Wednesday, 29 June 2016
Life post transplant can have its ups and downs. It's all part and parcel of what to expect when you have a permanent medical condition and need a serious amount of drugs to control it and those things have to be carefully managed and monitored for life.
During the last month or so I've had a few things happening that have required a little closer monitoring than usual.
Since Christmas when I had the CMV virus I've been back at hospital quite regularly both for clinic and extra blood tests. The problem being that although the intravenous medication I had during my time in hospital shifted the virus, I still needed to be medicated with oral tablets to ensure the virus was kept under control and I needed regular blood tests to check that it was.
It can become complicated when your medication is altered as being on a whole range of medication means that it can throw the whole balance out. The valganciclivir drug used to control CMV can have an impact on white cell counts and this in turn can affect the impact of the immunosuppression drugs.
In my case, I had to have one of my immunosuppression drugs reduced so I could cope, as the drug was making my white cell count too low and causing side effects, so I had frequent blood tests to keep ensuring I was on the correct doses of drugs to stay safe.
After six months of treatment for CMV to try and ensure it doesn't reactivate, I then needed to come off it. The problem with CMV treatment is that the virus can become resistant to it and that may be a dangerous thing too. So now we've reached June, I've been taken off the drug. When you come of the CMV drug, there is a chance it may reactivate itself again, so again I have to have a series of blood tests to ensure that the levels of CMV in my body is low enough and then at the end of these another MOT at clinic. Following all that and if there is no reactivation of the CMV, then the immunosuppression may need adjusting. It is therefore a complex juggling act for my doctors to keep on eye on.
It's not as easy as just getting better, every blip takes a lot of managing to get through and over properly. I'm in the middle of all this process at the moment and this week I found out that the CMV virus had reactivated itself once more, so things aren't quite going according to plan. I wasn't so surprised as I'd been having some 'off' days and suspected something wasn't quite right. Next up is more blood tests to see how the CMV levels are and then a decision what to do next.
I'm also wearing a heart monitor this week too, following a blip I had a few weeks ago when I had to be rushed into hospital. It's just to be double sure that nothing untoward is happening with my transplanted heart and fingers all crossed, hopefully it won't show up anything.
On a positive note none of this has stopped me getting out and about and enjoying life. I've been working hard at keeping well and walking every day with Ted. We've found a few new walks this week out in the countryside and I've been out and about with my camera as you can see. We also had a great afternoon on Saturday helping with the Papworth Transplant Support and Social Group and I've been thrilled that Papworth hospital has been supporting my book on social media too. The book is also available in the hospital shop - it was quite a nice feeling to actually see it on sale in there!
Monday, 20 June 2016
Rob and I took a trip into London for a few days at the weekend. I do love wandering around London, I think it stems back to the days when I used to work in the City many years ago. I don't think I've ever worked in any other place since, that holds the same buzz, excitement and promise of so much to see and explore.
We used to meet up with friends after work and go for meals, drinks, the theatre and shows and we used to say we'd try and see as much of it as we can, while we lived just a train ride away. Twenty six years later and still that same train ride away, we are still exploring and enjoying London.
When we celebrated Rob's birthday and our silver wedding, our girls surprised us with vouchers for a tour of the Globe and an afternoon tea. That was the main reason for our visit this time around. Unfortunately I was poorly for a few months in November, December and January, so we had to postpone going, then life became too busy for a while, especially with a brand new puppy, so we only just managed to get round to organising things.
It felt good to be visiting the Globe in the year of Shakespeare's birthday celebrations. I'm a big fan of Shakespeare having studied his plays for A level and my love for his work has never dwindled. I'd been to the Globe with my classes when I used to teach, but being there without thirty children in tow, this weekend's visit was much more relaxed as you can imagine. There were lots of school groups there amongst all the hustle and bustle and I will admit that I didn't envy the teachers!
The Globe is a busy working theatre and we were really lucky as a rehearshal for Macbeth was going on while we went in the theatre. We weren't allowed to speak or take any photos, but it was great to watch the company practising different scenes and watch the director at work.
