In sickness and in health

#HEAR our voices Peter Beech

In sickness and in health

Peter Beech has been married to wife Betty for 59 years, and his support has taken on new importance since she was diagnosed with pulmonary hypertension. Here, the 80-year-old from Nottingham explains his role in their changed life together.

It took a couple of years for Betty to get her diagnosis and it was quite stressful watching her struggle with her symptoms when we didn’t know what the problem was.

When we were told that it was pulmonary hypertension, I think I was probably in shock more than anything else. All I could think about was that it was such a serious condition, and I didn’t really understand what it was, or whether anything could be done. After speaking to a nurse consultant, the situation was made a lot clearer.

I don’t think you realise the impact that a diagnosis like this has. On reflection I would say that it made me more concerned about Betty and what her capabilities were; what she couldn’t do and what assistance she required. I found that initially quite stressful.

We’ve always shared our duties, but Betty couldn’t do anything herself. She found walking and breathing difficult and I felt I couldn’t help her to relieve those symptoms.

I have to manage everything now. On a number of occasions, she has tried, but it’s been too much for her.

It’s been very difficult to find out what is available in terms of social care. Betty’s got district nurses who attend twice a week for a leg ulcer, and they put me in touch with a charity for carers, who sent me some literature about what helps would be available if we needed it. It made me realise that as much as I could get on by my own to begin with, there are places and people who are prepared to help you.

The hardest thing for Betty is trying to maintain some form of dignity. She can’t shower herself, or dress herself, as she can’t stand for long. She needs practical help, which I provide, but she gets frustrated that that is unable to do the things she is accustomed to doing.

I can leave her at home alone to go shopping but I’m very conscious that I’ve only got 90 minutes because her medication means that she needs to go to the toilet after that time, and I have to help her with that.

Despite all of this, I don’t think of myself as a ‘carer’ for Betty. We’ve been married for 59 years, and this sort of situation puts you into a different light. But I don’t use the terminology of ‘carer’ unless I need to explain why I need to accompany her somewhere.

We have family who are extremely good, and I can ring them whenever I need to. I also have an old work colleague who phones me every week and always offers his help.

I don’t have time to pursue my own hobbies or interests because of the need to help Betty with the toilet so often. I used to go and watch cricket, but I can’t do that now, so I watch it on the TV instead. I do walk the dog once a day, which gives me a little bit of a break.

We used to go out once or twice a week for a meal, but we can no longer do this due to Betty’s deteriorating health.

It’s very difficult to try and give advice to others in our situation as they may feel differently. But I would certainly say it’s helpful to have a good understanding of exactly what the condition is, the medical terminology around it, and what effect it can have on a person. Betty

#HEAR our voices

Shelley Higham

“As long as I have got my family and friends, that is all I need”

Shelley Higham was diagnosed with PH at the end of 2019. Here, the mother-of-two from Lancashire reflects on her diagnosis and explains how it has altered her outlook on life.

The family together

Iwas working as a retail assistant when I started noticing something wasn’t right. I was getting breathless, but I tried to ignore it, and I put off going to the doctors. But then I started getting chest pains and would be gasping for air when I went to bed at night.

At first, I was told it was pneumonia, but my legs started swelling and when the chest pains got bad at work, my employers called an ambulance. Tests showed my legs were full of fluid, which was rising to my chest.

CT scans then revealed pulmonary hypertension and heart failure. It was December 2019, close to Christmas, and by this time I had been experiencing symptoms for a year.

It was heart-breaking to be told I had an incurable disease, and one that I had never heard of.

I take two types of oral medication and have to use oxygen for 16 hours a day. I’m also on a BiPAP (ventilator) machine overnight.

I had to leave my job, which was a hard thing to do, but I just couldn’t be walking up and down stairs or operating the tills.

PH does affect me quite a lot because I feel like I am restricted when I go out. I have two children, Callum (21) and Jack (12), and when they go out with my husband Gareth I often have to stay at home because the oxygen makes it so difficult. I can’t walk far, because I know I will get out of breath.

I’m lucky to have a lot of support from my family. My parents only live around the corner and my husband is fantastic. He does everything around the house, and I couldn’t be without him.

Having PH has changed my outlook on life, and I never take anything for granted now. I appreciate what I have got, and although I don’t know if I will ever work again, money is nothing. As long as I have got love and my family and friends, that is all I need.

