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...