to add into my current regime I have to say fills me with dread.

Secondly and definitely even scarier than changing my medication we discussed a topic that whilst I always knew was lurking somewhere in the dark in my future, I have to admit I never thought we would really talk about, or at least not now, less than 2 years after being diagnosed. The one phrase that I can honestly say I wasn’t anywhere near ready to hear was “I am going to refer you to Wythenshawe and ask that they assess you for a lung transplant”. (Silence for a good few minutes at this point on my part, even the conscience was silent). I just kept staring at him, willing myself not to cry, as I didn’t want to ruin the good fun “party” we had had moments before and all I could think was that I must have misheard him say that as surely this cannot be happening?? I mean I thought he had said I was relatively stable?? If someone is stable how can they be even discussing transplant??? Clearly the consultant read my signals and interpreted that as Gemma wants to know exactly what that will involve. So over the course of the next few moments, I had an out of body experience where I was floating above us all as he described the next steps.

Both me and Andy walked out of the room not sure whether to be pleased that I was relatively stable or whether to be upset that actually my disease is starting to get worse and therefore we were needing to take the next steps.

It hit me………24 hours later.

I had been out for a client lunch being the life and soul of the group as usual (well we’ve heard other peoples comments before with a far less positive spin on it so I think its about time I injected some positivity into this blog). The lunch was lovely, I say my good byes to them and off I head back to Manchester. I can’t really remember what set me off, it may well have been the depressing sounds of Adele (don’t get me wrong I do love Adele’s voice, she can actually sing compared to the previous bloke)  but you do have to be in a certain mind-set to listen to her and clearly I was an emotional wreck that day. I think I cried the entire hour home down the M62. I remember driving up to some traffic lights taking my sunglasses off and turning my head to the side and this guy in a white van clearly saw me sobbing my heart out, he wound his window down to say “are you alright love” to which I tried to nod back and gave a slight smile to appreciate his kindness. I think I cried pretty much all weekend. Lots of different thoughts, of which I won’t share with you, as I appreciate it’s a Sunday night and most people have the Sunday night blues at the best of times, but the moral of the story was me feeling quite sorry for myself.

This week just gone, was probably one of my lowest. Whilst I am still tired and my breathlessness is still there in the wings, I have rested as much as I can so that I can try and fight this journey that little bit more. After all, I think we are only just at the beginning of a very long and unknown journey. And as they say what doesn’t kill you makes you stronger!

Gem xx    

Looks can be deceiving

Dear world,

First of all I wanted to say a big thank you to everyone who has read my first blog and for all your comments...I have to say I was very overwhelmed by the responses I got. A mixture from people who knew my story, through to people I’ve not seen or heard from in years. Everyone has been so positive and I’m sorry to the people who I made cry, it definitely wasn’t my intention! I guess I’ve had 20 months to come to terms with it, whereas I suppose in less than 5 minutes of reading my blog there was A LOT of information for you to take in.

I have to say I’m feeling a bit of pressure about this blog; hopefully it will live up to my first one!! If not I’ll have to stick with the day job. I’ve been thinking long and hard about what topic to do for this one, and I feel like I have loads to share but I’m conscious I don’t want to sound like a girl on her soap box. So like I did with the first one I’ll just go with what my gut tells me, after all I am a girl who wears her heart very much on her sleeve. So here goes………..

If I had a £1 for every time I heard “you don’t look ill” (well I would definitely be able to afford more than a 2 up 2 down house in Cheshire I can tell you). I think this is one of the most frustrating things of having PH; well apart from actually trying to live “normally” day to day. I’ve learnt since the diagnosis, people have this misconstrued opinion that in order for you to be ill, you must look ill, ie. be grey, gaunt, miserable, be in a wheelchair or walk with some kind of limp. On the outside I look like any “normal” 31 year old girl, bar possibly a few more wrinkles than others. But on the inside I can tell you it’s a very different story. On a daily basis the condition causes my feet to swell so much so that they look like elephant feet, or sometimes they just get so red and ridiculously hot that it looks like I’ve just been sunbathing, wrapped my whole body in a beach towel except for my feet and burnt them! Often I get to the top of the stairs and am so out of breath my heart will be racing so fast it actually feels like it's about to jump out of my body. 

I’ve always been an independent woman, I travelled on my own for 4 months around New Zealand, Fiji and the States; I have lived on my own, dependent to no one, but now I am traumatised of a blue square card. A few months into being diagnosed with PH I was granted a disability badge. Something which even now 16 months on haunts me, and whilst I write this I can feel my heart race that bit quicker. Why you may ask? Well we live in a society where we are judged. We’ve all read the Daily Mail online at lunchtime eating our sandwiches, where the headline is “another fraudster playing the system: has a blue badge but is caught on camera being able to walk”. We all tut and think what a sponger, we all pay our taxes (well maybe not all) how can they get away with it?? I hold my hands up, I used to think exactly this way. You may laugh, but I still now when on the rare (even rarer than me having PH, which is quite rare, as I would have more of a chance of winning the jackpot of the euro millions than being diagnosed with PH) chance I actually use my blue badge, I glance around to check there isn't a Sherlock Holmes look-a-like hiding in the shadows ready with their camera to catch me out, so that tomorrow so I’ll be the one plastered on the Daily Mail website!

