Well 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 Tacrolimus (FK) has now been upped now I'm off Itraconazole (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 Creatinine 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 Ambisome 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.
I'm looking forward to Christmas, one I certainly wouldn't have seen this year if not for my special gift.

There'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.
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 bronchoscopy 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 Anastomosis (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.
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 Aspergillus. 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 (Amphotericin nebulisers, Itraconazole and Voriconazole (Vfend) 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 IV AmBisome (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 port-a-cath 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 ABPA for more info).
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.
ANY improvement will be worth it and so I will do the IVs.
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..."
Indeed there is.

Yesterday 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 Prednisolone and Azathioprine 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.
Fingers crossed...

Life is what you make it

I 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 PEG tube 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.
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.
A comment recently got me thinking too. Someone said "you must be proud of how far you've come". 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 :-)

are 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.
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.
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...

Rant

I'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!
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.
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.

Hmm 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.
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.
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.

Back in

Well 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!
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.
Anyway now the treatment has started I'm already starting to feel a bit brighter and hoping not to be in too long.

Thoughts

I've been doing alot of thinking lately, I know not always a good idea. About my lungs, my health, my donor. I asked about my donor whilst in clinic the other day in view of writing to my donor family (if anyone could give me any info on how to write my letter I'd appreciate it!). My lungs came from a 20yr old local woman. It was shocking to hear my donor was actually younger than me, I just presumed the lungs would have come from someone older than me. 20yrs old is no age to die and what her family is going through now could easily have been what my family had to go through. But because of that young woman and her family I'm here today and couldn't be more thankful.
I've had 2wks at home and although I'm still struggling with breathlessness, needing a bit of oxygen and I think recovering from the Pneumonia I'm actually for the first time since the transplant starting to feel more human and, well, more me. Feeling like this has reminded me how much I hate being ill and also how much I've missed out on because of being ill.
On Wednesday I met friend Laura for lunch. Laura is 30 and had a double lung transplant roughly 6wks after me, we were next to each other on the ICU for a while and we had similar, rocky recoveries. When she made it to the transplant unit we would sit up together late at night and just chat. It's nice (well not nice because I wouldn't wish a complicated recovery on anyone) to have someone that knows exactly what your going though and has been through the same or similar. Laura had Pulmonary Hypertension and although the team are still monitoring her heart closely she's doing well. Its little trips out like this with friends that are playing the part in making me feel more human and more normal, even if I am anything but ordinary!

Erm stop the ride I'd like to get off?
Lack of blogs, again, sorry.
I caught a rather nasty pneumonia and ended up in ICU. I can tell you it wasn't fun. It all seemed to happen so quickly, I'd called clinic on the Friday as after having a Bronchoscopy on the Thursday I wasn't feeling 100% and felt like I maybe needed antibiotics. My consultant who had only seen me the previous day when I was feeling ok said he was happy for me to wait until Tuesday's clinic where I could have blood taken to see if I really did need them. And I was in agreement with that (if I hadn't I'd have just pestered my GP for some), it seemed the sensible thing to do. On the Saturday I was feeling ok but in the evening felt 'shivery' and threw up, checked my temperature which was fine, took a couple of paracetamol anyway and went to bed. Early Sunday morning I woke myself up by what can only be described as 'grunting' in my sleep, it was actually mucus rattling around in my lung. With my diaphragm as it is that's not uncommon for me but then I got up to walk to the bathroom. Once back I sat clutching my knees trying to catch my breath on the edge of my bed and decided out of interest I'd check my oxygen levels. Sure enough they'd dropped to just 80% but were slowly coming back up as I was catching my breath. Maybe that should have set the alarm bells ringing but it didn't, it shot to the back of my mind as 'one of those things to tell the Drs at clinic next week'. As the day went on activities were becoming more difficult and the oxygen concentrators in the utility room had to be switched back on. I could hear my heart pounding in my ears and my oxygen levels were in the low 80s, I went for a nap and again started shivering, my temperature had jumped up to 38.4c (102f). At that point I grabbed my transplant handbook and had a look at what acceptable temperatures were, that wasn't one of them. So mum phoned the ward and I grabbed a bag. The rest is a blur of IV and blood gas stabs, CPAP and ICU. The same ICU room I was in post transplant. If I'm honest it didn't worry me all that much, sure it was bad, the infection knocked my lungs for six, I was out of breath but I've had worse, things have been worse and I think that's what helped me keep my calm through it.
I'm home now, slowly recovering, its taking time, I can tell the pneumonia was a big one put it that way. We aren't yet sure if the infection has caused any long term damage but I'll deal with that when we do know.
On a lighter note it was my dad's birthday this week and we got away to Warwick for the night so I'm going to leave you with a picture that was taken of me whilst there as I've noticed there's not all that many of me post transplant yet!

