PLEASE STAY WITH US.

There are quite a lot of our ph family who are awaiting transplants, maybe just lung or heart and lung.  Throughout your ph journey you will have asked and received support from your fellow sufferers. The same sufferers will have received much needed help from you as you go about your life waiting the longed for gift of heart or lung. If you are fortunate to be given the precious gift may I ask that you please ................. stay with us afterwards.

Over the years I have seen people on here very active whilst going through their illness.  From not being too bad with ph to gradually deteriorating with their condition.  They have asked for and been given help, comfort and support by all members of the various ph groups.  They too will have given their support to other members. This is what the groups are for and they work very well. I have noticed however that some sort of drop us or certainly push us to one side once transplanted with their beautiful gift.  It is such a shame as these same people that worried about you through your transplant journey, sent well wishes through your carers etc. still need you. You are not forgotten by us once you go into a different category so please don’t forget us.  

Of course we understand you will join a transplant group so you can once again offer support to each other and these groups will be hugely needed as you each find your way along paths many of us are never going to tread for various reasons.  Also we understand that you do not have as much time to spend on our ph groups as life is changing for you.  We do know that you will have many obstacles too overcome after transplant, we do get that truly.  However the truth remains that there are many hoping and praying to follow your path and will need to ask many questions of your journey after your transplant.  

Don’t get me wrong, not all of those transplanted leave us.  Catherine Makin for one is still a huge part of pulmonary hypertension groups and is a much loved member of the ph support group uk set up by our wonderful leader of the group Ian Armstrong and his team. I don’t think a day goes by when we don’t see her posts about her walks around her beautiful village or pictures of the flowers and birds in her garden.  Apart from the fact we love Catherine her posts show us somebody who has gone through such a huge step and is living a life.  Her excitement when each new goal is achieved is applauded and cheered by many of us.  We also know life is not a bed of roses after transplant.  These people have to go through so much and do so with determination and gusto for a life to be led.  Those awaiting and hoping for such a gift breath in all they can about their lives after their gift so how sad it is to see others leave us hanging after the support offered and given in their journey up to and through their transplant. Life moves on for us all in various ways and we are truly pleased you are still around somewhere but please if you read this come back to us, give the hope and encouragement so badly needed by those hanging on waiting for that gift you received.  If you don’t wish to come back however we do wish you well as you go about your life with your gifted organs.  In the meantime a HUGE thank you to Catherine Makin who has stayed with us offering hope to those who may be fortunate enough to join the list of transplanted sufferers and the few others i have not named on here who help us all too.  We do applaud you as you go on your journeys and thank you for not leaving us and continuing to show us there is still a life to be lead.  

June 11th.

The date in our diary when the neighbour from hell in our old apartment block will hopefully get his just desserts,  200 pages of abusive pages of e mails and also many Victim Statements are awaiting him and we of course hope for a decent punishment to be given.  Whilst he admits to sending them to everyone in the apartments he said he does not believe he is guilty of harassment.  Well we shall let the courts decide but I am pretty confident they would not be taking it so far if they felt all that was needed was a polite word to him to stop it.  It is a pity he does not rent his apartment as we could have grounds to get him out but alas he owns it so we are stuck with him. 

Life moves on

We both had our second jab last week and my daughter and almost son in law are awaiting their second one in the next few weeks with my son set to receive his first next week. Leaving politics out of this post I can’t help but be impressed by how this country has dealt with the vaccinations, Yes  there were mistakes made and these certainly cost precious lives but the speed of the rollout has also saved many and we are so thankful to the research teams and our wonderful NHS and volunteers who have worked tirelessly and continue to do so for us all.  One day we hope life will return to normal.  In the meantime we shall continue to take a great deal of care and continue to follow all guidelines.  

Iron replacement has no benefit.

Iron Replacement Has No Impact on PAH Severity, 2 Trials Show

I was actually shocked to read this as I receive ferrinject infusions around every two years since having ipah.  Certainly I have been much better and my exercise capacity increases greatly when I have mine,  Just before Christmas I was terribly poorly and was so out of breath and my heart rate sky high on just moving a few paces.  Life was pretty awful and a visit to Sheffield showed low ferritin levels.  A 12 minute infusion of ferrinject was given and I went home.  Now it takes around three weeks for the body to fill up its store after infusion but yes, it worked and almost three weeks to the day I was out walking again,  I noticed that gradually my breathing improved and at last I could see a huge improvement,  I am not one of those that feel better a day after infusion but yes, three weeks was all it took to get me to get to where I felt human again so a very interesting read from the research papers indeed.  I wonder if it means just generally giving ferrinject infusions in those that are NOT showing signs of distress,  I know I was on a study many years ago,  more than likely  this one as I have been on so many where despite no symptoms we were given infusions of one or the  other over a period of time,  For me though I know that many times when I DO feel so poorly that ferrinject has helped to bring me back to living instead of existing.  

The dress.

Can’t say much about this as it may be seen by those not allowed to have any knowledge of the wedding dress until the day but I will say what a privilege it was to see my girl trying on her wedding dress.  A day I never thought I would live to see cos of my ipah and I had a front seat view watching her try on beautiful gowns,  On the hangers they looked like nothing more than a froth of lace and ribbons and pearls etc. but my how they were transformed once she got them on!  Stunning they were,  Three were great contenders but when she tried on a fourth, the last one we knew it was “hers”.  She looked truly amazing and I know Chris will shed a few tears when he sees his beautiful bride, my amazing daughter walk down the aisle to become his bride.  I can’t wait for the day, excited already!   

Another A @ E trip

Not for me but for  Izzy. Her school rang to say there had been an accident and her thumb was hurt badly after having the heavy cones used to separate areas dropped onto it.  Apparently she was asked to help shift them and a boy dropped two on her thumb.  Grandad to the rescue and what we thought would be a long process ended very quickly and x rays done and her thumb in a splint she has to wear for two weeks and she was home before school closed for the afternoon.  Again thank you NHS.

Walking

Yes I do an awful lot of this for sure with an overall average  score of around  17500 steps a day or seven miles.  Whilst most of this is on my own I do have the company one day a week of a friend and if I am fortunate Colin joins me one day.  It was so nice yesterday to be able to meet up with two friends made when I began a walking group for the less able bodied many years ago,  They took me on a route long forgotten by me but it was one I had trodden many times in the past as I had a paper round along these ginnels and snickets. What memories it brought back and I aim to do it any times now since going yesterday,  Thank you Ann and Martin for awakening these memories and the hot chocolate at the end the walk was very welcome even though I am not a lover of chocolate!  

Must get this out as hubby is going off in the motor home again for a few days and he is the one that gets these out for me.

Please leave a comment and I will respond .  Go well and continue to keep safe.  

Warm love to all.

Carole xxxx