Dear Readers,August hasn't been the easiest so far, but as I say, "life is a rollercoaster, full of ups and downs, we may at times lose control, but we will always get back on track!"
Over the past few months, my health hasn't been at it's best and I've been slowly declining as time has gone on. Now we are out of lockdown we are able to do more things, without restrictions, but I've not been able to do much. Which I find very frustrating!
My symptoms have become more and more severe and I've had to use oxygen at every moment to get me through the day. My oxygen sats have been dropping to the 70s and my breathlessness is interrupting everything I do, even when I talk, and I talk a lot! Haha!
I have been very much looking forward to this Brompton clinic and to be honest, I had been counting the weeks, days and hours until the day arrived. My PH team know me the best and I know they would be the ones who would help me out.
Despite the severity of my symptoms, I have still been able to get on with work (which I am still loving!) and attend events, such as weddings. I have managed to keep the balance, which has kept me going. Every time I knew I was going out, I'd be on my oxygen and as soon as I was home, I'd be back on the oxygen. I don't wear oxygen in public, unless I really need to, but wherever I go, it is always to hand, usually in my car. I have also been sleeping with oxygen at night as I have been choking in my sleep. At times, I stop breathing whilst I'm sleeping and wake up gasping for air, so having oxygen helps. The Brompton have requested a sleep study, to see what is causing this.
So Terry and I attended the Brompton on Monday 16th and it was the first time we had been on the underground in a year or so! We are fortunate that we can park our car at my Aunt's house and because her town is on the District line, we only had to get the one train to South Kensington. We took my wheelchair and Terry pushed me from the station to the hospital and we arrived super early! I don't know the rules of taking a patient to the Brompton, but as Terry is my main carer and I needed assistance with my wheelchair, I let them know in advanced and he was allowed to accompany me to my tests and appointment.
My first test was the ECHO scan, it lasted the usual time around 45 mins-hour and then I went for my ECG and bloods. I was super happy that bloods worked first time!!! Those who follow me, know that blood tests are the bane of my life, as my veins are terrible and love to collapse. I had prepared myself for the bloods and drank looooads of water!
Terry nipped out to get us some lunch and I went for my 6 minute walk test. I was absolutely dreading this and I knew I wouldn't be very good at it. I am usually pushing myself to the limit, because I can, and try and beat my personal best. However this time around, I knew there wasn't going to be any of that. I took it really slow, had my oxygen and walked the slowest I've ever done (in a long time). Results showed I was 100m down from last time, which wasn't surprising.
I was exhausted from tests, but Terry had got us a nice lunch and we chilled out for a bit, until we saw the doctor. I let him know everything that had gone on in the past few months and how frustrating it has been for me. I have been so good for such a long time, that when bad episodes happen, they do get me down. This also showed on my emPHAsis-10 questionnaire, with the highest score to date, (the lower the score, the better.) "EmPHasis-10 questionnaire is used during clinical assesments to determine how pulmonary hypertension affects someone’s life. Developed by the PHA UK in association with the University of Manchester, the tool is now used all over the world."
As the PH consultant wasn't available that day, I spoke to another doctor, who was very good, but unfortunately didn't know me too well so he decided to call those who did. That's when we spoke to Carl and Eva, the lovely PH nurse specialists. Carl has known me since diagnosis, so he knows my PH journey the best and he knew something was definitely wrong. He did give me some very positive news that from looking at my ECHO results, my heart muscle is beating well and is still strong. So that's wonderful to hear! Even though my symptoms are severe, it also showed that I am not in a critical position. If I was, I would have been taken in to be monitored straight away. However, that doesn't answer the questions as to why my symptoms have deteriorated.
After a long discussion, we have decided that the PH team are going to look at my ECHO results in further detail and discuss my health situation at their weekly MDT meeting. They will ascertain what needs to be done to move forward. I will wait to hear from the team with their decisions which will either be that I need to return for further investigation or change medications. We all believe it will be the latter.
I have been on the same medication, Sildenafil, since diagnosis, which is 13 years ago now. Medication can run its course and new medication need to be introduced to the body. I am also on Macitentan. This was introduced when my symptoms deteriorated 3 years ago. I felt the affects of it very quickly and it's been very good for me. We all hope that if it is medication, I can get onto it as soon as possible and get back to enjoying all aspects of life.
There is positive in this blog and that is even though my symptoms have worsened, they can be controlled and managed with medication. If there was deterioration in my heart organ, then that would be a big worry. Until further news, I am home, sleeping, eating and resting! A big thank you to the PH team at the Brompton for their continued first class care. I will always have trust and faith in my team and know they will get me back to living life to the full. And thank you to you for all of your messages and support, I'm sorry I've had to cancel many plans, but once I'm back to feeling good again, we'll get together for sure!
I am also looking forward to seeing the PHA UK team soon to give an interview for PH Week 2021.
Thanks for reading!