Precious Life, Special People and a Most Precious Gift

Our week, this week, started with some shocking news of our dear elderly neighbour being involved in a terrible car accident and it was a very stark reminder of how fragile life can be and how you can wake up one day and go about your ordinary business, but life has something very different than what you planned in store for you. It really brought home to us, yet again just how precious each day is. We are hoping and praying our friend will recover and we will be able to see her soon.

We went back to Papworth on Saturday, not for me this time, but to visit a few friends who are in hospital there.

First stop was to Mallard Ward to see Anne, who was 9 days post heart and lung transplant and making a very good recovery. She was happy, smiling and and still in shock that her transplant had actually happened. It was really good to see her and as well as laughing and smiling, we shed a tear or two! She is still recovering well and has been for a few walks outside, to the gym and is looking forward to going out for a couple of hours for Sunday lunch this weekend. So onwards and upwards Anne, hopefully she may get home sooner than she ever expected.

Next stop was Princess Ward for a quick hello and chat with Sita, who was in hospital for a procedure to sort out an ongoing problem she has been struggling with since her transplant. Sita is one of the bravest people I have ever met, when I think of all she has gone through, first with her PH, then with her heart and double lung transplants and now she is having to cope with a very difficult recovery. We are wishing her well and hoping that she can make a few steps forward to going home.

We then saw that Bernice was on Princess ward too. Bernice was on the ITV News 'From the Heart' campaign with us and we recently met her in the Transplant Continuing Care Unit. She is waiting for a heart and double lung transplant too, so we popped in to say hello to her. Again, we are wishing her well and hope she gets home soon or better still gets her call for her heart and double lung transplant.

On Monday evening around about 11 o'clock we were just going to bed when we both got a text from Stacie, saying she had got her phone call for her transplant. Stacie is a PH patient like myself and has been waiting for heart and lung transplant for over a year now. She was still waiting for the transplant team to ring her back and give her more news. Of course there was no way I was going to go to sleep until I heard more news, so I asked her to let us know any more news if she was able to. An hour later she let us know that they were sending a car for her and they would be able to let her know more once she got to hospital. So we chatted a little longer, then half an hour later her car arrived. She was on her way then, but I still couldn't get to sleep not knowing whether it was going to go ahead or not. We chatted and joked more while she went on her journey, her mum and dad following in tow and we checked we had Megan's number, Stacie's twin, as we knew Stacie would probably lose her signal once at hospital and would probably be too busy and have too much on her mind if things went ahead.

By 2 am we were dozing off back to sleep then we were awakened by my pump beeping and when I sat up I felt really unwell. In all the excitement I had drifted off to sleep with my line twisted and my drugs were not getting through. Eventually we sorted it and after I was sure I felt all right again and the drug was getting through we went back off to sleep. At 5am we got another text from Stacie to say it had ended up being a false alarm as the lungs were not in good enough condition to use for transplant.

We were so disappointed for Stacie, but she very admirably took it all in her stride. We are prepared by the Transplant Team for false alarms, for a variety of reasons, so we are very aware it may happen, but still when it does, I think it must be very difficult. Stacie was pleased though, as they told her the heart was in good condition and another life was saved that night instead. For us, well it's really encouraging to know that donor organs do become available and that those phone calls we wait so eagerly for do happen. Hopefully, for Stacie, it will be soon now she has had a practice run.

With all this transplant activity happening, it got me thinking about organ donors and their families and none of this would even be happening without them and how without their willingness to commit to organ donation there would be no options left for people like us.

When we were in the ITV campaign 'From the Heart', Rob and I came into contact with many families who's lives had been affected by organ donation and transplant. One very special person was Sally, who featured on Granada Reports during 'From the Heart' week. Sally is a mother who found herself in that dreadful position of being asked if she would say 'yes' to donating her young son, Toby's organs after he had a tragic accident whilst they were on holiday. Sally always says that the decision was an easy one, because Toby had told her that was what he would like to do should anything ever happen to him.

Since Toby's accident Sally and her husband Graham have campaigned relentlessly to raise awareness about organ donation and have also run events to raise awareness of Cystic Fibrosis, one of Toby's friends had CF and it was a cause dear to him. Toby's story is a very inspiring one for me: it helps me know that when I may get my heart and lungs, that is what the donor and their family wanted; it helps me to know that there are generous families out there who are willing to give the most precious gift of all, despite the despair they are going through. I hope Toby's mum and dad can see that not only has Toby saved several lives, but he has also given a lot of people like me and our families some inspiration and encouragement too.  
    
You can follow Sally's very moving story on her blog and take a look at the website dedicated to Toby, by clicking on the links below:

tobysgift.wordpress.com/

tobysgift.co.uk

So, this week, in a nutshell, for us, has been one of both appreciation, encouragement and inspiration. We have learned yet again how precious every day is; we have been inspired and encouraged by special friends we have seen or been in contact with, who are treading very similar journeys and we are inspired and encouraged that there are families who are willing to help us along the way.

