Menopause

When you know something already, it's obvious to you for so long but Then when someone confirms that and suddenly it's like your really hearing it for the first time. The meaning sinks in and suddenly a little bit of sadness fills your heart.

My ovaries are very nearly completely shut down, I am going through menopause.

I never wanted kids, I always knew that with cf it's not really a possibility. I was always to ill to even think that there would be a time in my life that they would fit in. Knowing I would die young I didn't want to have a child to leave it through its childhood. Having a transplant I suppose that can change things slightly, you know you have a new life line, there's the option of surrogacy, you now have energy to look after a child, run around and play games but still I know my time on this earth is not a normal life span and chronic rejection could set in at any time, proved to me last year when I was diagnosed at approximately 2 years post my first transplant and declined rapidly. Yes I was so lucky to get my 2nd transplant but I still don't know how long this will last and therefor wouldn't be willing to risk having a child to become ill and leave my husband caring for me whilst I die and a baby. Don't get me wrong I have seen my friends post transplant have children and I'm so happy and proud of them it's was some calling deep within for them, there maternal instinct, for me I just don't have enough of that to have a baby with all those risks.

But still sometimes I think if I had a normal life, I would have a child. If I were normal I could wait till I was in my 30ies when I have lived my youth for me and followed my dreams of a successful career, one that I would be well into by now because I wouldn't have had all these other set backs in life. I could then have a child and devote the rest of my life to them.

So that is that, I am not that girl in a normal life and never will be, not that I don't love my life I really do. If by some mirical I get to lead a long life and live into my 50ies then I will look back and feel a pang of regret that I never got to have a child and now all options have forever been taken away. It's final. I have no choice I cannot change my mind and have a child.

The sadness I felt when the menopause was confirmed wasn't just for the child I would never have, there was a whole mix of emotions, suddenly I realise that part of my youth has gone and that's not just mentally, not like just a feeling, physically part of my youth has been taken away from me. My mother had a early menopause, but by early I mean 40ies hers by all accounts seemed quit simple, she complained and still does of hot flushes. So the thought of menopause didn't really frighten me, but then I started researching and realised a lot of my current problems seem to comedown to this. A huge sense of fatigue, that was contributed to by other health factors that are now sorted but the fatigue is still there, tho lessened slightly. It makes me feel so old. It makes me feel less feminine, I am now officially unable to do the thing that makes us women, have children.

Then there's the mood changes, I haven't really told many people but I guess now is as good as time as any. I am on anti depressants. I started them a few weeks ago due to depression and anxiety. There are things that have upset me which I don't want to go into and I guess with my hormones being out of whack it's lead me to feel paralysed inside, a sense of dragging and all momentum has gone. I'm fixated on a few things and really need to be free of them finally, events in my life as well as old demons I have carried around for years. My anxiety comes on suddenly for no reason, I'll just be sitting there and feel overwhelmed, trapped like I can't get out, I don't know what I'm trying to get out of, my own mind, my own body. It's a overwhelming horrid feeling that I can only remember feeling in itu with my first transplant and when I have been on extremely high doses of prednisalone which cause anxiety. The antidepressant are helping but I still lack the motivation I had before, I just feel stuck. Which makes me feel even sadder because I so want to be out enjoying every moment as I do love my life, just right now I feel I've almost forgot how to.

There are many other side affects or symptoms of menopause, which I am experiencing but don't really wish to talk about. It seems that some women sail through, I am not one of those.

I started this menopause at 23, the reason was radiation therapy. I'm starting HRT soon which should help with these symptoms although it may not help one of them. I don't think many people will get how I feel going through menopause, I'm sure a few will think great no periods. I guess I would have thought that before going through it to.

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Leaving next

So for a while iv been struggling on and off with fatigue, unfortunately more so lately then not. I'm still trying to keep up my gym routine but the last two weeks iv struggled more then ever. I struggle everyday I go to work. I feel faint and weak. It all came to a head when I had a cold after another cold work just got harder and harder and despite my store manager doing everything he could to help. There just seemed no way I could carry on my job and fulfil my role that I'm suppose to do and there seemed to be no other way the job could accommodate me any more then it had.

I have a chest infection currently and will most probably be starting Ivs if I'm no better by Monday.

So still trying to go on despite bad fatigue, which made me collapse on Thursday, I went off to work this morning and realised I just couldn't do it anymore. I have a lot of time off and never feel better, the anxiety of turning up to work, knowing it would make me feel awful. I just couldn't do it. So I sat down with my store manager and told him I'de like to hand in my notice. Not something I had done lightly. It had been on my mind for a long time and I just couldn't keep going.

I don't plan to sit around, I still want to work and earn my way in the world and I'm hoping I will be able to start teaching pole again soon, something I can do when I'm feeling up to it and I only have to teach an hour at a time then I can break and rest. I can organise my lessons around me. I can't sit around, it's just not me, but hopefully some time off will give me chance to get whatever's making me so tired sorted. The doctors think it's ebv. A virus that you can't get rid of but can be dampened down. I'm also not resigned to feeling like this forever and will get my energy back not matter what.

