Pulmonary Hypertension as an illness allows each individual sufferer to have a widely different experience from another. This collection of images aims to portray how many people are impacted by Pulmonary Hypertension from their treatments they undergo to their limitations.
My aim through my photography is to raise awareness of Pulmonary Hypertension, as well as other invisible illnesses. I want to show how even the most ‘ordinary’ people can be affected by a life-changing circumstance.
Amanda Taylor-Palmer
“I was diagnosed on the 15th of March 2010. I had been ill for over a year and been feeling unwell all the time, my lips kept going blue and so did my feet. They were always swollen and I started to notice that breathing was becoming more and more difficult. Also, I had started to cough up blood. From test results of this I found out I had blood poisoning called Polycythemia, yet it was a secondary problem, therefore they needed to find the what was the cause. I went to the local hospital and had a number of tests done, with the results being that I had Pulmonary Hypertension. I had known about the disease as my father had died of arterial pulmonary hypertension, a year after his death my 24 year old brother also died of PH. I found out that my paternal grandmother died at a young age and my aunt also died at 7 years old both having PH. I had further tests done and this revealed that I had hereditary pulmonary hypertension and there was a 50/50 chance that my children could be carrying the gene as well. My eldest son has been tested positive for the gene.
I had been referred to Hammersmith Hospital in London, the night before my first appointment I had a bad turn, I then had to stay in the hospital as my PH had gotten to a very serious stage. The only option for me was to have an IV line fitted immediately. I was operated on the following day, however, my condition worsened and I was put into intensive care. My husband was told I was at a critical stage if I made it through the night I had a good chance. It took me a long time to recover to where I am now, I have had to have my line changed 4 times due to infections including pneumonia. I wouldn’t be here today without the fast reactions from the Hammersmith team. They saved my life. They gave me a longer life expectancy than my father and brother had.
I won’t ever give up hope.”
Jayne Venables
“I was diagnosed in May 2014, following approximately 2 years of tests. I was given a provisional diagnosis at Medway Maritime hospital before being transferred to the Royal Free. This is where my diagnosis was confirmed by RHC. They also found I had a hole in the heart with a left to right shunt and Partial Anomalous Pulmonary Venous Drainage (where arteries run the wrong way between the heart and lungs) at the same time. I started on Sildenafil immediately with Macitentan added shortly afterward. Oxygen was added in August 2016. Following a sharp decline, an IV Epoprostenol was added in October 2017.
It’s impacted my life in every way. I am unable to work anymore. I am only able to undertake light housework on good days. Some days I can walk a very short distance, others I can barely walk 5 meters. I am unable to fly so holidays abroad with family are affected. My family has all been impacted too. My husband had to give up his job to become my Carer so we went from having 2 incomes to none. My children have seen their mum who was fully hands-on, to needing to be pushed in a wheelchair, in front of their friends.”
Terree Selby
“I was diagnosed in 2009 when I was taken to A&E with a suspected blood clot. A doctor noticed there were abnormal sounds from my heart. I was admitted and had an echocardiogram which showed slightly raised pressure in the pulmonary artery. A couple of months after I had a regular appointment with my consultant rheumatologist, he dismissed it as being nothing to worry about. Every now and then I would mention it and would be ignored until eventually, I wore him down. He scheduled another echo for me but my arthritis was so bad that day I couldn't get in a good enough position for the test to be carried out fully so nothing showed up. Once I moved to the southeast of London a couple of years ago it took a year for me to be referred to the Rheumatology department at my local hospital. I had my first appointment there in April this year quickly followed by another echo which showed without a doubt that there was something wrong with the right side of my heart. I have now been referred to The Royal Free Hospital in Hampstead to the specialist team there. I haven't had any drug therapy yet as until now it hasn't been taken very seriously.
It has affected my life by a fair amount. My energy levels are low and I do tend to sleep a lot. Lately, I have been quite lightheaded and have been suffering from headaches. I get quite breathless sometimes from doing the smallest things like getting up from my chair or bed. I worry also because I don't know what the prognosis is. Will it get so bad that I will need to be on oxygen? How much will it shorten my life?
