tag:blogger.com,1999:blog-90059837567237653242024-03-17T00:21:56.565-07:00Anything But Ordinary...Since being struck down by a mystery interstitial lung disease in my early teens my life has been anything but ordinary, since then I've been on a quest of better health and life. Now age 21 I'm waiting for a double a lung transplant...Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.comBlogger99125tag:blogger.com,1999:blog-9005983756723765324.post-73232415053967550412011-11-03T08:45:00.000-07:002011-11-03T09:22:56.509-07:00Gone but never forgottenThis is Rachys mum, my beautiful daughter passed away at 20.45 on wednesday 26th october 2011, she was so brave as she knew time was running out, she had everything planned and worried about everyone else especially me other than herself, she was so brave and a selfless person. I know she helped a lot of you with lung disease and for that we are very proud parents. I just want to say a massive thanks to you all for all your support and kind messages. Also to the lovely Holly Shaw for being there for her and visiting her right upto the end, as i know it was hard for u at times to slowly see her dieing. ( A true friend), she loved the hand massages you used to give her. Also lovely Katie Mason (another true friend) for coming all the way from London to see her bessie i know it was difficult for you but we are very greatful as it made her so happy when she saw you in her last days. Both Holly and Katie dressed her room up to make it homely, she loved it. She was a true fighter and fought to the end, we will dearly miss her, she as left a massive hole in our hearts that will never be filled, she was my best friend and i was her rock as she would often tell me, we were inseparable. Love her so much. R.I.P. My beautiful angel. Xxxxxxxxxx<br />Her funeral takes place on friday 4th november at 1.15Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com14tag:blogger.com,1999:blog-9005983756723765324.post-57673349270098830642011-10-09T15:00:00.000-07:002011-10-09T15:01:23.368-07:00Thank you<div style="text-align: center;"><br />
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</div><div style="text-align: center;">Rachael Wakefield, a life lived surrounded by love, with my second chance of life time is now precious, I'd like to thank all and everyone for your continued support, love to you all xxx Rachy xxx<br />
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<span style="font-size: xx-small;">(Posted by Pete on behalf of Rachy)</span></div>Unknownnoreply@blogger.com29tag:blogger.com,1999:blog-9005983756723765324.post-30118642141714199132011-09-14T12:39:00.000-07:002011-09-14T12:50:15.685-07:00Hello everyone, Holly here again. Rachy has asked me to update you all on how she is doing.<br /><br />Rachy continues to be poorly but she is stable. She has decided to discontinue the bi-pap as it was too uncomfortable for her. Rachy is now on a pain patch to keep her pain under control and this seems to be working ok at the minute.<br /><br /><br />I visited Rachy tonight and after a nice hand massage (from yours truly) she looked at her facebook wall on my phone. She thanks you all for the lovely messages you have been sending her; they mean a lot to both her and her family.<br /><br />Will try and update again soon when I can,<br /><br />Love Holly xRachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com3tag:blogger.com,1999:blog-9005983756723765324.post-14978202889485197602011-08-28T11:32:00.000-07:002011-08-28T11:52:25.324-07:00Hi it's Holly here, I have been to visit Rachy tonight and she's kindly asked me to update you guys via her blog.
<br />She is poorly but stable at the minute - she is on Bi-Pap (non-invasive ventilator) 24hours a day. Doctors are currently working and focusing on pain management above everything else at the moment.
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<br />Although low in spirits she still had that beautiful smile on her face :) We even managed a little giggle about Rachy "passing wind". Due to the Bi-Pap pushing air into her lungs, some still manages to pass into her stomach, leaving her bloated and uncomfortable. Whilst I was there the nurse released the wind through a syringe (via her PEG), and we were giggling about her passing wind in a very lady like manner.
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<br />She appreciates all the messages, support and love that has been shown to her at this difficult time.
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<br />I will be sure to update you when I can, I am hoping to visit again on Wednesday evening.
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<br />Love you always Rachy.
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<br />Holly x
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<br />Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com8tag:blogger.com,1999:blog-9005983756723765324.post-20830615440929396912011-08-15T06:04:00.000-07:002011-08-15T11:40:04.193-07:00So here's a little update as much as I understand anyway. We we're struggling with pain control in my last blog. In my opinion we still are. I ended up having to go back into hospital for 10 days, where if I'm honest, apart from straightening a few things out, we weren't able to achieve very much. My needs were assessed which was helpful, I'm now suffering from bed sores which are healing well thanks to good nutrition, extra antibiotics, barrier cream and from being on the airflow mattress are healing well. But chest pain, investigation and relief of it is still an issue. I'm on slow release morphine and short acting morphine. What you want is to be on the lowest dose slow release morphine and need little or no short acting morphine. I'm still needing quite alot of short acting morphine so we're not quite there yet. I hate oramorph (short acting morphine) it makes me feel refluxy, sickly, drowsy and tired so I hate feeling like that so I hate having to take it. The side affects scare me, taking morphine scares me.
<br />I also take IV Paracetamol. Paracetamol works amazingly well IV with hardly any side affects I prefer to use it but alone unfortunately it's not enough to control my pain.
<br />At the moment my body and lungs just seem so unpredictable and it scares me. My own body scares me... I had another 'turn' on my first night at home, again I was doing nebulisers and it just felt like the 'space' in the room disappeared. I cried. Alot. I cried for me, I cried for mum, I cried for dad, I cried because I'm scared. And that's it, I'm scared. I'm scared the right people don't know I'm scared or even what I'm scared of. This is where I'm at now and this is the best things are going to get. That alone makes me want to cry. Mum is now carrying a bell system round her neck, that's how scared I am. Being alone scares me.
<br />I didn't want this blog to be a negative one and refuse to end it on a negative note. I'm home now and getting back into a good routine which when you have a treatment regime like mine has got to be a good thing!Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com10tag:blogger.com,1999:blog-9005983756723765324.post-85211969941168523312011-08-12T12:30:00.001-07:002011-08-12T12:46:39.858-07:00That's lifeSometimes I need this space to say things, to just say them, to who I don't care, I don't really care who's reading this blog and who gives a damn. It's my life and I'm going to live it the best way I know how because I can. And now at this moment in time I feel the need to say whats on my mind so I'm going to. I'm sick of the judgement and hate the mind games, if you think you can live my life any better than me then I'd love to see you try. The last few weeks have been tough to say the least. I can't wait for this month to be over and it's only mid month. I dunno I just don't feel like life is enough at the moment. Like life itself is not enough to keep me alive and that's a scary thought. Every day I wake up and I'm one day closer to dying. But isn't everybody? Of course they are! Because that's life and it's beautiful and magic and tragic and that's why I love it...
<br />Health update to follow sometime in the week
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<br />- Posted using BlogPress from my iPad
<br />Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com6tag:blogger.com,1999:blog-9005983756723765324.post-59343879867183657622011-07-24T12:49:00.001-07:002011-07-24T12:49:58.699-07:00Quick update<br />So I'm working on a longer, more indepth blog for on here but for now I thought I'd just post a little update. I've been out of hospital about 2wks now, good going for me. It hasn't been without it's troubles though. We're working on my pain management at the moment, I've been in alot of pain. I don't like talking about pain it's so exhausting and disabling. When I came out of hospital previously we would go on shopping trips to cheer me up. I can't even imagine doing that now. When your in pain everything takes that bit longer. Everything takes me that bit longer anyway because I'm out of breath! The pain has been creeping up on me slowly, I didn't think much of it, I was just having a bit of extra oramorph here and there so it's so devastating to have pain that we're now struggling to control. Except for the recovery period post transplant and even pre transplant I never had any trouble with pain. I'm reasurred by my hospice doctor and my mcmillan nurse though that I'm on teen tiny doses of everything, there's plenty of scope to go up on doseages and even a possibilty of admission to the hospice for symptom management to allow us to get this right. I'm not worried the pain has already started to improve so we know I'm on the right drugs it's just about getting the dose right. <br />I think I'm going to leave it there, keep your eyes peeled for a blog facelift!<br /><br />- Posted using BlogPress from my iPad<br />Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com5tag:blogger.com,1999:blog-9005983756723765324.post-17081266401075878702011-07-04T05:23:00.001-07:002011-07-04T05:23:19.716-07:00WeekendSo I guess you could say my blogs turn up like buses.<br />Anyway another weekend in Wakefield world of course it can't be straight forward.<br />As usual if I'd have gone with my gut instinct earlier in the week or should I say mum's gut instinct I might not be typing this now. All week I've said to mum "something is wrong, I can't pin point it, it's nothing in particular its just something!" My nausea doesn't just flare for no reason usually, but it's the first thing that does when something is wrong. Mum's offered to call the ward on more than one occasion and I've said no because it's nothing in particular. My nausea has been so bad tolerating even water has been difficult, I was cold yet my cheeks were flushed with no temperature, I was generally weak and exhausted. People were having conversations with me and my eyes were just closing from exhaustion. I've been naughty really because I have been pretty unwell but I was enjoying being at home so much and I was being closely monitored. We can't do our own bloods weren't to know anything was wrong.