Tuesday, 29 November 2016
I went back in hospital on Thursday so that my Transplant Team could run some tests to see the how my lungs are doing and if they are recovering from the acute rejection and other problems that I've been experiencing over this last couple of months. They had identified two episodes of acute rejection, each being a different type. Yes, I'm finding out this 'R' word is a complicated thing now I have it.
I just thought beforehand, that the most common types of rejection were 'acute' and 'chronic' alongside a few less common types. Over the last few weeks, I've since discovered that there are different types within these types and that this 'rejection' thing is all a very complicated affair. I am not going to try and explain it all, as I'm just about keeping up understanding what is happening myself and my tests were all about checking to see if the 'rejection' had been successfully treated.
Prior to last week's tests, I'd had x-rays and a CT scan. These had also shown pseudomas, which have been identified as 'organising pneumonia' and some scarring on my lungs, which the cause is unknown. Unfortunately, I've been told that when a 'rejection' episode happens, and this is found in 'cell' changes within the lungs, for some lung transplant patients, this can trigger the pseudoma cells to start inflaming and causing problems too. Often pseudomas can be present, but don't cause symptoms. That was an added problem for me too.
After two rounds of treatment to try and control all this, I had my tests and the findings are very much a mixed bag. On a very positive note, the organising pneumonia has improved and looks better on my x-ray than it did; however my x-ray still isn't as clear as it was back in August. My lung function has stabilised for now, which is a huge positive; again, it isn't as high as it was back in August.
Unfortunately 'rejection' was still identified from the biopsies again, but as my lung function has held, my consultants are pleased that I've responded positively to the steroids up until now. On the whole, there are some very positive outcomes, but as the 'rejection' is still there, this needs to be addressed further, as does the scarring on my lungs. I'm going to have some further investigations to try and get to the bottom of things, so it's an ongoing thing for now.
It was decided not to give me more methylpred treatment, but to increase another one of my immunosuppressants instead and keep a higher steroid dose, so fortunately I was allowed home. I was relieved about that at least, as it gives me chance to try and recuperate and recover and see how I'm doing for myself now.
This has all felt a difficult couple of months and a lot of the time while on the heavy doses of medication and after some of the invasive procedures, I've felt unwell and not my usual self. There's also been a lot of very positive things going on at home, which have kept me motivated and given me good things to focus on, which have helped so much. I just want to thank everyone for their support to us all during this rough time - every single lovely message, card, email etc has really helped us through and still does.
To finish on a very positive note, today has been a glorious day and I managed to take Ted on a lovely walk all around the park. It felt wonderful to be back outside and well enough to be having a walk again and I'm planning to try this again now every day and build my exercise tolerance back up to those longer walks and twice daily walks that I was used to doing.
Tuesday, 22 November 2016
November is Pulmonary Hypertension Awareness Month and this week it is Pulmonary Hypertension Awareness Week in the UK. Pulmonary Hypertension (PH) is a rare, progressive and incurable disease. It is a serious condition that causes high blood pressure in the pulmonary arteries, which can severely damage the heart and lungs.
Unfortunately not many people have heard of it, so if you suffer from it, the lack of awareness can add to all the stress of the diagnosis and the battles you have to cope with on a daily basis. When you suffer from a rare disease like Pulmonary Hypertension, it can feel very isolating, as people don't understand about the disease and you are often misunderstood. Only circa 7000 people are affected by PH in the UK and it can affect anyone regardless of age or ethnic background. It is more common in women than men.
Pulmonary Hypertension is a very general term to describe this disease, but it is a very complex disease and really is much more than just 'pulmonary' and 'hypertension'. Indeed, it does very much involve 'hypertension', which is high blood pressure and with Pulmonary Hypertension it is a diagnosis of high blood pressure in the blood vessels of the lungs. When I suffered from Pulmonary Hypertension I must admit I used to become quite exasperated with this tag of 'hypertension', as people continually told me all about their high blood pressure problems and the tablets they were on for it, which is a totally different problem. Simple and straightforward high blood pressure can be extremely dangerous, but it can also be safely controlled by a few tablets and lifestyle changes and isn't usually a fatal problem unless it's undetected.
Pulmonary Hypertension, however is high blood pressure in the lungs and although it can be treated to try and stabilise a patient, it cannot be cured and it becomes progressive, damaging the blood vessels in the lungs, causing severe breathing difficulties and the heart to overwork until it begins to fail and it can become fatal. Treatments can be harsh, with difficult side effects and can include: oral heart failure tablets such as diuretics; targeted oral treatments to stabilise the high pressure in the lungs; oxygen therapy; intravenous medications and major surgeries such as operations to remove blood clots from the lungs, lung transplantation and heart and lung transplantation.
