Local MP Letter

Dear Readers,

So this evening, is an unexpected blog post. I didn’t expect to be writing this. Today, after work, I arrived home to an official looking letter. Yes, it was a letter addressed from the House of Commons. I had not expected a letter back so soon or if any letter would arrive. As last week, I had written back to my local MP to address the letter I had received from Jeremy Hunt. 

To my utter horror, I needed to address the part of Mr Hunt’s letter, stating smoking and obesity to be an underlying cause, and that initiatives were in place to reduce numbers of cases of Pulmonary Hypertension, is in fact an incorrect statement to make. This is very worrying that people in this position of authority do not get their facts right or do not do enough research to address what’s been said. I felt astonished that the things which were said, were so incorrect. 

So now I’m here addressing this further letter from my local MP, Mr John Spellar. Firstly, I have to say that even his letter is a complete let down. Why in the first place could this man, at least attempt to try and take some interest in Pulmonary Hypertension. No, Instead he presents me with a cop out. This man seems to have no care about what his constituent is saying about Pulmonary Hypertension. Also, to even say that obesity is a contributing factor is so totally wrong! 

I’m putting this matter straight! Neither smoking or obesity contribute to Pulmonary Hypertension! I myself have CTEPH. CTEPH is caused by blood clots turning into fibrosis tissue which then in turn narrow and block the arteries. This then over time makes it difficult for blood to travel and pump round the body properly, which then eventually starts to cause heart failure. 

I know of many people now who have PH and some have PH through other diseases, some through problems with the heart. Children get PH and I don’t suppose these children are smoking 50 a day now, are they!! 

I find the comments and statements in these letters totally ridiculous! Where are we even getting these ideas from?? 

Therefore, here is the letter from today that I have received. Make of it what you will... For me, it is beyond words...

Thank you for reading

Sharon

Cornish Holiday

Dear Readers,

So back at the end of May, beginning of June, I went away on holiday to Tintagel in Cornwall. When I booked my holiday, I decided to go away for the whole week. It’s the longest time I’ve been away on holiday since having my PTE operation. I was somewhat apprehensive about being so far away from home. 

However, being away for the week was a massive accomplishment for me as I worry about being ill when I’m away from home. The last time I was away for a week was back in August 2016 and from what I remember of this holiday is that I was far too ill to be there and which in turn caused me a whole heap of trouble. If I had known at the time that I was walking around with heart failure and a medical condition called CTEPH which could have killed me, then I would never had gone. I guess in my mind I wanted to carry on doing the things I enjoyed but by this point, it was far too difficult for me to walk very far. The trauma from this time, gives me anxiety, but this time I managed to get over the awful feelings of that time and put it behind me.

When I arrived in Tintagel, it was around half past 5, so this left me using that time in the early evening to recover from the journey to Cornwall. I became accustomed with my surroundings and made myself a late lunch. I felt quite at peace with the beautiful surroundings even though a storm began to brew. It was funny that evening as we had thunderstorms at night. As Tintagel feels like a mythical place, I just thought it was a Cornish weather thing. Later on, I found out from back home that the storms had been quite bad. I find myself quite amusing now and a bit dippy at best! But this is me all over. 

The many days I spent in Cornwall, I did some major venturing out. On the Sunday, I decided that I would venture down the road to Tintagel Castle. Tintagel is a quaint little village on the North Coast of Cornwall. It is renowned for it’s association with King Arthur and the Knights of the Round Table.  The main attraction there is the Castle ruins which stands on the high cliffs. Arriving there, you can almost feel that it’s a mystical place to be. As I began to walk the hillside path down towards the bridge of the castle, I began to wonder how on earth I would walk back up when I had finished. Luckily for me, I spotted that there are Land Rovers that will take you up and down the footpath. This was a good thing to know, as by the time I’d finished my tour around the castle ruins, I was in no fit state to get back up. 

