Tuesday 30 October 2012

Guest blog Transplant from my best-friends perspective

I’m Julie, Kirsties best friend. She has asked me to write a bit for this blog about her transplant journey from my point of view….

22nd May 2010, I wont forget this day, I spent the day with Kirstie at the beach. I got horrifically sunburnt, so that’s one reason I wont for get it, But another is that this was the day that Kirstie and I really talked about transplant, the realistic prospect of it, the process, the outcome (good and bad) and how we both felt about it. Up until then, I knew it was a possibility, but that was it. I also thought before this talk , and I guess after it too, that transplant would be a long way off. One year later it was becoming a reality, very quickly. I was scared.

Nothing can prepare you for seeing your best friend stop doing everything they love, everything you love doing together…including managing to eat a whole rack of ribs and garlic bread EACH!! (Kirstie you know what I’m talking about!!) But it was happening. We still had fun and a laugh, messing around with hair extensions, me trying to push Kirstie around Tesco in Maud, before she got to ill to do that. I was scared to the pit of my stomach seeing Kirstie when she was really ill, hardly being able to walk to the toilet, just 3 meters from her bed. Although I never saw her at her sickest in Harefield.

One of the best thing about mine and Kirstie's friendship is we may not manage to see each other for weeks, unlike we used to a couple of years ago, but when we do it’s always the same, we chat, we laugh and it never changes. We used to talk on the phone every night for at least and hour.

I do have a regret from when Kirstie was really unwell, and it’s that I didn’t see her enough. Although I knew what was happening, and it was totally apparent when I saw her, I don’t think I wanted to admit it to myself. It did hit me one day though, I was cooking tea with my boyfriend and suddenly burst into tears… I didn’t want to lose my best friend. I am a strong believer in gut instinct, my gut instinct was telling me that I wouldn’t lose her. BUT I wasn’t there for her enough, through my own fear. If I could go back, I would change that.

I was texting Kirstie as she was airlifted to Harefield. I remember asking her what was happening, she told me not to worry. I remember reading this, I was in my car in a bit of traffic. That text comforted me for all of a couple of minutes, until my logical mind caught up with me and slapped me round the face DON’T BELIEVE HER, SHES QUITE OBVIOUSLY NOT OK!!!

That was pretty much all I heard from Kirstie for weeks. I sent her lots of texts telling her how much I loved her etc…I knew in my head what was happening but it didn’t seem real.
It was a waiting game.

keeping in touch with Kerrie, Kirstie's sister, by text, by phone, to keep up to date, this was hard. A number of times I had tears streaming down my face, not sure if Kerrie could tell or not really.

Waiting to hear what was happening, knowing what Kirstie was sedated most of the time, was so hard. 180 miles away from her, normally Kirstie would tell me how it was, she wasn’t there to do it this time. Kerrie would tell me what she knew, and what the outlook was, and how long they thought Kirstie had.

Kerrie told me about the doctors talking about ECMO, it sounded horrific, BUT… a life line, to bide some time. I didn’t know all the details, or the risks, but it was obvious there would be some. As long as it gave Kirstie more time, and a rest, which undoubtedly she needed, I tried to stay positive. All this time I kept my gut instinct in mind. Not knowing was very hard, but also maybe made it easier from my point of view. I couldn’t imagine what Stu and Kirstie's family were going through.

There were the calls that came for lungs, but they weren’t any good. I’d get a call from Kerrie to say they had lungs, then another to say they were no good. Tears. Waiting. More tears.

Then on Monday July 11th at about 7:30am, Kerrie called. They had lungs. This felt different, I carried on smiling after this phone call, even though they didn't know if it was going ahead yet. About 15 minutes later, Kerrie called back. I was waiting for the call. The feeling was amazing. WOW. I cried, with total happiness. Then I had a reality check, someone died for this to happen, I felt an immense amount of sadness.

I waited all day to hear how the op went. I work in a children's nursery so I was very busy all day, so it did help to keep my mind off it all. Kerrie let me know it all went well, there was still a long way to go, but Kirstie had done it.

