Leaving the Brompton after a month in hospital was quite scary. I had become quite reliant upon the nurses and the security of daily doctor’s rounds, and so was therefore terrified and concerned about whether I would be safe at home. To be honest, I would have happily stayed there longer! However walking through my front door was amazing. My own bed, wide enough for me to roll around on. My own sofa, long enough to lie on and facing a tv. Yes a tv! No more cold boiled eggs in the morning. No more daily blood tests. No more beeping machines. Being in your own surroundings automatically relaxes you, and combined with getting a good nights sleep, and the wonderful magic medicine, I started to get stronger. I was so happy, so relieved and so thankful to have made it home alive, and to now be moving in the right direction.
My Dad stayed with me for the first week at home, but by the end of that time I’d begun to venture to the kitchen on my own, and so felt happy enough to be left home alone from then onwards, whilst Phil was at work. However I was still very poorly and couldn’t do a lot in the day time. I had learnt in the previous six months that my body responded well to consistency, so I needed to do the same things every day. It seemed to therefore know what was expected of it and could cope. If I did far too much on one day, then the next day I would feel awful- breathless, exhausted and sick. As time progressed, I slowly added things in to my daily routine, and as long as these were introduced slowly, then my body could cope with the extra activity.
For the first couple of months, my daily routine was very slow and limited and needed lots of rest stops. We had fashioned together a mini kitchen in the bedroom, complete with tiny fridge and kettle, so I could make myself a cup of tea and some cereal for breakfast when I woke up (Phil would have filled the kettle up for me before he left for work!). Then I needed a rest. Next I would have a wash in my bedroom (water already brought in by Phil!). Then another rest. After I would get half dressed (so I was wearing a mixture of pjs and normal clothes!). Then another rest. Finally I would walk downstairs. This would take over 2 hours. The rest of the day was mainly spent in the living room; I read so many books and listened to so many guided meditations on YouYube. Lunch would either be in the living room already (Phil!) or in the kitchen, ready to eat. Snacks were also laid out for me so I needn’t go far. I always felt strongest in the afternoon, so it was then that I would do my physiotherapy exercises, which took about an hour to achieve. In the evening Phil would watch me whilst I showered myself, in case I needed help. Then bed. I’m sure that to many people, this would sound like hell. However I genuinely was only full of thankfulness that the medicines were working and that I was getting better and now able to do these things.
The doctors had told me that I would probably see the complete effects of the drugs after about 4 months, and then my progress would plateau. However I was amazed to find that although I was progressing slowly, I continued to get stronger, and was able to keep achieving more and adding more activity in to my routine. My progress didn’t begin to plateau until after about 18 months. I was so excited every time I was able to do something extra- even suddenly being able to wash the pots provoked big smiles!
After being on the medicines for about 4 months, I had another right heart catheter, and this showed that the pressures in my heart had decreased and it was now rated as “mild PH”. However as had been evident previously, I continued to suffer from higher levels of symptoms and disability than would be expected for my pressure levels. However over time I did continue to get better, and my symptoms started to lessen. After 4 months my 6 minute walk test (6MWT) was recorded at 150m, then later 240m, then 320m, then 360m and finally 400m in August 2015. I was now classed as WHO level 3. My heart had also managed to repair itself, the right ventricle returned to the normal size and it began pumping more normally and more efficiently. Consequently when I walked or did exercise, my oxygen levels no longer fell so dramatically , and I could do more before they started to decrease.
The first year of being on meds was difficult. Initially it was tricky remembering to take the right drugs at the right time. My diary seemed to be full of medical appointments- weekly/monthly blood tests, three monthly hospital visits. I had to learn about my version of PH and how it affected me. Consequently there were also a couple of hospital A&E admissions, and extra emergency clinical appointments, when things went wrong. At one point, my consultant tried to take me off one of my medicines, the diuretic, but I reacted to that and had to be put back on it. Another time my liver started to have problems with the high levels of drugs I was taking, and I was taken off one of my PH drugs until it healed itself. There were also a number on incidents where I was just randomly ill for a few weeks, an intensification of symptoms, but for no obvious reason. Every time, it was incredibly scary as I wondered if I was deteriorating, but luckily I always went back up again after a few weeks.