If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

MOT Week

This week has been a busy week of check ups and appointments for this, that and the other, as well as being the beautiful, warm, sunny week that we all have been waiting for.

Wimpole Estate

First stop was Monday and a visit to the hairdressers, just an ordinary mundane or pampering experience for most people. This is one that I usually mostly enjoy, but it does bring with it some stress for me these days. The simple action of just leaning over the sink for a hair wash can make me very breathless at times; ridiculously just leaning over a sink uses a lot of my energy in one go and I can feel my body straining to cope. In turn I can feel the Epoprostenol drug start to kick in and my face turning a bright shade of red as the drug does it's work and opens up the blood vessels so my heart can cope, I often look and feel as if I have done three rounds jogging furiously round the block by the time they are towelling my hair dry. With this comes the fear of fainting, which I do not want to be doing in front of everyone in the hairdressers, so I am always a bit anxious until this part of the process is done with. Rob usually drives there and back to reduce my anxiety. Luckily my hairdresser knows me well and all about my illness, but even so I don't like people seeing me like this and I pretend everything is normal and sit there trying to look calm and collected because I don't want to be 'different' than the other customers, although I feel it. My hairdresser has sometimes asked me what the rash is and I have tried to explain that it is strenuous for me to just have my hair washed and it is just my drugs working.

All went well for this visit and as most people do at the hairdressers, I felt I'd had a pampered afternoon out and felt better for a new trim. My body behaved itself for me that time.

Greenhouse at Wimpole

Next was a visit to the dentist on Tuesday for some root treatment. It is important for transplant patients to keep bang up to date with dental checks and treatment as infection can spread easily into the body from the gums and therefore, if your teeth and gums are in bad condition you can be at some risk post transplant. It is one of the stipulations of going on the Transplant List that you have regular dental checks. The dentists is another place I feel quite vulnerable, like many people I don't really like to go to the dentists anyway, but having to lie quite flat, with someone's hands in your mouth when your breathing is already impeded can be something of an ordeal and there is a very real anxiety of getting breathless and then the fainting starting again. Lying flat can also start of palpitations for me, which is another worry. Breathlessness and palpitations usually spell a faint looming in my case and fainting means my  heart not coping and I don't want all this to start happening in the Dentist's chair. But I managed to have the treatment done successfully and mission was accomplished.

I am lucky I have been going to both my dentist and hairdresser for many years and they know all about my illness and are therefore both respectful and helpful throughout every visit. It is really hard for people to understand, as to everyone else passing through the dental surgery or hairdressers I just look like any other person and that's exactly how I want it to be; I want to be part of the real world and I long to be able to feel I could just go out normally without having to think about the consequences of everything I do. It can feel really hard at times to just undertake such casual, normal things that happen easily and naturally every day for most people. I know if I ever have my transplant and it gives me my health back, it will be just these simple things I will be able to do again without stress that I will value the most every single time I wake up in the morning.  

Thursday I had an appointment at the Lister Hospital with the ENT specialist about my ongoing ear problem and to get the results of my CT scan. As I had expected and hoped all was well - well apart from being a bit deaf, which I am told can be normal for my age! I've now been discharged, so that is one less thing to worry about.

My week was rounded off with a visit to the Transplant Continuing Care Clinic for my review. Again all went well here too, just the usual blood tests and checks by the consultant. We met a new consultant today, who was really approachable and lovely and we spent some time talking to Anne, the Transplant Co- ordinator. We also had the chance to meet Bernice at last, another heart and lung transplant patient, who we have been in contact with and was featured in the same news report as us when we took part in ITV's 'From the Heart' campaign. It was lovely to meet her.

A wishing well and sunny skies - guess what I wished for!

So all in all a very successful week. We have now nearly got to Saturday and I feel like I've had a full MOT. With my shiny trimmed hair and my sparkly teeth, I know my heart and lungs are still on their best behaviour and there is nothing sinister about my ear, so all is good with my world! The sun has shined and it's been a lot warmer too, which I think we've all been waiting for and enjoyed. We have, as usual, tried to make the most of the week and have enjoyed the garden and the plants that are now emerging and daring to come out after all the cold; we have enjoyed meals in the sunshine and managed to get out and about in the warmer weather in between all the comings and goings.

After 586 days of being on the Transplant List, I am still on course for having a heart and double lung transplant. It is becoming a bit of a fantasy in my mind after all this time and still feels as far from my grasp as it did when I was first placed on the Transplant List. I am, for now, just grateful that I am feeling quite well and able to keep on enjoying life as well as being well enough to stay on the Transplant List.  

Daffodils at their finest at Wimpole