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.

DO NOT D0 THIS WITHOUT YOUR DOCTORS APPROVAL

I read a post from a ph patient who decided to cut her meds in half.  Please do not attempt this without talking to your doctor.   There is a really good reason why.  My doctor told me  coating on the tablets are there for a very good reason.  They help the tablet to release the medicines as we need them, not in one big belt.  if you cut the tablet you are leaving a part of the medicine open to release all the meds in one big hit.  This truly could harm you. Trust your doctors.  They decide how much we need.  If they decide to reduce your meds it will be done in a controlled way and the new lower dose medicine will be delivered to you in the correct dosage. I think the person who was cutting her tablets in half was struggling to afford them. We are fortunate here in the U.K. to not have to deal with this worry..   We are fighting a huge battle as it is, don't make the problem harder by playing Russian roulette with your medicines .  I believe children are given medicines for ph crushed so not sure how that works but for me I am told not to do this. Maybe for those of us on the biggest dose of viagara it can be harmful. 

A really bad day

Yes today I am broken, I do not know why.  I woke to a "normal" day but it was not to be a good day.  I searched the computer for the latest blog I am writing to Izzy.  I knew there were quite a few pages of things we had done together in this latest one.  I appeared to have lost it and as Colin searched for it I broke into a thousand pieces.  I cried and cried.  Colin held me and said all would be well but I knew I was not just crying for the lost blog, though I hated to lose the memories we had shared.  I was being selfish and crying for me.  I try to be strong, I really do and generally I am.  I am positive and even with all this crying I am still am but the damn had broken, the tears would not stop.  

I knew I was crying for my parents and brother who have died, I so need them right now, for their strength to help me cope with pah. I was crying for my family I no longer have, for the friends that stopped being supportive when I had to keep saying no to events I used to manage easily.  I cried for all those we have lost to ph, they are never forgotten.  Oh I just cried and cried.  Ridiculous as I am generally so strong.  Something broke in losing the blog, something crashed into a thousand pieces.  The pieces will mend, of course they will and just as we can fix a special broken cup with glue I too will mend, I do know that  but right now feel I will never be quite the same again.  The cracks will show, no matter how much I try to paste over them. 

Maybe I am tired, we did have a meal out with 14 of our lovely friends last night so hopefully it is just that pushing me over the edge.  I hope so as I would hate to lose the optimism I have for the future, hate to be forever in a dark place.  So to that end I will cry it out and push it away.  Hopefully to not cry again for a long time.  Not that I am ashamed of tears.  I always say we need to use them from time to time.  Why did god give us tears if we were never to be used.    So use them  I will today and then put all of this behind me, hopefully to wake up to a new day dawning where I have all my positivity back, my faith in the future and new beginnings.

Oh and by the way, Colin found the blog and I completed it so it went in her memory box with the other 86!  Result. 

I think my husband is trying to kill me

Colin actually is a super star and does all the cooking.  I always did it until ph raised its ugly head but actually he enjoys it and does a great job.  However one thing I just can't seem to get across to him is I really should not take too much salt.  I can't see me living a life with no salt in my diet at all but we are fortunate that all our meals are home cooked.  We know exactly what goes into them unlike processed foods  which often are loaded with salt.  I am happy for him to put a little salt when cooking veg and for seasoning when cooking BUT I do NOT want salt on my meal when it is cooked and ready for eating.  However I can hear him grinding the salt and pepper over our cooked meals.  I keep telling him and telling him it will kill me.  The following day we go through the same process again!  Should I read something into this. Does he has an ulterior motive?  Anyway I think I have got the message across at last, we will see. 

Do you have one of these

If you have one of those Medic Alert bracelets like or similar to the one I have there is something you should remember to have recorded.  As we were filling in my form for any changes to my condition or meds this past year I remembered this.  People with pah really should be very wary of being given nitroglycerin if taken to the A and E Department.  Our meds already widen all our arteries and nitroglycerin does the same. The result could be an overload.  So be very careful.. We have added it to our list so that should I ever be taken poorly and my medic alert bracelet comes into play they have all the correct details, it just could save your life.  Mine says under no circumstances must I be given nitroglycerin, maybe you should think about adding it to yours.

Transplant News

Steph Ingram had a lung transplant last Saturday.  The news was that all went well.  We have not heard anything since then but we all hope it continues to go well for Steph and she can begin to enjoy a new life.

Lyz Clements - Well what a Topsy Turvey week she has had with three calls for new lungs in a week only to have them show to be of no use to her.  As she is at the top of the transplant list along with about another two I feel sure it will not be long now.  Of course our hearts go out to the ones who donated organs.  Such a hard thing to do.  Everyone who is waiting for organs I hope you hang on, I hope your time comes.  I can't say soon because that of course means another death.  Gosh how awful all of this is.  

So many lovely things

Ahead of us are many delights to look forward to.  Meals out with friends, always lots of fun, a weekend away with Izzy and two of our friends and their two grandchildren, Christmas day with the family and boxing day with family too, though this time at Danielle and Chris's place.  Pantomimes and festive fun, all on the agenda.  { I actually don't see the panto as there are too many steps to deal with but still happy times for family}  For healthy people there is just the nice thoughts of all ahead.  For those of us phighting ph we have to remember to rest, rest and rest between each and every event.    If we overdose on things it can knock us back for days at a time so remember, take it easy and get your feet up whenever you can do. 

House news

Well it is growing for sure, in fact they are beginning to put in the earth wool that is used to insulate the house.  As it is an eco house we of course want to use eco friendly insulation and this is one of them.. Sadly as the weather changes so will the time being spent on our house become less and less.  The builders take two weeks off at Christmas and the New Year so again all things stop.  The hoped for roof on before the end of November won't even happen before the end of December but at least we can see progress each and every time we visit the site.   Cant wait to be in and getting sorted.  Seems such a long way off yet though.

Emphasis Magazine

I received mine yesterday and I just need to say a heads up to all who contributed to this wonderful magazine and to the ones who made it possible.  We always find so many things of interest.  We have articles from our ph family and we always have the latest updates on what is happening with some of our medical professionals.  It is always put together so beautifully and is so looked forward to each and every time a new one is due out.  Well done for everyone connected with it in any way.

I wrote this blog a few days ago. fortunately I am feeling much more upbeat, don't know quite what happened to push me so low.  We are going to see our Izzy in her play this afternoon.  Looking forward to seeing her with a beard!

Go well everyone.  It is so lovely when you take the time to comment or click like, it really is.  Sometimes writing a blog is hard but when I see the response it makes it all so worthwhile. It is a great way to stay connected to you all and that is so important to me.

Oh just an add on.  The Porter Crest of which I had asked for from the family to complete my family tree has turned up and it was left outside my door for me.  I can't tell you how pleased I am to complete the project I worked so very hard on.

Right, so now my day begins.  Hope yours all go well and that in the lead up to the festivities you remember to rest.

Warm love

Carole xxx