<br />Anyway my swelling in my ankles, both of them, has been bad, along with swelling in my knees and face, basically my weight was up and I was carrying alot of extra fluid. Mum phoned transplant outpatients to see if I could be seen in Tuesday morning clinic. The clinic was already over booked and it wasn't possible but my doctor wanted me to go to A&E and have a doppler scan. As soon as mum got off the phone and explained the situation I flipped. There wasn't a chance I was spending the day in A&E for a doppler to rule out a blood clot, on which part of my body I wasn't sure because I was swollen from fluid all over! I'm not saying for a second I know better than a doctor but I do know my own body and I knew I didn't have a blood clot. Nope, I had other plans that day, I went out and got my hair done and it did me the world of good :-)<br /><br /><center><a href='https://picasaweb.google.com/105739331374618260737/AnythingButOrdinary?authkey=Gv1sRgCJDNxICR4djq6gE#5625471706349250962'><img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-WMZyIfQWDwRTmaDBb2mHTfktEXZOekcHAjJ_uOU7NNyj8hLqlwV73ad4_v3qp1kUKRQ_co-T3dn1lNmxt8FFze88Vm5tPxxNiFSYuRHj9v06-CWQOxgbasc-F0kFlfzGo6_yNJo3xpw0/s288/0.jpg' border='0' width='168' height='281' style='margin:5px'></a></center><br />As mentioned in my previous blog I went to the hospice on Friday. On Saturday I was asked to go to the ward to have blood taken. So we slowly got me ready on Saturday and made our way to the ward, I had my bloods drawn from my port and we left again. On Saturday afternoon we got a call from the ward sister, she'd spoken to the on call doctor I needed to go back to the ward for an IV Magnesium infusion. Gutted, I instructed mum to grab a few things and we left after my district nurse had changed my Nozinan infusion. I knew the IV Magnesium infusion wouldn't just be two hours long, I knew I'd be staying in so we packed some Pjs too. Sure enough I stayed and that's where things are upto at the moment. I was very dehydrated on admission and I'm still on IV fluids now but my magnesium was corrected with the infusion and I'm hoping to get home today, provided my potassium (for those that are interested it dropped to 2.4, new record for me) has picked up also, Fingers crossed.<br /><br /><br />- Posted using BlogPress from my iPad<br /><p class='blogpress_location'>Location:<a href='http://maps.google.com/maps?q=Wythenshawe%20Hospital,%20Southmoor%20Road,%20Manchester%4053.386790%2C-2.313114&z=10'>Wythenshawe Hospital, Southmoor Road, Manchester</a></p>Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com2tag:blogger.com,1999:blog-9005983756723765324.post-61438366367129876372011-07-04T05:07:00.001-07:002011-07-04T05:07:25.401-07:00One of two and saying thankyou!Phew where to start? I can't believe its been a month since I last blogged! I was so relieved to get the last blog out of my system I was so sure I'd be doing it again soon but I guess things didn't work out that way. I've been home again now two weeks. A good time span for me! I think I've achieved what I wanted to in the last two weeks, national transplant week kicks off on Monday July 4th and I wanted to say thankyou. Thankyou to my brave donor family, my inspirational donor, hard working medical team, selfless parents, family and friends and of course to you, the public, I'll probably never meet you in 'real life' but without you I wouldn't be able to get through my transplant journey and everything life throws at me. So to the public I made this appearance on ITV Granada this week (<a target="_blank" href="http://www.itv.com/granada/pleading-for-donors21513/">Click here</a> to view it). Following that appearance I received these:<br /><br /><center><a href='https://picasaweb.google.com/105739331374618260737/AnythingButOrdinary?authkey=Gv1sRgCJDNxICR4djq6gE#5625467593091609362'><img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxEnw7G68akbEzVZgaIS09SIyOSYrIDr5Tqd-aunsUbF19pF7vibVwqMmaprkKXpU7-8dwBngj5cK938PF69oHwYrP5qp4PVZ8-WSX_3DDwwgZCXA5JjkceM-XNLkmT1ofRYEAADk8Nu6W/s288/0.jpg' border='0' width='281' height='168' style='margin:5px'></a></center><br /><br /><br /><br /><center><a href='https://picasaweb.google.com/105739331374618260737/AnythingButOrdinary?authkey=Gv1sRgCJDNxICR4djq6gE#5625467603580951298'><img src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrY2kX7AADD-eBxlNB8Iz6gksHAbrCgFdZY8xNx3Yh1B-MH2xC4L-rOLCu4ZCI86UIZQPKQ7fR0nLJs8S39B0273LQiOaz3ClvJaNIkf8AikiORMbCkLh0UufGzTdikxfxYKNApIciOVkT/s288/1.jpg' border='0' width='281' height='168' style='margin:5px'></a></center><br />The support and kindness of strangers really is overwhelming.<br /><br /><br />Health wise things have been tough especially during this past week. Last Friday (24th and notice its weekend again) I managed to drop my Nozinan pump on the floor in the bathroom and crack my syringe on the tiles. Gutted, I pulled the syringe off and called the district nurses. They were extremely busy and weren't able to get out to me for a further 5hrs. Since then my nausea has not been well controlled at all, I started IV Cylizine on Tuesday 28th which has at least helped me keep my tablets down which is the most important thing.<br />On Friday 1st my Nozinan pump was increased, I'm now on the maximum dose and thankfully it seems to have started to kick in. Last night and today I've had cravings for food which I haven't had all week so it looks like a start. This week I've been fully dependent on my peg, tube feeding just to keep me going. I also started with some pain this week, well I say this week, it's been slowly building up for a while and I just haven't done anything about it. But recently its become more troublesome to the point where once my sleeping tablet has worn off (around 4hrs) I can't sleep, even after oramorph. I mentioned it to my GP when I saw her at the start of the week and she decided MST (slow release morphine) would work best. And it has worked pretty well, the 'spikes' of pain I was getting are not as bad. The under lying level though I think may need some work as I'm still not sleeping.<br />On Wednesday (22nd) a nurse from the palliative care team came out to relieve mum for a few hours, I got scrabble all set up on the table and when she turned up I was just to exhausted to move. I slept on the sofa whilst she did sudoku, I felt so ignorant but I just couldn't keep my eyes open. On Thursday (23rd) clinic was long, my water tablets were upped again as my fluid retention has been terrible. Upping my water tablets has in turn dropped my potassium, another rant for another day (to follow in next blog!) My Mcmillan nurse dropped in for a visit after clinic. I like seeing P she's so proactive with management and treatment, if something can be done for a symptom she'll do it. She has confidence (along with experience) something alot of doctors when prescribing new medications for symptom control don't. She suggested increasing my Nozinan to the maximum dose to see me through this rough patch and increasing my oramorph, both of which we did and things have picked up.<br />On Friday after a long and complicated week I was desperate to get to the hospice and chill whilst having some reflexology. At the moment I have very dry skin at the base of my spine and not much 'padding' around my tail bone anymore, its about to break out into a sore. I just couldn't get comfortable on the reflexology couch so it took 3 staff to get me comfy in a chair in the dayroom. I love the hospice, they're so accommodating and nothing is ever too much work.<br />Saturday, well I'll talk about Saturday in my next blog.<br /><br /><br />- Posted using BlogPress from my iPad<br />Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com1tag:blogger.com,1999:blog-9005983756723765324.post-18617531048209273422011-05-30T00:06:00.000-07:002011-05-30T02:21:06.946-07:00Post transplant lifeIt is of course bank holiday weekend and so obviously I have too much time on my hands!<br />I wanted to talk about post transplant life and I guess the necessities of it.<br />I'm going to start by saying it is NOT easy. It's harder than I ever imagined it to be and I think than I was even prepared for. To be honest nothing, no book or leaflet could have ever prepared me for post transplant recovery and life. I've been asked if I'd like to give talks on my experience and recovery, I don't think I could, nothing I could ever say would prepare someone for the recovery I had. Having said that my recovery from the procedure was not exactly straight forward, everyone's experience is different. Alot of what the recovery depends on is physical, mental and nutritional well being at the time. Physically having muscle and energy is so important, at the time when I went into transplant I was dependent on a non-invasive ventilator, I was able to do very little exercise wise, though that didn't stop me trying to do yoga on the Wii! But my muscles generally were very deconditioned and my respiratory muscles were unable to support me and my breathing post transplant, as a result I needed an extended stay in the ICU whilst I recovered on the ventilator with a <a href="http://en.wikipedia.org/wiki/Tracheotomy">tracheostomy</a>.<br />Mentally I wasn't in a good place, facing imminent death at 22 does that to you. I was getting no extra help or support mental health wise and I think I'd have benefited from that.<br />Nutritionally I was able to eat very little and lost exactly half my body weight in the run up to transplant, food seemed to bloat me up and made it feel impossible to breathe. I was prescribed yucky milkshake meal replacements but they made no difference, I just had no interest in food itself or even trying to maintain good nutritional status, it just didn't rank high on my list of worries. Then trying to eat a full meal when it seemed so alien to me post transplant was hard, I was supported via tube feeds and still am today.<br />Anyway recovery is on going and the first year out of transplant is the most difficult. I wondered if I'd ever actually get stable and well again. Now things are more controlled, we have plans in place should things go wrong anyway, that's more than we had last year. Not only that but I now have confidence in myself, I know my post transplant body very well, I'm learning all the time what's normal and what isn't. Post transplant I explained (not easy with a trachy!) that my right lung didn't feel right, it felt 'heavy' my doctors were puzzled and did a bronchoscopy to see if there was anything there. My right airway had narrowed to the size of a pin head and I needed to go to theatre eventually to have it widened. Last year when my lung collapsed, I was in clinic once a week almost 'moaning' things weren't right yet my chest xrays were unchanged. Eventually I was given a CT scan and there it was, my right lung had collapsed, I ended up with a chest drain for 6wks and eventually the lung had to be 'glued' back up. I can predict a spike in my infection levels before its even visible on blood tests. Doctors actually ask me "Rachael is your CRP up?" and I can answer before the blood results are even in and I've not yet got it wrong.