Showing posts with label transplant list. Show all posts
Showing posts with label transplant list. Show all posts

Thursday, 30 July 2015

PHighter Friday: Basil

I am a chronic optimist. I look for the positive in everything. It takes a lot to get me mad or upset and even more to shock me. When ever something negative occurs in my life, I try to look at it as “Is there a lesson to learn from this?” I am not a religious man. I do not conform to any religion. I am however, a very spiritual man, and it is these traits of positivity and faith that have mainly taken me from a man told eight years ago that he would need a heart transplant in five years, to the man I am today, with my original heart, still beating in my chest. And for all intents and purposes, it is now once again a normal functioning heart. And from the man in 2009 that was told he had pulmonary hypertension, and that the combination of conditions I had, probably only gave me a less than 50% chance of living to 2014, to the man I am today, now living without pulmonary hypertension and without a short term prognosis.

My journey with my conditions was, and is not an easy thing, but I never got negative. I never once asked “Why me?” I was given this journey, and I did not question why. If I needed to know, the reason would eventually show itself. What lesson did I have to learn? I never asked, because I also learned that sometimes our journeys are not a lesson for us, but a lesson for others.


I am tirelessly asked how did I get over having heart failure and pulmonary hypertension. What is the cure? What did I take? What is the secret? I didn’t go looking for a cure, or a magic potion. I thought about this hard and long and it was one simple change in attitude and thought that got me to where I am today.

When I started on this journey, I researched and researched and researched. I learned everything I could about all of my conditions and I could talk with my doctors in their language. They respected this, and it made it much easier to decide on courses of treatments to follow. And I stuck to the treatments. I became a dedicated pill man. And I would get better, and would have instances where I would fall back. It was all part of the whole getting better thing.

I did meditation. I exercised regularly. Took my medications. Researched what supplements I could take to support my journey. I was doing it all. I was fighting. But there is something I learned a long time ago. Sometimes, the more you push against something, the harder it will push back. But why was I pushing so hard? Was it for me? Was it for my family? What was it for? The bottom line was, I was not ready to die as yet. My wife needed me. I was fighting for my life.

Then, one day, I was going into have a medical test, and I saved a man from being hit by a bus on a New York street, and in the process, his phone was destroyed by the bus. The man was startled, but then he got angry. Really angry because his precious iPhone was destroyed. He started shouting at me. And as I looked into his angry eyes, I realized that it could have been me. I could have been the one hit by the speeding bus and not the one that pulled the man to safety. For all the fighting that I was doing, the research to get over my disease, I could be killed right now by a freaking bus. What was the point? All we have is today. To live in the moment. The here and now. 

That's when I stopped researching and obsessing over my conditions. I let go. I was no longer afraid to die. Yes I still wanted to live. I didn't give up. I just let go. I started to live for the moment, to appreciate everything in my life. I just needed to mind my business, try to do good in the world, and live. Just live.

And that’s where everything changed. I followed the same medical regimen, but I improved. I continued to improve until just this summer I was told I no longer had pulmonary hypertension and that my heart was no longer in failure. I was able to come off some of the drugs I was taking and now I just take four medications. At one point I was taking thirteen different prescription medications.


I told someone about living in the moment, and they asked me what exactly does that mean? Everybody says it. Living in the moment, to me, means to be content. Be content and appreciate all you have right now. We live in a world where we always want bigger, better, more, and that is all fine to want those things. But we need to be content and happy with what we have now. Try to get out of the “grass is greener on the other side” and “everyone else’s sugar is sweeter” syndromes. If you are not happy with what you have right now, when you get the better thing, you will be happy for a while, but it will not be enough. You will want something even bigger and better. If you don’t learn to be content in the now and stop looking for what tomorrow can bring, you will never be content, because when tomorrow becomes today, you will look again to tomorrow for happiness. As far as chronic illnesses go, always remember that God, the Universe, whom ever, never gives us more than we can handle. Just take deep breaths and picture yourself getting better. But be happy with who you are now. Don’t wait to get better to be happy. 

