Happy Times

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! 

A Transplant and a Wedding

The last couple of weeks have been absolutely amazing. 

There we were knee deep in finalising all the wedding plans, I kept finding myself a bit overwhelmed and very emotional that this was even all happening. We were just working towards getting all the house organised, drink and food bought in readiness for a house full of guests both before the wedding and for a celebration party on the Sunday afterwards - all this on top of finalising plans for the church and reception, altering outfits, pressing wedding and bridesmaids dresses and veils and all the other last minute things you do. All very exciting and emotional at the same time after all that planning for the last eighteen months. 

We were just about ready to start the final rundown, which started with travelling to Lancashire and back to pick up my mum so she could join in the fun with us all. On arriving back it would then be the wedding rehearsal on Thursday at the church, followed by a family meal and then on Friday, Sarah, the bridesmaids and my sister and family would join us all throughout the day and us girls were having nails done and then another family meal was planned before the big day. 

 

It was all stepping up a gear and now getting quite emotional. All was going perfectly: busy, busy and then right out of the blue I was roused at 5.30 am by my mobile phone ringing...

I still have my mobile phone by my bed, just like I had during the wait for my own transplant. It has been there every night for a very long time, waiting for yet another all important call. An odd time I will forget to put it there and I cannot sleep until I've gone back down the stairs to retrieve it, as it may just be the 'night' it may ring. 

I know who it will be right away when I wake to the ringing - I have even been half dreaming of her, as despite her own despair she has been supportive and excited about the wedding - she has just shared my last blog about the wedding; she is supposed to be coming to the wedding. Lots of us close friends have been trying to keep her boosted, trying to take her mind off the fact she has had to wait for well over three long years now and her transplant still hasn't happened - only three awful false alarms. Having endured a wait for just over two years, I know how difficult this can be. It is unimaginable to think of a wait that is that long: when you are feeling so poorly amidst what feels like is becoming a hopeless situation. We are all running out of things to say really; frightened of losing hope ourselves even. 

'Hi Kath, I've got my transplant call...' says an animated and excited Stacie - so many of us have been waiting for this day. I'm so excited scrabbling around with my phone and half asleep, it falls from my hands and drops off the bed! It is a long, long day as we wait for news - firstly whether it's even a go ... after three false alarms we wait with some caution ... then before  2pm Stacie phones again - we exchange some 'good lucks', some 'love yous' and then she is gone - there isn't really time to say all we need to say to one another ... another long wait. I expect it to be past midnight if my operation is anything to go by, but no - not our amazing Stacie - we get news on and off that things are proceeding well and by around 8.30pm all has gone to plan and the operation is complete. 

In the early hours of the morning there is more news - all is still well and they are going to wake her from sedation. It carries on - simply amazing - there are no words - bypass equipment is removed, ventilators are removed and Stacie is even trying breakfast and then strawberries for lunch. It is like a miracle ...  We are all thrilled and everyone's emotions are running high ... if you are a similar transplant patient, you tend to relive it all again and feel every step of the way and all the emotions. It is all too overwhelming, as emotions are already running high in our household - we laugh; we cry with happiness; we keep on welling up. Stacie keeps on doing well...

Then back to the wedding, we start the final countdown in between the 'Stacie' updates - she's posting again on social media - her picture on twitter from her hospital bed captioned, 'I'm alive!' goes viral on social media - we are elated at her progress. Just before she posts this on twitter we get a text that says, 'Hi guys, I'm alive! Lol!'  We are sat full of excitement and in tears in the car on a motorway service station en route to get my mum. Then driving back from mum's and there just happens to be a live broadcast of a heart transplant on Radio 5 Live - we listen - it's an incredible experience listening to someone relay what has happened to you - and what has just happened to Stacie -  we are in awe it could possibly have happened to any of us. Emotions of all kinds are stirred up once more. 