<br />Post transplant life generally revolves around three things, treatment, support and getting out and having the confidence to live it. Treatment I've already touched on recently, my treatment and drugs are increasing all the time. Before my transplant there was nothing I could do to help myself except for what I've mentioned above but I mean drug wise. There was nothing I could take to relieve or help my symptoms apart from what I call 'the dying drugs' like oramorph and diazepam which were there to make life easier rather than treat my rare lung illness. Now post transplant there seems to be a drug for everything, I guess it shows how much time and effort has been put into post transplant medicine which is improving all the time. Pre transplant nobody understood my lungs or lung disease so there was nothing they could do about it, we had to sit back and watch it slowly take my life. Now I have an extensive drug list and it requires a very strict routine to get it all taken and done on time. But it is something I can do for myself to keep myself well, I've never had to work so hard in my life to actually stay alive but it makes me feel like I'm in control of my situation. I could sit back and say "I'm not taking that or this, I don't see the point it doesn't make me well". But I don't, I choose not to. Myself and mum work extremely hard to maintain a good regime, I may not be 100% on time with every medication and every nebuliser but I don't ever miss a drug. And the s<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSEAKncbXmPpDcuEwq3wrn6k9oOz9mTNkPzD-6hwwMhpJ4z4GVy6mUgUb4ynRmP5FsHJLwUEM1JBqp30r4-9mpZ1JWqJMdYszFv-2R41qpj8ab7Kk8D7YinDl_aFfkG4954iWDvf7PExfa/s1600/244332_10150632153340273_613135272_18807328_1607948_o.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 192px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSEAKncbXmPpDcuEwq3wrn6k9oOz9mTNkPzD-6hwwMhpJ4z4GVy6mUgUb4ynRmP5FsHJLwUEM1JBqp30r4-9mpZ1JWqJMdYszFv-2R41qpj8ab7Kk8D7YinDl_aFfkG4954iWDvf7PExfa/s320/244332_10150632153340273_613135272_18807328_1607948_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5612436058569859314" border="0" /></a>upport I have from mum to unable me to do that is vital.<br />As is the support from my friends. Without them, well I guess life would just be boring? They're there for me and keep me going when things are tough. Some days when I really don't feel like smiling a flying visit from a friend is the pick up I need. I know my friends have their own lives and can't be here as often as they'd like but when I do see them it then makes the catch up even better! I got a visit from a close Internet friend recently, we met online some 4yrs ago and she's been a constant support to me since, right now and she's on a tour of the UK and she dropped in with her 'mom' to see me. I think my smile in this picture says it all :)<br />And finally the confidence to get out and live life. I have my limitations again, I'm on a stupid amount of oxygen and my breathlessness is at times worse than before my transplant. I have to plan my 'moves' carefully in my head like playing a boardgame. "Next move sofa to stairlift, rest, next move stairlift to bathroom". That really is how limited I am, I couldn't sit on the sofa and just get up and do something, say for example the doorbell rang, I'd need to swap my oxygen over to a higher % mask, take some deep breaths and then get up and pace myself to the door, I can't take more than 15 steps in one go, that I already know from advanced planning! Some days I have to dig so deep to find the trust and confidence in myself to even make my 'moves' but I find it, I have to because living in my bedroom 24hrs a day would ruin me mentally. I think that's all I have to say on post transplant life. Hope you enjoyed my rant!Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com2tag:blogger.com,1999:blog-9005983756723765324.post-54306088137693949102011-05-28T10:19:00.000-07:002011-05-28T11:04:16.928-07:00What a week! I'm going to start with at Tuesday May 17<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span>, the day wasn't really <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">significant</span> itself, that evening I received a message off friend we'd met through our transplants some 10<span class="blsp-spelling-error" id="SPELLING_ERROR_2">mths</span> ago now. She was 22 and we were in hospital together when she got her much needed heart transplant. She sent me a message saying she wasn't well and was at clinic the following day for a biopsy. We exchanged a few messages and I was shocked she hadn't gone to clinic or even A&E if she felt as unwell as she said she did. I suggested maybe she should and she said she wouldn't know where to start and she'd be <span class="blsp-spelling-error" id="SPELLING_ERROR_3">ok</span> to wait for clinic where they knew her. And so I wished her well and that was that. The following evening I left a message asking how her biopsy had gone and was planning to pop up and see her if she was in hospital, I had a feeling she would be as she really didn't sound too good. A couple of hours later I got a message off her sister she wasn't well enough for the biopsy, was taken <span class="blsp-spelling-error" id="SPELLING_ERROR_4">upto</span> the ICU and passed away suddenly just hours later. I was shocked to the core and burst into tears. What if I was the last person she spoke to? Should I have pushed her more into getting help sooner? A million and one questions now I could ask but I know I'll not get the answers to them. For now I'm not going to say anymore on this just may she rest in peace xxx<br />The following day was Thursday, Thursdays are of course clinic days. Clinic was not a nice place to be in that day, my friend's death the previous day had clearly left its mark and shaken up everyone involved. Anyway this particular Thursday I was double booked, clinic and <span class="blsp-spelling-error" id="SPELLING_ERROR_5">maxillofacial</span> (dentist, I have a nasty broken tooth, my normal dentist will not come anywhere near me!) So it was just crazy. I got checked in at 9am, got my bloods done and my port needle changed, then dashed off to <span class="blsp-spelling-error" id="SPELLING_ERROR_6">maxfax</span> and saw the dentist and tried to hurry them along so we could get back to transplant clinic in time to see my consultant before lunch. Mum then had to leave me in reception, I threw my tablets down whilst she went to pharmacy and to the ward to get IV supplies. By this time it was 1.30pm and we were just leaving. We stopped off to pick up some lunch and then left for home just in time for my IVs and the district nurses turning up to change my <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Nozinan</span> syringe. By the time my IVs had gone through I was shattered and it was around 4pm I had a nap and before I knew it it was 5.30pm, mum had nipped out to pick dad up from work. She leaves me for 15 minutes twice a day to fetch dad to and from work. After having such a mad clinic I realised I'd forgotten something, I hadn't had a chance to have any of my <span class="blsp-spelling-error" id="SPELLING_ERROR_8">nebulisers</span> all day. I do have a portable <span class="blsp-spelling-error" id="SPELLING_ERROR_9">nebuliser</span> but we left it in the car during clinic and I just didn't even think about it. I could feel my lungs getting tighter and tighter the space to breathe just felt smaller and smaller. I used to have wheezy type, <span class="blsp-spelling-error" id="SPELLING_ERROR_10">asthmay</span> attacks before my transplant, this didn't feel like that. It didn't feel like airway closure just restriction the only thing I could think to do was <span class="blsp-spelling-error" id="SPELLING_ERROR_11">nebulise</span>, I started setting up my <span class="blsp-spelling-error" id="SPELLING_ERROR_12">neb</span>, trying not to panic, of course nothing was to hand and I struggled to rip open the <span class="blsp-spelling-error" id="SPELLING_ERROR_13">nebulisers</span>. By this time I was gasping, I'm still learning and getting to know my post transplant lungs and just didn't know what to do. Thankfully the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">nebuliser</span> kicked in with a good affect within a few minutes I felt almost back to normal but whatever it was it was a very nasty episode and left me in tears and exhausted. I just went and flopped on my bed. Just... No words.<br />Next day (Friday) I had an appointment at the hospice for some reflexology, finally a treat and a chance to relax after the previous day I'd had it was just what I needed. I hadn't relaxed that much since well before my transplant, it was just amazing. Afterwards we decided to go out for lunch, I wasn't feeling 100% though, I was getting random shivers. By the time lunch came I just couldn't eat it I was forcing it down myself. I couldn't think straight, I had goosebumps from the shivers I was getting and just felt outside myself. We asked for a 'doggy bag' and paid the bill and left. When we got home mum phoned the transplant unit for advice, the doctors advised we went to A&E but did mention my consultant was on call in the morning and I could 'drop in' for the ward round if I wanted to see him. I hate going to A&E, transplant is such a specialised field, my case is already complicated as it is, I'd freak most A&E doctors out with my medication list alone. So I decided to have some <span class="blsp-spelling-error" id="SPELLING_ERROR_15">oramorph</span> and just sleep on it. I felt better after my nap and decided to wait to see my consultant in the morning. We arrived on the ward for 9am and had a chat with my consultant, he decided I needed extra antibiotics, my <span class="blsp-spelling-error" id="SPELLING_ERROR_16">heartrate</span> was high, my blood pressure was high, I was shivery and my lungs were crackling I just generally wasn't well. So I was shown to the 4 bedded bay and that's where I've spent the past week.<br />Generally its been a bit of a crappy week. I been through every possible emotion following my friend's death and its been hard to focus on just getting well but a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_17">reassuring</span> chat with the lovely <a href="http://transplanttantrumsandtiaras.blogspot.com/">Holly</a> has put my mind a rest and I know now I did my best and I couldn't have changed what happened. Health wise I'm going to be here sometime whilst the team figure out exactly whats going on and this blood pressure and heart rate trouble which seems pretty <span class="blsp-spelling-corrected" id="SPELLING_ERROR_18">persistent</span> and annoying now. They are as usual pulling out all the stops to get things sorted and I have to say I couldn't feel more safe. They are experts and don't miss a trick. For now I think I'll leave it there!Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com3tag:blogger.com,1999:blog-9005983756723765324.post-48509882982819162962011-05-17T03:26:00.000-07:002011-05-17T04:26:18.250-07:00boing...After a fairly productive and stable week (have a look at the LLTGL Ambassador's blog I wrote last week by <a href="http://lltglambassadors.blogspot.com/">clicking here</a>, my call in my own words) last week of course I couldn't have a straight forward weekend, they just aren't my thing anymore!<br />On Thursday morning I was woken at 6.30am with stabbing chest pain. I sat bolt upright and tried to work out what was going on. It felt like heartburn but far worse, I quickly reached down and turned off my PEG feed and text mum to come in and help me. I didn't know where to put myself, no position was easing it, I sent mum downstairs for Gaviscon incase it was 'just' heartburn whilst I started taking painkillers, oramorph and co-codamol. I was doubled over in tears by this point and we just didn't know what to do. I was so scared it was something heart related, my grandad has recently passed away from a heart attack, he thought he was having heart burn and left it 12hrs before getting help. After half an hour things had eased a bit, Thursdays are clinic days, my hospital are cardiac experts so I decided I wanted to wait it out until clinic at 9am. I really wasn't very well and don't quite know how I made the journey but I did. As soon as we got to reception we told them I was having chest pain and I was seen by a nurse and doctor straight away. They checked my obs, my heart rate and blood pressure were raised but that's normal for me right now. I also had an ECG which thankfully looked ok. I was told I was going to be admitted though so things could be monitored, I agreed, after how I felt earlier in the morning I was almost relieved! I was sent for a chest xray then sent straight upto the ward. I got onto the bed and just slept, I was so exhausted.<br />On Friday I was seen on the ward round and had a chat with my consultant, he said he felt it wasn't anything cardiac related despite my blood pressure and heart rate still being abnormally high and what I had experienced was an esophageal spasm from acid reflux from my PEG feed, basically heart burn had caused my esophagus to go into spasm. It's said to be a very painful condition and can be likened to that of a heart attack. He reviewed my reflux treatment, very important as I have a hiatus hernia too and also prescribed Gaviscon for after every meal and pre and post feed. I agreed seen as my blood pressure was still very high and they had been playing around with my cardiac medications to stay and be monitored for the day and go home Saturday. And that's exactly what I did! So I'm home again and looking forward to a slightly more organised week. On the subject of being organised, we saw my GP yesterday to sort through my medication. I'm going to leave you with a pic of what I take on a 'normal' day. Enjoy!<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib_hiCsPF_6xAuaDdwWLWBc1M2CwNne2W2YRq4ESrwWVInpeWSCtLpSwexb0mMfqYM_YK4_FFWi2hB11yvrhZGhV_Iphp-Vnd3I8KFIBw_mkkizND-9IuDG1ADMoMpbwCCC8goN1erFleV/s1600/IMAG0536-1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 184px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib_hiCsPF_6xAuaDdwWLWBc1M2CwNne2W2YRq4ESrwWVInpeWSCtLpSwexb0mMfqYM_YK4_FFWi2hB11yvrhZGhV_Iphp-Vnd3I8KFIBw_mkkizND-9IuDG1ADMoMpbwCCC8goN1erFleV/s320/IMAG0536-1.jpg" alt="" id="BLOGGER_PHOTO_ID_5607642625993964818" border="0" /></a>One days worth of medications, this doesn't include my IVs of which I have 7 (!) a day, my continuous Nozinan infusion and any other painkillers or antisickness medications I may need.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSOtKQktwXbu8zK5tb8JXn-nT4eKfHFkm8QnJVenn_1mu-pv3xNQfsnOY0x550dk2NdvqPsJr_B60HJRqurC8Sz0fUuiitIg9utkG1qY2ammwfrUJwFPMun-aWM74wWJ-N_59SQXSls_xn/s1600/IMAG0537-1-1-1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 266px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSOtKQktwXbu8zK5tb8JXn-nT4eKfHFkm8QnJVenn_1mu-pv3xNQfsnOY0x550dk2NdvqPsJr_B60HJRqurC8Sz0fUuiitIg9utkG1qY2ammwfrUJwFPMun-aWM74wWJ-N_59SQXSls_xn/s320/IMAG0537-1-1-1.jpg" alt="" id="BLOGGER_PHOTO_ID_5607643110580156754" border="0" /></a>Breakfast!<br /></div>Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com3tag:blogger.com,1999:blog-9005983756723765324.post-65077500723682304132011-05-06T13:38:00.000-07:002011-05-06T14:40:57.338-07:00Quick admissionThe Royal Wedding bank holiday weekend, a bright, sunny and beautiful event that got everyone in a good mood, shame the same couldn't be said for my little puffers. May 29<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> saw me struggling to move and after snoozing on the sofa all day I had mum call the ward for advice. They didn't really have any suggestions other than go in and get checked over because the previous day I'd had clinic and my IV antibiotics had been changed. So I agreed, I was fit for nothing at home anyway. I went in that night and had the usual checks, <span class="blsp-spelling-error" id="SPELLING_ERROR_1">xray</span> and bloods and after an extra shot of steroids managed to get some sleep.<br />For the last couple of weeks now in clinic, it was actually spotted in A&E when I went in with my port blockage it was noticed that my <span class="blsp-spelling-error" id="SPELLING_ERROR_2">heartrate</span> and <a href="http://en.wikipedia.org/wiki/Diastolic">diastolic</a> blood pressure we're raised. I had had a chat to my doctor about it in clinic and we decided to up my <a href="http://en.wikipedia.org/wiki/Diltiazem"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">diltiazem</span></a> (calcium channel blocker) a drug used to bring down blood pressure as I was only on a small dose. When I was admitted to the ward my heart rate was around 140<span class="blsp-spelling-error" id="SPELLING_ERROR_4">bpm</span> the typical healthy resting heart rate in a healthy adult is 60-80<span class="blsp-spelling-error" id="SPELLING_ERROR_5">bpm</span>. Now I'm not your average healthy adult but having a heart rate that high does not feel nice. And my diastolic blood pressure was also raised, all in all my heart was working hard. I saw the doctors properly on the Sunday and they were pretty concerned and eager to get on top of this and so they began to play around with my drugs. That Tuesday it was agreed that I did have some <a href="http://en.wikipedia.org/wiki/Pulmonary_hypertension">Pulmonary Hypertension</a> (PH) now, my heart is struggling under the pressure from my lungs. My heart has done so well to get me as far as it has and come through what it has, its unsurprising it's now struggling. I've been started on a couple of drugs, <a href="http://en.wikipedia.org/wiki/Ivabradine"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Ivabradine</span></a>, used to bring down heart rate and yes as you can see from the picture a small dose of Viagra also known as <a href="http://en.wikipedia.org/wiki/Sildenafil"><span class="blsp-spelling-error" id="SPELLING_ERROR_7">Sildenafil</span></a>.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL9e_4s8VWdTIy5Pd50YI5tcWSMA28P0s5p08vdsYNjTGqsvjzefL1CdS1aoB9rCy8riF13SE9GixP91s1i_WH4x3mHZ38VBYbDqG0W3M1hTTnSt0pmjp90FiqB5imRK2fdLGFR8-cC5gD/s1600/230343_10150601325385273_613135272_18493651_7774138_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 191px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL9e_4s8VWdTIy5Pd50YI5tcWSMA28P0s5p08vdsYNjTGqsvjzefL1CdS1aoB9rCy8riF13SE9GixP91s1i_WH4x3mHZ38VBYbDqG0W3M1hTTnSt0pmjp90FiqB5imRK2fdLGFR8-cC5gD/s320/230343_10150601325385273_613135272_18493651_7774138_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5603718729680773234" border="0" /></a>This drug works by relaxing the arteries thus reducing the work load for the right ventricle in the heart. It's going to be a case of fine tuning <span class="blsp-spelling-error" id="SPELLING_ERROR_8">drugs</span> now but PH is manageable and their are <span class="blsp-spelling-error" id="SPELLING_ERROR_9">alot</span> of treatment options available.<br />Anything but ordinary!Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com0tag:blogger.com,1999:blog-9005983756723765324.post-52015964323850871642011-04-21T08:13:00.000-07:002011-04-24T08:17:43.454-07:00long catch up! with pics!<div style="text-align: center;">Edit: So this post looks ok on Facebook but for those that didn't know every highlighted word has a link or picture attached to it :-)<br />So I'll start my catch up with lunch with <a href="http://transplanttantrumsandtiaras.blogspot.com/">Holly</a>. Every get together from holidays to lunch I think we have ever arranged has fallen through because I've not been well enough. Well on April 8<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> I was well enough and we met, <a href="http://img64.imageshack.us/i/imag0207ec.jpg/">mums</a> and all at <span class="blsp-spelling-error" id="SPELLING_ERROR_2">TGI</span> Friday's. A place I've been to before and knew Holly would love. We had a lovely lunch and the <a href="http://img132.imageshack.us/i/holsfood.jpg/">food</a> didn't disappoint :) I gave Holly a <a href="http://img852.imageshack.us/i/tmd.jpg/">little gift</a> I'd bought a while back on the late <a href="http://lltgl.org.uk/advocates/jessica_wales.php">Jessica Wales'</a> birthday. <span class="blsp-spelling-error" id="SPELLING_ERROR_3">TMD</span> had a significant meaning to Holly and Jessica, Holly has <span class="blsp-spelling-error" id="SPELLING_ERROR_4">TMD</span> tattooed on her <a href="http://img148.imageshack.us/i/holsfoot.jpg/">foot</a> and I think it was also played at Jess's funeral. How strange it was that I just happened to see the gift on Jessica's birthday, I knew I had to get it and knew instantly who to give it too, I almost felt like Jess was trying to tell me something!</div><div style="text-align: center;"><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzjw50LM6Px4R3FH-FFBvtQ_cjHBzf1Lkq_N8BGTBwHgpcz6A52ghXH6Paz5dxSdArMIHWDbCCMTpqheD5Dtd0_TE1wW6g99DjXnC61GjvssaQHoN9eR7PwrVKQuMW9El5c2BNnW3V4ZKr/s1600/holls.