So, there you have it. There is no secret potion to my getting over pulmonary hypertension. And heart failure. Each of us have a separate journey to follow. Some of you will never get better. That's your journey. But never give up. Be positive. Be happy. Let go and live. Just appreciate the life you were given and just say to the universe, to God, to whom ever – “ Thank you. Thank you for this life that I was given. It may be painful at times, but it is better than the alternative.”

By Basil Rene

Basil Rene maintains a blog at http://lifeasananomaly.com, where he has positive posts about his life in general as well as his journey with pulmonary and cardiac sarcoidosis, heart failure and pulmonary hypertension, an implantable defibrillator, as well as a hole in the heart that took over six years to stop leaking after it was fixed. Basil also sends out positive tweets and can be found under the handle @BasilRene.

Friday, 17 July 2015

PHighter Friday: Karen Stone

I feel my PH journey started with my struggle to get diagnosed. I had been steadily getting more breathless and tired and having blackouts and fits, I was treated for inner ear problems, told it could be my weight or stress (becaused I had lost my mum and had to give up work as a secretary due to Repetitive Strain Injury) and although a chest x-ray showed my heart wasn't pumping right I was told they needed to get my fits sorted out first.  Even the Neurologist said all the tests ruled out Epilepsy but he wasn't convinced!

I eventually saw a locum GP and she said I had a heart murmur (I had been born with one but the usual GPs said there was no trace of it) and referred me to a cardiologist.  He diagnosed an enlarged heart, gave me Beta Blockers which caused more blackouts and I started to go blue. I ended up in my local hospital where Drs noticed I had a problem with the right side of my heart and gave me Verapamil.

I had an Angiogram at Harefield Hospital and on the 14th Decemeber 1998, the same cardiologist that gave me the Beta Blockers told me "it was a bit of a bummer but I had this condition (IPAH), we could try the old rat poison but if he was a betting man he wouldn't lay money on it working"!  Thankfully he had a lovely registrar who arranged for a colleague who actually knew about PH to talk to me & my husband and gave me hope again.  They told me I could try Diltiazem and Warfarin but it may not work, however I had noticed a slight difference with the Verapamil so I was positive this was going to help.  As you can imagine it was a very emotional time and I tried to make it a Christmas that my children would remember, thinking it could be my last one. 

By April 1999 I was on the transplant list for a heart and lungs, however because the medication seemed to be helping I was adamant I wanted to put that off as long as possible and even refused it when I got a call because I was seeing Professor Higgenbottom in Leeds the following day to see if I could have Prostacyclin instead.  He didn't think I was sick enough for either the drug or a transplant which reassured me so I pushed my illness to the back of my mind and tried to get on with life.

In 2001 I was asked to take part in the Sildendifil trial which thankfully worked and I have taken it ever since.  I am always willing to take part in studies or trials and although medication doesn't always work that's the only way that treatment can move forward and feel that even if it doesn't help me it may help someone else.  Eventually Harefield moved me to the wait and see list for a transplant and I have never looked back.

I tried to fill some of the boredom by going to art classes but still felt exhausted and kept thinking perhaps it was because I had no purpose in life. My daughter was 11 and my son 19 by this time so in 2003 I decided to go back to education, still with the hope that a cure could be found and that I could eventually go back to work.  I completed an access course which enabled me to then do a degree. I graduated with a BA Hons in Sociology and History in 2007 and although I haven't used it for employment yet I felt it was a huge accomplishment to complete it with PH.

It has been an emotional journey going from thinking that I would never see my children develop into adults to eventually becoming a grandmother to 3 gorgeous grandchildren.  I now fill my time with helping to amuse them during the holidays, various arts and crafts and have even joined the Women's Institute.  Although I don't relish getting old, it is great to think I will be celebrating my 50th birthday next year when after diagnosis I didn't think I would reach my 33rd.

I continue to remain positive that the cure will be developed to help myself and fellow PH patients and I still take part in trials when they come along.