If there's one thing I value in people it's honesty, I started my blog so I could write about how I'm honestly feeling. I've had some stick recently over admitting how I'm feeling but you know what? That isn't going to stop me. I'm by no means complaining, I couldn't be more grateful I got my second chance and I don't regret going through with transplant at all because I know how much better off I am now. I appreciate so much the well wishes and the "it gets better!" comments, I just wish I could skip forward to that part.
I never expected transplant to be a walk in the park but the complications I've been having recently have brought me crashing down with a bang. It's hard at the moment, I want it so much to go right, I feel like I've paid my price with 8yrs of lung disease, to many near death experiences to count, my battle to get on the list and then stay alive long enough to get lungs and finally living through a double lung transplant. I feel like I've more than kept my end of the bargain.
I had clinic today and had mixed news I had a CT scan last week, there have been a few areas of concern in my right lung, recent CT showed those have decreased in size (well they have but another has been picked up and got bigger) with the recent 2wks of IV antibiotics I've had, this means they're infection. This would be good news but my last bronchoscopy showed I have 'floppy airways' in my right lung, basically when I cough to bring up the mucus they flop shut trapping it and there lies the problem. It's basically sitting there a breeding ground for infection, my cough is already not very good at clearing my right lung anyway due to my paralysed right diaphgram. I'm also having trouble with my white blood cells, on leaving on Friday my myfortic (MMF or cellcept one of my main anti rejection drugs) was stopped due to low white cell count. From what I understand not everyone is on MMF due to this but I'd rather be on it if I can be to put my mind at ease more than anything. The thought of rejection scares the hell out of me. The plan at the moment is to wait and see what happens, the team have as usual been fantastic and are planning regular CT scans and bronchoscopies. I may need some help from an airway stent to fix the issues in this right lung but I'm hoping to avoid that if possible. For now we watch, wait and hope!


- Posted using BlogPress for iPhone

Sorry for lack of blogs but as usual I have excuses! I was re-admitted to the transplant unit last week in quite a bad way. I went to clinic last week, now I'm still learning about my new lungs I don't yet know what is normal and what isn't and I guess I just thought how I was was how it was supposed to be and it was normal. I'd received reassurance that it was ok and things would get better and with that I didn't make a fuss about how things were, half kidding myself in a way and pretending I was ok. It became clear at clinic it wasn't normal, the team were quite alarmed and I wheezed my way upto the ward.
The next morning I went for a CT scan and later an urgent bronchoscopy and that showed exactly what was wrong. The team struggled to get a 2mm scope into my right lung. Myself and the donor were not 100% the same size, that of course is not always possible, to find two complete strangers that are exactly the same size. And so where the donor lung is attatched to my airway there was a size mismatch and to repair this my body healed aggressively with scarred tissue and this lead to a very narrow airway, infact about the size of a pin hole when its supposed to be around 4cm. This meant there was alot of trapped mucus in the base of my lung and that was the cause of the grumbly, wheezy noises I'd been making with very little effort and the hacking night time cough. Thankfully I didn't remember anything about the bronchoscopy as apparently it was quite nasty and one of the surgeons was pulled away from theatre to look at the tiny airway they saw on screen. It was decided instantly it couldn't be left and the next day the same surgeon was called in (it was weekend) and handed me a consent form. I was nervous but knew something had to be done my breathing wasn't great at all, I was on oxygen, cpap and alot of IVs. In theatre I was put under GA and the narrowing was mannually widened and the trapped mucus was cleared. It all went straight forward and I was back to the ward within an hour. The wheezing had stopped and I could breathe a bit easier apart from a bit of bleeding. The day after I was seen by the on call consultant and another bronchoscopy was planned for the next day, he was concerned there was still alot of mucus in the lung that was to thick for me to clear. So I went for another bronchoscopy which I was told looked alot better partly because the camera did actually get into the lung this time but there was still alot of mucus. The operation will have to be repeated at some point and probably again in the future. Since then I've been recovering on alot of IVs and with lots of help from the physios and of course the transplant team. This blip has shaken my confidence, not in the transplant team, I can't fault any of them and can honestly say I've never trusted a whole team of people before but I trust them but it's taken me back a little to 'these lungs were not mine, they've come from someone else, they haven't always been there like my old one's were'. I'm taking it as just a reminder and plan to take things a bit easier when I next get home and not try and cram everything in like I did. The team still have a few things to straighten out and it looks like I'll be until about the end of next week but I'll keep you posted.