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 287px; height: 171px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzjw50LM6Px4R3FH-FFBvtQ_cjHBzf1Lkq_N8BGTBwHgpcz6A52ghXH6Paz5dxSdArMIHWDbCCMTpqheD5Dtd0_TE1wW6g99DjXnC61GjvssaQHoN9eR7PwrVKQuMW9El5c2BNnW3V4ZKr/s320/holls.jpg" alt="" id="BLOGGER_PHOTO_ID_5598067001990864114" border="0" /></a><span style="font-style: italic;">Myself and Holly at <span class="blsp-spelling-error" id="SPELLING_ERROR_5">TGI</span> Friday's</span><br />Next I was at the <a href="http://www.transplant-online.co.uk/index2.html"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Newstart</span></a> gathering. That was on April 10<span class="blsp-spelling-error" id="SPELLING_ERROR_7">th</span> it was the <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Newstart</span> 'Christmas' party, held on a warm sunny day at the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">marriott</span> hotel just beside the airport. It was so nice to be able to go, my first get together since being home with my fellow transplant patients that are now friends. We all sat around large tables and just chatted, there was around 150 people (patients and relatives) there and apart from myself a couple of people in wheelchairs and also another on oxygen you would just never know what some of us in the room had been through to get where we are today, to be alive and well. One guy on our table was 20yrs post heart transplant, just amazing! I got a picture with my <a href="http://tinyurl.com/3rv4y35">special man :)</a> and collected my transplant lapel, a small pin with the <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Newstart</span> logo in gold and silver awarded exclusively to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">recipients</span> with pride. I felt proud to be alive and a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">recipient</span> that day.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo9-IFlZHkYvlYNSt64v7RBZ2wewa4nHLftjZsIqwlnHvV92kgtCyPuaZEO2zzi7m3EfgfjZknOXWh7KNp2rVJaTxD1MT3IX0qI9WluAU49-h5LSs_xUOS4uNUKP1kyk0kf9F5bfPfBfNA/s1600/IMAG0250-1.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 111px; height: 186px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo9-IFlZHkYvlYNSt64v7RBZ2wewa4nHLftjZsIqwlnHvV92kgtCyPuaZEO2zzi7m3EfgfjZknOXWh7KNp2rVJaTxD1MT3IX0qI9WluAU49-h5LSs_xUOS4uNUKP1kyk0kf9F5bfPfBfNA/s320/IMAG0250-1.jpg" alt="" id="BLOGGER_PHOTO_ID_5598070371911708530" border="0" /></a><span style="font-style: italic;">My transplant lapel</span><br />On April 15<span class="blsp-spelling-error" id="SPELLING_ERROR_13">th</span> my brave and foolish (!) little (17yrs old) <a href="http://img839.imageshack.us/i/35473441802487315712797.jpg/">cousin</a> brought the newest addition to our family into the world. Bailey (how beautiful is that name?) was born after an overnight labour weighing 6lb 13oz. I'm very close to my cousins, I think because my mum is so close to her brothers and sisters and I'm an only child. So when we heard he had arrived I nagged mum to take me out so we could spoil him :) I sent a <a href="http://img545.imageshack.us/i/orderpreviewimagesashx.jpg/"><span class="blsp-spelling-error" id="SPELLING_ERROR_14">photocard</span></a> to my 36yr old auntie congratulating her on becoming a <span class="blsp-spelling-error" id="SPELLING_ERROR_15">nanna</span> and one to my <span class="blsp-spelling-error" id="SPELLING_ERROR_16">nanna</span> to congratulate her on becoming a great <span class="blsp-spelling-error" id="SPELLING_ERROR_17">nanna</span>. My auntie is the youngest in her line of brothers and sisters and so her becoming the youngest <span class="blsp-spelling-error" id="SPELLING_ERROR_18">nanna</span> is an oddity! But there you go 'anything but ordinary!'<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzyKT_jcwBjnhuz9LM28xtAO9RjVJlVcegF6gCdi7ed8xNvLQ5DCz1ZAK7lPDAJ7kutQkjhwF1-K4fAorR-4Y1g_NpSl8y9GEEGCEc1O9IVlhbab2kihVayZ2NSZqzrLvTnnx0ZlTuHsz7/s1600/205434_10150216017624747_597629746_8447427_6225458_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 284px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzyKT_jcwBjnhuz9LM28xtAO9RjVJlVcegF6gCdi7ed8xNvLQ5DCz1ZAK7lPDAJ7kutQkjhwF1-K4fAorR-4Y1g_NpSl8y9GEEGCEc1O9IVlhbab2kihVayZ2NSZqzrLvTnnx0ZlTuHsz7/s320/205434_10150216017624747_597629746_8447427_6225458_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5598082190690800370" border="0" /></a><span style="font-style: italic;">Bailey</span><br />It leaves me feeling somewhat out of place, I'm the eldest female of the next generation in the family and I feel like I should be the first or one of the first having the children, not my younger cousins. But then I guess that's just not the way my life has mapped out.<br />Obviously when Bailey was born the rest of the family were keen to meet him so one of my auntie's came over to stay, most of my family live in North Wales. She got to us late afternoon and we ordered in Chinese and we settled down in front of the TV to watch <span class="blsp-spelling-corrected" id="SPELLING_ERROR_19">Britain's</span> Got Talent, glass of wine in hand (not me though mind!) A couple of the neighbours came over, it was <a href="http://en.wikipedia.org/wiki/Manchester_derby">Manchester Derby Day</a> and so the drink was flowing nicely. Towards 11pm mum jumped up and said "<span class="blsp-spelling-error" id="SPELLING_ERROR_20">omg</span> your IVs!" She had premixed them and they were all ready to go I just needed <span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">attaching</span>. Mum put on her gloves and went to flush the line and it wouldn't flush... She tried and tried but it just wasn't going so instead we tried drawing back on it. Usually my <a href="http://en.wikipedia.org/wiki/Port_%28medical%29">port</a> has a good <span class="blsp-spelling-error" id="SPELLING_ERROR_22">backflow</span>, blood comes out of it very easily. Not that night, it wasn't budging, I got about 2<span class="blsp-spelling-error" id="SPELLING_ERROR_23">mls</span> of blood then just air. We phoned the ward and they advised us to go to A&E. They phoned the duty manager ahead due to the complexity of my case and advised us to go straight to triage when we got to A&E and a chest doctor would have a look at the port. I was reluctant to try flushing it again due to the air in the line but knew if there was blood in the port by the morning it would have clotted and so I'd have lost the port and would need a new one putting in. Everyone in the house par myself had had a drink! Awesome, any other night of the week (and most weekends) they'd all have been <span class="blsp-spelling-error" id="SPELLING_ERROR_24">sobber</span>! By this time I was tired and felt like I'd spoiled the evening for everyone, I started to get upset by the whole situation. My <span class="blsp-spelling-error" id="SPELLING_ERROR_25">heartrate</span> was already racing from my late evening <a href="http://en.wikipedia.org/wiki/Nebulizer"><span class="blsp-spelling-error" id="SPELLING_ERROR_26">nebulisers</span></a> and as it started to race more with me getting upset my hands and eyes started to feel a bit floppy. I've giggled at it before when I've read it on the back of an 'directions for use' label on the back of an <a href="http://epipen.co.uk/"><span class="blsp-spelling-error" id="SPELLING_ERROR_27">epipen</span></a> label but an 'impending feeling of doom' was one I've experienced before (I've had <span class="blsp-spelling-error" id="SPELLING_ERROR_28">anaphylaxis</span> before) was the best way to describe it and I barked at mum to get me an ambulance. By the time she'd got through to ambulance control and my auntie had <span class="blsp-spelling-corrected" id="SPELLING_ERROR_29">reassured</span> me and helped me concentrate on just breathing I was fine. I was <span class="blsp-spelling-error" id="SPELLING_ERROR_30">infact</span> about to slip into one big panic attack. <span class="blsp-spelling-error" id="SPELLING_ERROR_31">Pre</span> transplant I never had panic attacks, just recently I've had one big one and get feelings I manage to breathe through at least once a day since I got home. Something that could do with better control I think, anyway if not for my auntie at that moment I think I would've had one big panic attack. I love my family.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-xVUgpiy9HNEdO9FpwGc-GL0zTkBGbbLUTbYtW6ZRcMTQRg_2r1FCRxYJO3T-IEp_ljsyobCXYj4T2GjG61HgrZUlK1owodGlOfM9jDEJIfHWrRMbM4UKLk74YbqcI1UBdNuZYanLZvq_/s1600/IMAG0309.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 306px; height: 208px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-xVUgpiy9HNEdO9FpwGc-GL0zTkBGbbLUTbYtW6ZRcMTQRg_2r1FCRxYJO3T-IEp_ljsyobCXYj4T2GjG61HgrZUlK1owodGlOfM9jDEJIfHWrRMbM4UKLk74YbqcI1UBdNuZYanLZvq_/s320/IMAG0309.jpg" alt="" id="BLOGGER_PHOTO_ID_5598121686850379570" border="0" /></a><span style="font-style: italic;">Myself and auntie K</span><br />Anyway by the time a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_32">sober</span> family friend had been found to take me to A&E it was 11.45pm. To cut a very long story short the chest doctor managed to get hold of one of the night nurse practitioners (<span class="blsp-spelling-error" id="SPELLING_ERROR_33">NNP</span>) that knew me well and one flush with heparin, an anticoagulant was all it needed. The <span class="blsp-spelling-error" id="SPELLING_ERROR_34">NNP</span> gave me a vile of heparin to <a href="http://wiki.answers.com/Q/What_is_a_hep-lock">hep-lock</a> the port overnight. I got home at 3am, tired, stressed and emotional. What a night.<br />On the health front I had clinic today. I've just felt generally run down breathing wise since getting home, OK in myself just not as good as I was in hospital. I raised the question recently over my <span class="blsp-spelling-error" id="SPELLING_ERROR_35">antifungal</span> treatment. Out of three bugs I've grown since transplant two of those we're fungus. My <span class="blsp-spelling-error" id="SPELLING_ERROR_36">antifungal</span> treatment was until I left hospital <a href="http://en.wikipedia.org/wiki/Caspofungin"><span class="blsp-spelling-error" id="SPELLING_ERROR_37">Caspofungin</span> IV</a> because I grew a simple <a href="http://en.wikipedia.org/wiki/Candida_%28fungus%29">Candida</a> in my lungs whilst in hospital. I'm unable to tolerate the other commonly used <span class="blsp-spelling-error" id="SPELLING_ERROR_38">conazole</span> drugs (<a href="http://en.wikipedia.org/wiki/Itraconazole"><span class="blsp-spelling-error" id="SPELLING_ERROR_39">Itraconazole</span></a> and <a href="http://en.wikipedia.org/wiki/Voriconazole"><span class="blsp-spelling-error" id="SPELLING_ERROR_40">Voriconazole</span></a>) due to the side affects so when I went home my <span class="blsp-spelling-error" id="SPELLING_ERROR_41">antifungal</span> cover stopped. But there is another drug on the market now that's becoming more commonly used, <a href="http://en.wikipedia.org/wiki/Posaconazole"><span class="blsp-spelling-error" id="SPELLING_ERROR_42">Posaconazole</span></a>. It's said to be well tolerated and is easier on the body than the other conazoles. Today my consultant decided going on that would be a good <span class="blsp-spelling-corrected" id="SPELLING_ERROR_43">option</span>, he sent an email to, I'm going to call him the 'bug man' because off the top of my head I can't think of his actual title! But he's the guy that has to give the <span class="blsp-spelling-error" id="SPELLING_ERROR_44">ok</span> to start this drug, in the mean time and since I've been feeling a bit off he restarted my <span class="blsp-spelling-error" id="SPELLING_ERROR_45">Caspofungin</span> IV to see me through to the cross over to <span class="blsp-spelling-error" id="SPELLING_ERROR_46">Posaconazole</span>.