The next few weeks were filled with waiting, I saw pictures Kirstie's Mum was putting up of Kirstie online. I felt of proud of her for making such an effort. I had no idea what was really involved in getting better. Me and Kirstie had sort of discussed it, but to be honest I don’t think she even really knew 100%, can anyone? So that’s why you have to stay positive, everyone says that, but you really do. Look forward, think about all the good things to come. I kept thinking about how me and Kirstie would be able to have our BBQs again, take Kia for walks, go shopping. I couldn’t wait.

A few weeks later, I was on lunch and work, my phone went, Kirstie's name flashed up. I was so excited to hear her voice, we talked for quite a while, and said as soon as she was home I would go and see her. This phone call was the best I have ever had. Hearing her voice after everything. I had tears in my eyes. So happy. Its moments like this that make you realise, like I said before, that you have to stay positive. Be honest with yourself, but be positive.
Kirstie's journey has been a very hard one, but I know that she needed everyone around her, Stu, her family, friends.

I thank Kirstie's donor and their family everyday. Through their devastating loss and sadness, they created so much good and happiness. So brave.

I will be posting my director mels blog on filming the documentry in the next few days and also write about the friendship we formed.

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Sunday 21 October 2012

Did you know, I never used to want a transplant

Blog request from Clive Hayward 'did you ever think of say no to transplant?'

I hear a lot of CF people telling me they don't want a transplant, it's not for them, or they wouldn't have one if it came down to it. You know I actually never wanted a transplant.

I always knew that with cf you could have a transplant, I don't know how I first knew it, but it's just one of those things you grow up knowing, like I grew up knowing people with cf didn't live as long as other people. Then one day my mum told me my friend Debbie was going on the transplant list. I was only 10. I know I have written about Debbie in the past and have probably told you all similar things in a round about way, but I'm going to go into the whole decision to have a transplant a bit more.

See Debbie got her new lungs, but it was to late, she didn't make it. She was 16 & I was 10. That was my first loss to cf and it was a big one, it was in the days of cf holidays, we mixed in clinic, ran around and played together, she looked after me and I adored her. I thought she was basically the best thing since sliced bread. Well it turned out she was a whole lot more amazing than slice bread could ever fantasise about being. Losing Debbie I instantly decided I didn't want transplant, I can't really see my reasoning, transplant was a ray of hope but to me all I could see was death and false hope. I was scared of it and all it ment, I was scared of my own mortality and by some how rejecting transplant and life embracing my mortality it didn't get the better of me and I was over coming my fear of it. Little bit messed up I know.

I also knew it wasn't forever, I was a real smart kid at 10, I don't know how I even knew these things. But I knew I didn't want to go through the getting iller process and then get well to only get ill all again.

I would quite matter of a fact tell my friends that I was going to get ill and need a transplant and I wasn't going to have one, it wasn't what I wanted. Do you know I even told Stuart I was never having a transplant.

I always said that by the time I'm that sick, I would be ready to die anyway. I was very dramatic in a calm nonchalant way. My embrace of death, it doesn't seem so brave and heroic as it did back then.

Then one day my doctor brought up transplant in clinic, he said that all my lung function was transplant criteria. The tears came blurring into my eye. I can't remember it all now, Just the convosation with my mum on the way out the hospital, as I stopped 5 times to catch my breath and sit down. I told her I wasn't ready to discuss it with anyone yet and would do so when the time seemed right. I told stu and I can't remember that convocation either, it's like this boulder had hit me and everything went blurred, but suddenly my mind wasn't screaming no any more.

It was a whole year from it being brought up until I actually decided I had had enough and actually yes I desperately wanted a transplant. It was me who asked to be referred then.

What changed? It became real and suddenly my life had just started to become all i had wanted it to be, I didn't want to go out in a blaze, like I had seemed to think I would. I hadn't lived long enough to change the world, do all the things I wanted to do. I hadn't even lived yet. Suddenly embracing death wasn't brave at all, i needed to be braver and learn to fight. I think Stuart saved my life, I had lots to live for before, but he just gave me that one thing I needed to fight for. I know it sounds cheesy but I guess love made me fight that little bit more.

