January

January and arriving with it another brand new year and leaving a previous one behind. January 2017 rings familar with January 2016 for me. I started 2016 waking up and in my own bed and feeling much better after arriving home late on New Year's Eve following nearly a month in hospital and a few months of being unwell. Bring on January 2017 and although I'd not physically been in hospital for a month, I'd been in and out of hospital and made many trips there due to being seriously unwell yet again for those months ending the year. So both times starting a brand new year with fresh new hope and resolve to recover and regain my health once again. And starting the year with an even bigger appreciation and anticipation for life and what this new year may hold.

I'd begun to feel a lot better and brighter during those immediate few days before Christmas. I didn't dare to hope that it might last and I might feel well again. But it did and I'm much better now following those two awful bouts of acute rejection and all that comes with it. The heavy treatment, the harsh side effects and the mental and emotional anguish that comes with knowing that my body doesn't want accept my new lungs. The not knowing which way things may go. Will the treatment work? Will things deteriorate even more? In this world of transplant things can spiral out of control so quickly. It's not an exaggeration - it's happened to friends - we've lost friends unexpectedly and we have friends still, who are battling hard at this moment to overcome the fate that rejection can bring. Organ rejection is challenging in every way and is physically, mentally and emotionally gruelling. 

So January 2017 brought respite and relief for me just in that I knew I'd turned a corner in this battle - that I felt better and stronger was a good sign and this week after a visit to clinic, the signs are still looking positive. The routine tests showed that I'm now stable, that I've overcome this setback for now,  that I've beaten these rejection episodes. I'm still not totally through it. My lung function has declined by 25% now, but there's still a chance and hope it may improve now I'm stronger and able to exercise properly again. My medication has been altered yet again to help matters, increases in some, decreases in others to try and maintain the delicate balances needed to prevent infection and rejection flaring. I've been given a steroid inhaler too, to continue treating and preventing the airway rejection. There's still more clinics in the next weeks and months to check progress. I don't mind any of this, as I count myself lucky to have got this far - to have been able to hang on to some reasonable lung function and to feel well again. It's been the best Christmas present and best start to the new year I could have asked for. 

My new year resolutions aren't big ones. Just going through all this has enabled me to re-evaluate things yet again. My priorities are to keep on working hard on my health, recovery and becoming stronger again. If I can keep my health, then I can work on my other resolutions. Rob had just retired when I fell ill, suddenly he became my carer again. Now in a new year we are starting off again with our retirement plans. More time together, more memories to make. We're expecting a new grandchild, so helping Sarah and Oli and spending even more time with family will be a big priority.

Then I hope to continue working with our Transplant Group at the hospital with our support group and the other initiatives we've been involved with. We set up the support group to help patients going through transplant and its ups and downs. It's strange as the tables were turned in those few months before Christmas and members of the support group gave me so much support, which helped me through the difficult parts. It was much appreciated and made me realise even more how vital it is to have a support network of people who understand properly and can share their own experiences to help each other. 

I've also recently become an ambassador for Papworth Hospital Charity and plan to continue to promote my book 'Life is for the Living' to help raise awareness of PH and transplant and funds to help and support these causes. My last big priority and challenge for this year, is to complete my next book. I've been working on it for a while, but have been stopped in my tracks over the last few months. So I've restarted the work on it now, purposefully aiming to complete my first draft.

They are all goals that are closely related to my priorities, things that have been ongoing already, but with being poorly again made me realise they are things that will always be close to my heart. The things I find important that give me a good balance in life. Time for family and friends. Time for important causes that have affected my life and time for myself through my writing. 

Wishing everyone a very happy and healthy New Year. I hope you have lots to look forward to, new plans and memories to make and that you're still sticking to those New Year resolutions whatever they are. For those struggling with their health, I hope the new year brings hope, strength and the opportunity to feel better. 

Hope and Breakthrough News for PH!

I'm still involved with a genetics study to enable a better understanding of PAH and enable better treatments. Although I don't have PAH any longer following my heart and double lung transplant it is still possible for the research team to use my DNA samples, so I'm still giving blood samples from time to time. The genetic thing first became all important to me because I literally had no idea why I had PAH and was scared that my two girls may have it.