My son, like me, is a worrier but he won't face my illness because it scares him. We are so close that he will struggle when I die and he just can't think about it. As for my grandchildren, they don't get the best of me. I can't pick them up for a cuddle and I can't roll around on the floor. If we go out as a family they have to look after me as well as the children. Not just because of the PAH but also the other conditions I have. However, we still manage to have some lovely times and make lots of memories.”
Liesl Andersson
“I was diagnosed in November 2014 after about 10 months of tests. I’d started getting breathless climbing stairs and hills. I wasn’t too worried, I even thought it could be stress, but my GP was brilliant and insisted on following everything up. I got a call from a doctor whilst in bluewater telling me she thought it was PH. I had never heard of it so googled and panicked. We have BUPA through work so I decided to go private at this point. All my tests and diagnosis were done in a day, with my prognosis being 50% chance of making 10 years. My work signed me off to help me get to grips with the diagnosis. I tried to go back to work in January and had a phased return starting at 3 days a week. Then this increased to 4. I was told in July unless I went full time in September I’d lose my promotion so I did and have been working full time ever since.
I’m stable now and doing well but still get symptoms, I get very tired but I try not to take time off work. My close family worry about me and our plans for the future, we just have to figure it out as we go. I do not think really understand and I worry that I’m making things worse by pushing myself too hard. I don’t want it to rule my life. I know I can’t expect people to understand but I wish they realised how much extra I have to do just to keep up.
I would like to say that I feel lots of support from the NHS and close friends and family.”
Angela Beardall
“I was diagnosed after raised pressures were found following a routine echocardiogram that I had because of my pulmonary fibrosis. A right heart catheter at The Royal Brompton confirmed the diagnosis of pulmonary arterial hypertension in September 2016. I was initially started on Sildenafil 25mg 3 times a day for 6 months. This was then increased to 50mg 3 times a day and then after having another right heart catheter in November 2017 I was started on 10mg once a day of Macitentan as well. My pressures are now that of a ‘normal’ person. I also attended a pulmonary rehab course in Spring 2017. I am on ambulatory oxygen but was on this previously due to my pulmonary fibrosis.
PH is just an additional problem that I have due to all the aspects of Mixed Connective Tissue Disease. My breathlessness has not gone due to the fact that my pulmonary fibrosis has caused me to only have 21% gas transfer. Due to all of the medical issues I have had to give up work as a primary school teacher. My condition also prevents long haul flights. I have to have oxygen for flights of 2 hours or more and I have been advised not to fly over eight hours. This all means we don’t travel as much as we used to due to the hassle of organising fit to fly letters and oxygen for flights plus the additional costs that comes with this.
I don’t go out as much as I used to as walking even short distances is difficult and stairs are a big no-no. I do have a very understanding friends who are very accommodating. My husband's career choice has changed due to wanting to be at home more with me and availability to attend hospital appointments together. We don’t see family and friends as much due to constraints due to my mobility and also having to avoid people with illnesses”
Tara Sullivan
I was diagnosed in September 2008 just after the birth of my third daughter. I started feeling very breathless during the latter stages of my pregnancy, which was just put down to the baby putting pressure of my diaphragm. After she was born I got worse and worse. I could hardly breathe upon any exertion. I just kept getting told I was unfit, which I knew was not the case as I have kept fit my whole life. I was then misdiagnosed with asthma and given inhalers, which obviously did not help at all. Finally, I went privately for an echocardiogram and angiogram. Then came the diagnosis and I was sent immediately to the Royal Free under Dr Coghlan and his team. I was initially on Sildenafil and other trial drugs, until Dec 2016 when my heart started going into failure and I was then advised to go onto IV. I had IV inserted Feb 2017. Alongside this, I have been visiting Papworth Hospital who have been advising and preparing me to go onto the Transplant waiting list, for a double lung transplant. The Royal Free are trying to keep me as well as possible on the IV medication to delay transplant, but I know that sometime over the next couple of years transplant will be the only way forward.
