IS THIS TRUE OR FALSE?

Whilst walking along the side of the river last week I saw a gentleman I see most days walking along without his dog,  I feared the worst.  As he came closer I asked him where his dog was and in a tearful voice he told me that he had died two days before.  Of course I said how sorry I was as he was clearly very upset.  He was walking in the opposite direction to me but I told him I would walk with him and he could tell me all about his trusty companion and also his wife who had died 6 years earlier.  He is a lovely man aged 84 and he told me what a great marriage he had had before his wife died.  I learned that he had always had dogs and all bar one were buried in his front garden.  When I asked why one wasn’t he went on to tell me something I had never heard of before.  I feel sure it must be true but wondered if anyone on here had heard the same.

Now it transpires that this  gentleman used to be a police dog handler, being in the force for 36 years and a dog handler for 17.  His dog lived with him happily and performed tasks asked of him to a high degree.  When his police dog died he said he was obliged to do what every dog in the police force undergoes on their death - send it be made into wash leathers!   It just seems bizarre but he assured me that it was the case.  

His latest dog died from a weakened heart at the age of 12 1/2 and he told me that fortunately he was him him when the end came, a peaceful end.  He dug the grave himself and buried him beside his other dogs.  He was not going to get another one as he said it would not be fair as he could not guarantee at his age to be able to take care of him for the years expected.  I was so pleased I turned around and walked with him.  I hope he finds peace but it is sad he will now be on his own without his trusty companion.  

Pulmonary Embolism

On another walk the day after  I decided to sit down and take in the view.  I love this particular landscape, I played here all the time when I was young.  

I sat on a bench that was dedicated to the memory of 

Beth Claire Smith  I don’t know why I was so interested in this girl, we have loads of these benches dedicated to the memory of a dead loved one but I decided to do a little research.  I think it was maybe that she had died at such a young age being only 31.  It turned out that she died unexpectedly of a PE.  Now as I have pulmonary arterial hypertension I felt a connection because though yes - different medical illness - but pulmonary nevertheless - lungs connected us

I googled her and found out that she was full of fun and like me had been a member of a theatrical group. It was incredibly sad that this clearly much loved girl only lived for 31 years before dying so quickly and cruelly.  Lungs - can’t live without them.  This brings me onto the subject of Tammy Kincaid and her lung transplant. 

Transplant

Tammy is a young woman married to  Keiron  and they are parents  to a beautiful daughter called Tia who celebrated her tenth birthday only a day or two ago whilst Tammy is in hospital.  Recently Tammy was fortunate enough to receive a gift of new lungs.  Of course it goes without saying that all who posted on her website wished her well and that we all hoped for a swift recovery.  Well Tammy has done amazingly well and only two days after her op was sitting in a chair attempting to eat a tuna sandwich.  Shortly afterwards we heard that she had a lot of pain in her abdomen  and it was then found that during the transplant her bowel had been punctured.  Once they knew what had happened it was quickly repaired and Tammy went from strength to strength,  She is out of Critical Care now and posted us a pic of her room with a view.  She is hoping to go home in less than two weeks.  Her husband Keiron has been ace at keeping us informed of her progress and Jayne Venables of reposting on his messages to us,  I for one was so grateful to them both for this.  Tammy is now walking a little doing a lot of physio and her oxygen was at 97 I believe last time I saw a post.

Tammy herself thanks everyone for all the support and says she wishes to remain in the group as she received so much advice, help and support as well as being able to help others herself whilst she was waiting for her transplant.  She says she wants to continue to be able to offer it after receiving her new lungs to others waiting for their gift of a different life. I feel sure there will be many who like me will be pleased to hear this.  

We know life is not a bed of roses after transplant, ( sorry been told not to lump you all in with we but I cannot call you all by name) and that there will be hurdles to cross but I know I wish her nothing but the best and on the site there are others who have gone down this route, some having more problems than others but I never saw a post where anyone being given the gift of life regretted it.  Maybe you know somebody that does but I personally do not.  I feel sure these who fall into the category of having a transplant will be able to talk to each other and offer help and advice when necessary.  Go well Tammy have a speedy recovery and thank you for allowing me to tell this small snapshot of your journey.  What an incredible one you have been on. 