The wedding - Stacie - transplant -  the wedding - Stacie - transplant - the wedding.... it is all surreal now - too many mixed up emotions. Every day is incredible - incredible news of Stacie; incredible that I am actually involved in organising my daughter's wedding and fit and well enough to enjoy all the frenetic build up...

Saturday arrives, the sun shines high in the sky and the wedding goes perfectly - an absolutely perfect end to one of the most emotional of weeks. A most brilliant and overwhelming day, one that I wouldn't have seen if it wasn't for my donor and to be able to live this day and celebrate with so many of my family and friends is a truly wonderful and magical experience. 

It has been a dream come true for Stacie too, when she received her new heart and lungs. Her new life has now begun with a great start at long last - again all thanks to the kindness of a complete stranger. We managed to pop and see her just after the wedding and she looked fabulous and was so thrilled and excited she'd had her transplant. 

Organ donation simply changes and transforms lives ...it can never be underestimated: the hope it brings; the priceless moments it enables us to share with our love ones; the future it offers to us. 

Celebrate those Precious Milestones ...

If you haven't realised it yet, there is a wedding on the horizon in our household! A wedding is a joyful and uplifting event for most families, but when your life has been under threat and at times hung on the balance, then just the thought that you may get to see your daughter getting married soon brings on a whole new level of feelings and emotions.

It takes me back to the start of all this - to 'that' day, not quite a whole five years ago yet - and being sat down and told, 'You aren't going to live for very long.' What goes through your mind when you hear that? Your future - that's what - that future you suddenly aren't supposed to have anymore - wiped out by just a few words. What do you envisage as part of your future? 

For me it was my family that automatically sprang in my mind as the consultant spoke and I could barely listen, or more like I listened, but couldn't hear properly because of all the thoughts suddenly popping in my head. What about Rob? What about the girls? I won't be there, I won't see them do all those things we are supposed to do together. All those milestones: birthdays - wouId I even see my 50th? Would I see Rose's 18th or Sarah's 21st? Then those things like wedding anniversaries: our twentieth; our twenty fifth... then weddings? The girls' weddings that may or may not be somewhere in their futures. My thoughts swirled. These things were being taken away. Just like that. Done. Gone in just hearing one sentence. 

Then every time there was a crisis and I had to fight to survive, it would be all these things that would surface again. Every milestone you want to fight for; every milestone you desperately want to reach and that's what made me fight. In turn every milestone you reach becomes a massive achievement, because you weren't ever supposed to reach them and then you want more and more. Every one of them is precious and has to be celebrated. Living life has to be celebrated. These moments are so precious and cannot be taken for granted.

Thanks to the best and most expertise of care from a wonderful hospital and to my donor for the amazing gift of my new heart and lungs, I've managed to reach so many new milestones and now it is just a week to go to Sarah's wedding, something I still cannot believe I might see. I almost try and refrain from getting myself too excited when there is something good to look forward to, just in case I have a blip - it happened so many times while I was ill. You almost become numb to excitement and disappointment so you can cope with focusing on the next thing you have to deal with. I usually post after I've managed to do something, but this time I'm bubbling with too much excitement...

We are all so different in what might drive us on when times are hard - what motivates you to try and get better - to recover and fight through those hard and difficult times? 

This week's pics are the peonies in my garden

January Bits and Pieces!

This has been a busy week with all sorts of bits and pieces going on, wedding planning being one of the main activities amongst them!

Firstly, it was back to reality and a visit to the GP to finalise which drugs my surgery will prescribe and which they won't and to also update the doctor on my changes in medication. My surgery is only able to prescribe the 'cheap' drugs and not the more expensive ones. These will come from Papworth. It is all a bit of a rigmorole, as at the end of the day it will be the same Primary Care Trust that will pay for them anyway. 

It seems to be a big lottery over drugs and who will pay for them: I've met other transplant patients whose doctors are willing to prescribe all the drugs and then others like me, who have been refused the expensive ones. According to the newspapers it seems to be a similar situation when it comes to cancer drugs and there are even reports of drugs being refused because they are seen as too expensive, although they have been approved by Nice. At least I am going to get my drugs one way or another, so I can't complain, but it seems wrong to me that there isn't just one straight forward system for all. 