<br />Well I hope your still with me after that long and varied catch up! I'll leave you with a snap of me enjoying the late afternoon sun in the garden the other day.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiRp6FuwCFNOZ_FCXhmiNvVdFN6a7CK9zqQ2JASSBsMoT_tdOgRsvqqp1WrYpoNGjEjJe7GGo0C4j5xzeZUPZ4cEnyTnDAix9wL9Rl5N8UU5yoLws4tMV1Y1IzYoLS8_C__73O5U51v7zM/s1600/215715_10150576622585273_613135272_18187287_4743529_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 191px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiRp6FuwCFNOZ_FCXhmiNvVdFN6a7CK9zqQ2JASSBsMoT_tdOgRsvqqp1WrYpoNGjEjJe7GGo0C4j5xzeZUPZ4cEnyTnDAix9wL9Rl5N8UU5yoLws4tMV1Y1IzYoLS8_C__73O5U51v7zM/s320/215715_10150576622585273_613135272_18187287_4743529_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5598150722632073314" border="0" /></a><br /></div></div>Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com2tag:blogger.com,1999:blog-9005983756723765324.post-90391878325727986182011-04-08T13:06:00.001-07:002011-04-21T15:12:11.529-07:00:-)Doesn't everything seem so much easier when the sun's out and its warm? This temperature, around 12'c-15'c suits me perfectly at the moment, not too hot and not too cold.<br />My life really is a full time job of planning at the moment. Everywhere we want to go takes a day to plan in advance. I made it out to the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Trafford</span> Centre for I think a well earned shopping trip the other day. I have inherited a mobility scooter from my grandad who passed away recently and I have to say it's a gem. I despised them <span class="blsp-spelling-error" id="SPELLING_ERROR_1">pre</span> transplant and refused to use one, I have no idea why, I just didn't like the stigma <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">attached</span> to them. They seemed to make me feel 'more disabled' yet I was happy to sit in my wheelchair? The mind boggles!<br />We planned and measured the night before and managed to get a large 2ft oxygen cylinder (weighing 15kg!) sat between my legs and my liquid oxygen cylinders on the arms of the scooter which gave us more than enough time. I had teething trouble with the accelerator getting caught on the cylinder (scary moment) and managed to take out a rack of scarves in Accessorize (<span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">embarrassing</span> moment) but had a great day. We also had lunch out, something that a few months ago would have been a challenge for me. I still require highflow oxygen so eating is still a challenge but I've managed to solve this myself by purchasing a <a href="http://www.intermedicaldirect.com/products/Oxygen+Mobility+%26+Consumables/Nasal+Cannulas+%26+Masks/Bi-Flow+Nasal+Mask/1614133355">Biflow mask</a>. (I must buy more of them now because otherwise I won't be able to eat!) But my nausea since the transplant has been the main problem, I'm PEG tube fed (or at least topped up) because at one point it was so bad I was <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">retching</span> up <span class="blsp-spelling-error" id="SPELLING_ERROR_5">NG</span> tubes and kept very little diet wise down. Since going on a <a href="http://www.medicines.org.uk/emc/medicine/6602/SPC/Nozinan+injection/">subcutaneous <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Nozinan</span></a> infusion it feels like a switch has been flicked, I feel 'normal' after eating and the thought of going out to eat doesn't scare me. The difference has been amazing and as long as the pump doesn't leak I'm rarely sick now.<br />I feel so much more positive being at home and although at times it is far from easy, I can say the lungs are damaged and my god there are moments I can tell (by that I mean at times the symptoms are very noticeable!) it's worth the hard work just to be around the people I should be and be in the place I should be in.<br />I saw the team (or one of the doctors anyway) on the ward on Monday for a review. At the weekend I contacted the ward after 'not feeling right' on Friday night. I couldn't say exactly, just I was panting more and my heartrate was raised. I feared my <a href="http://en.wikipedia.org/wiki/C-reactive_protein">CRP</a> (marker for infection) had risen again and I wanted bloods doing to be safe. After some persuasion it was agreed I could go to the ward and have bloods done from my port. Come Monday we had the results, of course I was right, my CRP had risen only slightly but enough to warrant an IV change. So now I'm on IV <a href="http://en.wikipedia.org/wiki/Piperacillin">Tazocin</a> and feel better already for the swap.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-9005983756723765324.post-42698192714992378712011-03-28T11:33:00.000-07:002011-03-28T13:29:27.180-07:00I made it home. Gosh that feels good to say. There was a point where I saw myself never leaving my hospital room again. I sit here and wonder how we've managed it, I say we because the transplant team, nurses, physios, everyone played their part in getting me home. It's taken hard work, perseverance and pestering. I think it's fitting (especially with Mothering Sunday round the corner) I mention someone else that's HAD to play their part. Since transplant it has been a learning curve for my mum, pre transplant I wasn't on feeds, I didn't have a PEG or a port and towards the last 12mths before my transplant I wasn't in hospital (because there was nothing they could do but I did spend time in the hospice). Since coming home I'm on 6 IVs (steroids and an antibiotic called Meropenum), 12 nebulisers, 60 tablets a day plus oramorph, PEG feeds and fluids and a subcut <a href="http://en.wikipedia.org/wiki/Levomepromazine">Nozinan</a> infusion (as antisickness not for psychosis!), the latter is the only thing that's looked after by district nurses. My mum is in two full time jobs, one as a carer everything from getting me dressed in a morning to washing my hair at night and the other as a nurse preparing IVs, sorting through my 40+ medications and ensuring I'm getting enough oxygen. I mean it when I say I don't know how she does it or where at times she finds the energy. If it wasn't for her I'd either still be in hospital now or I'd be in some form of care home somewhere. It deeply upsets me when her friend's say "can you just do this? I know you have alot of time on your hands!" My mum is my rock and I think it's fair to say I wouldn't be where I am now without her.<br /><br />O<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho9cePfChd4QvHlP4k7W02SXRbrbwz1Rb9mI2MjqL4C2r0bUJvT2uLJm3trzeqljkD64U1b_wJ5SxXEn4vOsutjTFBrQXG93k4sLDZQE2ITAAjPOlr-f4eNouV7zQMcDHfYUel2Sct2GwF/s1600/IMAG0113.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 192px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho9cePfChd4QvHlP4k7W02SXRbrbwz1Rb9mI2MjqL4C2r0bUJvT2uLJm3trzeqljkD64U1b_wJ5SxXEn4vOsutjTFBrQXG93k4sLDZQE2ITAAjPOlr-f4eNouV7zQMcDHfYUel2Sct2GwF/s320/IMAG0113.jpg" alt="" id="BLOGGER_PHOTO_ID_5589223744444200834" border="0" /></a>n March 11th I celebrated my 1yr Transplant anniversary. On the 10th I lit a flameless candle for the donor and her family on, a year ago a day that would have been one of the saddest days of their lives and I left it on for 24hrs. On the 11th I celebrated. I celebrated the fact that without my donor I wouldn't be here now, love, giving and new life. I had mum get me green helium balloons and we wrote messages on them, I ventured out of my room with mum, my nurse and physio to release them in her memory. We put annivesary banners and balloons up in my room and we celebrated and gave thanks. My physio took the snap, it would have been a good one if my eyes weren't shut!<br />Maybe I'll blog again in a few days when I'm settled in at home a bit but I think that's all I have to say for now :)Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com5tag:blogger.com,1999:blog-9005983756723765324.post-31304223665094906042011-02-20T04:10:00.001-08:002011-04-08T13:13:40.705-07:00It's been a while...<div>I wanted to wait to post on here so I could share how I spent Christmas at home and various bits and pieces in the media to thank my donor and her family that I was here to celebrate Christmas. I managed to spend Christmas at home with my parents and we had a good day. And you don't know how lucky I feel to be able to type that sentence... In another household somewhere in the northwest a family was experiencing a different Christmas, their first without their daughter. A reality that my parents were facing so we made sure it was special and lit a candle for her. <br />
From boxing day, on what seemed to be like a downward slope I started to become unwell. By the time I started spiking temperatures (which I thought were just a result of having the flu jab) on New years eve I was tired, not eating or drinking anything, being so sick I couldn't tolerate my peg feed even being carried upstairs was to much. I spent most of my time asleep as that was my only escape from the breathlessness I was feeling. My "I can't do this anymore" moment came on bankholiday Monday I was readmitted to the ward and they found, thankfully, there was some infection in the lungs. I say thankfully because something can be done about infection, its treatable. My infection levels came down very quickly and antibiotics were stopped after just over a week. Skip forward a while and its looking like my lungs have developed some sort dependency on IVs, I start IVs, feel better and infection levels come down, I get back on my feet, IVs are stopped, I feel rough again and have to restart IVs. I'm also having trouble coming off IV steroids, I come off them, I'm okay for a few days then I just can't catch my breath have a dose IV and I'm okay for another few days. It's crazy and so frustrating. At the moment we're working on my oxygen, I've become dependent on highflow (why do I feel like I'm in here picking up bad habbits?!) at the moment I just can't get my breathing right and feel comfortable for long peroids of time on anything less than 50litres. That is a big problem. They are able to deliver 30ish litres maximum in the community and that is at a push with 4 highflow oxygen concentrators hooked together. I don't know what's going to happen yet or what I'm going to do but I'll keep you posted. <br />
