I JUST WANT FERRITIN

I have been told for over five months now that my ferritin was low but the specialist was puzzled as I was not anaemic.  I explained to him that it was common for those of us with ph and that I would be fine after I had a ferrijnect infusion.  He was still puzzled and for sure it is hard for him to understand.  Iron deficiency without anaemia is a clinical challenge according to "Dr Google". Instead he has said I need to see a gastroenterologist, even though my ph team agree I do not.  So here I am still waiting to see said person and now my blood tests show I am also anaemic as the time has gone on without said infusion.  

We know full well how low ferritin makes us feel. More heart palpitations, more weariness, dizziness, leg pain, irritability and shortness of breath - like we are not short of breath enough to begin with! headaches. feeling sick, oh the list goes on.  So here I am longing for my infusion just so I can get my "get up and go back " which has got up and gone !!   I was told three weeks ago that I have been moved to the urgent list so hopefully this dilemma can soon be sorted and I can get back my zest for living.

Death of Joanne Witcomb

So sad to read of yet another ph death.  Joanne was a very private person so we do not know much about her life  but we do know she had a loving husband called Robert, she was 44 years of age and she also had two sons.

Joanne waited for her transplant with hope in her heart.  Sadly,  though the transplant was carried out at the end of November Joanne did not wake up from it and died a few days later.  We know the complexities of transplant is not a "cure me" fix but a life changing operation, sometimes for the better and sometimes not.

My heart goes out to all of those grieving for Joanne and the ph team that did their very best for her and her donor and family who freely gave in the hope of letting somebody live a longer life.  Sadly it was not to be but thy all gave of their best for Joanne.  R.I.P. Joanne.  I am so sorry I do not have a picture of her but I know you will all join with me in thinking about her and the sad outcome.  

www.phocusonlifestyle.org

Here we go again.  How fortunate we are to have so much detail, so much help online for all aspects of coping with ph.  The above is a new online resource designed to help with all aspects of living with ph.  The research and care behind it to offer all of us here in the UK has been immense.  Once again I take my hat off to all those dealing with this new focus group.  Enjoy.

Interesting and pleasing to see that if you now ask Alexa what pulmonary arterial hypertension means she will tell you.  She tells of how it is the high blood pressure in our lungs.  Technology, yeah, another way to raise awareness for us.  

It was the LIE that was offensive

A couple of weeks ago my hubby had an appointment for a follow up at our local hospital.  As usual we arrived way too early, not for us the cavalier attitude of "they will wait for us" we sometimes see.  Always aware of how fortunate we are to receive such care we have always had the policy better to be early.  After checking in he was sent next door as is the norm for an x ray.  30 minutes later it was his turn to get changed into the gown for said x ray to take place.  I went back to the cliic to await his return and join him when he saw the specialist. After another half an hour and no sign of him returning for his appointment the receptionist and I were slightly worried. Others going for x rays later had returned and his appointment time came and went.  The receptionist from the orthopaedic clinic rang x ray to find out where he was only to be met with a derisory comment that he had only turned up two minutes ago!!!!    We were both aghast as she herself had clocked him in and I had sat with him in x ray and waited with him until he went into the cubicle.   So we both acknowledged that there was a lie going on here.

Hot foot me next door to x ray just in time to see him come out from his cubicle and scurry next door for his appointment.  He said there had been a problem with the patient before him for that particular x ray side which happens.  We had no issue with this but I went to see the receptionist to ask her why she had lied.  Why had she implied that he had only been in the department for two minutes which meant he had in fact turned up very late. Well to say she was an arrogant pompous soul would be correct.  Cold and distant she scurried off to see the x ray technicians.  I followed her down to reassure them that my beef was not with them at all but her.  It was the lie that offended me.  Anyway fast forward to the following day when I returned to take the matter further.  

It turned out that the receptionist was an agency one who had total lack of empathy with patients and it had already been decided that she would not be invited to return to the hospital for that reason.  It is not like me to kick up a fuss in hospital, indeed I kept if very low key, no raised voices and an interview room was made available so the I could voice my concerns away from the other patients.  I explained that we were so upset because by her lie it appeared we could not care less for the service we receive in the hospital.  that we put ourselves above all the staff and specialists that take care of us when in fact the very opposite is true.  We are proud of the care we receive and we know we are blessed.  It just takes one rotton apple to make it seem it is not working  Fortunately all times were logged, arrival, move over to x ray etc so it could be seen that the lie was there, that we had not been cavalier with our attitude. 

