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