One of the many challenges I face now after having had surgery, is my ability to walk up hills. Some people make think it’s too much of a challenge so won’t attempt it. However, me being me, I’ll try anyway. When I actually arrived at the bottom of the cliff to the castle, I found it somewhat daunting as I didn’t think I’d be able to get up the steps  to the top. So I spent the first 5 minutes at the bottom of the cliff psyching myself up. Eventually, I began the walk. Thankfully because the steps are narrow, people had to stop start, which was a good thing for me as I would have found it hard to get to the top with people behind me. Eventually, when I arrived at the first section of the castle, I needed to stop as I was starting to struggle to breathe and could feel my heart pounding out of my body. I sat for at least ten minutes, whilst taking everything in around me. 

       

 

After achieving getting this far, I knew I must carry on. So each part of the cliff that I continued to walk up, I made sure I took my time and had rest breaks. What I wanted to see more than anything, was the bronze statue of what I interpret to be King Arthur and Excalibur. I think it’s up to the viewer to decided what the statue represents.

Moving on from the myth of King Arthur, I visited many other places, which all had their fare share of hills. Another beautiful place I visited and very much enjoyed was Port Issac. I didn’t see Doc Martin though, as this place is associated with the programme on ITV. Port Issac is quite hilly. I decided it was a great idea parking at the main car park, which getting back to when your legs are in pain, isn’t the best. However, I have learnt where it is best to park for future reference. Port Issac is a an idyllic fishing village with many little quirky shops. I like those little shops with little unique gifts. I spent my money on a Port Issac sweatshirt and mug. 

                  

Whilst I was in Cornwall, I also visited some National Trust properties, as I always do now I am a member. I visited a place called Lanhydrock, which is near to Bodmin. Lanhydrock is a  magnificent late Victorian country house and estate. In 1881 the house suffered a devastating fire. However, the house was refurbished  in high Victorian style by its then owners. 

I enjoyed many things that week, but what I enjoyed the most was getting back some normality in my life. As I have had a life saving operation, it is important to me to do all the things that were before too hard for me to do. Yes, I still find a lot of things trying or exhausting but this time I feel like I’ve been given back my life so why waste what I do have. I have distal clots which affect my ability to walk up hills and for walking long periods of time, but I still try at my own pace which is comfortable for me to do. I think this is what helps me each day - knowing what my capabilities are and limits, which I didn’t listen to before. 

Thanks for reading. 

Letter to MP

Dear All,

It’s been a while since I last wrote anything on my blog. So tonight, I decided that it’s about time I started again. Tonight’s subject is all about writing to my local MP. 

At the start of the year, I decided to write to my local MP about PH. I felt it was time to start trying to put my message across and raise the awareness. My decision to do this was based on the fact that I’ve found that a lot of PH patients have found that it has taken a long time to be correctly diagnosed. Many, like myself have had this condition for years without knowing. I found myself at stage 4 heart failure before anyone could correctly diagnose me and this I found to be overwhelmingly, traumatic. I never realised how much this had affected  me until recently. This was when I partly decided that something needed to be done. My belief is that no one should have to go through what I did. I very much want to see a change. 

My first letter wasn’t entirely what I thought I’d receive from my MP. My MP decided he would take the matter up with Jeremy Hunt. This he did and I received a letter back. To my dismay, the first letter from Jeremy Hunt, turned out to be very generic and seemed like a ‘copy and paste job’. So after some discussion with PHAUK about the letter I received from Mr Hunt. I decided it would be a good idea to write back to my MP explaining that the answer was not really answering my questions. So then came the response from my MP that he would demand answers from Mr Hunt if I wrote back to him in another letter. This I did and so the letter was passed on to Jeremy Hunt.

In April, I had wrote my second letter to Jeremy Hunt which was three pages long. Now looking back, it feels like I have wasted my time. The letter I had from the Secretary of State was unacceptable. What made me more angry than anything was calling ‘tobacco and obesity’ an underlying condition of PH. Well Mr Hunt, all I can say is either you need better advisors or you need to do better research. I still now, do not know where his logic is coming from. How are these initiatives really going to help when it’s to do with tobacco and obesity...?  This wont help someone with PH!!!