The head of the department said their goal was that anyone who entered their department felt welcome  This woman was NOT welcoming to anyone, not just us as previous complaints had been made.  When we attend hospital it is because there is something wrong with our health.  We do no need to be looked down on and lied about  This is the first time we have EVER encountered anything other than the best care ( except for when the A & E could have killed me four times over if we had not refused their treatment) - they do not understand ph.  I hope that she learns a lesson so that wherever she goes after this appointment she is kind to the patients.  

I thought I knew

I bought a beautiful linen tablecloth and napkins a while ago as our table is now a different shape to the previous one.  I carefully stowed these items away in our linen room thinking I would know just where they were.  I have shelves for flat sheets, shelves for pillow cases, towels, duvet covers in abundance etc.  I have drawers containing other items that I use frequently and drawers in here with old photographs, we all have so many do we not. I just KNEW how well this room would work.  Guests could just walk in and see at a glance clean towels and sheets etc and help themselves.   So why did it break down when I - the organiser - wanted this table cloth.  I searched and searched, though everything was clearly in view and neat and tidy.  In the end I gave up and went out and bought another one.  On Monday I needed a frame for a picture and this room also houses the drawers containing all of these.  In the last drawer there were my long lost items.  I must have stuffed them in on moving day and forgot about them.  So  I was not as clever as  believed at my organisational skills.  

It is THAT time of the year again

Most of you will enjoy a day with family members surrounded by love and laughter.  Memories will will bandied around, do you remember when, who, how etc.  I know I do this every year but once again I ask you to think of those that will be missing a special somebody at their table.  Not always lost to ph though we do concentrate on them here but those that died and donated organs etc.  or lost to other illnesses, For those it is a bitter sweet time as the table is incomplete.  The smile or hugs from the one missing is so sad.  So please take a little time out to share a thought for those in such a position.  

Living a life with PH Blog

Below is a copy of an article that appeared in the Winter 2018 Emphasis Magazine, some UK readers will have already read it but posting again for newbies and overseas PH friends alike.

































All change

Though we loved our sofas we had at our old place it became obvious that this furniture did NOT work in this house, wrong colour, wrong texture, wrong shape.  So we made the plunge and bought new ones  and they will be delivered on Sunday.  I cant wait as I believe it will turn our lounge into a really cosy living space.  We went out last week and bought two tables for the sides of the sofas and now I am heading out to buy throws and more cushions.  I hope we made the correct choice of colour.   - will post a pic next blog so you can tell me.  I went against one persons thoughts and for another so we will see.  It took some convincing to get Colin to agree so I just hope I got it right or it will be an expensive mistake to make.  

Up until last week nobody had used our upstairs shower room so Colin decided he needed to try it out. Good job as water came out of the shower and onto the floor. So once again our wonderful (NOT) tilers let us down. Colin can sort it fortunately as we never want them in our home again. Yesterday saw us going out to buy silicone of the correct colour and grouting to right their mess. I am thankful though that this be be rectified before we have company staying over as a flooded bathroom is not the first impression I want them to take away with them. 

Izzy

Weather being for us it would appear that Pen y Ghent, the mountain Izzy will next  climb with her granddad will be on Saturday. Clearly as an experienced leader all must be in place to make sure of safety, weather, times of darkness, correct clothing and as always a first aid kit holding enough stuff to mount Everest!.  As Colin himself said he is taking precious cargo with him this time, Izzy.  

She is very excited and keeping her eye on the weather.  Failing this Saturday we hope there will be an opportunity before she heads back to school in the new year.  If she gets this one under her belt then she has been promised Snowdon in the Spring, her goal!  So I am hoping the weather is kind and that this climb happens for them both.

So as this year comes to an end I know I owe such a great deal of thanks to my A Team, each and every one of them for their devotion to us all and their amazing care all round.  I am also thankful we have ph forums where we can go and talk to somebody who really knows what we are talking about, that GETS us.  We have an amazing organisation called PHA UK here in the UK and they have once again organised for us a conference in the Spring, a chance to meet old and new friends.  I have been blessed so much by so many and I thank you all for being my friend, whether ph or otherwise.  I hope that 2019 brigs us ever closer to the cure and that we do not lose any more to this cruel disease.  