PH patients suffer with a range of symptoms such as breathlessness, extreme fatigue, dizziness, fainting, swollen ankles and legs, plus the side effects of varying levels of medications.
Take a look at the PHAUK website to find out more about the causes, the symptoms and the treatment of PH, as they are explained well and in depth on here.
Pulmonary Hypertension is no 'ordinary' high blood pressure, in fact when I suffered from it, my 'ordinary' blood pressure was perfectly normal. I looked perfectly normal and well a lot of the time too, as heart and lung failure isn't something that anyone can see. It's something that's happening inside you, only you know how fatigued and unwell you feel, people cannot see it. It makes it difficult for others to understand when they cannot see you are sick and it is a disease that is unheard of. That is why we need to continue raising awareness to help others to understand more about the complexities of this disease and the impact on a Pulmonary Hypertension sufferer's life.
My own PH journey was a difficult one, with many hospital admissions and emergencies, countless tests and monitoring; many complex medications including combinations of oral medications, inhalers and complicated intravenous medication; a two year wait for, and then undergoing a heart and double lung transplant. My transplant has given me such a better quality of life, but a transplant does entail a whole range of other medications and new medical problems to cope with. My transplant was because of PH and my transplant journey is very much a part of my PH journey.
When people say, 'You haven't PH any more - why keep going on about PH?' It's because PH has been a big part of where and who I am now. It's in my past, but has shaped my future. It's because PH is so misunderstood. It's because so many of my friends still suffer with PH. It's because we still hope for a cure for PH.
Part of the reason I wrote my book 'Life is for the Living' was to help raise awareness of Pulmonary Hypertension - to try and show others what it is like to live with a rare disease and undergo the varied steps of treatment as the disease progresses and the impact it has on a sufferer's life. Any proceeds from my book are for the charities that helped me through my journey and continue to do so, including the PHAUK, the charity that gave me advice, support and put me in touch with other Pulmonary Hypertension sufferers at a very desperate time in my life.
I will always campaign to raise awareness of Pulmonary Hypertension, because once I didn't know
anything about it. It didn't really matter to me back in those days. Why take the time to learn a little about any rare disease? Well it may just save a life - your own or someone else's or help you to understand what someone else is dealing with and going through.
I didn't know anything about PH and its symptoms once. Early diagnosis equals better prognosis. If only I had.
Friday, 11 November 2016
Coming out of hospital and home is always a big step - it's a step in trying to recover, complete the drug regime and hope it works its magic. It's a chance to take stock - be away from the hospital and amongst ordinary routines to try and work out what you can still manage, so you can gauge where you are up to. An opportunity to challenge yourself a little, but keeping a balance of what's sensible for your health too. Most of all it's time to try and grab some special times with family and friends and enjoy some better moments in the middle of all the chaos. And this last few days has been all about that for me and my family - simply finding my feet again, catching myself up, accomplishing small daily challenges and trying to enjoy all there is to enjoy.
There's been plenty to squeeze in and enjoy in between hospital visits over this last few weeks. Somehow or another all the hospital stays have managed to fall in between exciting events that are so important to us as a family. That's given me good opportunities to focus on positive things that are happening in our lives. Firstly, there was Sarah's graduation ceremony and I was so pleased to have managed that. The thought of being able to see my girls graduate was one of the things that kept me driven through all my long illness and transplant recovery.
This week we had Rose's graduation to attend and celebrate. This I knew would be a real challenge as I'd only just come out of hospital after being treated for yet another bout of rejection, that coming straight after increased treatment for the first round of rejection and organised pneumonia has left me feeling very weak, shaky and exhausted. We started drawing up a plan A, plan B and plan C on how I might manage to still be part of it, as I was determined to still celebrate and enjoy this special time for us. It was going to be trickier compared to Sarah's graduation, as it was being held in Bournemouth, would be a bigger event and would involve travelling.
In the end, we came up with a compromise to enable me to cope, but still be a part of Rose's special day. We decided that the actual ceremony would be too much to deal with. Firstly, there would be a lot of waiting around beforehand, followed by a few hours formalities, then photos and drinks receptions etc, which would be too much for me with how I am at the moment. Secondly, I'm so heavily immunosuppressed because of the rejection and there was going to be massive crowds of people, which isn't such a safe situation for me at the moment. The ceremony was an afternoon one too, so it meant I'd have to manage the whole day plus eating out afterwards somehow. To try and do it all would have been too difficult.
So we decided to cut out the middle bit for me; sometimes it's a needs must and making a few sensible adjustments means you can still enjoy everything and be part of it and not miss out on everything.
We had a good journey down and had a lazy evening with TV and pizza in the apartment we'd rented - home from home and lovely family time. In the morning, Rob and Rose went off to the university to pick up Rose's gown. Then everyone got dressed up and ready and I was able to see her all gowned up and we went down to the gardens on the seafront to take some family pictures. Everyone then went off to the ceremony and this gave me a few hours to rest up and take my time to get ready to go out for the meal we'd planned for evening. All afternoon long, the family sent me photos and videos as each part of the event took place, so I could see everything going on and not miss out on the fun.