My PH team kindly referred me to Addenbrookes and although there was no formal testing for PH genetics at the time, I was lucky because they were about to establish one and establish the research into understanding the genetics of PH in the hope of getting some breakthrough for new treatments.

Filming with BBC Look East

When you're diagnosed with PH it is a very frightening time, no matter what stage your PH is in. For me,  I was in end stages, so I was put on intravenous medication within a few months then referred for a heart and lung transplant. I was told I wouldn't have long to live and perhaps only have two years of quality life left and then in the same breath told it may take up to two years or more to get my transplant. It was a stressful and scary time. With the shortage of organ donors, it is a very difficult to get three organs. Organs can be split to save two or three lives instead of saving one and only a couple of transplant centres still commit to undertaking them - I was lucky - lucky in so many ways.

Sometimes during my life I've complained I've not been in the right place at the right time: the sun shone on me through my illness though - I was being treated in a centre that believes if you need three organs then that's what they will strive to get for you and I was under a transplant team who had a lot of expertise for this rare operation. I was also lucky I was under the excellent care of a superb specialist PH team and they knew exactly what to do every time I met a crisis and saved my life more than once. I was more than blessed on that day I received my transplant, that day a family said 'yes' to organ donation and that my donor had believed in organ donation. It is all a very hard route to go down though, however blessed you are - and I know for some this route is even harder. For many even transplant isn't an option for various reasons.

When you are first diagnosed with PH, it doesn't really matter what stage of PH you are in: mild, moderate, severe ... it is all very frightening. You know it is a chronic and incurable disease and it doesn't matter how well you are doing or how positively you manage things, the fear is always there about the future. You know the disease may progress, then you will need more treatments ranging from oral medication, oxygen to intravenous medication and then for some more complicated and life threatening surgeries such as Pulmonary Endarterectomy, lung transplant or heart and lung transplant. You fear a future of disability and you are afraid of dying and your family are terrified what will happen to you and them next.

Even undergoing the life threatening surgeries to remove PH, a cure as such isn't truly found. Often with a Pulmonary Endarterectomy, there are still remnants of PH and distal blood clots, which require life long management and drugs and with a lung or heart and lung transplant the survival rates are only 50% at two years. I was also informed I would have a 20% chance of not surviving the operation or the first year after my heart and double lung transplant. It is a hard route to be faced with and all any family, who has been affected by this disease, wants is to know there may be a cure - know that somebody somewhere is doing something to help them, something that may save their future.

Last week I was contacted by the British Heart Foundation, who have provided funding for research in the genetics of PAH and was informed there had been a breakthrough in the research. The research is being undertaken by a team led by Professor Nick Morrell at Cambridge, who is both a Research Director for the PH service at Papworth Hospital and a British Heart Foundation Professor of Pulmonary Medicine. 

A protein, BMP9 has been discovered that can counteract the damage that is done by PAH to the cells in the blood vessels of the lungs: it can prevent narrowing of the blood vessels and also restore damage. The research has found that patients with PAH don't make enough of this protein. Tests carried out have shown that it is easy to manufacture and therefore could possibly restore the blood vessels in patients lungs to a healthy condition. 

More testing, research and patient trials have yet to be done and it will take some time yet, but this is a major breakthrough for the treatment of PAH, both inherited and idiopathic and hopefully if things come to fruition, then for patients with secondary PH too. This news brings so much hope for patients who are suffering with PH and facing difficult choices about treatment in the future and so much hope that anyone being diagnosed in the future will have chance to be cured and not face the long and gruelling route that patients must endure now. 

I was asked if I would help with the media launch of this breakthrough, as I've been involved with the genetic research and suffered with end stage IPAH and the difficult treatments. On Tuesday, I was interviewed live on BBC Three Counties Radio talking about what it is like to live with PAH and how this research breakthrough is such a significant step for patients suffering with it. On Wednesday, reporters from BBC Look East visited our home and interviewed me for an article for the 6.30pm and 10.30pm news later that day. I was delighted to help, not only to share the promising news that gives families so much hope, but to raise awareness too of what this cruel disease is like to live with and the difficulties of the treatments we have to face. Also, PH is regularly misdiagnosed, so to be able to explain its symptoms on TV and radio, could possibly alert someone to the condition - the earlier a diagnosis, the better the prognosis.