#HEAR our voices Pam & Graham Fenton

“It was like starting a new relationship”

Pam Fenton was diagnosed with idiopathic pulmonary arterial hypertension in 2018, and her husband Graham gave up his job to help care for her. The great-grandparents, who live in East Yorkshire, shared their story for PH Awareness Week to encourage more understanding and earlier diagnosis.

Pam is 65 and lives with a Hickman line delivering medication to her heart. She is on oxygen therapy for 16 hours a day and also takes multiple tablets and inhalers.

“I had never been ill in my life until 2013. I couldn’t walk up the stairs, I was blacking out, and I put on four stone of water weight. I used to cry; a newborn baby can breathe, so why couldn’t I?

I didn’t get my diagnosis for five years, and in some ways, it was a relief to know there was a reason for it all.

I was broken during those years before diagnosis. They were the worst years of my life. I couldn’t go out, so people stopped inviting us, and they didn’t believe I was as poorly as I said I was. People don’t understand how nasty and horrible they’re being.

Pam and Graham with family on the day they renewed their wedding vows

Before I was diagnosed, doctors were telling me I had asthma or angina. Eventually, after I started leaking water from my legs, I was blue-lighted to hospital, where I blacked out. I was referred to the specialist centre in Sheffield where I was told I had PH and started on the Hickman line shortly afterwards.

Now, I have good days and bad days. But the medication has made a big difference and thinking about ‘before’ and ‘after’ helps me realise that.

In December 2017, five months before I was diagnosed, Graham and I took two of our great-grandchildren to a Santa’s grotto and when we got there, I couldn’t walk far enough to watch them with him. I was heartbroken.

A year later, after I’d started on medication, we went back and I was able to watch them with Father Christmas, plus a reindeer and a donkey. I had to take my oxygen with me, and it took me about three days to recover, but I did it.

There’s still a lot I can’t do, but I try.

It’s hard to explain how much the breathlessness affects me. Sometimes I can’t get a sentence out and sometimes I can’t get out of bed. It’s very difficult to walk from one room to another without having to rest.

Sometimes the more I know about this disease the more it frightens me, and other times the more I know, the less it frightens me.

Having PH makes me feel physically and mentally tired, but also grateful to be alive. I am determined that I am going to do as I’m told [by my medical team] and do the best I can.”

Pam with her granddaughter (above) and greatgranddaughter (right) Graham has been married to Pam for 25 years. He gave up his job to support her when her symptoms worsened in 2015.

“PH has turned our lives upside down. In some ways we’re closer, yet sometimes we can be distant as well. We’d been so active together, and suddenly it was like hitting a brick wall. It was like starting a new relationship, and we had to become more honest with each other.

I didn’t understand the disease at first and I was looking at her and thinking ‘how am I going to cope with this?’

I had a very good job with a good bunch of people but as time went on, I began to realise that I was going to have to give up work to look after Pam.

There was a sudden shock of being unemployed and not getting up at six in the morning to go to work, and then trying to establish a routine that suited Pam. The first few days we did nothing but sleep. I was a bit lost.

I was left in the dark a lot [by our local hospital] but once we got referred to the specialist centre, I was included in the conversations and some of the lights started to come on.

I help with the medication side of things, but it can be very daunting if you don’t know what you’re doing. I do the pump [for the Hickman line] every so often, and I sometimes wonder if I’m doing it correctly. My confidence can take a beating if I do it wrong, but I know that our specialist centre is always there to help.

Now I can just look at Pam and see that she needs a rest or a drink. I do the shopping - even though I dislike it - and sometimes you feel like you’re just fetching and carrying. It’s the realisation that I’m now a carer… what a word.

It can make me feel tired, sometimes even lonely, as I’m doing things I wouldn’t have been doing if I’d been at work. It’s difficult to carry on with it and understand I have to do it for my wife’s health and not for myself.

She was getting her confidence back and then COVID-19 came along and that took the wind out of her again. But now that things are improving, we are getting out a bit more.

We can’t go far because of the oxygen, and it is so tiring for Pam that we have to justify what we do because of the impact on her. It’s difficult, but the treatment is helping.”

You can watch a video of Pam and Graham talking about their lives with PH at www.phocusonlifestyle.org