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! 

New Horizons

It's always good to make plans and have things to look forward to and as a family we'd been making preparations to celebrate both Sarah and Rose's graduations this autumn. Yes, somehow, both girls have finished their studies at the same time. Obviously these events were always going to be very important to me - seeing the girls graduate was always going to be special, as I simply believed at some points when I was very sick that it would be something I wouldn't ever get to see. Those milestones become very significant when you fear that you may never reach them. They can give you the motivation, hope and drive to keep on overcoming the odds. 

Sarah and Rose both started their studies during that long period of my illness and fight with Pulmonary Hypertension and during my transpant and recovery. Then over the years following my transplant, I've been able to see them both make their own direction in life, complete the studies they'd undertaken and grow in confidence and embark on new things. Being able to experience this and time with my family is the most wonderful part of having my transplant. 

It feels like their graduation celebrations are a culmination of all the things we've been through together and successfully overcome - like they are celebrations about moving on and moving forward in life. This week, it was Sarah's graduation and although I'm not quite feeling my best at the moment, I was more than determined that we would carry on with the plans we'd made and that I'd go and see Sarah graduate. It felt too important to miss out on; it was one of those things that I always said I'd love to see when I was waiting for my transplant. 

We had a lovely time and a wonderful morning at the ceremony and of course we were very proud parents amongst many other proud families enjoying moments with their loved ones. These moments are so precious. Sarah graduated with the Open University. She had worked full time while she undertook her diploma. Her next step is going to be motherhood, something completely different. For me, that means being a grandma - something I hadn't dared to hope for. We all have new adventures on the horizon, new experiences and new things to learn and do. 

One of the lovely things at the ceremony was that there were people of all different ages celebrating their achievements with their families. There were young people and then people who were in their seventies who were graduating. It was very inspiring and a reminder that we are never too old to learn and embark on new things.

My next priority is to keep well enough to go to Rose's graduation, which is coming up soon. Until then it's plenty of rest, recuperation and hopefully feeling better. 

Graduations and Babies

It's been quite a lovely week here in the Graham family as we have lots of good news to share. 

Firstly, both Rose and David have achieved firsts for their university degrees, so we were all really delighted and thrilled for them as they can now both move on with confidence to new careers and ventures. David had his graduation this week and it's been lovely seeing the photographs. 

Rob  and I are both really proud of Rose. I can always remember, hoping that I would see her complete her degree and graduate. Her graduation isn't until November, so I have that wonderful milestone to look forward to now.  It's something that I didn't expect I would ever see a few years ago, so knowing she's completed her degree and achieved a first is pretty special and we're already making plans for going back to Dorset when she actually graduates. More celebations to look forward to ahead. 

We are particularly proud of her as it wasn't so easy for her with the worries over my health. During her first year I was already listed for and waiting for my heart and lung transplant and I was often in and out of hospital and I know it was difficult for her being so far away from home worrying over what was going on. Then when she started her second year, she had to come straight back home on her first day back at university because I had my transplant call. She had to cope with me being in a coma for a while and the worries that came over my initial recovery. 

For me personally, it feels a big moment and another one of those special times where it makes me stop and realise how precious life is, what a miracle organ donation can be and it makes me feel even more grateful to my donor. We need to keep raising awareness of organ donation though, so that others can be given a second chance like I have. There are still around six thousand five hundred people waiting for a transplant, their lives and their families lives on hold while they do. 

We've also been keeping a secret for a while and have been bursting to tell everyone the news. This week we're finally allowed to share that Sarah and Oli are expecting a baby in January, so I'm going to be a grandma for the first time. We've seen the pictures of the first scan, which are pretty amazing and show so much more detail than I remember when I had my scans for Sarah and Rose. I'm so excited and again feel how amazing it all is that I've been given these chances. I'd always hoped for this moment and it's wonderful to have the chance to see the baby in the scan pictures, I can't wait for January now. Again, it all feels very poignant and I'm so thankful to my donor who has given me these moments. 

My book 'Life is for the Living' is still flourishing and selling and this week sales have topped over six hundred and fifty, which I'm delighted about. I hope that with this many sales I've been able to spread a little more awareness about what it is like to live with Pulmonary Hypertension and how important organ donation is. There has been some wonderful feedback and I know readers have been passing the book around to share with friends and help spread the word. Rob received a lovely text from a friend who had bought a copy for his friend who's a GP. He's now going to use the book when he trains new medical students. I think this text made my day - it's that thought that there are people out there who will now have a better understanding of what it's like living with rare disease and transplantation. 

A massive thanks to everyone who has helped me achieve this and bought, recommended or reviewed the book. I'm soon going to be able to make some more donations to the charities and support groups that are close to my heart and it's all thanks to you.