PH is caused by many things. My type of PH was caused by blood clots in my lungs that formed into tissue that caused blockages in my lungs which then created the high pressures from my lungs to the heart. However, this is not the same for everyone. 

There are five types, of groups, of PH: 

Group 1Pulmonary Arterial Hypertension

• Connective tissue diseases (certain autoimmune diseases)
• HIV
• Liver disease
• Congenital heart disease
• Sickle cell
• Schistomaiasis                                      

PAH  can also be inherited and in some cases appears with no known cause

Group 2 PH

Is caused by conditions that affect the left side of the heart. 

Group 3 PH

This includes certain lung conditions:

• Interstitial lung diseases
• Sleep apnea

Group 4 PH 

Blood clots in the lungs and other clotting disorders also known as CTEPH 

Group 5 PH

• Polycythemia
• Sacrcoidosis
• Thyroid disease

This is just a quick break down, just to show causes of PH. So when someone comes out with a completely ridiculous comment, it does make me feel quite angry. I’m no medical expert, but I can do enough research to find these answers out. I feel it’s a pity that Mr Hunt could not do the same!

My conclusion to all this is that, this man does not particularly care and as always talks his way around it. Never giving a straightforward answer.

I shall continue to peruse the subject in what way I can, and I hope that the information that I have now provided to PHAUK, can make some kind of difference. My letters have been forwarded to PHAUK and they seem to want to use them with a strategy they are currently working on. I truly help this will help make the difference I was looking for in the first place. 

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Support Groups

When I was diagnosed with CTEPH, it became very clear to me who would be able to handle my diagnosis and stick around. Those that couldn’t soon disappear and those who didn’t want to understand made this clear - and they know who they are! Unfortunately, this is just one of those situations where tragedy occurs, where it brings to light who is worth it and who isn’t. It’s a hard lesson to learn but still one that has to be learnt so that you can become stronger in yourself. In fact, if it wasn’t for wheedling these people out, then I wouldn’t have come to realise how strong I truly am. 

Moving away from this, several of my friends really did make a big effort and came out of their way to see me. My one friend Claire went to great lengths and came all the way from Manchester to visit me whilst I was staying in Royal Papworth Hospital. This meant a great deal to me at a time, when I was starting to feel like no one actually cared about me or what was happing to me. It’s quite a lonely place when you are so far away from your own home and there’s no one to keep you sane or keep you positive. Seeing her brought a smile to my face. I wished I’d been in a better state at the time as I had hardly any voice and all I wanted to do was chat lots. Also, I wasn’t exactly looking my best at the time, but I’m sure that didn’t really matter. I thank her on here because I will never forget what a true friend she was to come out of her way to do this.

So anyway, this leads me on to what the point of this post is about. This weekend I decided to go to a Papworth support group. It wasn’t until recently that I discovered that there are groups on Facebook that you can actually join. I think it was around September, last year, that I discovered the PHA group and following this I then found out that there was a separate group for CTEPH patients. Both groups have been amazing to join as I’ve felt like there are people there that understand and you can always ask for advice. Discovering both these pages helped me also find the Papworth support group too. 

So on Saturday, I found myself driving all the way down to Cambridge to meet people that I’d already spoken to online, on the two pages I’d joined. I was feeling a bit apprehensive at first because I wasn’t sure how things would go and I’m always a bit quiet to start with. When I arrived, I had a lovely, warm welcome from a lady called Michelle who was introducing me to people. I started to feel quite relieved and at ease.  I did start to feel as though I’d known them for ages after chatting to them for a while. 

The talk was given by one of the PH nurses’ which was very informative and talked about balloon pulmonary angioplasty as well as pulmonary endarterectomy. As you all well know, I have had a pulmonary endarterectomy so I’m already converted to the idea. I learnt more about it whilst there and new things I hadn’t realised. I somehow wished I’d known these things beforehand but not that it really matters now. 

