DEDICATED TO THE MEMORY OF WOLF STANLEY - OUR PH BROTHER

Wolf Stanley

As many of you will have seen Wolf Stanley is in the last stages of his ph illness.  I believe he said initialy they were stopping treatment today.  What an amazing young man he is.  He wants us all to know how loved he felt by us, how our posts encouraged him and the support meant so much.  He too in turn was supportive to many of us.  He was to write a book telling of our stores about Pulmonary Hypertension.  Some of his last words on his video to us were that he was sorry he never got to write the book.  Today as I write this he is safe in the arms of his family.  His little girl should be with him too so I pray that brings him some peace.  It goes without saying that he is a guy who will be sorely missed.  He said he was shocked at just how much love was sent his way when he posted his video.  He should not have been shocked, when we need somebody we are generally all there for each other.

Since writing that post we have sadly lost Wolf, here is a Video he wanted to share with his PH brothers and sisters.

https://www.facebook.com/wolf.stanley.833/videos/10214340497363459/

I am gutted  that I missed a video call from him.  When I got back to him 18 minutes later there was no reply.  I will always regret that missed call.

Go well now Wolf wherever your journey takes you.  You take with you so much love.  xxx

Remember to cherish the ones you love.  Wolf had been doing really well, even asked us for our stories for the book he hoped to write, and then, almost without warning he was so desperately ill.  We cannot take anything for granted with ph. 

People without ph, except those dealing with us daily have no conception that the ph and/or the meds also can destroy our organs over time, the medicines are so toxic for our bodies, causing liver damage, organ failure and many side effects.  What is the answer!  There isn't one, we have no choice but to take the meds and hope for he best, hope for another day, week, month, year.

Christmas is over for another year.    

My Christmas Eve was so nice spent with lovely friends.  Though it meant an early to bed for me I was blessed to have the time I did with all of these lovely people. 

I know that sadly we lost a ph sister on Christmas Day and that another ph patient was admitted to hospital on that day.  Ph is relentless.  It does not stop and let us have a decent day, it does not think, "oh they deal with so much throughout the year let's give them a day off from ph".  Sadly it just continues its way with us.  Many of us will have been able to enjoy the company of family and friends but will now be paying the price.  It can take us days to recover from activities or just the sheer effort of speaking to our friends for what is actually too long for us. 

I was so spoilt this Christmas and received really thoughtful gifts.  Pyjamas from Ted Baker,  they are gorgeous it seems such a shame to wear them! A lovely new wheat bag for the pain in my shoulder and neck and some beautiful soap, the best I have ever had that made me feel so decadent when using it.  Plus so much more.  I realise how very fortunate I am and that family take into account my needs when buying me gifts.  

Though my Christmas was nice it was marred by an awful event, it ruined part of Christmas day but we do what we know how to do best, we just climb out of the pit and get on with it.  What we need do  now of course is to conserve our strength for the New Year, if you are looking to celebrate it. I personally I do not since my parents both died, I will be in bed, maybe seeing the celebrations going on around Trafalger Square etc.  Wherever you are or whatever you are doing I wish you a great 2018 and I go into it with the hope of more trials and maybe a cure on the horizon.

New Trial ahead

For those of you on treprostinil, a therapy that is painful for you they are now looking at a different form of treatment.  It was in the Pulmonary Hypertension News.  It might be of interest to you though it is in fairness only at the beginning stages of trialling.  I have put the link here so that you can check it out if you have not already done so.

https://pulmonaryhypertensionnews.com/2017/12/22/pulmonary-arterial-hypertension-cam2043-phase-1-clinical-trial-underway/?utm_source=PH&utm_campaign=06f3ad89eb-RSS_MONDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_fd7f2e1d35-06f3ad89eb-71490805

I am also adding a link from another of the wonderful PH News items we receive from America. This is a ph sister who shares her frustration of people thinking she is well as she looks good.  Maybe you copy  the page and show it to people who firmly believe you are not poorly at all.

https://pulmonaryhypertensionnews.com/2017/12/22/pulmonary-hypertension-physical-appearance-is-an-illusion-normal/?utm_source=PH&utm_campaign=2ac6f3d921-RSS_WEDNESDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_fd7f2e1d35-2ac6f3d921-71490805

Tooth Extraction and pain injections

The went really well, better than myself or my dentist expected.  My mouth did not feel sore afterwards and all is great.  I can now eat anything I want to do again, oh joy.

My pain injections for my neck did not work at all sadly.  I rang the pain clinic today to report this and they will get back to me next week when my Doctor is back at the hospital.  Hoping I do not have to wait too long to get more and of course hope for a better result.  

Really!  But he got a result. 

We went to the sales yesterday  I looked at the kitchen appliances at John Lewis and though we are not in a position to buy anything yet the guy seemed to take a shine to me.  In fact he actually said he would lower a price cos he liked me!  I think it was a bit of  clever marketing really! However I did come away with an AEG dishwasher at a really good price. This will sit in our neighbours garage now until we are ready for it, fortunately they are family.  

As we head off into 2018, a new year ahead for us all,  quite what it will bring we cannot know.  I know my hope is for a cure, as it always is.  Cures are found for many things and I still firmly believe ours is not far away.  

Enjoy seeing in the New Year if you are able to stay awake.  Take care and take my love with you. 

Carole xxx

PS - A picture of our Park today - Winter Wonderland.