new beginnings

On Friday (May 28th) I made it home! I've been through alot in the last 79 days but I know it's all going to be worth it. I won't lie it is hard being home, things I didn't even have to think about in hospital have suddenly become an issue. The fact that not all steps and seats are the same height threw me a bit. When I got home mum helped me out of the car and due to my excitement I forgot there was a drive to tackle, hills are not something I've properly taken on yet and drive feels like a steep one! And attempted to 'dash' into the house forgetting there was a rather large step and nearly toppled over, thankfully mum was behind me. First night home was a bit uncomfortable, stretching, bending, twisting and lifting litterally anything is still a little painful and I didn't sleep to well. Don't get me wrong I feel good but recovery is still in it's early stages, the fact that I can do all those things and still breathe at the sametime is still a novelty to me. I love thinking about the things I have planned, the things I'm thinking about planning and the fact that there's going to be many more to plan in the future. Hell the fact I actually have a future to think about now is amazing in itself.
Organ donation is a miracle, I'm living proof of that!

Onwards and upwards!

Hey guys, Pete Again

Rach has been doing fairly well, she said to me that she feels a little stronger yesterday so thats good  !

She said to tell you she is having to use overnight cpap as her lung seems to be a bit grumpy right now, and this may be long term while she strengthens her new shiny lungs, but she doesnt mind, its better than 24/7 !

She also said her team are fantastic, really looking after her and helping her along :-) I know from what she has been saying that her surgeon, Mr Yonan is also a great guy, funny, sarcastic and knows his stuff, which obviously makes things alot better for her ! He gives as good as he gets with our Rach too, which is a brave thing to do !

Thats about it, Il leave you with a pic she sent me this week :

Quick update from Pete

Hey all Pete again


Rach asked me to update you all as she has been SUPER busy recently with Meds and getting herself as good as she can.

She has had a rough time to say the least. Infections are the latest in her battle to recover, and she is currently fighting them off with a whole wave of nebulisers and IV antibiotics. But they are doing the trick slowly which is positive !

She had another Bronchoscopy today so she is understandably very tired now and fairly sore (So dont be surised if she doesnt update facebook for a few days) but hopefully all will have gone well with that and she will be ok after some rest.


She is also doing alot of physio to strengthen her lungs, another reason she is so tired, but this is a good thing as it means she is working hard at it !

And thats about it for now, she could do with some mendy thoughts still, so send them her way please :-)

Pete

A quick hello from Rachy!

Hello bloggerland! It's me!
I thought I would write a quick entry to say thankyou for all your kind messages, cards, gifts, texts, emails, I have read every single one of them. You are too kind.

As Pete said I'm now out of the intensive care unit and settled nicely on the transplant unit. I know some of you have asked for the new address so here it is:

Jim Quick Ward (transplant unit)
Wythenshawe hospital
Southmoor Road
Manchester
M23 9LT

Things are going great right now and I feel so much better. I'm working hard with the physios and getting stronger every day. I feel so very lucky to have such a supportive team behind me and I owe them along with my kind donor family and donor my life. From what we have learned recently about my old lungs we know I really didn't have very long left and my call came just in time.

Before I sign off I have the press coming on Wednesday and the plans are I will be on both BBC and ITV news (regional) and also featured in the Manchester Evening News. Look out on facebook and twitter for times and for those outside the northwest sky channels. I'll leave you with a picture taken today.

Life with new lungs...

***Update 1st May***

Ahh, first day of a new month and a first for Rachy since her Transplant :-D


Last night, Rachy, Myself and a few friends spent the night chatting via webcam. First time Ive seen her in person since before her Transplant 7 weeks ago hehe.


It was absolutely fantastic to see her moving, smiling and chatting away, I wont lie, I've missed this ALOT and so had she.