Posted from Blogpress for HTC Android</div>Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com2tag:blogger.com,1999:blog-9005983756723765324.post-73818995722275140942010-12-19T14:42:00.000-08:002010-12-19T15:54:12.737-08:00Well I haven't blogged because I haven't really known what to say these past few weeks. I got home again thankfully, my mum and I have been trained to give my IVs at home and now we have a large dripstand and infusion pump sitting in our utility room. That's going fine, the strength of the drug and the fact my <a href="http://en.wikipedia.org/wiki/Tacrolimus">Tacrolimus (FK)</a> has now been upped now I'm off <a href="http://en.wikipedia.org/wiki/Itraconazole">Itraconazole</a> (Itra interacts with FK and bumps the levels up so you don't need as much) has taken it's toll on my kidneys and last week my kidney function hit a low with my <a href="http://en.wikipedia.org/wiki/Creatinine">Creatinine</a> spiking well over 200 (normal is 50-100 I think! My normal is about 70 anyway). We spent most of last week in clinic whilst the team played around with my FK, dropped my <a href="http://www.ambisome.com/index2.php?section=about&page=intro">Ambisome</a> to 3 days a week and kept me behind for IV fluids. Since being dropped on my Ambisome my cough has become a bit more 'junky' and my weight is down. Related or not I don't know but I hope not, I could do without further complications this side of Christmas. I saw my doctor on my own on Thursday, we haven't always had a great relationship but we get on well now and I can open up more to him more now than I've ever been able to. I don't know what he must think of me at the moment though because the last two times I've seen him its ended in tears. I cried about the fact my dad has to carry me up the stairs now and the fact I can't even stand up to brush my teeth in a morning. Of course there's not much that can be done about any of that now but he did prescribe a small amount of morphine to take the edge off the breathlessness. I was on morphine for just over 12mths before my transplant, if I'm honest it shocked me a bit, I know morphine is given as a bit of a last ditch attempt to make things just that little bit easier when nothing else really can. I am grateful to be back on it because things are bad now and I appreciate anything that would make things easier but I didn't expect to be back on morphine, not so soon anyway. It upset me a bit as I think it was a bit of a final confirmation for me that things haven't really gone to plan.<br />I'm looking forward to Christmas, one I certainly wouldn't have seen this year if not for my special gift.Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com10tag:blogger.com,1999:blog-9005983756723765324.post-19099343834817025622010-11-23T11:42:00.000-08:002010-11-23T14:10:43.541-08:00There's always hope...Wow when people tell you transplant is a rollercoaster, they really aren't lying. The last 2wks have been a crazy ride of emotions. Today in particular.<br />In my last blog I talked about clinic and going back a few days later to see if the increased doses of the anti-rejections had made any difference. I did go back to clinic a few days later in a similar state, probably slightly worse off. It was decided there and then I needed a <a href="http://en.wikipedia.org/wiki/Bronchoscopy">bronchoscopy</a> to see what was going on. Seen as I was out of breath, on my doctor's request I agreed to have the bronch without any sedation (yes I'm crazy like that). He was hoping, as we all were, the problem would be something immediately obvious and fixable. Not long after my transplant my <a href="http://en.wikipedia.org/wiki/Surgical_anastomosis">Anastomosis</a> (complicated medical word for where the donor lung is joined to recipient tissue, in this case airway) in my right lung had narrowed. I had it surgically stretched and it made me feel better almost instantly. But this time it wasn't the case, the Anastomosis looked almost unchanged and I had a strong feeling that was the case anyway, something felt different. The only thing the bronch really showed was some sticky 'jelly like' mucus in the bases of both lungs. Not really a nasty, dirty colour like you'd see in infection but it was just there and didn't really seem like it was supposed to be. So the samples were sent off and the only thing we could really do was cross our fingers (as strange as that sounds) that something grew from it because if nothing did there was nothing more to be done.<br />Two days later following a temperature, a very unhappy tummy and a junky cough my mum called the ward and I was readmitted. At first it didn't seem obvious, even to me what exactly was wrong, I just didn't feel 'right'. The team looked into every possible test whilst keeping me comfortable and hydrated, they were still waiting for the cultures from the bronch. Then after the weekend the results came back, they had found a fungus in my lungs called <a href="http://www.aspergillus.org.uk/">Aspergillus</a>. I had heard of Aspergillus, it was something I was tested for regularly with my old lungs because of my symptoms but I'd never grown it. I've been on treatment for it (<a href="http://www.jstor.org/pss/4462918">Amphotericin nebulisers</a>, <a href="http://www.medicinenet.com/itraconazole-oral/article.htm">Itraconazole</a> and <a href="http://en.wikipedia.org/wiki/Voriconazole">Voriconazole (Vfend)</a> prophylactically, since my transplant to avoid catching it but Aspergillus like most bugs is changing all the time, becoming clever and immune to certain drugs and it seems that's maybe what's happened. Given how breathless I was, how I'd already been on treatment and how I wasn't able to tolerate Vfend which would have been a good opition to switch back to it was decided I was to start on <a href="http://fdb.rxlist.com/drugs/drug-6421-AmBisome+IV.aspx?drugid=6421&drugname=AmBisome+IV">IV AmBisome</a> (basically the same as Amphotericin but alot kinder to the kidneys, something very important post transplant as the kidneys get a battering from all the drugs). AmBisome is a good drug but it will take it's time to work and I'll be on it IV for a minimum of 6 weeks, thank god I got my <a href="http://en.wikipedia.org/wiki/Port_%28medical%29">port-a-cath</a> when I did. It's not so much having a fungal infection in the lungs that's the biggest issue, my CRP (marker for active infection) is less than 1 the Aspergillus acts as more of an irritant making the lungs inflammed and generally a bit unhappy. (see <a href="http://www.aspergillus.org.uk/newpatients/ABPA.php">ABPA</a> for more info).<br />The big question now is obviously will I get loads better? Now this has been found and I've started treatment? My team are an excellent team and they're doing everything they possibly can and I believe that. They're good though at times at painting a rosy picture, telling patients what they want to hear to keep them positive and happy they do this because in transplant a positive attitude is at times half the battle. I like to know what I'm facing so I can work out how best to deal with it, the team have learned now that's how I am and they have been very straight, and, well, a bit blunt. In a nutshell they're 'reasonably' confident they can improve me overall by 5-10% with the AmBisome and fingers crossed getting rid of the Aspergillus. Back to my pre-admission self. But will not give me false hope and say I'm going to get much better than that and cannot say what the future will hold. They aren't confident I will come off oxygen again (at the moment I'm on 8-10LPM) and I may still find moving around just as difficult as it was. And I think I need to believe that, I cannot afford to set myself up for anymore disappointment, I know doctors have been wrong in the past and hell at times I've gone out of my way to prove them wrong but I'm going to believe what I'm being told, any improvement beyond what is expected will be a bonus. The thing that sprang to my mind was was it worth it? Possibly months of IVs for a 5-10% improvement? IVs are alot of work, in hospital they just get made up in pharmacy and administered, at home the chances are that won't happen (mainly because of the nature of the drug) and we will have to mix them at home. On top of that everything has to be sterile because the port line and drug are being given directly into my bloodstream (ports can be a major source of infection) and we will have to be trained on an IV pump because the AmBisome has to be given over 2hrs to avoid any reactions. But I did not battle to get these lungs and come this far with them to settle for anything other than the best I can be.<br />ANY improvement will be worth it and so I will do the IVs.<br />My doctor's words will stay with me "Your one tough cookie, you've proved us wrong in the past and I wish we were having a more optimistic conversation but there's always hope..."<br />Indeed there is.Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com2tag:blogger.com,1999:blog-9005983756723765324.post-15033634590138465842010-11-05T04:11:00.000-07:002010-11-05T04:42:37.368-07:00Yesterday I had a monester of a clinic appointment. My first proper one since being home. Post transplant it is so important to keep up with appointments to monitor things. At the moment I'm at clinic twice a week for one reason or another. The appointments can be hard on me, I was there over 6hrs yesterday, I left feeling drained physically and mentally. My lungs have not been so good over the past few days, they have been slightly wheezy when I've over exerted and that really hasn't taken much. I seem to be running out of breath more than I was, at the moment I'm not even able to stand up for long periods of time. It is so disappointing and so scary. I saw my consultant and after catching my breath explained how my first week at home had gone. He confirmed my lungs were slightly wheezy and took the decision to up my <a href="http://en.wikipedia.org/wiki/Prednisolone">Prednisolone</a> and <a href="http://en.wikipedia.org/wiki/Azathioprine">Azathioprine</a> in the hope some of the inflammation can be knocked on the head. I left feeling deflated, worried and scared. I've only felt scared a couple of times since the transplant but at the moment I can't seem to shake the fear and it's just leaving me feeling miserable. I want so badly for things to go right. The transplant team are doing everything they can and I can't sing their praises enough. I've never had so much support from a medical team. I go back to clinic again in a few days to see if the increased doses have helped.<br />Fingers crossed...Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com5tag:blogger.com,1999:blog-9005983756723765324.post-67762033174268410282010-10-30T06:17:00.000-07:002010-10-30T08:07:01.199-07:00Life is what you make itI came home (properly) on Wednesday. So much has happened over the past 2mths, some of it somewhat unbelievable. Since being home I haven't really done so much, adjusting to life with a <a href="http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy">PEG tube</a> is taking time. There's alot of maintenance at the moment because it's still new but I'm already feeling the benefits of improved nutrition. It's funny, you don't realise how much your lacking in the essential things, like that, until they're given back to you. I hadn't realised just how bad poor nutrition was making me feel.