So the importance of support groups is a great thing to have. Having a rare illness, you think there’s nothing out there for you. There are so many cancer support groups and other such groups out there but not much for us ‘rare’ people. It’s an amazing thing to have, when you find it, as you can talk to people who actually understand what you’re talking about. Saying to other CTEPH patients that sometimes some people don’t always get it because if you’ve had the operation, people will just look at you and think, well you’ve had an operation so you must be fine. I find quite frustrating.  Although, I’ve had the operation, what they don’t understand is that I still have PH due to still having clots in my lungs, that are in very awkward places that can not be removed. Trying to explain this to people who are well and do not really understand this illness doesn’t always work. In which case, there’s no point explaining it. 

I do try in many ways to educate people on PH. Having said this, people do not always want to listen because it’s not happening to them. If it’s not happening to you then why should you care? Well, we never know what’s around that corner, do we? One day you could be perfectly fine but then the next it could then suddenly develop. 

It’s been a long path to get to this point but a path I’m glad I’ve found. 

Coughs and Sneezes spread diseases

Dear All.

It seems we are still in the cold and flu season at the moment which hopefully will be ending quite soon. However, it occurred to me today that although a simple cold or cough can be harmless to most, there are some people that once getting a cough or cold can struggle with their health because they may have a pre existing health condition. 

I have PH and luckily so far this season I’ve only had minor colds. I tend to dread the winter months because of chest infections. Once I get a chest infection I struggle greatly with my breathing and this can therefore knock me off my feet. Several of my friends also have asthma or COPD and so if they catch anything, they too struggle. 

The most annoying part about living with a health condition is that sometimes people do not have consideration for others that have health issues. Although, these people can cope much better with a cough or cold, we don’t. So when someone decides it’s a good idea to sit near us, we do not appreciate it! I sometimes feel that these kind of people do not have the understanding about us and how we try to cope. I know myself when I only had a mild cold this winter, I did feel as though I was somehow having some panic attacks because of the feeling of not being able to breathe. This certainly is not a nice feeling and feel that for me that this fear of not being able to breathe comes from just before having PTE surgery. At the time, there came a lot of trauma about the situation and so some of it has stuck with me. This is the reason that I don’t want people near me if they have got colds or infections. I do not appreciate it. 

Also, what is very annoying about my condition is that most people see me as someone who has had an operation so this apparently means I’m fine in some peoples eyes. Yes I have had an operation but I am not totally cured because of the pressures in my heart from the lungs. I still have a certain amount of scarring left which I now take medication for. Some of these medications actually lower our immunity so can be quite easy to catch things. 

I find there are a rare few that will tell me if they have picked up something and will say to me to steer clear of them. I do not mind this because I know that they are considering my health for me and I’m certainly not offended by this. I much prefer people to tell me. In the meantime, though, I feel I have to be a bit rude and say that I don’t particularly want someone who is ill around or near me. Although, some do NOT take the hint! 

End of the year - New Year

So Christmas is over and we are coming up to the New Year. I know some people tend to not like New Year, I myself do not always seem to like it much myself. However, this year I do not mind it so much. To me it means I’ve managed to make it through a whole year since my operation. It’s been a year filled with what I now call FIRSTS!