In the evening we went out for a few hours for a lovely meal together and I had a wonderful time celebrating with everyone and it felt fantastic to be well enough to go and be out and about a little at last. It all felt a little surreal and very special to be sat eating in a lovely restaurant with my family, when only a few days earlier I'd been ticking off my breakfast, lunch and dinner charts back in hospital!
The following morning we travelled back home a day earlier than planned, so I could have more chance to rest up before another lovely event with friends - Bernice's wedding to Scott. Bernice had a lung transplant three years ago and we became friends while we waited for our transplant calls. We had shared our journeys together and with other friends who were going through similar at the time. We've all remained good friends and Bernice's wedding was always going to be such a special event after all she has overcome and it's all thanks to our donors that we can celebrate such a wonderful milestone in Bernice's life together.
All in all it's been a very special and uplifting week. Happy times!
Saturday, 5 November 2016
The 'R' word reared a few weeks ago now, when I was diagnosed as being in 'acute rejection' and just to complicate matters another diagnosis, that I had pseudomas colonising in both my lungs. It's believed that this has probably led from all the complications that followed the bout of CMV virus I had last Xmas.
Last Xmas seems a long time ago now, well it's nearly a year this month that the CMV reared itself. The problem with a transplant patient is that with an infection or virus then a careful balance needs to be struck with the immunosupressant medication. If you are too over immunosuppressed then it's difficult to control the infection; if you become under immunosuppressed then there is the strong possibility that your body may reject the transplanted organs.
When I had the CMV it was very severe, so my immunosuppression needed lowering to help combat it. After my CMV levels were back under control, it has since been a very delicate balance of controlling it so it would not reactivate and keeping the immunosuppression at the right level too in order to prevent rejection. I'd been having regular clinics and blood tests every month since, to keep a close eye on things, so I was lucky I happened to be at clinic and the rejection was found promptly. I shouldn't have been that shocked really that a rejection had happened, as that's one of the reasons they'd been monitoring me so closely. I thought I'd got away with it being nearly a year on from the infection.
The rejection was treated with high doses of IV methylpred steroids for three days and then with further oral steroids at reducing doses until I reached a suitable maintainance dose. To give you an idea of the increase I used to be on 5mg a day and the methylpred dose was 600mg. I also had to have another immunosuppression tablet doubled in dose. Pseudomas are a common thing in both pre and post lung transplant patients and can be without symptoms but when an infection or rejection episode occurs they can begin to colonise, start to inflame and even become infectious as they react, which is what had happened in my case and it was named as organising pneumonia. So I needed to be treated with a strong course of antibiotics too. And with all this happening, there was a fear of the CMV virus occurring again, so I had to be put back on the treatment for CMV too. All in all, a bit of a drug overload which in turn give their side effects on top of whatever else is happening, so some extra treatments for those too. Then it was a case of waiting a couple of weeks to see if the medication helped and whether the problems had been sorted, so add in a little anxiety on top and a lot of hope that this could all be turned around.
I arrived back at clinic and had all the routine tests done and my X-rays looked like the organised pneumonia was improving, which was a big positive. However, there was no improvement in my lung function, which the consultants had expected looking at the x-ray. There was even a slight decline, so they acted swiftly again and squeezed in an emergency CT scan before going ahead with another bronchoscopy and biopsy. I was admitted back in hospital again and unfortunately the biopsy came back with the disappointing result that another type of 'rejection' was now occuring. This time a rarer thing with an acute rejection, which the consultant described to me as cells localising in a stream of rejection in the airways of my lungs. So it was back to square one again - back with the routine steroids treatment again, although I've just had it and been through all that. It was another three days of the high dose methylpredisolone in hospital to zap this second rejection and home again now on high oral doses to keep up the treatment. They will reduce down a little over the next few days, but they are going to be maintained at a higher level to help my lungs recover if possible or hopefully at least help them remain where they are at.
It's a matter of waiting to see if this does the trick. There will be more biopsy results to come yet on the organised pneumonia front and discussion on the CT results amongst the team and I'm back at clinic in less than two weeks for another MOT, biopsy and bronchoscopy to see where we are at. I'm truly hoping and positive we can either turn this around at this point or hold things where they are at least. I'm also trying to be ready and prepared for whatever else may happen.
In the meantime we have lots of very positive things happening too and this keeps me motivated to grab life and every moment it offers. It is Rose's graduation ceremony on Thursday. We are working on a plan A, plan B and plan C on enabling me to either attend or at least be part of it all somehow. It will depend on how well I am, but we will find a way or a compromise that will work and it's something to really look forward to.