There have also been side effects to deal with along the way. Most recently my liver started going into failure after 4 years of taking a drug called Macitentan. I have been on a long course of strong steroids and now it looks as though my liver is started to recover. The predictions and statistics you are given about survival are quite scary but I really try to remain positive for my family and friends. Life is about the here and now and I don't want to spoil it by worrying about what might or might not happen. Obviously, it has restricted certain areas of my life. I cannot run around with the kids, especially when they were younger or jump on the trampoline etc. However, I do what I can do. I also still try to keep myself as fit as possible and this has definitely helped me by keeping my muscles and body conditioned and therefore requiring less effort from my heart/lungs.
My family do worry about me and what the future holds but we are also very positive and will deal with whatever we need to together."
Ros Knight-nee Blatch
"I had become unwell in 2013 and diagnosed with pneumonia. My cough never went away, it is now thought this was when I developed my clots. My diagnosis came in December 2016 after a year of progressively getting more unwell mentally and physically but no one diagnosing me. I was given my PTE in December 2016. PH has had a massive impact on my life, I do not have the independence I once did but I just try and make the most of my second chance of life, its hard being young and having to use a wheelchair and stair lift but I am becoming to accept it more as I get used to it.
I think in someways PH has had more of an effect on others than me, most just ignore I have it and expect me to be who I was and able to do what I once did. This makes it hard to have relationships with people friends and family as they do not understand and they are frightened."
Sara Davey
"I was born with a congenital heart defect and also developed a Kyphoscoliosis (curvature of the spine) which needed major surgery to correct when I was 10 years old. I’ve never been able to walk far but in my early 30’s I noticed that I was getting breathless more easily and couldn’t walk as far as I used to. Generally I felt tired all the time. After nearly 12 months of investigating and a cardiac catheterisation I was finally diagnosed with Pulmonary Hypertension in 2004. Because it was assumed that my small lungs were to blame I was not offered any treatment. I have used a VPAP ventilator at night since then and in 2012 I was prescribed ambulatory oxygen. After a really bad dose of pneumonia in 2015 I am now on oxygen 24/7. Over the last few years my condition has deteriorated and in late 2017 I developed heart failure and was referred to a specialist congenital heart disease and PH consultant. He decided to offer me drug therapy as he thought my heart condition maybe the cause of my PH rather than my restricted lungs.
Having PH has had a massive impact on my life. My ability to walk is now very limited, I’m tired all the time and I have to plan everything I do as I need to have enough oxygen with me. I hate not being able to do things spontaneously. Work got harder and harder and finally I had to retire on medical grounds last September. I struggle to climb stairs and I even get breathless talking or having long conversations.
I think it’s been hard for people around me to see my condition deteriorate. For my family they have to make allowances for me and I’m sure they don’t like seeing me get sick frequently. For my husband, it means he has to do most of the housework as I don’t have the energy to do it. When I’m sick he has to look after himself completely and visit me in hospital which is tough as he’s visually impaired and a guide dog owner."
Jo Dunbar
"Unlike many people, my road to diagnosis was pretty straightforward. I had a sub massive Pulmonary Embolism (PE) which caused moderate pulmonary hypertension, followed by a massive PE a few months later, at which point my echo showed I had severe Pulmonary Hypertension. After six months it hadn’t so we began the more in-depth process of Right Heart Catheter (RHC), angiogram and involving Mass General to see if I was a candidate for Pulmonary Thromboendarterectomy (PTE). I then moved back to the UK and had to start the process over of being diagnosed. Thankfully I eventually went long enough for us to establish with a RHC at Sheffield in July 2018 (just over two years after my first PE) that the PH was chronic and not just acute, and I began taking Sildenafil. For now, the only PH-specific medication I use is the Sildenafil.
The impact of PH on my life is a strange question to answer for me. On one hand, if I look at it in terms of physical things, there isn’t an area that hasn’t ‘suffered’. I can no longer partake in any of my hobbies, or those I can have to be modified. I am only able to work part time because of fatigue and many of the every day chores have to constantly take a back seat.