Warm love to each and every one of you  Take care, have a great time and speak in 2019!!!!

Carole xxx

RIP SALLY -- THANK YOU

To be honest this was going to be my penultimate blog.  I felt there was little to say, it has all be said so I was going to leave at the end of the year, Not the ph community but just the blogging.  However I would lose many of my friends who read my blogs, sometimes upwards of 2500, sometimes  less.
So I have decided to continue as long as people are willing to read them. Bless you all for the comments you write, it does keep me motivated to continue.  

Sad death of Sally Kinney Maddox

Sally lost her fight and sadly died just a few days ago at the beginning of December. For  those that knew her, either in real life or as a supporter for people with her disease it came as a huge shock.  Many people were writing of their devastation to lose such a strong lady who had served her time as a ph patient trying hard to bring awareness.  This was a huge blow to the PH Community as a whole, as indeed the loss of any one of our ph friends.  Sally died in Atlanta aged 49, way too young. She was one of the PHA's Periwinkle Pioneers, a select group of individuals responsible for advancing care for individuals with PH and helping to change the history of this disease.

Thank you Sally for what you did for ph.  You served our community well.  Rest in peace.

Distressing post

On our ph facebook page, only seen by members and their carers so we can talk about our disease, emotions etc away from our loved ones we saw an awful post.  This was a lady who lived outside of the UK who feels so very distressed of how the medications make her feel, the constant cost of trying to get them through insurance and her ph is getting worse.  She wrote that she has done with ph.  Her meds are in the bin.  She has told her family who are distressed about it but she just wants it to end.

We know too well how awful the meds make us feel.  We know how we are treated like we are making up how bad we feel as we look amazingly well.  I for sure have stopped saying how I really feel, my answer is a simple one of "oh you know up and down days" and leave it at that.  Family and friends are not really interested in listening, and why should they be.  We would have told them of our struggles in every day living at the beginning and have learnt to get on.  I have begged some of them to do the straw test.  Pinch your nose and breath just through a straw in your mouth, climbing stairs etc. Doubt any one of them has even tried it yet this is OUR LIFE. I ask them to try to think that this is my FOREVER though my body has learnt how to cope with it.  There is no getting better from ph as there is with some cancers or some strokes.  Just different ways of getting on with coping with it.

Of course the messages were quickly put out to her to our ph friend to please think again.  Think about your family who will miss you.  One post even told her to think about how hard the end is with ph, being slowly suffocated by you own lungs.  I begged her to keep going, to stay strong cos I still believe we cannot be long away from a cure.  This was all to no avail and I worry about how she is now.

We are fortunate here in the UK to not have worry about the cost of our drugs.  We pay our percentage of wages right from day one of our first pay packet.  This all goes into a pot and means that health care is paid for for all, no matter how much money we have.  I know people from abroad think we do not pay but really it is like paying into an insurance policy as lots of countries do. They take out a policy and  pay monthly and you are covered. We pay monthly and are covered and we have no chance of avoiding it.  It is a separate tax we pay.  So for us here in the UK we have already paid our insurance premiums and are assured of our medicines.

There is nothing we can do for the lady who has had enough.  Sometimes at the beginning I felt this way too but just battled on and now I am in a fairly stable place.  Though I know my condition can change in an instant my goal is to remain strong, with maybe a wobble now and again!  I hope thee said lady changed her mind, fished her meds out of the garbage and can find herself in a stronger place.

And relax

Well for me anyway.  We have been busy making the house our home, putting up pictures and mirrors in the correct places etc.  Now at last when the day is over, the daylight growing dimmer we can have some time to just rest.  We take ourselves off to the lounge and sit down amid our squishy cushions with a drink in hand and enjoy the views from our huge window and look out on the world beyond.  We can we watch the sunset and the colour streaked sky and marvel at nature. A pair of binoculars always rests beside our couch and is used by many that visit here.  Our views are spectacular, even on bad days there is always something to see.  So are we there yet, are we settled.  The answer is mostly, the garden is the next thing to tackle.  I  myself am busy trying to find the correct furniture for outside on our closed terrace.  I have also promised Izzy as her bedroom is really big to make her a seating area with a small table and two chairs.

