When do you get back to work

Something iv been thinking about is when do you go back to work post transplant? Especially double lung transplant?

Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.

This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.

Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.

I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.

So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.

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Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


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Fundo operation anxiety and fear

I've talked about the fundo operation im suppose to be having Here

Well they rang up the other week and left a voice message saying I can have it as early as the next week, suddenly the fear that had been niggling inside me hit, I couldn't bring myself to ring and still haven't. Thoughts swimming around my head and an all mighty no just keeps screaming out over it all.

I guess you might think me pretty silly, it's just a little op right? well no, like I said in my previous blog mine may very well not be and this was again reiterated in the letter I received about the consultation and it really put across just how much they don't think this is going to be simple. Nothing in my life has ever been simple, from treatments, operations and obviously my transplant (not that in any case is it simple but you get what I mean). I just don't think I can face waking up and hearing them tell me it went wrong. I can't face that feeling of the unknown again. I don't want the new scars either dotted across my abdomen or sliced right through the middle, I may have lots and I'm fine with them, iv come to terms with them in time but I just don't want to have to. The recovery scares me so much, I know in comparison to learning to walk and talk it will be nothing but when you've just built everything back up to somewhere, where you feel strong healthy again, to have any incisions in my abs will also halt my pole progress and training. it feels pretty soul destroying to be knocked back down. How many times can I keep getting up? I know some people may think me silly but all these anxieties from my transplant flood back when I think about it and its something I'm just not sure I'm ready for?

I decided to mention it to my cf nurse the other day when I was up there and ended up in tears feeling very panicky and having to calm myself before I went into a panic attack. I asked to see the phycologist to see if I can put myself in a place where I'm ready and I also have an appointment at Harefield Monday, routine clinic, where I will discuss necessity and other options (if there are any) the last thing I want to do is risk my health, but while my reflux has calmed and not posing Immediate danger to my lungs, I want to weigh up all the options and prepare myself a little more if this is the only way.

I'm just hoping there is some other way. I tried to be strong and just get on with it but I couldn't.





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Tummy bug, birthday, Neil's transplant

Well I have a few little updates. Just over a week now iv suffered from a stomach bug, it has been hideous, I have such a sensitive tummy anyway that it's really messed things up in there. I had some extremely high temps, faintness, sickness, diarrhoea , extremely bad stomach pain and general aches and pains. Im so glad to say the bug itself has now cleared up but Im still really weak and suffering badly from faintness, iv been to the doctors a few times this week having bloods done and they have taken really good care of me. Each time though iv had to be laid down and my legs elevated as I was so pale and faint. I'm just trying to build up my strength, resting but trying to do a bit more each day until my body gets used to it again.

My white cell count has dropped even more due to this bug, it was already low, at the moment there keeping a close eye but any lower and I have to go into hospital and have all my medication changed to get it back up. Having your white cell count to low means I'm to immune systems suppressed and if I were to catch anything else I would be extremely vulnerable.

With being so ill I've had a lot of panic attacks, this feeling of weakness has taken me back and has scared me a lot. It's not like me to have panic attacks.

It was Stuart's birthday yesterday and we did venture out for a couple of hours but that really took it out of me for today and we came back after finding out my white cell was low as I didn't want to risk being In crowds. We had a great day chilling out together and even that's a rarity these days with Stuart's work. So we thoroughly enjoyed just being together, well I certainly did. I love my hubby very much and find myself missing him all to often with the hours he works, hopefully that will get better soon! Stu was 28 yesterday and I found a grey eyebrow a few days ago :-D he he age doesn't scare me I find it encouraging, every year he's older I am to and therefore we are a year older together.


Today I had a text message at 2am, I didn't open it till 5am when I saw it there, it was from one of my greatest and best friends Neil. A guy I call bro. He has cf and he finally got his call last night! He pushed me around when I was in a wheel chair and I tried to do the same for him after my transplant when he got sicker, he was to stubborn and walked even though he was struggling. Neil was so sick recently he was in itu and I have to say I truly thought we were going to lose him. I don't know how I would have coped with that. Neil is now in surgery, today is the first day of the rest of his life. I hope my bro just gets the chance to live his life and do all the things he wants to, something he's never really been able to do. I'm so grateful to the person who gave him that chance, who signed the register and gave the greatest gift you can give, I'm grate full to there family for what they have done in such a tragic time and wish them all the love and strength in this horrible time. Thank you for saving my brothers life. Neil still has a long road ahead, so please with him a smooth recover and that he is home by Christmas with his little brothers and sisters so he can enjoy his favourite time of the year.


Im going down to Harefield Friday with a present for another friend who's had a extremely rough time and hope to see Neil. If I'm given the all clear from infection control as I would hate to jeopardise either of there recoveries.


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