Seriously though, Andy gets so frustrated by me not using the blue badge. It’s meant to help ease my life but instead I’ll end up parking in the furthest away space just so I don’t get judged or looked at differently. I try to convince myself I’m not that ill, that I can walk that extra 100m even though I know in my heart of hearts I probably am over doing it, but I’d rather try and deal with the pain I cause myself rather than having someone else’s eyes judge me which lasts for far longer.

We went to Chester Races a few weeks ago (which I may add, the day after was the day I wrote my first blog). I had been looking forward to it for ages, bought myself a new dress (there is a funny story to tell about this episode which if I don’t ramble on too much now I might be able to add in at the end) did my hair all pretty and spent hours in the mirror trying to cover up my ridiculously red face, which unfortunately is one of the side effects of one of the drugs I am on. Wherever possible I try to forget I have PH, I want to be Gemma the girl who used to be a party animal, the one that would always be the last one standing, who would always demand a dance off with any girl or boy who tried to challenge me, always up for a laugh and the impulsive one who got so drunk she thought it would be a great idea at 2am to book a flight to Canada for the following morning, to go and sit in a boat watching barefoot waterskiers for a week. True story. And in case you were wondering I did make the flight at 7am hungover and feeling extremely sorry for myself.

So we arrived at Chester Races and I realised quite quickly I was going to be in trouble, we were in the posh bit apparently but it was all standing, no seats. Going back to an earlier comment, my feet when standing for any longer than say 5 minutes get so swollen and become incredibly painful. After a lot of walking back and forth from the bar to the betting stations my body just started to give up. Which when you are surrounded by 50,000 people it’s not the best situation to be in. Luckily for me I have the best boyfriend in the world who can read my thoughts and he went on the hunt to get me a seat. So we ended up in the disabled bit. Well you can imagine my thoughts, “girl at races, in heels walking, takes up seat in the disabled area”. Definitely, I was going to be in the Daily Mail on Sunday morning. I got a few stares from the security people who were blocking the entrance to the disabled areas as though it was the VIP place. I managed to ignore the stares for a bit and got back to having fun at the races and cheering on my one horse that won . Then this guy who clearly hadn’t seen the big wheelchair sign tried to come in and grab a seat. The lady in charge very kindly informed him that the area was only for disabled people. He looked at me and that look of pain came stabbing in my heart as he shouted to anyone who would listen “well what about those 4 over there, they aren’t disabled, they are clearly playing the game.” All I wanted was the ground to swallow me up, the looks we got as though we were frauds. I wished for that second I had an illness that was known that you could say I have this or I have that and then people understand, but alas, PH isn’t well known or heard of so people don’t understand how simple living can cause great pain. From then on I couldn’t fight off the demons in my head, “you aren’t normal, you can’t do normal task anymore”. Unfortunately it ruined the rest of the day for me and I’ll admit I did have a weep on the train back thinking if only people could understand for one second what we with PH have to live with.

When I was newly diagnosed I met a lovely girl Sarah, and it became apparent quite quickly we have very similar interests and dreams for the future and also were the same age, so we had a close connection. Sarah has been a great support to me and a great confidant when this disease makes you hit rock bottom. She has a different type of PH to me, as there are quite a few different versions of PH, all still the same incurable disease but hers is secondary which means hers was developed due to another condition she has, whereas mine is primary which basically means it has formed on its own. You may remember from my last blog, mine is called Idiopathic which in a nutshell basically means they have absolutely no idea why I have it! Helpful when you are trying to come to terms why I am one of the 3,000 people with the condition! Not!

So I went to see Sarah a few months ago when unfortunately she was back in hospital due to her lung collapsing and she was asking how I was coping with PH and I mentioned how tired I get from doing normal chores etc. She suggested that I start using my wheelchair more. Now as we have learnt already I am traumatised by having a blue badge so you can guess I am even more traumatised by being in a wheelchair. I feel like it defines me and again the whole judgment by other people seeing me differently than if I was standing up.

Now a funny story (I mean we haven’t had a laugh for a bit yet have we?!) we drove to the Trafford Centre and tried to find a disabled space, well they were all full! There was a space next to them that wasn’t a disabled spot and Andy said “just go into that one”. I instantly snapped at him and said “if I’m going in my wheelchair I am going to use a disabled spot”. So we spent about half an hour driving round the Trafford Centre to find a space! Total waste of our time granted but it was the principal of the matter, I had to have one perk to actually using my wheelchair.

Anyway I digress. So we had come to find a dress for the races. So off we go Andy pushing me, I think he likes pushing me as most people who know me know I am the bossy one out of the two of us. Normally I’m dragging him into lots of shops, this time though he got to ignore my pleas of going where I wanted to and he just ignored me and took me where he wanted to go! So in the end we arrive in John Lewis and one thing these shops aren’t designed for is to have a wheelchair go around the racks. I think we may have run over a few clothes that were on the floor and at one point I thought I might drag a whole rack with me as one of the hooks got caught on the chair! In the end I got so frustrated with saying to Andy “slow down” or “go back to that rack” or “turn left” or “turn right” I got out of my wheelchair and started to walk around. Well the looks I got from people. Quickly I shouted out “it’s a miracle, I can walk!” Andy and I had a good giggle to ourselves and it was probably the first time I actually didn’t care what people thought of me for being “disabled”.

Gem xx