Until last year, I struggled doing so many things. Everything seemed so frustrating at the time. My main frustrations were not being able to walk very far. Although, it had been a gradual descent over the years, last year had become the most noticeable for me:I longed just to be able to get up a flight of stairs without having a rest half way, I also longed to be able to do just ‘normal’ things with friends, without getting exhausted. At times it was completely embarrassing that I was not able to walk more than ten yards without getting out of breath! The most frightening time I had with my deteriorating health was on holiday, last August. Now I know it was the biggest mistake I could have made to go when clearly I wasn’t well enough to be there. I felt I could cover up just how bad I really was. I had no explanation for why I had got this bad, so it seemed easier to pretend I was O.K. The worst memory of this holiday, was when I had to try walking to a place where there stood some ancient stones. I recall getting out of the car and trying to make my way across the field. I literally had only walked a matter of yards and was beginning to struggle to breathe. My chest began to feel like it was constricted and the palpitations began to start. I almost felt as though I was going to faint. I saw some small stones in front of me and had to sit down on them  to let the feeling stop. I remember feeling tears welling up in my eyes because I felt overwhelming frustration and anger. All I wanted to do was to be able to walk. In the end we had to give up because I would have had to walk miles. I couldn’t walk yards, so miles would have probably killed me! That day continued to prove awkward for me. The next place we visited was an old castle ruin. Places like this I truly love. They have this sense of atmosphere about them. Unfortunately, the overwhelming fainting feeling returned once more. I decided I want to walk up the stairs to get to the top to see the view of the Scottish land. There wasn’t just one flight to contend with though. As I began to walk the winding staircase to the top, I gradually started to fell the dizziness, breathless and the racing of my heart. I made it halfway, but then started to feel a panic attack emerging. I had to get back down to the bottom. When I arrived at the bottom, the feeling was still there and I thought the panic would not end. I was asked what was wrong and my response was that I felt funny walking up the stairs. The surprising response I had to this was a roll of the eyes, like I was deliberately trying to be awkward. My feelings were hurt by this but I kept quite and said nothing. That day ended pretty badly for me. Instead it turned me into someone who was apparently ‘just being awkward’. Because of it, it started an argument. One which I had not expected. I passed the situation of as nothing being ‘wrong’, however, this was not accepted as an answer, so I then said how hard I found it to walk. That was it then, a torrid of abuse came flying my way. I was certainly very shocked by the outpouring and was told, ‘you just have to get on with it’. I guess I was too stunned to give any kind of cone back, and to let the abusive words fall from that persons’ mouth. It’s something I shall never forget and I don’t think I’ll ever really forgive. 

So I guess this is part of the reason why this is my year of ‘FIRSTS’. I guess the awful feelings I had back in 2016, mean to me that everything that held me back, hasn’t really done so this year. All those things I longed to do when I felt so ill have not got in the way too much. My walking distance has gradually increased and I have learnt to adapt to this. I see now how bad a state I really was in, which took me a while to realise. Having had an operation, I can see the benefits. Although, I’m not 100% cured and still have residual PH, I make the most of things in my life. 

So if you ask me if I hate New Year the answer is ‘NO’ because it’s one more year that I have made it! It’s another year of doing things I dream of doing. I like to make the most of things because you never know when things can change and mean you can no longer do the things you want to do. New Years are not so bad to me after all. Although, last year I was most certainly glad to see the back of it! It meant to me that I could begin again. 

GP

Along this journey with PH, I’ve had good and bad times with medical professionals. Tonight proved to me that some are really dedicated to their job. I have one amazing GP who works at my surgery and is always very thorough with anything medical wise with me.

I received a phone call about a form I was given by Papworth to hand  in to the surgery, about having a heart monitor for 48 hours. The phone call also turned into a chat about my blood test results. Recently my test results have been coming back showing I’m slightly anemic. The doctor took the decision to prescribe iron tablets which is probably what should have happened on Monday when I visited the doctors but unfortunately I did not see the same doctor, so I came away feeling like this other GP was being a bit haphazard about things. The GP then also then phoned back and told me he thought I should have a thyroid test because of my rapid heart rate, just in case something had been missed. I came off the phone and felt highly reassured by what he had told me. It’s a real comfort knowing someone is taking things seriously.

When you have a serious illness like PH, it can bring some worry with it. I’ve seen various medics over the last few years and sometimes it has been completely frustrating as sometimes you’re not listened to. I can’t say that this goes for everyone. However, there are some medics out there that aren’t as good as others.  Tonight I felt the comfort of knowing that someone other than Papworth is keeping a watchful eye on me. Long may it continue as I’d be lost without this GP whom does his upmost for me. I can not praise him enough!