She looked fantastic, such colour in her cheeks and huge smile on her face :-D


She was saying how she now has 3500 emails to sort through...So apologises if she misses one or two of them haha! (Although most of them were facebook notifications...) eerrmm, what else? I'm guessing she will be updating the blog again herself soon :-D With me just posting when she is too busy to do so


And thats about it!
Hope everyone reading this is well, and id like to say that if Rach starts blogging herself again, then its been more than an honour keeping you guys up to date on her progress over the last 7 weeks, and if I had to, id do it again in a heartbeat for her, no question



***Fantastic Update 29th April***


Rach FINALLY has her Trachy out and can speak ! She has been waiting AGES for this step, and its finnally happened. This means, she can now SPEAK (And as a result, her Doctors and Consultants have said they want to take their Annual leave haha!)
Hopefully this will also mean she can go on the Transplant ward soon, which will mean less intensive treatement (but still alot of work to do) and a bit more freedom, and of course, its one step closer to the front door...


She is clearly VERY pleased with this, and in her words, she says she *Feels more human* haha yay :-D


And there it is. The update so many people have been waiting for, least of all,Rachy herself of course !


***Update 26th April***


Rach has had a busy day today ! Another Bronch today, took it out of her a fair bit (Completely understandable, its certainly not a walk in the park) Her pseudo is being stubborn so they are thinkign of trying another IV to kick its arse, which although Rach isnt keen on them doing that, she knows they know best !


Not really much more to report im afraid. They plan on getting that Trach out this week but they need to build up to that, and we will only know if thats viable if all goes to plan, so in no way is it certain ! But fingers crossed guys.


I realise she is taking a long time to recover, but please remember that this is a HUGE thing she has been through. Whole new lungs, a whole new body part. Every new thing has its gremlins in the works right? No new buiseness has ever been flawless, no car has ever been built and not had defects that take time to work out. Thats all this is right now....think of them as just bugs in the system. When the docs and Rach know what do do about them, she will fly out of there :-)


Night all, long day !

***Update 24th April***


Rach has just sent me a GORGEOUS pic of herself, so I thought it was time for another mini update and PICTURE :-D


Rachy needs (In her words!) *Sticky up lung thoughts* as her right lung refuses to stay inflated when she breaths on just O2, damn naughty lung ! So send her those please ! Cant hurt right?

Other plans are, overnight vent until they can come up with a plan to get that right lung working, and she had another blood transfusion today ! Busy day for her (Arent they alwasy busy!!) but she clearly has a huge smile on her face !

And here it is:

***Update 23rd April***

Todays Update is in Rachys words, as it very simply explains how she is ! So:

And they wonder why I'm not hungry! (See picture)
Bronch yesterday went well, no real changes it just left me feeling a bit sore. Team are cracking the whip now keen to press on pushing me to do as much breathing on my own again (so far I've managed 4hrs in a day) and of course eat and get back on track with physio! All in all is steady progress and their happy the lungs are getting over the latest infection and functioning well!

Clearly she is ready to start working on getting out of there after her minor setbacks of late, so here's hoping she continues that way ! Im sure she will :-D

***Update 22nd April***



Today is Rachys 6 week Transplantaversary!


Hey again all !


Rachy has had another good day today. She seems to be on the right track in beating the psudo on her chest, and they are hitting it with a whole barrage or antibiotics which should do the trick ! Xray is much improved on last time,a nd she is having a routine Bronch tommorow just to see how things are. After that, they should be pressing on with getting her trachy removed from her throat so she can finally chat !



She is her normal smiley, VERY cheeky self again it seems, which is obviously a huge indication that this massive risk was all worth while (of course!) .


Head of transplant popped in to see her, and made a comment of *Leave that feeding tube in, it suits her* (Jokingly) to which she replied with a...hand, gesture back to him, having the entire medical team, and Head in Tx in fits of laughter hehe :-)


Thats the Rach we know and love i think!



***Update 20th April***


Hey all


Pete back to blogging again, as Im out of hospital and Holly is away for now!


Rach had a good day today, Xray looked better so no need for another Bronch (See earlier mention of Bronch to find out more about this!)
She has started walking and being weaned off the vent again after the last few minor setbacks in doing so.
She says Microbiology are happy she is on the right Antibiotics for Pseudomonas, which i know from personal experiance, can be a pain in the .. bum, to get rid of ! But in Rachaels own words on FB recently:

"Feeling better, kicking some pseudomonas butt"

Hehe and why not indeed !

We also found out recently that a VERY nice person has offered her free driving lessons, as a result of reading about her story in the paper, for her to take up whenever she needs ! What an amazing person huh?

I sent a message to him thanking him and saying it will mean ALOT to Rachy when she is out of hosp, as she is VERY independtant when she can be (Read that as stubborn hehe, but in a good way!) and his reply was this:

"It is a small thing Im doing compared to all Rachael Rachel does. I am so happy to help such an inspirational Lady. Thanks for the Message"

Cant get better than that right??