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Tuesday 16 October 2012

Elf award and rotary conference talk

So the other day I recieved a certificate through the post

It was a award from ELF, European lung foundation and hears the letter that went with it

'The annual elf award is presented to a group, or individual, who have made an exceptional contribution to lung health. By sharing your story as a nominated lung champion, you have helped to encourage thousands of people across the world to enjoy the benefits of exercise, despite their lung condition'
It was a great honour to be given this, I was nominated by live life then give life to be a lung champion due to all the fitness activities I do including my cycle tat I was training for and getting back to work teaching fitness pole dancing. I was chosen as a champion and featured on there site, when the award came through the post I was really surprised. It's nice to know that perhaps I'm making a difference, changing people's lives for the better. For me this award just encourages me to continue
I'm also working on some other projects with elf on transplant and organ donation.
Hers the link to my feature on the site
Also on Sunday I drove down to Plymouth for the welsh rotary conference annual meeting I was invited to speak at. I had my usual speech prepared, read over it accounting my journey through transplant, but this time I added something. See when I appeared on John grovia show for bbc radio Devon about my bike ride, John who I had meet before when I was featured On The show side swiped me, infront of a live audience and on radio he asked me to read my letter I had wrote to stu for if I didn't make it. It was a emotional reading reducing me to tears. John apologised as he thought he might have gone to far, but if I was a presenter interviewing myself I would say he went just far enough. The room was howling with tears and the response from or was amazing.
So I read the letter in the appropriate part of accounting my journey, I cryed, but maintaining my composure, you know the blurry eyes and sniffling nose but you carry on. I only read a small part, as I think that is powerful enough and self preservation. It was all I could manage. But it had the affect I needed.
I've included it in a blog before but if you haven't seen it here it is
To My Dear Stuart,
As I sit here, I'm in hospital it’s the week before we go to harefield for our 3day appointment. I say ours, because it will determine how our lives will be lived from now. We know my health is at a stage where I have a 50% chance of surviving. In writing this in case things didn’t go to plan sweetie. I'm not here. This doesn’t make me sad for me, I'm sad for you because I love you and worry how you will cope now. I'm not going to tell you how to grieve, this is your part to do, You can grieve for me as you like, Iv got to say though I'm glad I'm not the one grieving. I couldn’t cope if it were you leaving me. I hope in time it will become easier, that you will always have a place in your heart for me but maybe one day you will have a space for someone else to? I hope you are happy in life and that you live it to the full for me, take chances, risks, do all the things you thought you couldn’t, go on holidays, spend time with friends and family. I know my nan will probably look after kia, because of your work, but if that changes please look after our little girl. She loves her daddy and would love to live with you if she can. If not then make sure you still see her, she would be very sad if she thought you didn’t love her anymore.
Just know I never wanted to leave you, I love you to the end of the earth, you have been my rock so far and I don’t doubt you were right up until the end. I want you to know being with you has been the happiest days of my life, I wish we could have got to the other side of transplant and enjoyed that time together to but I'm just glad you were in my life for as long as you have been.
I don’t know if this letter helps in anyway.
Love now and forever,

While I was there there a man who's name I cannot remember from the BMA was there talking about transplant statistics and the opt out system which Wales are changing to. All I'm going to say on opt out and opt in is there seem to be many pros and cons I'm not sure opt out would be affective for many reasons. So for now I'm going to sit on the fence.
The rotary club were very hospitable, I enjoyed a three course meal and was re enbursed for my travel cost on arrival. Usually for these things there's a very lengthy process. At the end I was represented with a gift.
The view from the hotel.

My gift, love my little welsh dragon.

How wonderful is this, the slate circles are coasters. While I was there I was made to feel like part of a big family and I'm really great full to them for being such amazing hosts, so conference organisers this is how you should treat you guest speaker in the future :-)
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Saturday 13 October 2012

ITU and all the nitty gritty

I asked a question, what sort of blog would you like to see, here's one of the replies I hope this blog helps.
@Princess_Ellie2: @KirstieTancock bit general but how to cope after itu and being sedated for days and the after effects x

Thinking about my time in itu is very hard, it a horrible place to be, people have asked me how you cope with it especially a prolonged stay, there aren't any specific coping mechanisms but when I think about how I coped, well to be honest I'm not even sure sometimes. Itu felt like a big consuming black whole, I felt like even though I had had my transplant my life had ended and all I and left was this all consuming place, now I know many of you are sitting there and thinking that's not encouraging, or inspiring, it's terrifying but I guess when u think how I'm doing now, you realise that there is a light at the end of the tunnel.

