PHighter Friday: Stacie

It was 2002, so nearly 13 years ago now, I was 11 years old just going up to secondary school. I was born with 3 holes in my heart and was regularly being seen at Bristols Children's Hospital at this point in time so I had always been ill and knew how to not push myself in regards to exercise. I had recently had a operation because my condition was declining more rapidly than we were used to I was due for a follow-up appointment at Bristol the first week of secondary school. During my first week of school I collapsed several times because unlike my previous school this school had a lot of stairs. When I was seen by my consultant at Bristol he told me he had no way of treating me any more and I either needed a heart transplant or it could be Pulmonary Hypertension in which case I had to decide whether to go for a heart transplant or try the trial that Great Ormand street were carrying out on children. A heart transplant was obviously extremely daunting for 11 year old me like it would be for anybody, no matter their age, so I decided to try the trial with Great Ormand street and if that didn’t work we could then go for the heart transplant. I was later diagnosed in November of 2002 with Secondary Pulmonary Hypertension.

I was extremely lucky, they inserted a small 7mm (millimetre) tube into my pulmonary artery which helped keep it open during exercise, I was placed on Bosentan and warfarin and these worked great for quite some time I managed to make it through secondary school as a normal teenager or at least I appeared normal to everyone around me, I was also having oxygen whilst I slept, it was when I was 18 and in college that things started to decline again we put me on Sildenfil and then had to up it again because it made no difference, once again it made no difference at this point it I am 20 years old and it is 2011 the time had come for transplant. In the UK you cannot be put on 3 different types of medicines or “therapies” as they call them due to financial restraints within our NHS unless you are on the transplant list so for me to get more meds this was the way forward.

In May 2011 I had to meet with a transplant consultant from one of our transplant centres Harefield this was to see if I was even a candidate for transplant, she decided that I was and and this then proceeded to a 3 day assessment at Harefield hospital just outside of London. For any of you reading this who have Pulmonary hypertension to explain the tests you have to do for a transplant assessment just think of all the tests or procedures you’ve ever had to do for your PH and that’s probably in the region of how many tests you have to do, just to give you an idea. I had to wait 6 weeks following this to find out that Harefield would not transplant me because at the time they could only do double lung transplants and my heart was just way too damaged for that procedure this was when I was passed over to Papworth hospital near Cambridge 1 of only 2 hospitals at the time that could perform Heart and double lung transplants in the UK. I had to do everything all over again the initial meeting the 3 day assessment until finally after 11 months I was placed on the transplant list on April 20th 2012.

Now that I was on the list I could be given extra medication we first tried the Iiloprost nebuliser which I persevered with for 10 months but it did in fact do nothing and my condition declined in that time and then finally we gave me a Groshong Line and placed me on Flolan/Epoprostenal which although has made no significant improvement to my condition has been keeping me stable for the past two years while I wait for my transplant.

On April 20th 2015 I will have been waiting 3 years for my transplant. I can’t say being on the list is easy because it is extremely far from it I’ve had some very scary times whilst on the list but it’s like anything I would imagine you have your good and your bad days but you really just have to make the most of the good days. If you happen to end up in the same position that I am in I think you just have to try and stay positive, I’ve had 3 false alarms for organs in those 3 years and although at the time they were devastating to me because they didn’t end up going ahead they were each learning curves. My first taught me what types of organs I was willing to except, the second showed me just how scared I really was and the 3rd taught me that I really truly am ready for this.

Although I am on the list I still manage a few things I’m very close to getting my history degree after 3 years of studying which I wasn’t sure was going to happen when I was told at 18 I wasn’t allowed to go to university by my doctors. I still manage to be a awesome sister, daughter, aunty and friend. I also actively try to promote and raise awareness for Organ donation and Pulmonary Hypertension. As much as it sucks needing a transplant and having Pulmonary Hypertension I have never let it define who I am or stop me from being who I’ve always been and it has in fact let me help other people. It is a hard road to travel but it’s what you do whilst you are on that road that matters.

Blog:- stacie-lifeisworththefight.blogspot.co.uk
Twitter:- @staciep90
Facebook:-  www.facebook.com/stacielifeisworththefight

PHighter Friday: Elise

When were you diagnosed with PH?

I was diagnosed with PH at the age of 19. Thirteen years ago.  At, the time I was living in Long Island, and was being my usually active self, when I realize the tasks of everyday living including walking were becoming extremely difficult.  I remember being at the gym and doing a leg workout, and having to sit with my head between my legs from being so dizzy.  That same summer, my mom came down to visit me from CT and as we were walking on Jones Beach, I couldn’t take more then 5 steps without having dizziness, ringing in my ears, and shortness of breath.

After finally passing out a few times, it was tine to see a cardiologist.  And after several tests including an EKG, Echo Cardiogram and a right heart Catherization it was determined that I had primary pulmonary hypertension and was in stage 3.  Being so young I didn’t quite fully understand how life threatening this disease was. Growing up as competitive dancer and being a personal trainer and weight lifting, I just wasn’t going to let this get in my way.

Medication:

After responding to the first oral medication Traceller and being on Procardia XL I was back and able to perform my daily activities, and even went back to the gym to train and workout.    With motivation behind me I decided to compete in a fitness competition, and I successfully did 3 years after being diagnosed.  Along with competing in the Miss CT/Miss USA pageant with the platform of raising awareness for PH.

Daily Activates:

I’ve been a very good responder to the medication and have recently gone off of the Traceleer and now am just taking Norvasc 5mg, (generic brand to Procardia). This year all my tests came out normal showing that my PH is very much under control; I’m able to walk, run, lift weights, and do it all.  I’ve found that keeping my body in shape helps.  The only thing I do realize is that I need a lot of sleep, because my body gets run down and I’m more sucseptable to getting sick when I don’t take care of myself.

The Hardest Part of PH is the medical insurance part. Because I don’t work for a corporation and I am self-employed getting insurance and good insurance to cover all the expenses is so difficult.  When I was younger I was on my parents insurance and I stay in college purposely as a full time student until 26 so that I was covered.  I was also on Cobra for a while and paying over $600 per month on insurances. The struggle has really been financial especially because I’m now on my own.

What does the future hold?

 I’ve been extremely fortunate that I am in the 10 percent who responds well to being on 1 medication, but since going off of the Tracleer most recently, I will have to go for tests (EKG, ECHO, PFT’s) every 3 months to make sure that nothing has changed.

I don’t know what the future holds I could get worse with age, or maybe I could stay the same? I’m not sure. All I know is that I never take life for granite and I appreciate and live life to it’s fullest. 

I’ve accepted the fact that it’s probably not in my best interest to birth my own children but I’m okay with this.  I was always a believer in giving a child a home who needed it.  I’ve come to grips with life, and decided that I am the only one who can really make my dreams happen.

Elise Firestone
www.elisefirestone.com
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