PH drugs

Today reminded me of many things about life and PH. I had an appointment back at Papworth, just to check how my new PH drugs are working for me. As I sat in the outpatient department, it reminded me how PH patients all differ from each other. Two older men were in the waiting room, both sat with oxygen tanks on their laps. I really felt for them and wondered how they manage everyday with the constant breathlessness, tiredness and everything else that comes with PH. Then my thoughts were taken from this and my memories came back to me when I saw someone who strongly reminded me of someone I once knew. I don’t know if it was the mannerisms or just the look deep in the eyes but it was something so familiar to me to me. I have to admit but these kind of reminders always take me back to happy times, but then becomes marred with anguish at the awful memories of last year and feeling of being dreadfully let down.


Anyway, now back to my purpose for my visit. In November, I had, had a right heart catheter performed on me. The only description I can give of it is that a long wire is fed through a vein in the neck, down to the heart. The results from this simple procedure were that my heart pressures had worsened since I had the test last done in February. It was very unexpected news at the time and made me realise now that this is now something that isn’t going to go away. This being something that has been confirmed to me today.


Since November, I have been taking a cocktail of two PH drugs - macitentan and riociguat. Originally, I took macitentan with sidenafil from last November last year to February this year. In February, they stopped the macitentan and kept me on the sidenafil. They were delighted by the progress I had made taking both drugs, so felt that taking the one away and replacing it with another new tablet would work out well for me. By June this year, it was decided it was now time for me to try the riociguat. I guess the hope would be that I would be ok on just the riociguat, however, this was not to be the case when I had all tests performed on me back in November, they didn’t all come back as good as it was first thought. My first reaction was one of shock, I somehow believed that there wouldn’t be an issue but I knew in my heart that deep down, not much had changed for me. I was highly aware that I am not the same as my peers and struggle to keep up with people. I do not outwardly show this, but I feel it in my body.


So today’s decision is for me to now move back to the sidenafil rather than taking the riociguat with the macitentan. I guess I knew this would happen but I had hoped that the combination of the two would give me outstanding progress. I wish I could say I somehow feel lots better, but I guess I feel more or less the same. Although, it seems to sound awful, it’s nowhere near as awful as I felt last year. Giving the plus side, I can now walk that bit further than I used to and I am no longer passing out on people. Also, I know I’m in the care of specialists who are working to find the best PH drugs for me.

Papworth part 2

My night in critical care seemed to feel like one of the longest nights I’d had. Some parts I remember, but bits I can’t quite recall. What I mainly remember is being put into one of their hospital gowns and  a line I had put in my neck. The worry at the time was that they were going to have to operate the following day. However, over night I was comfortable and did not have anymore funny turns. I knew at some point I would have surgery, so I think I must have spent most of overnight asking all these questions about what happens. I felt the need to know every detail, so I could prepare myself. I guess I had many feelings about the surgery and one memory I remember more than any was the fear of coming round from the op with a tube down my throat. For some reason, I feared this more than anything. I watched patients in critical care that were coming round from their operations and could see they were kind of awake. I guess I felt I just didn’t want the awareness of a tube in my mouth. I thought it would make me gag and I’d have to pull it out or even that I would feel like I couldn't breathe. I also feared the op itself. Knowing someone is going to open you up and cut your breastbone open to expose your organs seems brutal.  I had to accept it though, this was what would help make me better I hoped. I could not go on any longer trying to walk only a few yards and the feeling of fainting just frightened me.

 You start thinking all sorts, like am I going to be aware, or will I feel something. These questions all seem silly now but you try to imagine what it’s going to be like. I also feared death. I was so ill at the time that later I was told I had only been weeks away from death. I guess all my wrongs I wanted to put right, if I were to not come round from this operation and die. The thought of death frightened me more than anything. I was afraid that I would go to sleep and never wake up. When faced with this fear, you want to put all things right that you have done. It wasn’t guilt I felt, but the need to reconcile with all that had gone on in that last year. When your near to death, it makes you try to reach out in ways you would not believe. It’s something I still can’t explain to anyone now. All I knew was death was very near by and I didn't want my life to be over.

Within a week, after being taken to critical care, I had my PTE surgery. All was explained before my operation. I remember being given a book about the surgery, but I had so much of it explained to me in critical care that reading it too was just too much. I only knew that I wanted to be better and with the surgeon telling me that I wouldn’t walk out of the hospital again with out PTE surgery, I knew there was only one choice for me to make...

