Anything is possible

Dear world,

So I’m here down under (as we Brits call it). I’ve been here exactly a week now and my god time has flown by so quickly. Feels like I’ve been here all my life and very quickly I have settled into Beaconsfield (a south eastern suburb of Melbourne). Part of that is down to the generous hospitality of Katie and Jono as well as my instant love of Melbourne returning as soon as I landed. Although when I did land I genuinely had to check we had arrived in Melbourne and not in Manchester as I could have been forgiven for thinking it was Manchester due to the torrential rain I arrived to. But luckily whilst it was raining it was still relatively warm, something that Manchester is rarely.

What a busy first week I have had. Katie not allowing me time to suffer from jet lag, booked me up with lots of new exciting adventures. First of all driving what felt like back to the UK to get to Warrnambool, a south western suburb of Melbourne where we spent the weekend. Catching up with some friends I already knew and met some new faces that I didn’t. It was the first part of our Come Dine with Me extravaganza. Trotters and Uska did the first night and wow did they go all out. Can tell they had their eyes on the prize – a wooden spoon! Ha joking! I met my CDWM cooking partner Juzzy for the first time and he turned out to be a terrible influence on me, making me down shots. Since having PH my drinking has taken a back seat (ok well maybe not the day of the brunch in Dubai – blame my mum for that one) but I haven’t touched shots since sometime in 2013. Well you can imagine the state I was in…….oh wait you will have seen the photos! Juzzy and I did our night on the Saturday night and thanks to Juzzy we were both suffering a lot on Saturday whilst we prepared our food for the evening. The food was a highlight shame our conversation was a non-starter and by 11pm I was so deliriously exhausted, jet lagged, emotional and hungover I announced to the table they were all to leave! Luckily they took it in good spirits and overall whilst our entertainment was pretty poor we had an enjoyable evening, well I did!   

 

Perfect timing, Jono had booked Katie and I into a spa hotel in Lorne, which is on the Great Ocean Road for her birthday present and a 2 day relaxing spa break was exactly what the doctor ordered, with the best body massage I have ever had. We did a few walks and a few drives along the Great Ocean Road to Apollo Bay. I do love the state of Victoria; it’s so green, unlike the rest of Australia. I think that’s why I like it so much, it reminds me of home just wish the weather in Melbourne could be like in the UK.  Now back at Katie and Jono’s I’m getting myself into some kind of routine – hopefully not too strict as I do like to be spontaneous and impulsive every so often.

You will know the story of when I was diagnosed and not being allowed to start what I had hoped was my new life in Oz back in 2013. I was led to believe that I would never make it back to Oz as my doctors were just too concerned the flight would be too much for me to manage. Plus in case I got worse whilst I was over here and couldn’t fly back. Well I’m delighted to prove the medical profession wrong and I didn’t even need oxygen! I am here! I came across a sign the other day which said “the greatest pleasure in life is doing what people say you cannot do!” For the first year or so of my illness I think I allowed my PH to dictate me, which is unusual for me, as I can be known to  be quite stubborn when I want to be! I guess maybe it was the fear of the unknown or how scared I was for my future and what that meant. I’m not sure when it instantly switched for me but since having Beth my personal trainer I finally feel slowly I have regained the control.  We know there is no cure, well apart from transplant (although I wouldn’t really call it a cure as whilst it cures you of PH the chances of you developing other diseases is very high, and there is a high chance of rejection, together it doesn’t necessarily make it the golden ticket everyone assumes it will be), but it being such a high risk process has started to make it something I’m not sure I’m willing to explore right now. Hopefully I will have a few other options first to explore than going straight into transplant. Currently I am reacting well to the medication and I would class myself as stable which is great news. But my main worry as the doctors remind me is the medication will stop working at some point, could be this year, could be in 10 years who knows but I am trying to find a way to slow this down. Now I am no medical profession, don’t think they would have allowed me into medical school with a C in Double Science GCSE, but I look at other chronic illnesses that have no cure and I know from a close connection that we can’t just always rely on the medical profession and medication. Take cancer and Multiple Sclerosis for example. I know quite a few people who have had cancer, who have pulled through it due to changing their diets, including fitness into their regime and engaging in meditation. I’m not saying that because they started to have green veg and did a bit of jumping on the spot for 10 mins that this alone cured their cancer, but I am becoming more conscious of how we feed and look after our bodies can directly impact negative or positive outcomes to them.  

