CELEBRATING TRANSPLANT TWO YEARS ON - LYZ CLEMENTS

The weekend just gone saw us being able to join Lyz Clements and her husband John and son to celebrate two years post transplant.  Before having pah I never heard much about transplant and never met anyone who had had one.  Oh how times have changed and the word transplant gets bandied around as an every day occurrence. Of course the reality is it is still terribly hard to get a transplant and it is certainly no cure - just a way to hopefully extend life for as long as the organs last  Lungs are the hardest ones to cope with the transplant and so we rejoice whenever we know there has been a successful one carried out. 

Off we went and what a joy it was to see Lyz looking  very smart and a super colour.  It seems to be one of the first things that is noticed after a transplant - how the colour goes to a lovely pink and the lips lose their blue tinge as at last much needed oxygen is delivered to all parts of the body.  We both had lots to talk about and neither of us appeared to run out of steam for asking questions etc.  

John was so lovely and kept making sure Lyz had everything she needed -  drink topped and nice food to eat.  I liked him the second I met him and over the course of the celebration my opinion never changed.  He has taken on the roll of carer so well and must be such a relief to Lyz.  I also met Ryan the son and what a charmer he is.  He will break a few girls hearts in a few years so beware!!  

We also met the family of Lyz and they were so nice and so very welcoming - even though we did hog Lyz for most of the time.  Andy the brother in law talked a lot to Colin about men and their toys and I suspect it will not be long before we are visiting a store to buy a certain one recommended by him. We have enough mens things here but who am I to complain.


Lyz brought in an amazing cake made by her friend with lungs made out of icing as the main decoration.   The cake was a chocolate and orange one and truly yummy.  We bought a piece home for Izzy to try but not seen her yet for her thoughts on it as she took it home to eat.  However chocolate and orange are a great combination so I bet she quickly ate every bit of it.  

Sonia Marshall was there as she knows Lyz well and only lives 15 minutes drive away.  It was really good to catch up with her as she has not been able to attend conferences for the last few times due to oxygen.  I know oxygen is suppled once at the hotel but having to carry so many canisters to do the 7 to 8 hour journey is a nightmare.  Plus of course same needed for journey back. Lyz says the same thing so for them both conferences are a no go though Sonia loved them before going onto oxygen.  Such a shame.  Anthony the son of Sonia was also in attendance and gave me the biggest hug I have had for a long time.  He is all boy for sure and a whirlwind but very good manners.  I asked him if he looked after his mommy and he told me he just wanted to be hugging her all the time and crept into her bed in the night!  He was very impatient for the cake to be cut for sure! 

All too soon we had to return hone as we had the journey back in front of us.  We both agreed that we had a great time and it was so worth the effort  We do hope to catch up again in the not too distant future.  

Catherine Makin

Such a lovely girl as those of you who know her must agree.  Three weeks ago the call came for her to have her transplant.  This went ahead and we are all waiting  to see how things go for her.  She does squeeze the hands of the family when they talk to her and they were hoping to wake her up.  Sadly no recent news and I do not want to nag the family but of course we have all sent the best wishes for her a speedy recovery.  She is one the the nicest people I have met through ph and her family are so close and tight they will all be encouraging her all the way.  So are we Catherine so come on girl - you can do this.  

Meds and away days

As I will begin my selexipag in March we do wonder just what to do with regard to putting life on hold then we decided no - we will carry on as normal.  Of course this may well prove to be impossible but until I get on it and try to cope with the side effects { of which I know so well having previously had the infused form of it } we just need to keep booking nice things to do.   So we have got a few things sorted of which we hope we do not have to cancel.  

One of them is an away weekend with all the family in a superb country house in the Lakes.  It was a struggle to get enough rooms at the same time but ater talking to the manager at this one he was very nice and sorted it out for us.  Once again a long walk up a huge hill is in order { I do believe Scafell Pike} for those up to doing it which will be all but me.  There is lots to do in the area so I will be most suited and if I am not feeling the best I shall go down to one of the lounges  and sit in front of the fire with a newspaper. We are all excited to do this as it could well be the last time we get a chance as part of our family will be emigrating at the end of the summer.  They will be so missed by us all but of course this is what what they want and we will wish them well on their journey to their new lives halfway around the world from us.  

The house gets superb ratings and is 4 star but we have decided to try it out too before we all go so are going to book a couple of nights away before then.  On arrival we are given a cream tea so we will check out all is in order!  We are waiting to see about dates as our friends are hoping to join us too, this time none of us are taking children!! We always go away with them once a year and  take some of our grandchildren. This treat is for us - no kids allowed!  We will however be taking them sway shortly after so they will not be missing out. 

On talking about short breaks with more friends it transpired they too want to visit Krakow  ( there are different ways to spell it but we chose this one as the correct Polish one.  It is pronounced Krakoof which surprised us. It is 75 years since the liberation of those in these dreadful camps through world war two we want to pay homage to all who lost their lives in such a dreadful way. We have visited one camp before and I know I shed so many tears and I know I will again. So that is three things on the agenda plus the one away with the troops in our motor home. I just hope that the side effects are tolerable.  

Friends of ours are due to come and stay for a few days, one of who is already taking the drug so it will be interesting  to talk to her and see how she goes on.  Some of you will know her - Paula Joanne Smitham and her hubby Neil. We are already making plans here as to where to take them if all is well with both of us suffering with pah.  I know she wants to go to visit Shibden Hall, one time home of Gentleman Jack so of course that is firmly on the cards.  As for the rest we will see how we go.  

Funny

Colin was having a few days away in the motor home and decided his hair needed just a smidgen taking off before he left.  Calmly he got out his razor and read the setting and proceeded to take a huge swathe out of his hair.  I was looking on and saw what was happening just a second before he did as he was shielded by his hand.  He had taken it right down to the wire!  He was bald!  He looked at me with horror in his eyes and panic too. Of course there was nothing for it but to take it right down all over.  He had read 1 as a 5, he does need new glasses and this has forced his hand so they are due on Monday next week. He has been wearing a cap all week but he is fortunate that the weather is on his side.  I did of course shoot next door to tell the family and when Colin arrived a few minutes later they were busting for him to take his hat off.   He is fortunate that it does actually suit him and has decided that when it grows back he will keep it not so short but at number 3.  I have been taking the micky a few times though telling him he did not need shampoo etc.  He was not amused.  

So another blog and I thank you for reading it.  Comments are always welcome. I do wish you all the best of health and also hope the weather is being quite kind to you.  We had snow here today but it was just a sprinkle though we do see lots on the hills around us,  

Warm love to you all

Carole xxx