Home again after a three day stint at the hospital for the final testing since my denervation, excluding a few follow on telephone calls. So in the space of a year my pressures have dropped quite well and my blood flow has improved marginally. Any improvement, drop etc is great news for those suffering with PAH and this could just be the procedure to push back those numbers in our lungs.
I can't speak for anyone else as to how they are doing but for me I have to say having had this done it has been a success. The truth is we have no way of knowing if they will continue to drop since the small bronchi that caused a lot of the pressures have been damaged. Deliberately of course to try to stem the rising pressures. As we are not very long into this procedure, (actually only 13 done so far as opposed to the 15 I thought) it is early days but we can hope that this proves to be a game changer. I feel blessed to have been one that was able to participate in this vital research and I pray it continues.
I know that this procedure is now being done in America and my doctor that performed it here is carrying on the work over there. Trust me if you are offered this have no fears. The procedure itself, though it sounds daunting is really not and the end result may quite well be similar to mine. Nobody can say at this stage that it will work for all but maybe you give it a go!! I await with you all the day we can say we USED to have pulmonary hypertension
One lovely thing was when I was waiting to go into the theatre for my extended right heart cath was that I once more saw Dan, he was the nurse that took such good care of me both in the theatre working with the team and afterwards in the after care. I have seen him each time I have gone back to Northern General and it was great to catch up with how things were. When I was being wheeled out of theatre I said to the gentleman pushing me I really needed to see Dan as I wanted to tell him my pressures had dropped, I knew he would be thrilled. How blessed I was that once again he had swapped patients and took care of me. We with ph are truly blessed with the people that care for us.
Back at the hotel I was obviously elated so I rested for quite a while and then we went out for a nice meal to celebrate. It did not take long for me to drain of all energy which surprised me but I think sometimes even good news can tire us out!
Monday was my MRI date and so I expected it to be a rather long laborious time in the machine. I have no fears of them but I just knew I wanted to get home as I have so much to do! Actually it did not take too long and tacked onto the end was another bit that was actually something they needed to begin another trial, not one I am to be involved in but they just needed a willing patient!
I managed to get up onto M2 to meet up with Lucy Smith who is to begin to change over to inhaled medicines as she has had many problems with the iv line. She looked to be in high spirit though missing her children very much. Sadly I could not spend long as I needed to get off but once agin I have put a face to the name of one of my ph sisters which is always lovely.
Phil Marshall
I am sure most of you like us here were glued to the little blue dot with the number 182 on it as we watched Phil run over six days and nights to raise money for the ph charity. His aim was to raise £3000 but this was soon smashed and it rose to £5000 which was his new total. Even as he began his run he could have had no idea as to how enthralled we all were with what he was doing. This was no normal marathon, no this was a run across the spine of England, one of the most brutal races in the world, in the worst weather conditions and the race was 268 miles!!! All of this for us because his lovely wife Sarah has pah and is awaiting a heart and lung transplant. Well he has almost reached £10000 yes ten thousand pounds! Mind you this was so enthralling and most of us sat watching the blue dot with tears in our eyes as we saw just how hard this race was. I know myself and Helen, another ph sister were messaging each other in the middle of the night whilst watching how he was doing. We saw people dropping out like flies as the going got way too tough for even the hardiest of souls who had completed this race before. At once stage I must confess I even willed him to stop as he was racing in waist deep snow drifts and with sickness and diarrhea and my heart wept for him. Did he give in, not on your life, he battled on through all the weather threw at him, all the tummy bugs he coped with and with jubilation we saw the blue dot reach the end!!!!! Words cannot really explain the awe in which we hold this young man in. I hope the donations reach to the £10000 mark, he truly deserves every penny raised for our Pulmonary Hypertension Support Group.
Steph Ingram
We were all wondering and worrying about Steph as we had heard very little since she had her lung transplant before Christmas Fortunately we now know that the lungs have taken well. Steph needed a few bronchopys { wrong spelling } and a tracheotomy but now is coming on great. She has lost an awful to of weight so an aim is to get some of this back. Right now she is still residing in critical care but at last things look to be on the up for her. This news was met with relief all around for many of us who have been waiting with bated breath for news. Of course she has just been too ill to post, she did not forget us and our support is helping her enormously to cope with all that a transplant throws at the recipient. We all wish her well and now things are moving forward a speedy recovery.
Skiing and buffs
We bought Izzy a new buff ready for her skiing holiday next month. She absolutely loves being able to do all the various things with just a twist of the material here, a tuck there. The one she hates and says she will NEVER use is the ones that goes over her head and sits beneath her chin. She says she looks like and old woman but was quick to follow that up with "but not like you grandma" Thank goodness for that. Though now knocking on in years I do not want to look like the grandmas we had in the 50's.
So once again she will shortly be heading off for her annual skiing holiday. Though she goes reluctantly cos she is lazy she actually loves it when she moves on with her skiing and her and Harrison talk about their day when they all meet up after their lessons.
A holiday she is looking forward to though is one with her Nanna Joy and Harrison. Joy is taking them both to Centre Parks and it is one we have taken her to before so she will remember so much of it and will look forward in particular to the slides in the pools. She tells me they have added another slide so she will be in her element. I think it is so lovely of Joy to take them both together but brave at the same time, I have got out of the habit of looking after two little ones together. I look forward to hearing their news on their return.
So I will leave this blog now as I want to get if out today. and I want to go down and see how our house build is getting along. At least we are almost at the end of choosing our kitchen! Love to you all and once again please comment or at least click the like button so I know you are interested!!
Warm love
Carole xxxx
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