So my last day at work is next Saturday. I'm so grateful to my store manager and all he did to try to help. So I look forward to teaching I pole again and also I'm still working toward my public speaking and tv presenting career which is taking off with my first paid speaking job booked in!



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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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You can never say thank you enough

Video blog
Thank you x
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'We can't relist you'

So yesterday me, stu and my mum sat while my dr, nonnie told us that there was no way I was going to be put on the transplant list and that they were arranging palliative care. I had only a few weeks left to live. We were devastated, my mum and stu were in tears and I was just shocked. This was based on my reflux test still coming back positive. We rung loved ones in tears and watched as our world fell to pieces.

Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.

This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.


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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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Breathless and scared

The radiation has already taken its tole, I feel weak, tired, sick, my body is exhausted and all I can do is sleep, but part of me knows that exhaustion comes from the fact I'm now very ill again. This chronic rejection is so fast, everyday I wake up and feel noticeably worse, today just moving leaves me breathless. I haven't had the puff for a shower today, or to even get changed from my pjs. I'm scared. I try not to think about it, not to worry, sometimes it seems like it all happened to quickly that it hasn't sunk in yet, then I get these moments when just walking to the bathroom feels like a mile again and I know this radiation has to kick in and fast.

A friend of mine who was also diagnosed with chronic rejection but at the moment there lungs are unchanged told me about how they asked how long they had left, I didn't think to ask this, but now I sit here and I guess I didn't need to ask, if this radiation doesn't stabilise me, not very long. If it does well, I still can't imagine with my lung function so low that that would be very long either. I know it's sounds depressing and pessimistic. I'm not trying to scare anyone, but these are the thoughts your faces when everyday things are significantly worse then the day before.

Many people have asked me about re transplant, it's not something that has been discussed in length, more slight whispers and mentions. For me, all I can say at the moment on that one is I'm devastated. I don't want to give up these lungs, they were so perfect and beautiful, they worked so well and then my immune system destroyed them, my old lungs I hated and couldn't wait to give up. These I love, they have done so much for me and I feel emotional attachment to them In A sense. I guess that's all I can say on that one as I don't even really know if it's a option.

I will leave that post there for today and leave you all with my emotional turmoil.

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Flu, recovery and mini break

So sorry everyone for being a bit slack, my last post was after my bronch where I was told I had a fungal infection. It turned out i actually had flu! Which thinking back makes sense, chest pains, really struggling to walk anywhere or do anything on the Friday and my lung function was down 40%. So I was put on immuno globins, methyl pred, tammi flu, colomycin, tobramycin, posaconazole and put in isolation due to the methyl pred making me very immuno suppressed and also being on a transplant ward with the flu obviously I was highly contagious and risky.
The admission continued to be absolutely awful. The drugs gave me terrible side affects leaving me feeling awful. My joints became loose and would randomly pop out of place causing horrendous pain, my diabetes went from virtually none existent to making me feel physically sick due to high sugars that weren't controllable due to methyl pred. I felt bloated the whole time and ate loads. My skin seemed translucent and I felt just dreadful. The methyl pred made me feel like I was on edge and a group of people seemed like buzzing bees. Being in large crowed places when I had my face mask on was a no due to the sheer anxiety it brought. By the time it came to going home I was practically running out the door screaming even if my lungs weren't quite up to it yet. I'm pretty sure I had to check myself and make sure I didn't just start running.
I managed to escape last Tuesday which was a complete shambles. I was told I would be going home Monday to find out transport was not arranged, neither was any of the tests I needed before I left arranged. I spent Monday running around trying to sort it all and feeling extremely fragile. I did not go home Monday but I was moved to the family accommodation 'for my own benefit' in other words cutting costs and leaving me on my own with no one around when I was really not well enough because they wouldn't fork out a extra few quid for my mum to stay with me or to send me home that day. I can certainly say there was nothing about park wood that was for my benefit. So Tuesday I headed home on transport and proceeded to spend Wednesday and Thursday in my local having bloods done. My stomach stopped working and my kidney function was off but although I spent a length of time in the hospital I was glad to finally me home and back where I felt comfortable.
Friday finally I started to feel normal, my sugars were getting better my renal function picking up and the high dose steroid were coming down! Those things are toxic and possibly one of the worst drugs ever! I describe being on them as having a battery shoved where the sun doesn't shine and you spend the rest of the time having your body trying to vomit them out your mouth.
So feeling much better but due back in Harefield Monday me and stu took a mini break driving via the coast and then up to Harefield. Leisurely stopping where ever and having some us time. I cannot express how much I missed him so a little us time was needed. When I'm away from him I tend not to talk to him very much and when I do I make the conversations short. It's all part of my survival tactic. If I shut him out it doesn't hurt as much that I'm not with him. So we went to the cinema, bowling, shopping in various places and eating lots of food! (High dose steroids still affecting my appertiate).
So clinic Went well after over a week in Harefield and not seeing one consultant I actually saw the main man him self (never seen him in clinic before since having my tx) I panicked at first when I knew I was seeing him, I wondered if I had done something wrong or some results had come back but no I think it was just one of those occasions to catch up on how ide been since tx and that I was actually quite poorly when I left and the nurse who organises clinic realised I was struggling to stand due to being short of breath. Always a good reason to make sure everything's ok. But yes actually I was doing really well, the few days away had done me the world of good, my breathing is getting back to normal, I'm still not quit there but recovering quickly considering and all in all It was a good meeting to touch base on a few things and made some of the confidence come back I had perhaps lost in my health due to being so poorly this time.