Rob also attended the Papworth Annual Patients' Event while I was in hospital and did a talk about what it's like to be a carer. Carers are often overlooked and they play such a vital role in all that we go through. I think it was a moving speech from what I've heard and I'm proud of him. He also did what was supposed to be my speech about our Transplant Patients' Representative Group that I chair and about the Transplant Support Group that our group have set up and got underway this year at Papworth. I was also supposed to be signing and selling my books there in aid of the support group and he successfully managed to sell quite a good few books for us too. It helped after the Director of Transplant Services and my transplant surgeon gave my book a big plug in his video. He's a person I'm forever grateful to for saving my life, but he continually supports us patients through our journeys, together with his marvellous team.
After all that, Rob was back by my bedside just in time for my biopsy results. All in all, he's been a star and a rock not only supporting me, but ensuring all the comittments I'd taken on were organised and worked smoothly without me. I can't thank him enough, but I know the causes are as dear to him as they are to me.
We've more activities planned with the John Henry Newman School in Stevenage and hope that these can still go ahead, as we hope to raise funds for the Papworth Hospital Charity, who are being very supportive and helping us with this. I'm looking forward to the Christmas concert there in December, where we will also be signing and selling books and giving talks with Papworth Hospital Charity about their work and raising awareness about Pulmonary Hypertension and organ donation through my book. The Papworth Hospital Charity are also supporting 'Life is for the Living' on their new and updated website, which is great news for us to help raise awareness and funds.
There is also our Christmas Transplant Support Group meeting on the 26th November, which is all organised with books on sale there again. If you are a Papworth patient, please let me know if you'd like to come. The Papworth Ely Cathedral carol service is on December 17th, where the charity will have a stall with 'Life is for the Living' on sale too. The Papworth PH group have their Christmas party on Saturday, 12th November. I can't make this one as it clashes with returning from Rose's graduation, but they will have my book on sale there too, helping to raise much needed funds for their very special group.
If you're going to any of these lovely events and fancy buying a copy of the book or picking up a copy or two for a Christmas pressie then there's your chance and you will be helping us to raise more awareness and funds for fantastic causes. Thanks to everyone who has already purchased it, we are hoping to pass selling a thousand copies by Christmas!
It's also November and a busy month for promoting awareness of PH - watch out for another blog post soon about all this coming up next... there's a lot happening!
We also have our lovely friends, Bernice and Scott's wedding evening reception next weekend. Now this is a truly special wedding, as like myself, Bernice received her gift of new life and transplant three years ago. We shared our journeys together and she's gone on to have the most wonderful new life and is living her dreams. Her journey has been an amazing one to watch and it's all thanks to our donors and their families that we can celebrate these special moments. I'm so looking forward to it and meeting up with everyone.
And then there is Sarah's Baby Shower party and Christmas... so there isn't really much time for dwelling on 'what ifs', just so much to enjoy and be busy with and for living in the moment. The rest will unfold and slot in with whatever we are doing. We will just have to squeeze it in and whatever happens will fit in with us somehow.
Thanks for reading if you made it this far and haven't fallen asleep, I know it was a long one with so much happening!
Wednesday, 2 November 2016
It's been a really good day today as I felt well enough to visit the John Henry Newman School in Stevenage, where Rob and I gave a talk to the sixth form on organ donation, transplant, my book 'Life is for the Living' and the important work of Papworth Hospital and Papworth Hospital Charity.
The school has chosen to support us in raising awareness of Pulmonary Hypertension and organ donation and help us raise funds for Papworth Hospital Charity during this autum. They are holding several events over the next few months, including a non-school uniform day, a book signing evening and a Christmas concert, which is fantastic.
It's quite poignant that our first event today was at the beginning of November as November is the month when the campaign for raising awareness of Pulmonary Hypertension is launched - the rare and incurable disease I had that led me to having a heart and double lung transplant. Pulmonary Hypertension is high blood pressure in the blood vessels in the lungs, eventually causing damage to both the lungs and the heart. There can be different causes such as congenital heart disease, autoimmune disorders and, as in my particular case, it can suddenly just start for no apparent reason and is then known as Pulmonary Arterial Hypertension.
Having been under the weather and still waiting on more tests, today had been another day that I'd been looking forward to and hoping I could still manage - one of those motivators to try and do something positive in between a time of what feels some uncertainty yet. It was a wonderful opportunity to speak to an audience of circa two hundred people about these important issues that are so close to our hearts. There was lots of interest, lots of leaflets given out and lots of discussion amongst the sixth form on organ donation. Our main message on organ donation was the importance of having that discussion with your family, so everyone knows what your wishes are.
All in all a very positive day for us and the start of more activities and exciting things to look forward to in these next months leading up to Christmas.