We also visited the Shard and had a lovely meal at a restaurant there. We were lucky as it was a clear day and evening and the views were far reaching and stunning. As we had dinner, we watched the clouds reaching in over the outskirts of the city and a storm brewing. We had a table facing the window and watched the lightening and rain in the distance. Later after dusk, the whole city lit up before us, another iconic view.
We stayed overnight in the Shard too and had a glorious view of the city. When we first woke early in the morning the tops of the city buildings were shrouded in mist, another sight to see. It soon lifted and was another bright day.
Another lovely trip, some of it down memory lane, but making many new memories too...
Wednesday, 15 June 2016
I remember packing the car up, stuffed full of cases, bedding, duvets, pillows, pots, pans...and all the rest. Taking my daughter Rose for her first year at University. Years of studying ahead. I couldn't really think beyond the four years she would be there, just hoped I'd see the day when it came.
At the time I'd been waiting for a year on the transplant list and had been determined to travel down to Bournemouth so I could see where Rose would be living and where she would be studying. I thought I'd at least have a picture in my head and photos to remind me, should I not be fit enough to manage to visit again.
I wanted to help her move in her halls of residence while I could still be mum. In truth I managed to help empty a few cases in between resting on her bed, while she and Rob lugged all her stuff up and down in lifts. I felt a little helpless as other parents where all carrying bags and boxes piled high while I was empty handed, but at least I'd been well enough to achieve what I'd wanted. Just to see and know where she'd be, see her settled in.
We had to fit my wheelchair in the car somehow, plus a box load of boxes of bottles and phials for my IV meds. We had a lot of ups and downs with my health during that first year, but we also enjoyed many special moments in Dorset as we visited Rose. Fun times on the beach, exploring new places and making new memories.
Rose returned for her second year and moved in a house this time, rather than the halls of residence, again. I just wanted to see where she would be living, help her move in her new home once again. I felt lucky to do this. I remember forgetting the spare pump for my medication when we'd driven half way there and we had to turn back. I knew I was deteriorating. She'd only been there two weeks and on her first official Monday of term, I had my transplant call. I couldn't see her before I went to theatre, which was hard and difficult for both of us.
Then life changed, I recovered and improved, Rose spent her third year back home and undertaking a work placement, which gave us so much time together. When her final year arrived I was able to help move her in properly, do things as anyone else would. And now that year's ended, Rose has completed her degree. So much has happened in those four years, so many life changing things, so many new memories made.
This weekend we visited Dorset again, one last moment with Rose there, before she left for good. Some more lovely memories as we walked miles and miles together, made new plans, walked Ted our puppy, his first visit to Dorset.
It's been a wonderful thing to see and be part of, another wonderful milestone, another one of those firsts and a milestone for Rose too. I'd always dreamed and hoped I would see this moment and now she is back home again, university degree finished, waiting for results and starting a new future.
It is thanks to organ donation. It'is thanks to modern science and a fabulous skilled transplant team. It is thanks to my donor's family and above all to my donor.
Friday, 3 June 2016
It's been a few weeks since my last post, so here's a catch up on all that's been happening over the last week or two. Life has been a little hectic with both things we've had planned and things we didn't have planned!
A few weeks ago we had a fabulous weekend in the Lake District and visiting family in Lancashire. One of the things I've been desperate to see is the bluebells at Rannerdale. Obviously they can only be seen for a certain few weeks in the year, while the flowers are in bloom and this year our visit was perfectly timed. It's a unique setting where English bluebells flourish on an open fell that runs down to the lake, Crummock Water. We spent most of the day in the vicinity, visiting Buttermere and driving past a variety of other Lakes on the way - Windermere, Rydal Water, Grassmere, Thirlmere, Derwent Water and Bassenthwaite - and then on through the spectacular scenery of the Forest of Borrowdale and the Honister Pass. All pretty amazing and breathtaking and always, however many times I've done this, an unforgettable experience.
Check out my garden blog for more information on Rannerdale.
Honister pass taken from the car
The beautiful Buttermere
Ted and me enjoying the scenery
Another day we drove through the Western Lakes, via Coniston Water, Broughton-in-Furness and the Duddon Valley and spent time walking on the beach at Silecroft and had a picnic. It was great to be outdoors all day, walking amongst views of stunning scenery and just enjoying the fresh air. Once we were back home I'd kept saying how well I feel and how it's the best I've felt in ages.