Me and stu before clinic
So all in all I'm ready to get back to the gym and start kicking ass! I was gyming 5 days a week before this, pole training, aerial acrobatics training and yoga. I full expect to be back doing all of that over the space of two weeks and also to cut down the copious amounts I'm eating, which to be fair iv not gained any weight on the steroids but lost it, but I can't live eating this much!
So now I'm back home, teaching but I still have a week off from next which is great as it really gives me chance to get my strength back. So a bit of a long slog of a blog. I will update soon on my progress getting back into my hectic schedule!
P.s I did ask stu to prof read this but he protested saying he likes to read it when he's on the loo so sorry for any mistakes! Lol
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And so the ball just kept rolling

I know this is over a week late really but I'm here to update you all on how clinic at Harefield went on Monday last week.

Well it was a long old day to say the least, 6am knocking at my front door, tap tap, tap, I had forgotten to set the alarm. The first time ever I get hospital transport and I forget to actually get up. I ran down stairs in my dressing gown and told the driver I would be ready in 10 minutes, luckily I had indeed had a shower the night before got my clothes ready to put on and my food for the day packed. So running round getting dressed, I did my hair up in a slick donut Hun. Pristine and easy, make up in a bag, I would be putting make up on whilst in a moving vehicle! (I did not understand how hard this would in fact be!) and food thrown in so I wasn't quite 10 minutes but 15 isn't bad when you've just woke up!

So the journey was long, we went via Southampton for another pick up several hours later we arrived, I'm just glad the company in the car was good, otherwise it would have dragged!

I felt particularly nervous about this appointment, sometimes you can build things up in your head, bigger than they actually are. Possibly what iv done over this while fundoplication operation. But anyway my lung function has been a bit lets say squiffy and I had a heap of questions about this operation, in fact a huge sheet, not all for Harefield as there not the hospital doing the operation but they can certainly answer a lot of them. So I had bloods, lung function (which wasn't as bad as it had been(yay)), x-ray, then we lunch for a bit and go back, by this time tiredness was setting in and in the hot environment of the hospital I was falling asleep.

I was called in, a doctor I have never met before, although he assures me he knows me as he was at a talk I did on transplant and organ donation (humm I wonder whether he's another stalker(only joking)) we sit down and the first thing he asks is have I had it, had it, had what? Had a baby? Did I look pregnant? No the op, did I have the op, humm straight in there with that are we, interesting. So I fidget in my seat uncomfortably and tell him that I actually really don't want the op as the surgeon scared the living s*** out of me, I blurt out all my fears and uncontrollable thoughts and he steadily looks through all my information, with my one big question, do I really need it? Well he explained the risks, which I knew already, I wish doctor would ask that before explaining away, a simple, do you know the risk of not having the operation if you do indeed have reflux? I could say yes then 5 minutes wouldn't be wasted of me going yes I understand that. I sit and go through the reasons I'm worried about the op, such as open surgery being a big op, with huge recovery times, iv just got recovered from the last one, yes al be it slightly more major, I also said about affecting my career, well everything.

So the first thing we looked at was my previous reflux test, he said it was positive, this is 2 years ago I had this test, when I was having severe symptoms, before my transplant, in which time my reflux has vastly improved, iv had some dodgy bout after my stomach bug but actually on the whole it's lots better. So we decided I needed to have a retest, also I would need a ct scan to see if I have any signs of chronic rejection from any possible reflux, then a lung biopsy to also check for rejection. He conversed with my consultant and came back at which my consultant had said they were surprised about the possibility of open surgery as they hadn't realised my former bowel surgeries and agree that they should retest first as open surgery poses many more risks, including infection due to weakened diaphragm and intercostal muscles.

So I heard what I wanted to hear, if the tests come back and If i need it then fine. Ill be straight In that operating theatre. The tests are all to be carried out immediately so that if there is reflux we won't be delaying the operation to much and no further damage will be done, iv also been prescribed higher doses of meds for reflux in which will prevent it as much as possible.

As for my lung function they weren't all that worried.

So that was it, the big appointment I was nervous about, I had no reason to be.


I will be writing a blog on a few other catch up things but just to let you all know I will be on itv west country today (Tuesday) at around 6pm it will be available on the Internet and ill post it here. It's for itvs 'from the heart' campaign supporting organ donation. It's an amazing step in the right direction and I'm glad to be a part of it and I even got to introduce and sign off my own piece a small step toward TV presenting.

So I will leave you all now, hoping all my readers are happy and well and if not I wish it for the future x

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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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