Mostly as a family the impact has been modifying activities and time spent together to accommodate my inability to keep up these days. They never say it or show it, but there is definitely a burden on them though. My siblings will change days off to get me to appointments and then spend hours sitting round hospital waiting rooms. I think it’s hardest on my mom though. My step dad still sees a strength and an enjoyment of life in me, but my mom finds it hard seeing any of her kids struggling. On the positive side, we are now spending time with all of us siblings and the kids together which would never have happened if I hadn’t developed PH and had continued living and working overseas."
Andrea Brown
"I was diagnosed with Pulmonary Hypertension when I was 29 so I’ve had PH for 12 years. I was a healthy, busy, full time nurse on a Trauma and Orthopaedic Unit when I started to feel unwell. It took about 6 months for me to be diagnosed with PH. I was referred for an Echo by my Occupational health doctor and was admitted straight into Conory Care Unit after this test. I was end stage 4 so was started on IV Epoprostinol immediately. I was then transferred to the Royal Free in London to begin training so I could administer my own medications. I take over 30 tablets a day and IV therapy which is renewed every 48 hours.
PH has impacted pretty much every aspect of my life. I’m still a nurse but I only work 2 days a week in an Eye Unit. My/our life is moulded around medications, pump changes, numerous appointments for all of my auto immune conditions, numerous tests, medication deliveries and most importantly my rest time. My pump hangs around my neck 24-7 365 so is a constant reminder of my illness as is the shortness of breath and fatigue. My PH means there are lots of things I can’t do but I like to concentrate on what I can do - the positives rather than the negatives.
I feel like a burden to my husband Rich. Our life has not turned out the way we planned. We planned holidays and babies which can’t happen now. My Rich has to do all the heavy cleaning in the house, hoovering etc as I can’t. He helps wash me, dress me, and look after me when I can’t do this for myself. He drives me everywhere and picks me up. Rich always thinks about me first and how he can make my life easier. I feel like an unequal partner in our marriage where Rich does everything, as well as work full time. He is my angel , always there when I need him and I would be lost without him."
Robyn Chant
"I was diagnosed with PH when I was 8 years old and was given a prognosis of 3-5 years to live. It is now 13 years ago since I was diagnosed with PH. It has effected what I can do because I get more tired than other people easily. It has changed how people who don't know me treat me. It has impacted on my parents and brother a lot and they try to make things easier for me to do. We are very close and I think that having PH has made even closer and made them more protective of me. My friends tend to walk slower when I go out with them so that I don't become so tired. My dad mixes up my medication for my pump as my hands can get achey. I have been on Flolan since I was 9 years old and really miss swimming freely. Having my pump has hindered me dating as my boyfriend of a year and I ended as his parents didn't like me having ph and my pump. If they had their way he wouldn't have gone out with me at all.
People tend to be prejudiced and fearful of my pump and it is difficult to find something to do work wise that accommodates the restrictions ph and other medical issues placed on my life. I am a qualified child practitioner but employers worry that I am vulnerable. I sometimes get stared at because of my bluish/reddish complexion which I have because my medications and the PH itself. I have lost friends with ph before and after transplant, so I’ve had to face my own mortality which can be upsetting because as a child come young adult these shouldn't be things I have to consider."
Amanda Chant (Robyn's Mother)
"When Robyn got diagnosed our world as we knew it stopped. We got her diagnosis on our wedding anniversary and I knew something wasn't right. A mothers instinct I suppose. When we met with professor Howard in Great Ormond street hospital after Robyn had had her first Right Heart Catheter we received the devastating news that her prognosis was probably only 3-5 years. She was only 8 years old. PH has had a huge effect on every part of our lives which we have managed to live with but some days it takes all the strength you have to function at all. We used to think that had she been diagnosed with cancer it may have been easier for others to understand as the rarity of ph is so high most never hear of it.
As a mum, and a fiercely protective one, we found secondary school more difficult as by then her PH was relatively under control yet they made her have a teaching assistant at her side which upset her a lot as made her feel cut off from friends. Many times she would call me in tears to collect her. She had some totally awesome friends who got her through this. Robyn has some really good friends and so do we, thankfully, but if I'm honest I sometimes feel so jealous of the normality of their lives. We have been through a lot as a family and our sense of humour and ability to laugh at most things gets us through and the ability to realise that the journey is a lot tougher for some gives you perspective and makes you feel grateful for what you have. We have lost friends adults and children with PH and made many friends along the way. While heartbreaking to see a life end it has also been a huge blessing to remember those lost and who remain as they touched our lives in such an amazing ways.