Last weekend she had her first sleepover and it went well but she said she wished she had the table so they could take a jug of juice up and lots of fruit in a bowl so that it was like their own house!  I have promised to deal with this and it will make a nice addition to her room.

The sleepover was fun.  The girls were darting about here there and everywhere as they played hide and seek, clearly Izzy had the advantage as she knew all the nooks and crannies to hide.  Both girls made us cards from all the things in Izzys' craft drawers.  The little girl that stayed said how she had enjoyed herself and thanked Colin for the "porige"  - her spelling - and that she loved it!  No mention of my spaghetti or my delicious apple crumble she ate with relish!   She loved all the fruit that Colin piles on top of porridge, kiwi, grated apple, blueberries and sweet cherries etc.  Oh well.  So will we do this again, of course we will.  The house was alive but once it was over we did appreciate the peace too.  

Celebrating 20 years of marriage 

Considering we were engaged three weeks after we met and married at four months after we met I think we have done well.  We are surviving coping with this terrible disease.  Our dream of living in Spain ended with a bang when I was diagnosed so that dream sadly left us and we sold up 12 months after diagnosis when we felt we were unable to use our villa as we had intended.  We have survived yet another house build and the move into it, a very very stressful time.  Still always a positive, we lived a lovely life in Javea and made lots of lovely friends, we DID it, we lived our dream.  We have survived the loss of most of our family and some friends who really cannot comprehend how poorly I really am and just cannot be bothered or forget to invite us to gatherings.   Through all of this we are standing tall  and proud.  I do all I can to trial for new meds, take on any study etc.  Both of us are determined to be on call to help in any way our ph community.  So this anniversary I did not think I would see came and went yesterday.  I hope we have many more still in the pot to come.  Colin is my strength, my rock, I am blessed. 

We did not make a song and dance about our anniversary, instead we took ourselves off to a lovely restaurant at lunch time when I am generally feeling my best and enjoyed a nice meal.  Later in the evening I had a small glass of bubbly and just relaxed and we talked about our earlier years of marriage. Would we do it all again knowing the problems that came along the way - in a heart beat. My life and the lives of our children changed a great deal for the better when I married Colin and he has proven to be the kingpin of this family, long may it last.  

Izzy has just been telling us how much she loves us all and who comes first on this list.. Happy to see an obvious  Mommy first, then an equally obvious granddad and joy of joys I come equal to Chris who is, I am happy to say and amazing dad to Izzy.  She said she has begun sometimes to call him dad and I am so pleased.  He certainly deserves the title as he is really lovely with her and has watched he grow over the last five years.  

This made me cry - And didn't they all look well

Click on the link below - Please keep the video on when you have seen and heard the song and children as you will then see another video about ph. Be aware, you just may have it without knowing..... yet.  We must bring awareness of this terrible disease.

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DZIy4v34uvjA%26feature%3Dshare%26fbclid%3DIwAR0eK9pefpJ9950ZRqiFIUBv2Jh_Dp-7VK-kCNkVs5VXJfhX30ZBToxfS2g&h=AT1ucX8TbD5f4j2C6AmVmgUEA0LAhVLzTL6cCcmD-ZsGzlKZ94CpPKdzQjtTUS89C0EsinJ4hVVxRTyWqupXt7q8UhXd57gDuOJDk7hqS7HI2ERCFwFdhzBDF0U

I am finishing with this post that came on my news feed.   This is just one of the reasons we were asked to get our MP's to go to a meeting in Parliament to help to bring awareness of PH.  This touches people more than showing us oldies suffering. How terribly sad a note to finish on. So IF you are not yet on an organ donor register then please pease do this NOW.  just a click is all it takes.
Remember this could touch any one of you.  Please please always be aware of this cruel disease.  If you see posts asking for help then try to be there.  If you see people struggling to live with it then lend a hand.  Remember their disease is invisible so try not to dismiss them because you cannot see a broken leg, loss of hair from chemo etc. We matter too and these children on the video never had a chance to live.  

So once again warm love to all.  Your comments or likes as ever are appreciated more than you will ever know.  

Carole xxx