News Reports

British Heart Foundation Press Release

Cambridge University Research


BBC Three Counties Radio 16th June 2015  (just past half way through)


BBC Look East Report 17/5/15

Article in the Guardian news 21st June 2015

The hope of a cure is something anyone diagnosed with or affected by this disease hopes for everyday and now things look like they may be getting nearer ... I truly hope so - it would be such a wonderful thing.

Pulmonary Hypertension Survey

Last week I was contacted by PIP Health - a patient healthcare company -  and asked if I would take part in an interview that was being undertaken by Atlantis Healthcare to help understand more about PAH patients' unmet needs and challenges. It is hoped a series of interviews with PAH patients will help to develop methods that may improve and support patient care.

Interviews were being undertaken over a couple of days and I had my interview which lasted for around forty five minutes or so and was able to highlight a few concerns that I had had when I was a PAH patient. I discussed how one of the hardest parts was the lack of understanding within the medical profession and how this impacted on visits locally to the GP surgery, A&E and admissions to local hospitals. 

PH is very complex with varied specialist treatments according to the classification and types of PH. I found no one outside my specialist centre who had even heard of IPAH or my specialist intravenous drug Flolan. I always felt the doctors at my GP surgery should have had better understanding of my drug should I ever have been in an emergency situation, which often threatened. I felt just some basic things should be marked on my file: 1) that the IV drug needed to run twenty four seven at all times 2) that it should never be disconnected and used to administer other drugs 3) what the drug was for and what it did. The GPs involved in my care were only really concerned with my general drugs. Obviously I did inform a doctor at my surgery, but it is a surgery with several doctors including locums and you are not allocated any specific doctor.

It was even harder on admission to another hospital other than my PH centre, which happened on several occasions and my husband had to come in and make the drug up instead of the professionals. I had to be very possessive about my line, pump and drug, as I couldn't really trust anyone would have a clue what they were doing with it. Most would remark they hadn't seen anything like it before or heard of Flolan. I also had doctors trying to take me off various oral medications -  because they didn't understand the condition properly -  I knew that would put me in an even more life threatening state. Every single time I had to visit a GP or hospital I had to stand firm in my own knowledge of my condition and medication. It leaves you feeling completely vulnerable and unsupported however hard you try. You live in dread of an emergency happening - and if one happens -  I always found it was on a weekend, evening or Bank holiday, which exacerbates that vulnerable position as locum doctors are normally on duty and A&Es are pushed to the limits. 

We also discussed the need for wellbeing, emotional and financial support locally, but it seems to be a bit hit and miss varying on where you live or which GP surgery you attend. Our centres are usually excellent and can provide us with some of this, but I recall coming out of hospital with a Hickman Line and on my intravenous drug and again feeling very vulnerable, unwell and trying to find my feet on my own.

I had my eyes opened following my transplant, a letter from my physio to the local hospital triggered things into action locally. A heart failure nurse came to the house to assess the help I needed, although it was very nice to be offered help, support and advice and it was welcomed, it also made me really cross. Where was this help when I really needed it? It's no good when I have a brand new heart that beats strongly - what about when I actually had to live with heart failure? Advice on physio, diet to get my strength back and aids around the house would have been most welcome. When I first arrived back home after a long hospital stay with deteriorating PH and poor prognosis, there was no offer of any help or home visits from anyone and we were left floundering on our own locally. We just muddled through and used disabled websites to buy equipment such as bathing aids and wheelchairs.

Those were the biggest 'gaps' that I found in my care, mainly this lack of  'joined up' thing with my PH centre and GP. I did stress, however, that my centre had always offered very strong support and the PH nurses used to phone me regularly and I could phone them whatever time of day. I had a twenty four hour emergency card with numbers for the hospital, however on some occasions staff in A & E had refused to use it. I was always grateful for the support given by my centre, but they weren't the ones near home should I have an emergency. 

The psychologists from Atlantis Healthcare put forward several ideas and suggestions to help improve support for patients, which I felt were appropriate and very good ideas. One was to create an online 'symptom tracker', where patients can record their daily symptoms including drug side effects. This tracker would also be available at the patients PH centre, so medics there can track how patients are doing. I thought this was a great idea as it is our symptoms that can often indicate when things are going wrong or deteriorating. I thought this could be even better if it could be extended to our GP surgery too: it would help put that joint care into place. 