We have seen so many new medications developed in the last 13 years and information is so much easier to find that we are very hopeful and optimistic for the future regarding PH. Robyn is really positive for her future and we are looking forward to see what the future has in store for us all."
Pete Wilson
"I was diagnosed five years ago (2014) at the very end of July. I collapsed and was taken to hospital as I was in a bad way. It was all very dramatic, I’d banged my head on the way down and it was all a bit of a mess. I wouldn’t have been diagnosed if I hadn’t collapsed - I thought I was just very unfit - and if the heart guy at Poole Hospital hadn’t just moved down from the Royal Brompton and spotted what all his colleagues didn’t. I was transferred up to the Royal Brompton and after all the usual tests, they broke the bad news. They’d all said don’t look PH up on google so, being a good little chap, I didn’t. Was a bit of a shock, thought I’d just been given some pills and sent on my way. During the treadmill test I’d collapsed again so I started on Sildenafil, Ambrisentan, Warfarin and a spot of Ferosemide. I was incredibly fortunate the way it all worked out. Despite being difficult I knew deep down it was the right thing, and things were now going to get sorted, which felt strangely hopeful.
The main impact has been confidence (or lack thereof) in committing to things long term. My health is by and large ok but there have been frequent chest infections / episodes that have made me less reliable than I would like. I have to be sensible in what I choose to do. And of course, just general worry and trying (not) to second guess things at the same time as not giving it the permission to run your life, but that’s par for the course, I would guess. It isn’t the secure way of life that anyone expected or wished for.
The main impact has been confidence (or lack thereof) in committing to things long term. My health is by and large ok but there have been frequent chest infections / episodes that have made me less reliable than I would like. I have to be sensible in what I choose to do. And of course, just general worry and trying (not) to second guess things at the same time as not giving it the permission to run your life, but that’s par for the course, I would guess. It isn’t the secure way of life that anyone expected or wished for.
My wife and I chose not to burden the kids with all the information at the first diagnosis (they were 3 ish and 8 ish) and I’m glad we didn’t now as the initial prognosis would have just frightened them and things are very different now. They know I’m ill and I go to hospital regularly now, and they very kindly look out for me. Sometimes, in other ways, it means others end up with more work - if I’m ill and can’t be in work, or can’t do all the things I signed up for as part of our church."
Camilla Keyte
"Pulmonary Hypertension was first written in my medical notes at six weeks old, when I was diagnosed with my congenital heart condition, Pulmonary Atresia VSD. Over the years, the symptoms of breathlessness and fatigue were just another part of my overall heart and lung condition. It wasn’t until aged 28 years old that my cardiac team asked me to begin treatment to manage it. I was started on Sildenafil and Bosentan and have continued on those treatments for the last five years. As PH is secondary to my original heart condition, it is mostly made worse or flairs in correlation to other issues I have, for example, episodes of arrhythmia needing ablation and recent Valve Replacement Surgery.
Pulmonary Hypertension has perhaps had more impact on my life than anything else possibly could or ever will, in that it has taken away my ability to have a child. In 2013 I lost a pregnancy to my PH diagnosis (the risk being too high to continue) and complications afterwards have meant I will never have an opportunity to try again. The shock and grief as well as the physical trauma of this have truly changed everything for me; five years later I am still rebuilding a different future for myself and reimagining what my life will be now that I know I will not get my one wish. Nothing has been more important than the support of my closest people who have stood silently next to me throughout; as with all my other physical health problems, I have found the mental health impact the most difficult part to cope with.
I came home one day last year to find my younger sister crying in the kitchen – she said she had googled ‘PH’! I felt bad that I hadn’t been able to reassure or even inform her sooner, but my understanding is that PH has a wide spectrum of impact on individuals. Due to being a secondary diagnosis to my original condition, PH has become an extension of my lifelong experience of ill health. It is impossible to say at this point how it will progress in the future and will be just another complication that my cardiac team and I will do our best to manage."