<br />Yesterday I went to the funeral of another lung transplant patient. He died suddenly on the ward last week, it was somewhat unexpected. He was transplanted around the sametime as me and lived not too far away. The funeral was of course upsetting, for me personally it got me thinking about transplant, life, death and everything inbetween.<br />A comment recently got me thinking too. Someone said <span style="font-style: italic;">"you must be proud of how far you've come".</span> Am I? Not really, what do I have to be proud about? I've just doing the best I can with what I have which is what anyone would do, the fact is I have a whole lot more now to make the best of. I'm not proud, I'm just doing or have done what anyone else in my situation would have because really what options do I have? Realistically I can't stamp my foot and pout my lips and say 'no I'm not having that bronchoscopy and I won't take that medication'. The transplant was do or die for me. It isn't that way for everyone, some people have a choice on if transplant is right for them, for me, in my mind there was no other option, the alternative to transplant, well to me there wasn't one. I was not ready to die, I was determined I wasn't going to die of my lung disease and I was too stubborn to sit back and let it kill me. Maybe it's my stubborn streak that at times keeps me going, I don't know but I do know what are sometimes considered negative aspects of people's personalities have helped me along the way and kept me grounded and realistic. I don't have unrealistic expectations of transplant. I never wanted to run marathons or jump out of planes, don't get me wrong the lung function to be able to do that would be nice but I didn't have a transplant to become an athlete or an adrenaline junky. I had one to save my life and that's just what it's done :-)Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com6tag:blogger.com,1999:blog-9005983756723765324.post-67708377659387072452010-10-09T13:30:00.001-07:002010-10-30T07:52:12.290-07:00are you ok?I've had so many people ask recently how I'm doing and besides "ok I got a port put in today and I'm to have a peg soon" I haven't really been able to explain how I'm actually doing. I guess the best part of all of what I'm about to say is I'm doing better than I was 5wks ago. Before I went into hospital I didn't even have the breath to stand up at the sink for long enough to brush my teeth and wash my face, the day I got admitted mum had to put a stool in front of the sink for me. I was bad, I just hadn't realised how bad. <br />Now I'm going to try and explain what's going on, as best I can anyway. A few weeks ago I had a lung biopsy to confirm if it was rejection, I didn't think it could be anything else but the biopsy was negative, NO rejection. The biopsy (and CT scans) showed inflammation and scarring or fibrosis. Basically something has injured my lungs (we aren't 100% sure what and we may never know now) and it caused inflammation which in turn caused permanent scarring. This isn't going to go away, nothing can be done for fibrosis. The hope is now that whatever caused the injury was acute and it isn't something that is going to continue injuring the lungs. The problem I'm left with is my lungs are once again scarred, they're never going to be normal, scarring doesn't go away. All I can do is build up my exercise tolerance as much as possible to maximise what I can do with them. I'm still on oxygen, I don't know when or if I'll come off it.<br />I guess what I'm focusing on through all this is this isn't ideal, far from it but it's better than the situation I was in pre transplant. I feel better than I did pre transplant, I have my days but everyone does, my life has already been extended as far as I'm concerned it's already been proved that transplant was the right decision. I don't know what my life is going to be like from here on out but I don't really care because I'm alive and that's all that really matters...Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com5tag:blogger.com,1999:blog-9005983756723765324.post-53234141577987009702010-09-27T12:18:00.000-07:002010-10-30T07:55:06.391-07:00RantI'm feeling the need to rant, not a negative rant though. Last night one of the nurses that's looked after me quite alot over the last 6mths, asked, well said "I bet you must have regretted having a transplant at some point?" This is a subject I feel so strongly about. I have had my fair share of problems lately some completely new issues that I know nothing about and at times I've not known how to deal with them. I have had to put my trust fully into the transplant team, something I found at first extremely hard to do given the trouble I've had with medical teams in the past. But anyway back to the original statement, I answered without any doubt in my mind 'not for a second'. It would be so easy for me to become like that, I've seen it happen to other patients on the ward and hell I've had my problems since transplant some days I have felt like giving up, like I’m fighting a never ending battle, things are not perfect for me right now and we know now they maybe not be, that's another blog altogether (!) But I'm 100% sure I did the right thing with going through with my transplant. It's the best thing that's ever happened to me and I feel so lucky and so privileged to have been given my gift, my second chance at life. I have friends that have been waiting years and I've also lost friends waiting for lungs and I know that I could easily have been one of them. That sometimes makes me question why I've been so lucky but I'm not opening that can of worms!<br />Someone else also commented saying something along the lines of "oh I thought a transplant would make you so much better". Well it has! It was never meant to be THE cure, I knew that when I signed the consent forms, I never went into transplant believing that it would make my life perfect that would be silly. Even with the problems I'm having, I don't need a ventilator to keep me alive or even half as much oxygen as I did pre transplant, I don't feel constantly ill and like my next breath could be my last, that's the best feeling of all and to top it off I'm not dying, I'm living and now I have the potential to go on living for many years. Something that I've never had before, the potential to live, not die. Just a chance, that’s all I wanted and that’s what I’ve been given.<br />So the bottom line is, yes there's problems and I expected them they're just new challenges I have to face. But this is my new life with new lungs and I appreciate every second of it.Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com3tag:blogger.com,1999:blog-9005983756723765324.post-40749416569281589922010-09-15T15:35:00.000-07:002010-10-30T07:58:08.949-07:00Hmm well my aim of being in and out within a few days? That went a bit pear shaped! I'm still here. Quite alot has had actually. My 'small Pneumothorax (lung collapse)' I mentioned in my previous post decided to get a little bit bigger as a result it was decided I needed a chest drain. I guess I should have seen it coming really but I just believed the right lung had done with its dramatic behaviour and would just reinflate. Wishful thinking. So for the past week I've had the privilege of lugging round what is basically a bucket attached to my chest. Not so much fun. And at times pretty painful.<br />My veins have well and truly given in, access is near impossible luckily one of the transplant doctors managed to get an IV in half way and rescued it by threading in a long line up it which I'm clinging onto for dear life! I'm hopefully getting a port put in at some point though which will make life easier.<br />Most of my transplant drugs have been changed to alternatives so I'm now adjusting to those changes they haven't been easy on me and I've had alot of sickness whilst the team get the levels right. I have a bronchoscopy and biopsy scheduled for Friday, I'm hoping this one will go ahead and give us some answers. I think that's it for now.Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com4tag:blogger.com,1999:blog-9005983756723765324.post-41302943736624282782010-09-03T01:29:00.000-07:002010-10-30T08:01:19.520-07:00Back inWell I've been feeling a bit crappy for a couple of weeks. I started to notice a gradual dip in my exercise tollerance, an increase in breathlessness and lack of appetitte plus my cheeks were constantly glowing! Related or not I don't know! <br />I had a CT scan last week and I'm quite glad it came along on a day I was feeling really quite bad as it reflected how I was feeling in the following clinic appointment when I got the results. It showed I had a small pneumothorax (collapsed lung) in my pesky right lung, it seems to be the mischievous one! And 'scraggy' white patches which looked like inflammation over both lungs. My consultant said he'd seen alot of this before and although there was more than he'd have liked to seen he wasn't too worried but did want to get to the bottom of what they were, for sure, asap. A bronchoscopy and biopsy were planned for the following Thursday, just 2 days later. Wednesday saw me lounging in pjs all day with no energy or breath to do anything, I was back on oxygen and I couldn't even stand up long enough at the sink to wash. I had a few teary moments, out of frustration, feeling helpless and the worry that this is just how things were going to be, that this was it. Everything was an effort and poor mum was waiting on me hand and foot, I felt so guilty. I turned up for the biopsy yesterday and my consultant (different one to Tuesday) was weary. I admit I was worried about how I'd cope with the bronchoscopy as I was feeling really quite bad but I wanted it done so they could get to the bottom of it and I could get back to feeling better. After a chat and a check of my oxygen levels it was decided I wasn't well enough and it was cancelled. They sorted a bed out on the ward and I was sent up. I'm being treated for a bout of rejection, my second bout now (I had a bout during recent pneumonia) so they're looking at changing around my antirejection medication to prevent further bouts. Rejection is common during the first year of transplant, its takes a while for you to adjust to the treatment. But I find it so worrying, rejection brings back all the memories of my old lungs and my struggles I had with them, the struggles I don't want to be reminded of. <br />Anyway now the treatment has started I'm already starting to feel a bit brighter and hoping not to be in too long.<br />Rachyhttp://www.blogger.com/profile/07515086030726268911noreply@blogger.com8