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, 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

PHight or Flight Project Campaign


On the front of the shirt the word "hope" is spelled out. The back of the shirt says "LIVE FOREVER MAKE THEM CRY," which is something a friend said to me when I said I was tired of doctors telling me how many years left I have to live.

Sizing and Price: Please use the "available styles" drop down menu to select the kind of shirt you would like, and size. Please note that prices vary depending on the kind of style of shirt you select. Shirts are available on a Hanes tagless t-shirt, or printed on an American Apparel Brand t-shirt (recommended- most affordable.) Long sleeve shirts are also available.

All profits will be donated to Pulmonary Hypertension Association Canada.
Mission: To empower the Canadian pulmonary hypertension community through awareness, advocacy, education, research and patient support. 
Vision: A better life for all Canadians affected by pulmonary hypertension.

About PHA Canada: The Pulmonary Hypertension Association of Canada (PHA Canada) is a federally registered charity established by patients, caregivers and health care professionals collectively referred to as the Canadian pulmonary hypertension community.  When you become involved with PHA Canada, you're helping to connect members of our community, create resources for patients and caregivers and ensure that those suffering with PH are not alone.

Please visit the campaign to order your shirt!

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.

Friday, 10 July 2015

PHighter Friday: Charity

With the Terezin quartet at The New School in New York City
I'm a doer. It's the way my little soul entered my frequently-challenged body. When I couldn't keep up with my peers, I tried harder. I went to the gym more. I dieted. But no matter how hard I tried to keep up, lose weight and exercise, physical activity just appeared to be much easier for other people. In certain respects, it was a blessing. Turning my attentions to music and academics has been a much more sustainable road to happiness, a career and a life for me. 

I was diagnosed with a stage IV case of IPAH when I was 20. I was transplanted the first time at 26 and then again two years later. Over those years, it became clear that "my" mindset and can do attitude wasn't mine alone. It belonged to many of the people I met who had Pulmonary Hypertension. But once a diagnosis comes, how do we cope? How do we move forward with a life despite the seeming impossibility of our situation? How did I move forward?

The value of worthy distractions

A performance at a TED conderence at the
Hotel Del Coronado on Coronado Island, CA
The grief associated with diagnosis can be overwhelming for an individual and for a family. It's almost like having your funeral while you're alive. But in the midst of the emotional avalanche, I looked towards my most cherished distractions. After diagnosis, my family and I felt lost in the hyper-realism of our word. Everything was so clear; so poignant; so beautiful and painful, it seemed there was little to nothing we could do.  While my specialist in Colorado (Chris Lang at Kaiser if anyone is wondering) was amazing, another specialist told me singing would kill me. Because of the severity of the diagnosis, we didn't know if I had weeks, months or years left but the prospects didn't look good. Almost as soon as we found out, I focused on a project. If I was going to die, I wanted my family to have a record of my voice. I put together the music and found a pianist. A friend who managed a recording studio donated the time for me to record. It was a gift for which I will always be deeply grateful. In those first weeks, it gave me a place to escape the seeming bleakness of my reality. Meanwhile, I began to subconsciously process everything that was happening to me. By the time the recording was done, I was much better prepared to emotionally cope and chart a path forward. 

With my family at the Cleveland Clinic

Focus on the CAN

My physical, spiritual and emotional well-being were largely grounded in a determination to focus on the can instead of the can't. The body is amazing. It learns to cope -- to pace itself -- but I think the only way that happens is if we embrace the possibilities we have as opposed to lamenting over those we don't. Despite the clumsiness of my pump (in my day, it was really big), the shortness of breath, synchope (sp??) and complicated medications, I learned how to really live with PH.  I couldn't run a marathon, but I could sing. I wasn't going to be a great mountain climber, but I could paint. I couldn't eat salt, but good fruit is the best thing in the world anyway and it doesn't need salt. I couldn't climb to the top of the Washington Monument, but I could get another graduate degree. I couldn't play intermural sports but I could run an after school music program for kids in Baltimore. I learned my limits and how to live within them. Eventually, I lived in Italy, Hungary, Israel and in China all while I had PH. I performed in major theaters around the world. I met my future husband and fell in love. By focusing on what was possible, my emotional and spiritual health was excellent which in turn, helped me professionally and my overall physical well-being. 