It was a year for exciting firsts- first wash without being watched, first banter on the phone, first time singing in the shower. It was also a year for adapting to the situation, finding solutions to new problems, and trying to improve. I was given (very) early retirement (33 years old), from my job as a primary school teacher. We changed bits around the house to suit my needs, and completely adapted our lives. I was finally persuaded to get a mobility scooter in March 2014. I hated that I had to have one, hated the stares I got whenever I went anywhere, hated the pity it evoked… but actually it turned out to be a real turning point for me. I suddenly had freedom to go where I wanted in a supermarket, and this stoked the fire in me to want to become even more independent, and get back some of the life I had before. We got a dog, Lottie, who turned out to be a wonderful companion; perfect when you go from being surrounded by children all day to suddenly being home alone. My whole focus for the year was to get better, to do everything in my power to improve. My diet was improved, alcohol removed, daily meditation, daily exercise.. and the biggest influencing factor was surrounding myself with positivity; reading books, listening to talks, and repeating positive mantras. It upped my mood, made me realise that I could still have a good life, and made me genuinely love my life more than before diagnosis.
On the first anniversary of my diagnosis (October 2014), I made the decision that I needed to start living life again, instead of just existing. Consequently 2015 was an amazing year for Phil and me. Over the year I had coached my body to now be able to cope with the odd day trip, without feeling too ill the next day. For me any day of increased activity results in an increase of symptoms the following one. I accept that, as I still want to experience life. I slowly progressed from not being able to leave the house, to being able to be out for a couple of hours (enough time for a pub lunch), to being able to be outside one day a week for 7 hours (definitely enough time to have a fantastic day out). Every weekend I had plans for us to either go somewhere or do something. We visited lots of English Heritage properties, tried all of the local pubs in a 5 mile radius, went on so many bracing dog walks around the county, visited friends all over the country and ticked things off the bucket list! We went on holiday five times around the UK and France; and each time I was able to visit and explore and have a fabulous time. I tried to reach out to people I’d lost contact with since being ill, to restore friendships. I love gardening and for the first time since becoming ill, in the summer of 2015 I was able to do much of the gardening in my vegetable patch myself. I tried to spend as much time as I could with my family; we went on regular day trips together, and I was able to start playing with my lively nephews again instead of just watching them! I had definitely adopted the attitude to try and make the most of your life, and to make memories. I had taken my old life for granted. I hadn’t realised how precious, how amazing, how much fun life can be, until I’d had my life as I knew it taken away from me.
After almost two years my daily routine looked very different to what it had been when I was first diagnosed. I was now able to shower, get dressed (in real clothes!) and be downstairs within the hour. I could cook my own breakfast, my own lunch and dinner for us both in the evening. I could happily potter around the house, and venture in to the garden. Much to Phil’s excitement, I had taken on all of the daily household jobs- washing up, washing the clothes, cooking food, putting away the shopping, feeding the dog -I could do these job as as long as I rested regularly whilst doing them. In the beginning the washing up would take all day; piece by piece with rests in between. However over the months, I was eventually able to do it in one go. There was still a lot I couldn’t do – anything involving lifting, walking very much or anything that exerting too much energy. However we adapted; I arranged for us to have a cleaner, and Phil would do all the difficult bits I couldn’t do (e.g. carrying things up the stairs, digging the garden). I was still doing my daily exercises but these had been increased to 25 reps and now involved weights. I had also started walking three evenings a week, and could now manage 400m without ill effect. I discovered new hobbies I could do without exerting too much energy (cross stitch, games) and rediscovered old ones (keyboard, sewing). In the beginning I was only able to do these activities for 5 or 10 minutes at a time, as they tired me. However by doing them regularly I was able to increase this. I can genuinely say that I was really happy and content with my life at this point; I don’t think I ever stopped being thankful and relieved that I’d improved and got some of my life back again.
4 thoughts on “My PH Journey So Far – The Last 2 Years”
It’s incredible the amount you’ve managed to do. I really think your unbelievably positive attitude has helped and I’m so glad you managed to get some of your life back. I was so surprised at how much you were able to take part in Louise’s hen do xxx
Hi Kate. I save my energy for special days with special people! 😉 x
Love reading your blog Sarah. We take so much for granted and don’t realise until it’s taken away. I hope you continue to increase in strength and enjoy lots more of the ‘little things’ in life. Sarah x
Hi Sarah. Thanks, I’ve certainly learnt to take great pleasure in the little things in life! 🙂 x