Tuesday 22 November 2016

Pulmonary Hypertension Awareness week

As it's Pulmonary Hypertension Awareness week I thought i would do a blog to raise awareness of this horrible condition that I have.
Most of you know that I have a serious lung/heart condition called Idiopathic Pulmonary Arterial Hypertension. It's not just "high blood pressure" as some people think!!! It is high blood pressure in the blood vessels connecting the heart and lungs (pulmonary arteries). This makes the heart pump faster to get the blood flowing round your body. It also causes strain on the right side of the heart and can lead to heart failure or even death if not treated with the right medication and the required specialists to monitor the condition.
There are many causes of PH, here are just a few:
Congenital heart disease
CTEPH (chronic thromboembolic pulmonary hypertension)
IPAH (Idiopathic Pulmonary Arterial Hypertension)

Pulmonary Arteries Hypertension or PH for short is a very  rare condition with only 7000 people in the U.K. diagnosed with it.
PH affects people differently in many ways, affecting the way we do our jobs, housework, getting dressed/showered/bathed. Even a simple task as going up a flight of stairs can become tiresome for us. There are a wide range of symptoms that include dizziness, fainting/black-out, shortness of breath, swelling of the feet/ankles/tummy, chest pain, feeling nauseous/sick, fatigue/tiredness.
I experienced majority of these symptoms prior to being diagnosed with PH two and a half years ago.
Luckily enough I have a good GP who picked up that something wasn't right with my heart and told me to go to my local A&E department at Royal Blackburn hospital. Once there I was admitted and they began testing me for all sorts of things ranging from clots on my lungs, hole in my heart etc. They then suspected PH but couldn't be sure as they don't specialise in that area. They sent me to the Royal Hallamshire in Sheffield, which is one of nine specialist PH centres in th UK.

Many of the specialist centres run different tests to diagnose PH including ECG, Echo-ultrasound of the heart, cardiac MRI scan, right heart catheter-allows doctors to measure blood pressure, 6 minute walk test, blood tests, chest x-rays. I myself have had all these tests done at different times when I have been to my clinic visits.
The treatments used for PH vary from person to person. Some people take oral medicines in a form of tablet, other people use nebulisers along with tablets, others have a Hickman line which pumps drugs straight into the heart.
At present time I am taking a lot of tablets which include diuretics, warfarin, omeprazole for heartburn/acid reflux, sildenafil and macitentan.
At the present time there is no cure for PH, but people can undergo heart/lung transplant or just double lung transplant. This is not a cure as you still have to survive the operation, will be on lots of drugs such as anti-rejection tablets, immunosuppressant tablets.

PH also has a big impact on our emotional well-being. It can be very frustrating at times as myself I realise I can't do what I used to do e.g. Walking the dog-I get very short of breath if i go for a short walk, I have to stop 3/4 times even walking on flat ground!!!! I used to play netball but obviously I had to stop that. I enjoyed swimming- I can still do this but it must be supervised just in case I start to feel dizzy or I black-out, so I always take someone with me.

I've tried my best to explain my illness in this blog, but writing this hasn't been easy as I have been lost for words and I also get very emotional when explaining to people about my illness.

Thanks for taking the time out to read this blog. If anybody has any questions then please don't hesitate to ask me about this condition that I have. Alternatively you can go onto the PHA UK website which is very helpful.
The website is www.phauk.org
#LetsTalkPH
#PHWeekUK


Thursday 3 November 2016

Research all the way

Hello folks, hope you are all well.
The last couple of days have been quite hectic for me.
I'm on half-term holiday and spent two days at the Royal Hallamshire hospital in Sheffield undergoing lots of tests, apparently after my last clinic visit I am deficient in iron, and there is a new treatment that the research team are trialling called Ferinject for iron deficiency in PH patients. This trial is over 24 weeks and for two of those visits I have to have number of tests done which I will explain as I go on in my blog. I have to stay overnight at a hotel so that the research team can do all the tests in 2 days.
I arrived on 2nd November and met Mercy who is "in charge" of this particular research trial. Mercy said she would put me up in a hotel for the night and also arranged for me to be picked up and taken back home via taxi so that I didn't have to drive all the way to Sheffield. I had all the usual clinic tests e.g. Bloods, ECG, urine test, 6 minute walk test. I saw one of the PH doctors (Charlie) and he went through all the information with me as well as doing a check-up on me to make sure I was medically fit to do all the necessary tests. He also told me that I wouldn't need to attend my usual PH clinic appointments as they will combine that with the research visits.
Unfortunately I couldn't do the bike test as the machine broke down just as I was about to start the test. So I was sent back to the hotel for the evening and me and my mum went over to Meadowhall shopping centre to get some tea and also do a bit of retail therapy.
The next day 3rd November I was told to be at the hospital for 8am as they needed to do a fasting blood test. I couldn't have any breakfast so I was absolutely starving!! I then went and had an MRI scan and came back to the research facility only to be told that I wouldn't be able to have the infusion as the bike test hadn't been done as it was still not fixed!!
So now I have to go back to Sheffield in two weeks time and hopefully I will be able to do the bike test as it should be fixed by then. And hopefully they will give me one of two infusions. I will either get the iron or it may be saline. Whichever one I get this time I won't get on my next visit which will be in February 2017. I'm hoping this trial will work, and make a difference to all the PH patients who are deficient in iron. The results won't be out for at least another year as it takes the trial 6 months to do. Hopefully if it works it could become a treatment for PH patients like me who are deficient in iron in the future.
 Hopefully I will meet some of the Sheffield patients next weekend 12th November at the Sheffield patient day.
Thanks for reading my blog.