Drug side effects, which I suffered quite badly from, would perhaps be taken more seriously too. We know we have to be on the drugs as we probably wouldn't survive, but sometimes side effects can be as debilitating as the PH. 

We also discussed having a facility for recording all the medications patients are prescribed on some online system too. This could be updated and monitored by patients and their centres. This would give historical and current information at a glance and perhaps have necessary warnings about interactions and safety measures included - eg. IV meds aren't to be disconnected. I thought this was another good idea. 

All in all I felt it was a very good discussion and I felt the concerns about the support PH patients need is being taken very seriously. Hopefully there may be some developments from this in the near future. 

You find more information about  PIP Health on: 

http://www.piphealth.com

This week's photos were taken at Wrest Park, Bedfordshire, an English Heritage site. 

©KAGraham

Hospitals and Writing

It is twelve months this week since we lost our very dear friend Ann, who bravely fought a hard battle against very severe PH and sadly did not survive after her first few months post heart and lung transplant. We often talk about Ann and remember her with much fondness. She was such an inspirational character to us and still is. We are thinking of Anne's family and friends this week and know how difficult it will be for them. She will always be in our hearts and never forgotten. 

I was supposed to have my tests at transplant clinic this week, but they have been postponed for a few weeks. It worries me about whether my blood levels will be all right after all the stopping and starting of my medication over this last month, so I was almost looking forward to having my blood tests so I can be told all is nice and settled again. I feel fine at the moment though and back to normal again so I must learn not to worry I suppose and I know I am back at clinic in a few weeks time. 

We still weren't hospital free though. This week it was Mr Graham's turn as he had to have some routine checks, which he has every five years. We were back at the QE2 in Welwyn Garden City for the third time in a week and I'm pleased to say that all the tests were all fine. I think he rather enjoyed being the patient for once and getting all the fuss. It must be so wearing keep going to hospital all the time with me. He has to do all the sitting about usually, at least I'm up and down doing things or having things done, but he just has to sit about and wait and I think it must get so boring for him now after all this time. Next week we are hoping will be hospital and doctor free, we haven't had one of these weeks since May, so I'm keeping fingers crossed. 

I had some good news the other day too. I sent an article I had written to 'Cumbria' magazine and they emailed me back more or less straight away to say they would be able to publish it for me. It is going to be in their November issue - yes I'm finding out that all the magazines have to work a few months ahead of themselves.  My article is all about Cumbria being an inspiration to me to get myself better after my transplant, so I'm delighted they are going to publish it. It will be yet another audience to reach. I always think the more people we can reach with our real life stories about transplant, the better and hopefully there may be some positive impact. 

I treated myself to a new mac book recently so I've now made a good start on the book I'm writing about my transplant. Having the laptop means I can write wherever takes my fancy and get my thoughts down when they pop in my head! I always forget my ideas if I wait until later. It's going to take time, but now I've actually made those initial steps to get going with it I know I will need to finish it! That's my big project and it feels like quite a challenge. My writing course is also keeping me busy and getting me thinking of other writing ideas too. 

So after having to give up work and worrying what I might do with myself once I'd had my transplant and got better, I'm finding more than enough to keep me busy and enjoying myself with it in to the bargain! 

Genetics may be the Heart of the Matter

It's May already and although the first of May has started off wet and cool it can often be a glorious month, so I am really looking forward to it. The forecast for the first bank holiday of the month and this weekend is looking good. I'm now seven months post transplant and still doing incredibly well.

I had a bit of a blip with my lung function levels during the Easter period, which went a bit haywire and dropped a lot more than they should, but as everything else showed up totally fine I just had to keep a careful watch on things to make sure they didn't continue declining. It was put down to my reduction in steroids, which the team had reduced on my last visit. I ended up missing the PH conference because of it, but decided it safest to err on the side of caution, as I wasn't sure if I was coming down with something or not and my immune system is already very low. I didn't want to risk the chance of infection as the conference is very busy with lots of people, but I was disappointed to miss my friends. My lung function readings are now much better again and back to where they were, so I think I did the right thing.