Firstly some of the things I didn't expect, Ecmo. I didn't know what Ecmo was, I didn't know how it would feel, I didn't know what dying would be like? Ecmo, is a machine that takes your blood out re-oxygenates it, it also takes the carbon dioxide out and your blood is pumped back in. Its a heart and lung machine. To me, it was terrifying, but I want to look at why it was so terrifying, I was dying, on the verge of life and death, my lungs were bleeding constantly, there was so much blood i was suffocating on it thro my ventilator and my body swelled up to three times it's actual size, I was very sick, but at the same time, I don't imagine dying any way was going to be any less terrifying. This machine as awful as it sound was a miracle machine, it keep me alive when all other options were exhausted and I made a full recovery after it. When I was on Ecmo, I was in and out of consciousness, people have asked me if your always asleep on it, the answer is no, I know many people who were able to be fully awake, although I know that's not a pleasant experience either. I felt more piece full when I was asleep.

Tracheostomy I didn't ever think I'd have a tracki, it's a tube through you neck to your wind pipe that they can ventilate you through, it's easier to do suction through this then a Ventilator through your mouth. To do this they take the ventilator off, change the stent in the tracki and put a tube into the tracki with suction, it's a horrible sensation, I refused suction one whole day ending in a bronch which set me back, a tracki isn't pleasant but it saves going through so much more if you really need one. I couldn't talk with my tracki until I had a voicenator on it. My vocal cord were really weak and also my new lungs were still weak so I couldn't talk very well to begin with. When my tracki was taken out, I was left with a whole, yep, all the way through, it has to heal from the inside out, you have it covered with a dressing and clean it out when changing the dressing, I thought it was weird and quite cool. If your dressings not on you can't speak as the air misses you vocal cords.

Depression, I wasn't prepared to feel depressed. To feel like I couldn't do it anymore, like I had now forgotten how to go on, to live. I was so used to dying, to find the will and drive to keep going was hard. I felt despair, like I wasn't suppose to survive. Like we had gone against the will of god. I know it sounds extreme but there's no logic in itu, when you had been what I had been through, it felt like god had abandoned me. I'm not very religious, in terms of I don't follow a church, but I believe in god, I believe In Heaven, maybe not hell though. I also felt like someone had died for me, we all know that's not true my donor was unfortunately already dead, they were simply giving life after their death, in itu that isn't clear anymore. It all lead to a deep depression, I didn't want to watch tv, I didn't want to do rehab, I wasn't even sure I really wanted my transplant that I had now had. These things are all normal, there not there forever, you will see the light on the other side, life does go on after itu.

Hallucinations, I was never warned out about these, not properly. They were confusing and felt more real than the real, I have done a small blog on these on there own. But to recap, I didn't see the fluffy bunny running around the room like some, I saw the devil, god, mermaids in gel fish bowels telling me it was time to breathe as I was dropped form the sky, my family fighting and arguing. None of these were pleasant, they were distressing and scary.

The thinks that helped me, we'll they say its important to have a strong support network around you and I can't emphasise how important that is, because on those day you don't want to get up and do rehab you need your family to tell you, you have to now. When you need a human touch, you need someone's hand, not just anyone, but someone you know loves you, someone you can trust, because for me everyone around me seemed like an enemy. When you feel like you can't do it anymore, you need them to tell you you can, but also sometimes you need someone to tell you to man up and actually you don't have a choice, you were there, you had that choice now it's gone. Now it's time to live, to do your donor justice. Sometimes just sometimes, you need that Stern talking to. That's why family are so important. They fetch, carry, encourage, tell you off, rub your aching body.

you've got to keep your eye on the prize, so to speak, why are you doing this? Why did you want a transplant? maybe you didn't but have been in itu for a different reason? What will you do when you are well? what will you do with the rest of your life? And again it's hard to remember when your in itu, that's why you need your support system, your cheering squad.

Speak up, now you may not literally be able to speak, I couldn't for a while, but if something doesn't feel right you have to let them know someway, most of the time you think it's all normal and that your bugging people but things like hallucinations arn't right and people can help. You don't feel like you, You feel extremely anxious, there all things that can be helped and suffering inside your self is painful.