So my plan to try and slow PH down is by fitness and diet. I’ve always had a good balanced diet, I was diagnosed coeliac in 2012 and this made me even more aware of what goes into food. I make all my food from scratch and with the influence of Deliciously Ella and Lean 15 I have started to have a really balanced and healthy diet. Now I know anyone reading this that has PH will be thinking how can she do fitness with PH, but starting off slowly and putting in what will feel like hard work eventually leads to it becoming possible with more ease. I spent pretty much the first 6 months in a chair, taking forever to walk up a flight of stairs and getting up out of bed would sometimes be impossible. Now I can do 30-40mins fitness a day, I’ve walked 4 miles in one day and apart from suffering with blisters (rookie mistake wearing flips flops) I am starting to live a “normal life”. I would always say check with your PH consultants; they know you better than anyone and what the state of your heart and lungs are, but even if you managed 5 minutes exercise a day whilst sitting in a chair that has to be better than nothing at all. It’s taken me the past 18 months to get to the point I am currently so it’s by no mean a quick fix and you have to be determined and passionate to do it, but I can honestly say this has to be the reason I feel so much more energized. So why not just add in one new exercise thing a day, whether its arm or ankle circles or some gentle marching on the spot for a few minutes, it will all help. I am now the happiest when I’m in my gym clothes and know that this is helping me gain a better quality of life.

For anyone who knew me as a child growing up to now, so pretty much my entire life, you would never have classed me as a fitness fanatic! I once went with my friends Dave and Dan to the uni gym. I say once as I made it only once the entire 3 years I was there! Well after 5 minutes of fast walking on the treadmill I got shooting pains up my entire arm, Dan joked and said I was having a stroke, and maybe in my defence it was an early sign of PH, who knows, but my point is I used to be so unfit and now I am the fittest I have been in my whole life. Ironic that it has taken me to have PH to get so fit! So if I can do it I believe anyone can.

Lecture over you will be pleased to know!

So what are my plans for the next few months I’m sure you are desperate to know. Well I’m looking forward to my first AFL game (it’s a well-known Aussie game that is taken very seriously over here – think a bit like rugby mixed with Gaelic football, I’ve got to brush up on the rules before the game…can’t wait!) and that is on Anzac Day played at the Melbourne Cricket Ground, again another first. We also have part 2 of CDWM so looking forward to more raucous and no doubt drunken behaviour. I am also looking forward to ticking off another bucket list point, which is to drive abroad. I have travelled so much in my life but never driven abroad and I know it’s probably not the most exciting of points but at least this way I can travel around a bit. I’m hoping to catch up with some old friends and no doubt with my impulsive character and my new found love of having fun I will be off gallivanting far and wide as much as I can over the next few months.

My first blog was named Fate and I said everything happens for a reason. At the end of January my whole world was turned upside down and at the time I thought it was the worst thing that could have ever happened, but now a few months later, I can honestly say this was the best decision I ever made and I’m now so excited for my future and whatever that brings and with whoever I end up sharing it with. 

Lots of Love,

Gem xx

PH has changed me - or has it?

Dear world,

I have learnt quite a few things about myself since being diagnosed which thinking about it now may have been there all the time, but I had no reason to ask myself about them before. I have learnt that I can face my fears; well, still not the electricity pylon phobia, but I haven’t come across a course where it’s safe to learn to climb a pylon yet and until that day comes I think I will always have that fear! Being told that I will never be able to have my own children and that my life will be reduced significantly, I have been able to handle being told that, and I have come through this a lot stronger than I ever thought I could. I think if you had known me as a teenager you wouldn’t recognise me today. I had always been independent but at the same time I was so insecure, I hated being on my own and I always felt such a weak individual. Having a year out before I went to uni really helped me and by moving away I started to learn who I was really all about. The one positive trait I can take away from having PH is I am glad to know that I am actually quite a tough cookie and I can deal with most things that are handed to me. I have had my dark moments but everything I have been told so far I have found a way through. As my dad has said to me on countless occasions in the past 2 years - put on a stiff upper lip. I’ve learnt to master the stiff upper lip quite well I think. These are probably the most positive attributes I have learnt about myself; unfortunately with most positives, there are some negative traits as well.

Looking at my parents it was always inevitable that I would be some kind of control freak. I mean my dad has to triple check that the garage door and cars are locked before we can go anywhere. What hope do I have?! When I met Andy he was so laid back and just had this relaxed style about him, no worries. I always envied him for that and for the first 2 years of our relationship I followed his lead, giving up my control freak ways and just going with the flow. I even carried on with this style into the diagnosis but eventually I could feel myself slipping from the ‘no worries life’ to ‘shit I worry about everything’. Having any disease is hard, but not knowing why you have it, I think is the worst. You can’t put it down to any reason - Oh I did this when I was younger, or I ate this, or drank that, or this resulted in me getting PH. I am a mystery to the medical profession; they can’t give me a simple shred of insight into why it was me that got this. Therefore, I have become this paranoid woman who over analyses everything, in case it results in me getting worse, or, worse still, developing another disease.