This month there is a feature on the genetics of Pulmonary Arterial Hypertension in the British Heart Foundation magazine, 'Heart Matters' and Professor Morrell, who is heading the research, explains all about it. I was also interviewed for this feature, having had Idiopathic Pulmonary Arterial Hypertension before my transplant and having been tested to see if I carry the known genes that can be an indicator that it may be in the family. The research work is a continuing process, but there is hope that there may be a breakthrough, which will enable the development of future drugs to help all PH sufferers. The British Heart Foundation have given generous funding to enable this research. Below are the links to the articles.

http://www.bhf.org.uk/heart-matters-online/may-june-2014/research/pah/kath-graham.aspx

http://www.bhf.org.uk/heart-matters-online/may-june-2014/research/pah.aspx

A cure or breakthrough cannot come too soon. Some of my friends are really suffering with this disease. Several are waiting for transplants and are having to face long waits because of the shortage of organ donors and then they will have to go through the process of the transplant and the ongoing care and drugs that are required afterwards. If a cure could be found or better drugs to control the condition then patients wouldn't have to face these options. 

Some of my friends are coping with other diseases, such as Lupus, which has also caused their PH. Others have PH through having bloods clots on their lungs and although they have had their PH improved through having the Pulmonary Endarterectomy operation to remove the clots, some of the clots are too distal for removal, so they still have to cope with PH. Many PH patients are not eligible to have a transplant, so the biggest hope is that a cure can be found or a breakthrough that can help the treatment of PH more efficiently. 

We all live in hope for this day and for a breakthrough to come soon. 

2013 What a Busy Year!

January

Christmas 2012 was a bit scary when I was admitted back into hospital after experiencing declining symptoms in my health. I started the New Year precariously, wondering what would be in store. Would I stay well enough for transplant? Would I get my transplant? How long would this eternal wait go on for?

Still, we started the New Year as we meant to go on, with a zest for life and trying to live in the moment. With January we got lots of snow, but it didn't stop us getting out and about to keep up our spirits!

Sherrardswood Park in the snow

Snowdrops at Astonbury

A short winter walk at Rutland Water bird reserve

February

We were given lots of opportunities to promote organ donation through national TV, local TV, local radio and the local newspapers.

We had a wonderful chance to promote organ donation in the ITV 'From the Heart' campaign' 

A bit strange having a TV crew in your lounge!

And then a chance to promote organ donation in the local papers!

March

March started off with more hospital, as it was decided that my disease was deteriorating and it was time to increase my drugs to try and keep me stable. I also had a visit to the transplant clinic for my regular check up and saw the transplant team while I was hospital.

We celebrated Sarah's 21st, another big milestone for me!

Sarah turned 21, we had a family celebration in London

Exploring Westminster in my wheels!

Mother's Day

April

Still feeling quite stable in my health, we had a lovely trip to cumbria and celebrated my birthday, yet another milestone, at Kew gardens.

A trip to Cumbria, daffodils in Milnthorpe

Water lily at Kew

May

We had some lovely springtime days out including Wrest Park in Bedfordshire and a weekend in Cambridge, when we enjoyed the first burst of  promising warm sunshine.

Tulip time at Wrest Park

Sunshine and punting on the river Cam

June

Juggling around my illness, which was a little up and down, we managed to enjoy a few days in Christchurch visiting Rose down at uni in Bournemouth and more days out. I had more visits to pre transplant clinic and Ph clinic, things were still quite stable again. 

Enjoying the view of Christchurch harbour

Wisteria at Hatfield House

We had blue tits nesting in the garden

July

We went back to Dorset, staying at Sandbanks, to bring Rose back from uni, had some more lovely days out and were back on the radio again and in the local papers. Rob and Rose presented a talk on organ donation at John Henry Newman School, Stevenage.

Sunset at Sandbanks

Cambridge Botanical Gardens

Back on Jack FM following Rob and Rose's talk at John Henry Newman School

Pupils signed up to the organ donor register!

July

It was National Transplant Week and more opportunities to promote organ donation both in the local papers and on the radio again. Rob took part in the Transplant choir celebrations in Sheffield. We had a lovely afternoon tea at Papworth with Stacie and Bernice and other pre and post transplant patients and the Transplant Team The weather was fantastic and we had a fabulous week by the beach in Whitstable. We were also deeply saddened and heartbroken at the loss of our friend Ann. 

