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...