Until August 2015, I was getting to grips with how to live with the disease and apart from the odd set back, I was responding well to treatment. Since then, I have had a very up and down 6 months. In hospital, with many unplanned visits, mainly back on a monthly basis for one reason or another, then there was the talk of transplant which just started to bring all my negative fears to one place. I ended up watching one Friday night three episodes back to back of the ‘Gift of Life’. Whilst it was a great series and showed the positivity of organ donation, it was so scary watching it, whilst thinking at some point this could be me in the same position as these other people. For the last few months, I have found myself getting really impatient and snappy at the slightest thing. I can’t seem to shift the negative thoughts of my future and what this will look like.

Not one to normally cite an America statistic, but I have struggled to find a UK equivalent so bear with me and hopefully you will get the jist of my point. The divorce rate in America is 42%; for those with a chronic illness the divorce rate is 75% and even higher the younger you are to have a chronic illness. Granted, I won’t appear in that statistic for two reasons, firstly I’m not American and secondly I’m not married. However I thought it important to share these statistics as people don’t understand the real pressure and strain living with someone who has a chronic illness. Of course it’s bad for the person that has the disease, but it’s probably the same or even worse for the person who lives through it day in day out. They watch the person change in front of them and whilst they can be there to wipe the tears or carry them to bed they have the daunting future ahead without that person.    

Unfortunately, after a very tough decision Andy and I have split up. I’m not one to normally publicly announce feelings or situations, especially to the outside world, but as this was directly affected by PH and having started to write a blog about PH, I felt I couldn’t not mention it. Since being diagnosed, I have had so much support from family, friends and even strangers who I have never met, but have heard my story and want to pass on their best wishes to me. It’s been a real help and given me this sheer determination that somehow I have to beat PH. (I’m still not sure how I will do it but I’m not going to let it defeat me).  Andy, on the other hand, did not feel this same support, whenever he was asked anything it was “how is Gemma coping with it all”. To date, he has only been asked directly by 4 people “how is HE doing with it all”. I mention this as I think it is important to share. Not for anyone to feel guilty that they didn’t ask, even I didn’t at times, but it’s just the nature of us as human - your emotions tend to go straight to the person that this is happening to, rather than the one who is supporting the person.

I won’t lie; the last 6 weeks have been one of the toughest months of my life. I even think being told I had PH was easier to hear than knowing that Andy and I are over. Daft isn’t it, I can’t change the PH diagnosis but yet I find it harder going through a break up! I am currently going through a whole mixture of emotions, which is exactly what happened 2 years ago when I got diagnosed with PH, but I got through it then and I have no doubt I will get through this. I have had such amazing support from my sister, mum and dad, my best friends Katie, Lyd, Vicky and Amie  and my work colleagues who have been great lending me a sofa during the week. Everyone says to me time will heal. Unluckily for me, I’m an impatient bugger (get that from my dad) so I am removing myself from the situation and heading out to Australia for the next 3 months to go and see Katie with her new addition to the family, Benjamin. Trying to find a positive in the last month has been hard, but I am delighted to say, my health has shown that I am probably at the strongest I have felt since being diagnosed. Ironically, my heart is weak, but even heartbreak can’t make it any worse!! 

I have quite a few fears of which some of them have come to the surface in the past few years. I think it goes back to a control thing or lack of and therefore exaggerates the fear even more. One of the fears is flying. Silly I know, I have travelled the world by myself and been on countless flights alone but still it’s always been something that I hate. Since having PH I have been on a few flights, building up my hours each time to check I am ok on the flight. Physically I have been fine, but my issues have been more mental. When we flew back from Florida last November I got myself into such a state of panic that this in turn affected my breathing which then made me instantly think my PH was getting worse and think how was I going to survive the remaining flight at 40,000ft?? I came off the flight saying I would never fly again! So when I decided I needed to do what I do best and head off to warmer climates I thought I need to face this latest adversity head on. So I booked myself on to the Virgin Atlantic Fear of Flying course. I headed to Birmingham Airport to spend a whole day with 100 strangers all who have a fear of flying. It was a great day and ended with me on a 30 minute flight and I managed to not have a panic attack, and with some controlled breathing techniques I learnt and watching the “horizon” of a water bottle I am ready to board the flight to Dubai and Melbourne and head off to exotic places.