Anyway, keep well all, and I'll update next time I hear anything :-) and of course will keep those pictures coming as and when she sends me them!

***Update. 15th April***

Hey Holly here again... Not much news since the last update really, Rach still has a bit of infection in her new puffers but the fab transplant team are onto it with strong antibiotics and regular bronchoscopies. The doctors still remain happy with everything and Rachy is keeping the physios on their toes by working on improving her lungs.

I am in regular contact with Rachy and her Mum, they are both in good spirits and are grateful for all the well wishes. Rachy is being her usual mischeivious self and was telling me how she managed to cough out an NG tube this afternoon, which of course she found hilarious, not just at the fact of coughing it out but for getting the physios in trouble for it! Typical! So Rachy's naughty antics continue.... Stay tuned...

Even from her hospital bed, Rachy is still doing fab work in promoting Organ Donation. Click Here to read an article that was in her local paper today!

Just a last note, please could you try and refrain from sending private messages to Pete/Kiz as he is in hospital himself and cannot keep up with them, so the sole point of information will be this blog. Please do comment and leave Rachy some nice messages, I know that she will read them when she can, and it will be lovely for her to look back on when she is home and back in the blogging world!

Watch this space for updates, Much Love

Hol x


***Update. 9th April***

Hey everyone, It's Holly Shaw here! I am responsible for Rachy having the magnadoodle (see the picture in the below post) I bought it for her as I thought it would be useful while she has her tracky in and can't communicate as much as she would like to... although I do hope she hasn't been writing too many rude messages on it!

I'm in regular contact with Rachy and she has asked me to update you all... which I am only too happy to do!

It's one month since Rachy had her transplant surgery and she is constantly thinking of the donor and their family, knowing that its only because of them that she has been given this second chance. She is spending more or less all day breathing for herself on just oxygen with a small amount of ventilation overnight. The fantastic transplant team at Wythenshawe Hospital are working hard and encouraging her to eat. Rachy has a little bit of an infection at the minute which is not uncommon at this stage of the recovery process, so nothing to be concerned about.

As above there was a new article in the Manchester Evening News about Rachy and you can read it here, she looks fabulous don't you think!

Here is another photo for you to keep you going... What a super smile!


So all in all, she is a superstar and is doing fantastically well! Keep doing what you are doing hun, I am so pleased and mega proud of you! Much Love x

Rachy in the news

Kiz again :-)

Didnt want to clog up the update post with other bits, so Im making a new post for this one !

Rach was in the Tamside Advertiser today, check it out in the link below :-D


http://www.tamesideadvertiser.co.uk/news/s/1201507_pms_get_well_soon_message_to_rachael

Shock and Awe (She got the call..)

**10.00 AM 10/03/2010**

Hey all

Its Pete blogging here on behalf of Rachy

Just an update (Huge understatement) and what could be the biggest update in the history of this blog :-D

Rachy just got her call !!

She is currently sitting in hospital, gown on and drugs down, waiting to hear if the assessement of her potential lungs from the donor are good and if they are, they can be sent her way !


All hinges on how the lungs of the donor are at the moment, so PLEASE keep everything crossed and I will update the second I get any more info at ALL (Il be updatin this post with edits so please bookmark this and keep checking back today!)

Heres a pic of our Rachy taken about an hour ago for you to enjoy !


*****UPDATE AT 17.00*****


She is on way to theatre now, its a go !


****UPDATE 18.30****

Rach is now in theatre, under anaesthic and its all systems go. Will be many hours, Probably tommorow before any more updates recieved so please keep her in your thoughts as she goes through it tonight :-)

Her mum has added, please try not to send any messages to her phone as it is full to bursting already ! Stick to FB etc, but keep in mind she will not be able to reply in any way and all updates will appear here. :-) . Well done Rach XxX


***** UPDATE 4AM *****

Pleased to say that Rachy is now out of Theatre, Docs are happy it went well and she is now in ITU. Her Mum says she did have a seizure before she went in, but id like to stress that they are pretty common for people going under so its nothing to worry about :-)

Now begins her recovery process of course, she still has a long way to go and it will in no way be plain sailing from here on in, but all things so far looking positive !

Well done Rachy, we are all with you while you recover, and look forward to hearing from you yourself soon !

