Sandra E’s Story
Three years have passed since I was diagnosed with Pulmonary Arterial Hypertension (PAH) and it has been interesting to say the least. At the beginning I struggled to hang my washing on the line, have a shower without someone being there in case I fell and make the bed, now I can do all of those things with more ease. I have learned that one of the best things to do is to keep yourself in a more relaxed state of mind.
I do my best to not take on board anything that that I cannot handle or what may give me stress. It works for me. I was not impressed with using oxygen at the beginning but it isn’t a problem to me anymore. I wear it out sometimes to the shops, club and even a party one night. People stare sometimes but I don’t care, it will not stop me enjoying myself and being able to go out and do the things I want to do. When someone comes up to me and says,“What is wrong with you because you don’t look sick” I take the opportunity to explain PH to them. Who knows it may help another person to get an early diagnosis.
The times that my body feels cold we often pick up our swimmers and head down to Miranda Hot Pools as it is so pleasant to feel the warmth of the water surround your body. Sooo fabulous. I am then warm for the rest of the day. I have accepted that I can no longer rush around thinking I am invincible anymore. Sometimes I have a chuckle to myself when some little old lady passes me on the street. In my mind I think “How cheeky” but pleased she is still able to walk at that pace. It is also nice to have met the lovely people in our PAH support group. When we meet every second month we have a few laughs together. It is a happy event.
We have been to Australia a few times since diagnosis which is good as I thought maybe I wouldn’t be able to fly. Not the case, which pleased me. We pre-order a wheelchair and oxygen for the flight and away we go. January 2013 we went on a cruise for fourteen days. It was magical, no beds or cooking dinner just doing what you want. The crew members were excellent at helping with any of your needs. We took a portable oxygen unit and a wheelchair and had a most enjoyable holiday. My attitude to PH now is more calm and relaxed. I am forever grateful to my husband (Allan) and my daughter (Cilla), for without them I am sure it would be much different.
I’m also very grateful to the Doctors and the nurses that I see at Greenlane Hospital, Middlemore Hospital and the Manukau Super Clinic, without them it wouldn’t be a very nice life. The medication I’m on makes a huge difference to how I was when I was diagnosed to how I feel now. I look on my meds as a gift of life. I guess you could say, I’m in a pretty good place considering how it could be.
All the very best to all PH’ers where ever you are.
Shared with permission from NZ PAH Trust and Support Group