So I have lots to look forward to in the next few months. It just goes to show fate has a weird way of turning things on its head! There was me, planning a wedding and now I’m planning my Aussie adventures, at least this way will be cheaper!! My PH centre at Sheffield have given me the ‘all clear’ to fly and I have my 300 Viagra tablets to take through the airport, will be an interesting conversation if I get stopped at customs! I am back just in time to welcome my new nephew and then will be heading to London for a few weeks to help Leah out with two young ones. I will also get to spend time with my two best friends this summer, who live on either ends of the world, so I have lots to look forward to. If anyone fancies setting me up on a blind date I’m all ears!!  

2016 wasn’t the year I thought it would be. But that’s the beauty of it all, I suppose, life would be boring if it was meant to go the way we all planned.

Lots of Love,

Gem xx

PS. I have a beautiful wedding dress for sale if anyone needs one!

Pension pot or shoes and handbags??

Dear world,

As if this is my 9^th blog!!! I never really thought this would last anywhere near as long as it has, the support I have had from everyone has been amazing, so thank you all again. I have to admit though; this blog has been the hardest to write. I’ve had total writers block! Maybe I need to go and find myself in a forest where there are no distractions and then words will just flow out of me. But as life doesn’t slow down for anyone, I will just have to take the respite I am having from staying with my mum and dad.

So belated happy New Year to you all and your families. I hope you all had a good Christmas and New Year, albeit it does feel like a lifetime ago now doesn’t it. We had a busy Christmas, at Andy’s mum and dads on Christmas Day, which was my first experience of not having Christmas at my family’s house, bar the Christmas I spent in Sydney in 2006, where Katie and I ended up having a Greek Christmas meal on Bondi Beach front that cost us more than our weekly rent in a squat that we lived in! Fun times though. And it was the first time I tasted halloumi cheese which I very much enjoyed, even though it does squeak when you eat it, still find that a weird concept. We then spent Boxing Day at my mum and dads along with my sister, her husband and my niece. Marissa is just about at the right age now to get into Christmas. Granted she doesn’t really understand the whole Father Christmas story yet but she was quick to learn that most of the presents were for her and she opened them in rapid speed. New Year we were with friends and their 6 week old daughter. It was a messy affair with the boys and Amie doing shots in between the courses and whilst we didn’t do an official countdown (completely lost track of time) it was still lots of fun. So much fun that it took me 4 hours to get off the couch the next day as the room was still spinning. Good job I’m off the warfarin!

New Year’s Day will always be a poignant anniversary for me, as it was New Year’s Day when I nearly died (not to be dramatic in anyway), and was diagnosed with PH. Funny how quickly your life can really change with no warning, it just hits you. Well I am 2 years into having PH and I am delighted to be able to write that I feel the strongest I have felt since that dreaded day in London when I collapsed. The doctors are putting it down to the increase of the Viagra, I on the other hand have two theories. Since October I have had my very own personal trainer and each week slowly but surely I can feel myself improve. In 3 months I have doubled the amount of cardio I am doing (granted it’s now a massive 4 minutes) but it’s still a massive improvement from where I was last summer when walking up the stairs was a real challenge. My other theory is since the mention of transplant in August and going to meet the transplant co-ordinator in November, I think my body has decided now is the time to show that it can be as fit as it can be so that transplant isn’t on the radar just yet. I am slowly coming to terms that one day it is likely I will need a transplant but if I can delay that in any way by making myself as fit and healthy as possible then that’s my plan.

I stand by what I said in a previous blog, the hardest part of having this illness is the mental side. Granted the physical side when it’s at its worst is horrendous, but the mental side whether you are physically good or not is always there. To be told your life will 100% be significantly cut short is really hard to hear, and even harder when they can’t tell you how long you have left. Will I reach 40 or 50 or 60?? When you are poorly you just think its par for the course and live day to day, not thinking about the future. But as I am finding now when I feel, can I even say it without jinxing myself, “normal” I have started to consider more about the future than ever before. No one ever knows how long they will be on planet Earth for, and I’m sure if Richard Branson has his way we will all be up in Virgin’s Galactic in no time, but everyone assumes at least till pensioner age. So as most of my friends are now starting to build their retirement pot so they don’t have to work till they are 80, I’m at a bit of a cross roads. Do I join them and save all my extra pennies for the future on the off chance I defy all the odds and survive well into my old age, or do I spend my extra pennies on luxury treats as I won’t  be here post 40?! Cos what use is having all this money saved up when I can’t spend it from the grave?! Unless I am in luck and they have designer shoes and handbags up in heaven, then I will be in my element!

I look at this recent conundrum as a positive one. My health is for once stable and letting me get back to normality and to be even thinking about the future and whether I need to be sensible or just totally reckless shows that! I am hoping to whoever I need to pray to that we can find a cure and that I will be one of the lucky ones to hold out until that cure is found.

As always thanks for reading.

Lots of love,

Gem xx

  

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