Poppy field near Cambridge

Me with Bernice and Stacie, all waiting patiently for heart and lung transplants!

The transplant choir event in Sheffield

Sunny days at Whitstable, Kent

Thoughts of our lovely friend Ann, who will always be remembered in our hearts

 August

More glorious weather and days out and a lovely break back in Cumbria!

A visit to Windsor Castle (in a wheelchair they take you to parts of the castle where others can't go!)

Highlight of my holiday in Cumbria, meeting up with my lovely friend Bente and her husband Les!

September 

Another visit to transplant clinic, things were still going relatively well. Rose took part in the Run to the Beat half marathon, raising £3137 for the PHA UK. We had another fantastic weekend in London, with some careful planning around my illness and using my wheelchair.  

Rose and David going for it!

Congratulations!

We took Rose back to university, moving her into her new house and enjoyed a couple of days back in Dorset.

Sunset over Sandbanks

Kingston Lacy

Last of summer

21st September and I had been waiting for my new heart and lungs for exactly two years and had been working towards this two year milestone since I had been listed for transplant. (I had been advised the average wait was two years.) The day came and went and I adjusted my mindset that I would now be passing the average 'wait' and my wait would carry on into the following year and beyond even. We began to plan more good things to do to try and keep positive, emotionally and mentally well and physically well and stable, while we endured the wait.  

Just after passing my two year wait for transplant I was taken back in hospital, as I experienced declining symptoms in my health yet again. I was worried the fainting symptoms were coming back again and my heart wasn't coping. I was seen by both the transplant team and my PH team. It is frightening, I wonder how long I can keep going on like this; I worry if my drugs need to be increased once more and just how much I will tolerate or even if they will keep working. The side effects of the drugs are continually dragging me down me, especially after the increase in drugs in March. 

 At the end of September we celebrated our 23rd wedding anniversary, another milestone on the calendar for me.

 The very last day of September and my life was then changed forever with one short phone call. 'Kathryn, we have a potential match for you'.

Taking that call, which came at the most unexpected of times, Monday morning rush hour!

On my way to theatre

The hardest battle I have ever fought.

October

I went into theatre in September and woke up five days later in October. At the beginning of October I fought hard for my life, by the end of October my brand new, better life was in full swing. The power of the human body and mind is amazing and the abilities of the consultants, doctors, nurses and staff at Papworth is awe inspiring. 

But I did it, I always knew I would!

Each week I got better

and better...

and better still...

Three and a half weeks later and I was formally discharged from hospital. 

November

 November saw many post transplant clinic visits, overnight stays in hospital, bronchoscopies and further tests to monitor my progress and check for both infection and rejection of my new organs. I recovered each week and made my first visit back to Lancashire and Cumbria by the end of November.  It was harder than I expected and at times I didn't feel so well, but I managed it and enjoyed myself and was so delighted I had done so. It does no harm to test what you can manage from time to time and push the boundaries! 

And so back in Cumbria once more and out with my camera again, even better...

I started getting organised with my Christmas shopping, it gave me some focus, other than the shock of my transplant and trying to recover. I wanted to be organised just in case I ended up staying back in hospital. 

December

December was soon on us and last minute Christmas preparations were done. I had chance to catch up with many of my friends and give out presents and cards, in between hospital stays and clinics.  As a family we had the most special and wonderful Christmas I will never forget. 

Before we could blink it was Christmas!

So 2013 ends today in the best possible way for me and my family. It has been a roller coaster year that will be marked in our memories forever. It is three months now since my transplant, I have felt the benefits from day one of my transplant, but now I am feeling much better than I did pre transplant and my exercise tolerance is improving by the day. I can see endless possibilities for the New Year and my hopes and dreams coming true. 

All this, is because of one very special person, my donor, and one very special family, who agreed to give the most precious gift that can ever be given or received, the gift of a new life. Do you believe in miracles? We do in our house. My new life just gets better and better...

In memory of my donor, who is with me always on my new journey in life

Wishing everyone a very happy, healthy, prosperous New Year and may it bring all your dreams and hopes!