We celebrated an early 'Burn's night' on Tuesday evening with haggis, tatties and neeps - we always celebrate 'Burn's night' - Rob was born in England, but his late parents were Scottish, so we like to carry on traditions! It's a quick and tasty meal, proper winter comfort food! And all washed down with a wee dram of whisky if you fancy one! 

We were recently interviewed for an article that is going to be featured in Hertfordshire Life, the article is going to be about living in Knebworth, but they had seen our transplant story in the local news and wanted to include it too, together with our views on living in Knebworth. We are always happy to try and spread the word about organ donation, so on Wednesday a photographer visited to get some pictures to go with the article. We are beginning to get used to this!  The feature will be in the March issue, which will be on sale in February. 

We have been exploring a few wedding venues this week too, for Sarah and Oli's wedding, just shopping around really to see what there is available and when and getting an idea of costs. This is all very exciting for me, and even more special in the light of my transplant. They hope to get married in spring next year and now I've had my transplant, I'm looking forward to enjoying every minute of it -  planning, preparations and all! It's a good excuse to get out and about and have a few afternoon teas - as Oli said on Saturday, after seeing a venue that didn't quite meet our needs, 'Well at least we've had a good afternoon together and enjoyed a nice afternoon tea!' It's going to be a lot of fun: I'm going to make sure of that! 

Just when we had thought we had finished with media interviews for the time being, on Friday I was asked to do another interview with the British Heart Foundation for their magazine. I was more than pleased to help with this, as it was about living with Idiopathic Pulmonary Arterial Hypertension and the importance of Professor Morrell's work and research on genetics, which aims to help develop new treatments for Pulmonary Hypertension. Hopefully the article will help raise awareness of Pulmonary Hypertension. His team were awarded a two million grant last year for this important research, which we are all hoping will lead to some targeted new therapies for PH and even a cure. 

We are still catching up with friends we haven't seen since my transplant and spent a lovely day on Saturday when friends came from Lichfield, near Birmingham to visit us. It all felt a bit surreal at times, as last time we met up was just before my transplant and now I've recovered a lot from the operation it was a bit like I had just blinked and it had never really happened! At other times I noticed how much more energy I had and how I can concentrate on conversation for longer. We are slowly managing to meet up again with many of our friends since I had my transplant and seem to have a busy calendar over the next month or so. 

After a lovely weekend, just as things feel like they are getting back to some normality after my transplant and Christmas, it's time to start packing a case ready for my next hospital visit - transplant clinic and yet another brochoscopy are looming again. Hospital always brings it home to me, the seriousness of all that has happened and reminds me that there is always some uncertainty about the future. I always begin to get worried about what they might find and why they need to keep checking my lungs over and over again. On the other hand it is always a relief to be going back as there is always something niggling - this time my never-ending cough feels worse this last few days - so it will be reassuring to be checked. It's always a massive relief to get home again and be reassured that all is going well. So I'm bracing myself ready and hoping I'll be home again fairly quickly again. 

My late father once gave me a lovely silver cross and disc engraved with a prayer called, 'The Soldier's Doxology', which had belonged to my grandfather. My grandfather wore this during the Battle of the Somme and survived it. I always keep it with my transplant bag and bring it to the hospital every time I stay in or visit. It is my lucky charm, I reckon if it worked for my grandad, then it could work for me! So far, so good, it will be coming with me yet again! 

Today I'm also sending off my first writing assignment for the writing course I've just enrolled on. I've decided it's time for some new challenges and activities now I'm getting my life back again and writing is something I can do from home and can also manage even if I feel a bit under the weather so it is a perfect choice for me. It feels good to get started on a new challenge and I am mainly doing it just for my own pleasure, but who knows where it may lead ... we will see! 

So a busy week with lots of bits and pieces going on - life seems to be getting busier and busier now, which is good news, because busier and busier means getting better and better!