We Did It

 Dear Readers,

We are super excited to let you all know we reached our target for the portable oxygen concentrator crowdfunding campaign!! Here is my new POC!!!

A huge thank you to those who have supported us & donated to our crowdfunding campaign. From the minute it started back in January, the support we have received has been outstanding. To those who have very kindly & generously donated, we cannot thank you enough in helping us to reach our target amount!

As I previously said, having a portable oxygen concentrator will mean I can take oxygen with me whenever I go out, or travel across the UK or abroad. Sadly PH is a progressive condition and my PH symptoms have worsened, meaning I am now relying on oxygen daily, throughout the day.

It really will make a difference to my life & it means the world to me that you’ve got behind my campaign in helping me to live an easier life, despite having an incurable illness. Yes, PH affects my life every day, it’s not easy, but I will never let it beat me. Hopefully a cure will happen in my lifetime, but I know I will keep fighting to the end! Finally a huge thank you to my husband Terry for running the 10K with your mates earlier this month this campaign! I can’t believe we did it!

We hope that whilst this campaign has been running, it has helped to raise awareness for Pulmonary Hypertension. PH patients are so fortunate to have the wonderful PH charity, PHA UK supporting their journeys and as mentioned in our campaign that should we be fortunate to reach our target, any further funds will be contributed to the PHA UK. As a celebration of reaching our target, Terry is donating £100 to the PHA UK. For us, this charity continue to gone above and beyond and their support throughout my PH journey has been vital. 

Terry and I have been very busy juggling work and hospital appointments, but even though we're married we still believe going on dates each week are still very important. Whether its going for a quick drink or going out for the day, it's nice to set aside some time together. For our most recent date, the venue were very helpful in supporting my PH needs. When we go out for the day, there's always so much to think about regarding my accessibility, but once we have got everything together and everything is in place at the venue, then we can concentrate on enjoying our time together.

Talking of hospital appointments, I recently went to the Royal Brompton for the PH clinic. It was a very busy day full of tests, scans and blood tests. My appointment went well, and I am jogging along nicely. The good thing is my heart and lungs look stable, but I need to be on my oxygen to make sure my sats stay   at a good level. If I am exertion myself in anyway, ie, walking Izzy, I have to be on my oxygen, or go on it as soon as I'm back at my car. I do get very self-conscious wearing my oxygen, but it is a part of having PH and oxygen therapy is vital.

We were very fortunate that many of our donations were received thanks to our newspaper article promoting our crowdfunding campaign. Today we featured in the local newspaper to say thank you all of our supporters, and to let those know who had read our previous article that it had all been a success. You can read the article online, here.

We're currently looking at holidays for this summer, taking into account the price of travel insurance, as many know with pre-existing medical conditions, the insurance comes at a cost. We also have to think about the accessibility needs when at the airport - eg, using a wheelchair to get through security and to and from the boarding gates. Plus letting the airline know about my use of oxygen on flight. When booking a hotel, not only do we look for the usual of star rating, entertainment, etc, but we have to check whether the area we are staying is mainly flat in gradient, the hotel has a lift(s), international speaking doctors nearby, good transport around the area and a beach in a short walking distance.

Although there is a lot to consider and to arrange before going away, it means we have peace of mind for when we go away and a lot of the stressing will hopefully be lessened! If you have any other travel tips, then please let us know!

I've been asked to take part in a few research PH studies and recently sat down to have interviews with PH organisations across the world. So I'll be back soon to share my experiences and to let you know about our upcoming projects soon. We hope you have a lovely Easter! 

Thanks for reading!