Below is a picture that shows you the difference between a 'normal' person's heart, and a person with PH. The second image of the first figure which is of the heart and lungs is what my insides look like, and in the second figure my arteries are the 3rd image described as 'severe PH', (PAH - just means Pulmonary Arterial Hypertension).
There are two types of PH, secondary and primary. I suffer from primary pulmonary hypertension (PH) as this disease is not caused by another disease and has developed without a known cause. However PH can also develop as result of other diseases too and this is called secondary pulmonary hypertension (PH).
Because this disease is so rare, I don't know anyone my age that suffers with the same disease. I have a couple of friends that do have PH, but they are not around my age. Age isn't really a huge deal but it definitely would of helped me if I knew someone who was doing there GCSE's with this stupid illness like I was or something along those lines. We still get on and have a fabaroonie time when we're together and I've learnt to deal with the fact that I probably wont find someone my age but life goes on.
Stacie, a very good friend of mine who I have known for a rather long time, suffers from secondary PH due to two holes in her heart. She was diagnosed at 11 in 2001, in 2012 at the age of 21 she was put on the list after 11 months of waiting to go on it and now Stacie is 23, still fighting and waiting for a heart and double lung transplant (which I hope she get's very soon). Stacie also writes a blog where you can keep up to date with her fabulous life, so at the end of this blog post I will attach a link to her blog 'Life Is Worth The Fight'.
Kat, suffers from secondary PH too due to systemic sclerosis, which is a variety of schleroderma. Schleroderma is a rare disease of the blood vessels, the immune system and the connective tissues. The body produces too much collagen and then the collagen binds the body together. Kat has recently returned from the US after receiving a stem cell transplant. Kat also has her own wesbite called 'Katrina's Future', where she fundraises and makes people aware of schleroderma, so like Stacie's I will attach a link to Kat's website.
Because PH can make you tired and lethargic it makes it more difficult to do 'normal' everyday things. The symptoms i suffer from due to PH are: breathlessness (mainly), dizziness, feeling faint, chest pain (particularly during exercise), migraines (mainly) and tiredness (mainly). We have to avoid lifting heavy things, bending and over stretching. We may need to use extra pillows to raise our head to make it easier to breathe. We may need to wear lighter, baggier clothes as sometimes just putting them on is a task. Towel drying yourself and washing your hair can sometimes be a killer with all the movement so others may need to do it for us or we made need to just sit for a while so that we can 'air dry'. Sometimes we may need to use a wheelchair when out and about as well as carrying spare medication in the car with us.
All of the above applies to me, and it's pretty poopy at times but you learn to get on with it, as it's life now or for some people it's always been that way and no one can change it. But there are many different treatments available for pulmonary hypertension (PH). These treatments can improve the symptoms of PH and therefore improve quality of life. Some can slow the progression of PH and can also help reverse damage to the heart and lungs. Here you can read about the types of treatment there are available to us PH sufferers - http://www.phassociation.uk.com/treatment_for_ph/
Now, last but not least fundraising, the fun bit. Fundraising for PH goes towards improving the lives of people with PH and raising awareness of the condition. Through the pha UK website you can fundraise and you are also able to choose how you would like them to spend the funds you have raised. This includes:
- Helping to raise awareness of PH
- Research into improving treatment and finding a cure for PH
- Educational literature and DVDs for PHA UK members and medical professionals
- Financial grants for people with PH to help them purchase medical equipment
- Family weekends
- PHA UK conference.
You can learn more about fundraising for PH through the pha UK website (pulmonary hypertension association UK) here - http://www.phassociation.uk.com/get_involved/fund_raising.php.
PH is a horrible disease and I wish I didn't have it, but I seemed to have pulled the short straw in life and there's nothing I can do about it. I hope for a cure to be found one day, or for a better treatment option that can make me live forever (or at least to a decent age, maybe 60s/70s maybe even 80s or is that too cheeky?) But for now, it's me, my epo and my tablets.
Thank-you for reading and I hope I've made all you lovely readers aware of this horrible, stinking, stupid disease that myself and so many others suffer from.
Love, Erika
Stacies blog - http://stacie-lifeisworththefight.blogspot.co.uk/
Katrina's website - http://www.katrinasfuture.org/
pha UK website - http://www.phassociation.uk.com/
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