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