Papworth part 1

So now it’s a year after my diagnosis. It’s been a year filled with doing all the things I was unable to do last year. Getting back to some sort of reasonable state of walking has given me determination. I still don’t find all things easy, however, Papworth certainly helped to make a noticeable difference.

I’d like you to imagine the constant struggle for breath, the tiredness of walking a few yards and feeling this everyday for 24 hours! Can you truly say to yourself that you can imagine life is simple and easy. Now imagine walking across a field, and it is flat, however, you have to walk a few miles, but feeling like you’re heart is doing the marathon and you can’t keep up with your peers. That’s how I felt every day. My not being able to walk was never an excuse like some people had claimed to me, I quite simply could not walk. Over the months before my diagnosis, I struggled with simple tasks. Often when walking or going up stairs I’d feel faint. I’d have to sit down constantly because I just couldn’t breathe. My frustration was fierce, all I wanted was for someone to tell me why I was like this.

When I was finally told my diagnosis, I still had some frustrations. Mainly due to the fact I knew this was worsening, but also because some people still had no belief that I was so ill. It was only when I fainted at home, walking up a flight of stairs that I knew the deterioration in my health was happening. That night I was taken by ambulance to my local hospital. Somehow I felt relieved. For weeks I had reacurring feelings of lightheadedness, palpitations and shortness of breath from just sitting. My relief was that someone had to start listening to what I was saying. In A&E I felt my shortness of temper with the doctor, whom wanted to send me home. I had to battle with her to say what was wrong and that I was waiting to see a specialist. Luckily enough for me, I saw the specialist at the hospital the following day. I recall having to be wheeled up from EAU to see my consultant. It was the first time I had met this man and my opening line to him was, ‘I didn’t quite expect to arrive here like this! The consultant was very understanding and read all my medical notes. Once I had explained to him what had happened the night before, he told me that now I was fainting, this was not a good sign. I have him to thank because at last I was going to be sent to the specialist hospital. He rang Papworth not long after we had spoken. Within a few hours he came back to tell me to say I would be transferred from their hospital to Papworth. I can’t explain the relief I felt back then. Within a matter of days I was taken in the hospital ambulance to Papworth.

Arriving at Papworth gave me real hope. I knew this to be the specialist hospital with it’s own PH team. Within ten minutes of arriving I remember a team of specialists coming to speak to me. The consultant doctor who first saw me gave me raised my spirits as she knew what she was talking about. This was the first time in all the time that this had been going  on that someone knew what they were talking about. Everything I had told her made sense as she could explain to me what was happening to me. Over the next few days I had several tests done. The main test being a right heart catheter. This diagnosed properly that I had PH. The MRI scan then showed exactly where the scar tissue was and luckily for me, I was told a lot of this could be removed. However, I was also told that some of the scar tissue could not be removed, so this meant I would have to continue with medication after the operation because I would not have a complete cure. 

Originally, after being told I could have the PTE surgery, I was looking at waiting 3 weeks in hospital. Typically being me, I caused problems for myself. Whilst taking a shower and then getting changed, I felt the shortness of breath starting and I knew I needed to get back to my bed. My bed was opposite the bathroom, so you would think I would make it back in one piece. No, not I ! I got to my bed, sat down and then felt the sudden feeling of faintness. I knew I was going to pass out, so I reached across my bed to press the buzzer and shouted for the nurse. Next thing I recall was waking up with two nurses next to my bed. In the commotion I panicked because I could not get my breath. The nurses tried to put an oxygen mask over my face but I felt all the more claustrophobic. Having a fight with two nurses that are trying to help isn’t a brilliant look and neither is me screaming in agony. Next thing I knew, there was a whole crash team there. All I recall is crying out in pain and being injected with something to take the pain away. What I was later told by doctors was that my blood wasn’t pumping from my heart to my organs.I guess my organs were in some sort of shock. I then spent that night and the next week in critical care. The whole experience was traumatic to say the least...