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
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