Recovery after itu, well the recover after itu mentally can be a long one, I talked to a phycologist on itu and on the ward but once I went home, I felt I was ok. I was suddenly on the high that was life, but then these memory's keep coming in, for me, talk, talk, talk, don't stop talking it through with people, discuss events with your family, go over how things happened, there's all these blank spaces to fill and if you don't fill them with how things actually happened you tend to rely on horrible hallucinations and incorrect memory's things that are probably a lot worse than the real event. Every now and then I still recall things 15month later and I have to ask people, did that actually happen?

So my advice is based on my own experiences. I had a very tough time in itu, is it like that for everyone? No. There are those people who are out of itu in a couple of days, it's still hard but much smoother. Not everyone has hallucinations, depression, tracheostomies. If your reading this with the thought that this is what you will go through, then try not to worry, your experience may be completely different and if you have gone through something similar and not sure how to go on from there, well I guess this shows that you can get through it, you can live a normal life. There is life after itu.

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Wednesday 10 October 2012

Life's to busy to be blogging

Well I haven't been a good blogger, but that's what happens when life is happening. So things you've missed;

The tummy blockage
A couple of weeks ago I had the most horrendous time with my stomach, people with cf can get a lot of blockages, I have had my fair few, when they do happen it comes on very quickly. Literally I was ok went to bed and woke up in agony and started vomiting. A lot of time has passed for me to go into detail of everything that went on. Basically I was put on a surgical ward over the weekend where nothing but pain relief was given. I spent that time in a haze on morphine telling them what I needed and refusing all the treatment they wanted to give me that was wrong for my illness. As soon as Monday came I mustered up the strength I had and made my way to culm ward where my consultant would be. I stared at him and said 'I have a blockage, I'm on mere, I don't feel safe' he then went and got me transferred to culm, at that point I was really ill. I couldn't keep the medication they were trying to give me and I started vomiting up stuff from beyond the stomach, I'm really not going to elaborate on that. I was drip feed the medication, which I continued to vomit, but eventually some got through and the next day things were working. I was allowed home.

Unfortunately, the blockage had been so bad and I had been left for so long before it was treated, as soon as I got home I started vomiting again and was admitted back in. This happened several times, allowed home absolutely fine after 12hours of being fine and I came back in extremely poorly.

It was decided I needed to see the gastro specialist, my bowel wasn't sick whatever that ment, but it was confused over what it was suppose to do now and I would have to stay on some very high dose laxatives for quite a while. Which I still am. But things are better, although still not back to normal.

The birthday
It was my birthday on the 29th of September, I was spoilt rotten, I had my hair done, I got some new clothes and a ipad from myhubby :-) I literally had a amazing day, with any milestone I can only think about my donor and how without them none of it would be possible. I'm just literally so great full and I'm really trying to live my life 'well' to me that means
making a difference, helping others and enjoying it for myself as we'll.

The haul, I'm a lucky girl :-)

Birthday girl shiney hair new clothes :-)

The holiday
We were suppose to go on holiday this past week, but unfortunately due to being so sick with my tummy, we decided to do the wise grown up thing and wait till we know I'm 100% so I'm still waiting to have a nice length break away and really feeling some sun time would be good, even if I do have to hang in the shade due to my drugs. Instead we went Alton towers, stayed in the hotel, went to splash landings, ate an incredible amount, been to the cinema, ate out loads and been to London to see Russell Howard and good news being filmed. It was good to see him when I'm not in a wheelchair. I had a pic with him.



Wow I look so much healthier!

I'm now back to work as of today after just getting back from London.

Well I've now started teaching group again and really enjoying it, i put some adverts in the other day and expect to be really bizy from it. I'm also starting another job, I decided I wanted another job along side teaching pole for severally reasons, my job is a evening job and I have far to much time in the day, I hate being bored. I felt I needed something else in my life, also we are hoping to buy a house next year, none of this will be possible unless I'm earning a steady wage and we need to save more for a deposit, so another job will really help as being self employed although I earns he money, getting a mortgage with it can be really hard especially when you've had 1year off and miss that years accounts.

The job is working with severely disabled adults as a community and centre enabler. I've got the job and done a trial day there, I really enjoyed it and I'm just waiting for my crb check to come through so I can start. I'm very excited.

So that's it for now, there's not much else to say. I will try to be a better blogger from now but well life's to good and I'm enjoying it a lot, so please excuse me if I get wrapped up in life.