I Never Wanted A Transplant

A performance in the US Capitol Rotunda
With my lift team at the Cleveland Clinic

Transplant is undeniably amazing. It's also a challenge. First, let's talk about amazing. I never could run. Seriously. From the time I was a little girl, it just wasn't something I was able to do. But the other night, I ran all of the way from our flat to the Lincoln Memorial in Washington DC with my husband. Its something that until I did it, was unimaginable. I never feel like I'm going to faint anymore. This is also a huge deal since much of my life was spent trying to figure out whether an activity would land me unconscious. I can eat salt and people finally really enjoy my cooking -- something that was a challenge when I couldn't add salt to anything. I don't have the pump anymore. I'm married (though I suspect my husband and I would have married regardless of whether I received a transplant since we began dating when I had PH). We just took an amazing trip to Patagonia where I climbed some of the most beautiful mountains in the world. Life is good. The challenge is, this is my last shot. When I had PH, if things went south there was always another medication they could add to my regimen or if all else failed, transplant. There is no safety net for transplant. I was crazy fortunate and my insurers and hospital let me go on the list for another transplant and I got it, but that doesn't always happen. A first transplant is hard enough to get. A second transplant is nearly impossible. The word rejection is super apt
Relearning how to climb stairs after the transplant

because when it happens, it feels like the organs are rejecting you, personally. Its like the old, more vengeful version of God right inside of you all of the time. It knows whether I took my meds on time, whether I ate shellfish, whether I crossed my legs, whether I'm exercising, whether I am doing everything I'm supposed to do. When I rejected, I experienced guilt in a way that I never had before. It reminded me of when I didn't get into the college I wanted to go to, steroids. It was devastating and I felt like I was making my donor die all over again. The process of watching my body break down so quickly didn't give me time to grow used to my condition. It was hard and fast and

cruel. With PH, right before my 1st transplant, I didn't want one. All I wanted was to move to Canada to be part of one of Duncan Stewart's stem cell studies. I could still walk around -- albeit slowly. I wanted a cure, but if one never came, I was happy to spend my life living with PH. I'd already been diagnosed with PH for over 5 years and I was very happy with my life. While I was on loads of meds -- revatio, aspirin, diuretics and flolan among others -- I was used to living with and coping with my disease. What I didn't totally accept until two friends with PH died was that there is a window of opportunity for transplant. Wait too long and it closes. When I crawled through my window, the glass was broken and it left some nasty scars, but it lead to somewhere amazing. There is a story of a young woman who's removed her name from the transplant list in England because the wait is too hard and she wants to travel the world. While I understand her sentiment -- I kind felt the same way for many years -- being on this side of the experience I am so grateful to have made it. My life is filled
Our wedding
With my husband in Palos Verdes, California
with people and things I love. While I can't go clubbing, I can do so many things that I love to do and I am discovering so many other things that were out of reach for many years of my life. Transplant made me grow up. When I had PH, I would imagine a cure and imagine all of the things that could happen. Transplant has taught me that I am the ultimate arbiter of possibility. Every single day depends on me taking my medications on time, exercising, recording my spirometry, washing my hands, avoiding crowded places, wearing my mask on the plane. It has forced me to discipline myself in ways I never thought was possible. It's taught me to be more humble -- to accept help and really lean on the understanding of others. It wasn't my first choice, but it is a huge blessing. 

The Take Away

I want a cure. I hope and dream and pray for one. But for now, I try and focus on what I can do with my doctors, with my community, with my family and my friends. In the last weeks of waiting for my first transplant, I painted a beautiful table. It sits in my front room as a reminder of the beauty that can come in our darkest hours. If we look towards action, it will wisk us away and carry us toward the wondrous.
The table I talk about at the end of the post

Happy breathing.

With my sisters after my wedding
With my sisters after my wedding
Charity Tillemann-Dick is a best-selling classical artist and writer. Last summer her album American Grace charted 10 times on the Billboard charts including the number 1 slot as top classical album. Along with her popular lifestyle and cooking blog 5istersTD she is a contributor to CNN, Huffington Post religion and arts sections. Currently, she is writing a memoir which will be published with Simon & Schuster in the spring of 2016. You can follow her on twitter and instagram @charitytd. It might take a little while, but she promises to tweet back.