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. 

\