End of lockdown. 

For us we have decided that though we intend to live a little we will not be going mad.  Colin and I think we need to take things slowly.  One thing that pleases me is that funerals can allow more than 30 for those that wish it.  This news is very personal to me and I feel sure it will affect many others too.  Hugs - well apart from family those will not be on our agenda any time soon.  Though we have been advised that our Pfizer jab will give us 97% protection I do not believe that it is guaranteed with everyone and until all the no vaccine die hards change their minds we are nervous about the Indian Variant and the speed of its spread.  I still wear my mask around my ear when walking and move it to cover my face when passing somebody even at a distance of around three metres ( just in case) and in my pocket is always the hand gel that I use often.  

There is no doubt though that life will change and I refuse to stay indoors until such a time as covid is no more, I could be dead and buried by then and our lives are precious and need to be lived, albeit carefully but still we need to enjoy it and both of us agree on this.  We have even begun as I said in my last post of seriously thinking holidays though not going anywhere by air.   Nothing is set in stone but if the opportunity is given we shall take it and take as much care as we are able.  I do wonder how those headed out to Portugal will cope having to wear masks when sunbathing on the beach!  I wonder to how many will comply.  

I was not impressed with the time it took to lock down planes arriving from India when it could be seen just how bad the covid was.  In my mind there is no doubt that not acting swiftly enough has made the variant spread more quickly.  I hope that those offered the jabs now decide to take it up and get vaccinated for all our sakes.  We shall see and I was pleased to note long queues of young ones lining up to accept it in certain areas.  Long may it continue.  

An overnight stay

Izzy is staying with us tonight.  This is the first time she has been allowed since she went home after her four month stint with us. Both parents are working late and I am looking forward to a busy though tiring time.  I asked her what she wanted for dinner and her quick response was “your spaghetti” .  This is easy as I generally make two batches of sauce and freeze one.  Dessert is easy too, strawberries and raspberries, always a favourite as indeed is any kind of fruit salad.  She came round on Saturday to sort out her games cupboard and send off the ones too young for her now to her cousins. All are as new so even if Marcus has a similar one they can then go to a charity shop.  We are gradually going through cupboards and drawers and being ruthless.  We both love the feeling after it is done and more “stuff” is cleared out.  We are both over the top with things like this and hate clutter so our charity shops do ok out of us.   

Still walking

Just returned home from my walk before the heavens opened so not done as much as I would like as I have walked 6.68 miles.  I was smiling as I walked because I found myself as I often do asking Alexa to add something to the shopping list or a question about something I think of on my walk.  Of course Alexa is at home but I do this often.  Colin and Izzy look at me as if I have gone mad when sitting in the car talking to her!  I wondered is this me going loopy or do others do it as we now live in such a world where all we do is talk and give orders to her and our wishes are carried out.  She cannot understand me saying “ right” though and it drives me mad as she keeps on telling me she has done something and right and I am supposed to answer right.  She hears my “right” as eight and I say it about four times before giving in though I have begun to say OK now and she appears to approve of this.  

I feel blessed to be able to walk and I really do thank Alex at Sheffield and his team and the team from Israel that did my Denervation.  My hope is that when all the study is over and I do not think it will be long this procedure will be offered to more people with ph and help them to keep down the pressures in their lungs.

I am also grateful to all who always offer me help and support as I go through this pah journey.  The support sites are a huge help to me when things are going wrong - we have many twists and turns on this road we travel - and when the twists take me down a path I fear I will never find my way back from you all offer good advice and I am blessed to have such loyal ph friends as indeed family and friends outside of the sites too.  

So another walk over and I collected some leeks I had ordered to plant out but rain has stopped play, a job for tomorrow I think. Marigolds have been planted in my veg patch to try to keep the insects away from my cabbages and broccoli. Now I just have a small space left to plant something but not decided what yet before I begin to invade the flower beds and plant veg between the lavender and tulips!  

Well all I can say now is please enjoy your freedom but take the greatest care too.  I fear it will be a long time before lots of us feel really safe out in the big old world.  

Warm love and thank you for any comments

Carole xxx

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