Ted and me again having a little rest!
Idling around on the west side of Coniston Water
A few days later I popped up to my hospital, Papworth, to drop off a box of books so that they can stock and sell 'Life is for the Living' in the Papworth Hospital Charity's gift shop. I'm delighted at this and hope it helps raise some much needed funds. The charity is raising funds to help with the funding of organ care systems, which help facilitate the DCD donor heart programme. This programme has seriously helped to increase the number of much needed heart transplants being undertaken and is not yet fully funded by the NHS. Papworth is leading the way on this programme, being the hospital which introduced this programme in the UK and are continuing to undertake more successful transplants by this method. The programme is being rolled out to other transplant centres and Harefield Hospital are also successfully undertaking the programme too.
I've also been up at the hospital a couple of times, as I'm in involved with the Transplant Patients' Representative Group and we've been busy planning our next support and social meeting, which is on Saturday 25th June. (Contact me for more details should you be a Papworth transplant patient and wish to attend) We will be having a talk on 'Life as a carer' and our usual buffet lunch and raffle. Also, we've been working on our new notice board in clinic, there's still more to come, so keep a look out if you happen to be visiting transplant clinic.
Boxes ready to go to Papworth Hospital Charity Shop
Then followed the not so planned weekend, spent in hospital. We were planning a fairly quiet weekend and got up last Saturday morning quite early, as we thought we'd go out early, beat the crowds and buy some bedding plants for the garden. I hadn't been up long when I thought I felt a bit odd, then I felt ok so just carried on with breakfast.
When you've had a transplant, you do find yourself quite tuned in to what your body is doing, especially when you have to do daily observations like weight, temperature and lung function. I try not to be obsessed, but I do find myself wondering if something is going on at every twitch, twang or ache or pain - it's like a knee jerk reaction I think, to all the traumas of the last few years, the fact we have it drilled into us by our medical teams and the uncertainty that still lingers there somewhere. Usually in the same split second I can just dismiss it, which I did in this case. About half an hour later though, I had the same funny feeling again and then I found myself with Rob standing over me on the kitchen floor.
A faint is a worry for anyone, sometimes it's nothing serious, sometimes it is, but when you have transplanted heart and lungs then you can't dismiss it and wait and see. The nurse at Papworth advised to dial 999, and when we did the operator wanted to stay on the line so they could talk Rob through CPR if needed - funnily enough he'd signed up for and had CPR training at work that week. I'm not sure I can say he was stood there hoping to give it a try, but at least he had some confidence. Then the ambulance arrived. Of course, Ted was all over-excited at all the goings on and the paramedics with their bags, so Rob had to put him out in the garden while they did their initial checks.
I had to be taken into the local hospital and after going through the resus unit and two acute assessment wards, seen by quite a few doctors - cardiologists, neurologists etc - I went on the cardiac ward to have my heart monitored for the night. They were all so fantastic with me, couldn't do too much and ran every test they could to rule things out. In the end we couldn't get to the bottom of it and on Sunday evening I was allowed home with a few follow up tests still to be done. I'm also going for a full MOT at Papworth in the next few days just to be on the safe side.
It was good to be back home and very uplifting when I received a few cards and letters in the post thanking us for donations to Papworth Hospital Charity and Papworth PH Matters Support Group. The donations were from the proceeds of my book 'Life is for the Living'. I just want to thank everyone who has purchased it, reviewed it and help spread the word about it, as it's thanks to you that I've been able to give donations to these causes that are dear to my heart.
There's been no more blips since, but I've been mainly resting and using it all as a good excuse to read a few books and here we are again about to start a new weekend. I'm feeling back to myself again - I think - I don't know whether I should dare to say that as the last time I said I felt good...
I know this has been a long one, so if you're still reading - here's to a good weekend for everyone, make the most of the good days and enjoy them.
Here's a few pics of the cards and letters - I just wanted to share as it's also thanks to all of you for supporting my book.