**Photo Update 14.30 11/03**

No other news to report, but a photo from Rachys Mum was sent to me a while ago, so here it is (with her permission) Also Northwest News will be featuring the latest on Rachael at half 6 tonight :-)




****Update 12th March 2010****

Morning all. Todays update so far is Rach Opened her eyes for a little bit earlier, gave a thumbs up to her mum and went back to sleep again :-) along with the update is the below picture (As always, with Rachaels mums permission)




***UPDATE 12th March 2010 12.30***

Rach is now off Ventilator :-D Photo to follow later in the day :-D



**Message from Rachaels Mum**

She says thank you all so much for the messages, and she is happy for you to keep sending them, BUT, obviously because of the sheer volume she may not reply to them all :-) but thank you again from her :-)


For all those asking where to send Rachael cards etc ! Address is:

CTCCU
Wythenshaw hospital
Southmoor Road
Manchester
M23 9LT

:-)


****UPDATE 18.00 12th March 2010****

Rachy has had a few set backs in the last few hours. Her Oxygen SATS have dropped to 90 as her lungs arent co operating as much as they would like them too. She was taken off of the epidural because it was making her lungs *tired*, basically.

Since then, she has had to go back on the ventilator as they have found that her lungs are full of fluid and they need to decide what to do next.

Rachys mum says to let you all know she cant txt everyone with updates or txt back much at the moment.

Id like to point out that setbacks this close to a transplant are fairly common and it in no way means the worse (As I should have pointed out when I updated earlier)
Everyone has set backs, and Rach will pull through this one :-)

Rach does however, need Positive thoughts more so now than she did earlier today, so please send them that way, and il update as soon as I know more.


**Just a note from Kiz** 20.00 13th March 2010**

Just a note to say that Rach is currently sedated and still on her vent, and will probably stay that way over the weekend at least, so she can bond with and get to know her *New friends* Better.

During this time I wont be updating unless anything happens that you need to know about :-)

****No real updates at this time :-) 10.00am 17/3/2010****

Just to let everyone know, there's been no real changes in Rach. She is still on vent, Docs are still happy with her and she is stable. She opened her eyes for a few minutes on Monday, but other than that, all quiet. Id like to say, that if its not in this blog, then there will be no more news to be updated, and I promise you, it will go on this blog within hours of me being told, always :-)


Kiz

****LARGE Update 16.00 17th March****


Rach has been awake and communicating today, asking questions and managed a smile too ! First Proper day she has managed this since the Tx, so, yay !


****Update 19th March 2010 19.00*****

Another good day for our beautiful Rachy ! Docs are VERY happy with her indeed.
She is still on Vent and Trach but vent has been turned down (Which means she is less dependant on it now than she was) which is fan-TASTIC :-D hehe !
She also managed a brief Twitter update saying :

"Has the most amazing friends, support and doctors, recovering well from my double lung transplant"

Which is the first tweet since 10th March from her :-D

Heres a picture of her holding a card from Sarah Brown of No.10 , with her trademark smile of course !!

**Sat 20th March 2010**

No real Update, she has slept most of the day and gifts are starting to trickle in (along with alot of cards obviously !) Please remember not to send flowers if you are thinking of sending a gift of any kind as they can pose a risk to Lung patients because of the bugs the soil can contain :-)

Thats about it !

**Good Update, Sunday 21st March 2010**

Rachy managed half an hour breathing on her own today, which is clearly fan-TASTIC ! Also Managed to eat an Ice lolly, and even managed a txt to me! Still a long way to go, but she is clearly getting there, so well done Rach ! Litrally could not be happier for her :-D

Rachy with her first Post Transplant Meal !



***Update 23rd march 2010***

Rachy managed 90 minutes today breathing un aided (other than 02) and, I quote, she *Found it a breeze!* hehe ! Even did some marching on the spot today, *YAY lungs* she says ! Needed a bit of physio too but thats nothing really is it ! Heres a pic of her, finnaly in her OWN nighty which she is very pleased about ! Enjoy !



**Small update 24/3/2010**

Rach Managed 2hours on just 02 and her Trach yesterday. Doing SO amazingly well, everyone is pleased with her ! Not much else to update other than she seems happy at the moment, and loves all the cards and balloons you have all been sending (she does LOVE balloons hehe!)

And a photo of her first walk since Tx !



**Photo update 26/3/2010**

Another Pic of Rach, looking AMAZING ! You can also see the top of her brand new scar here :-D



And another pic here...






**Small update 29th March**

Not much to report, but people are asking so here we go !

Rach is still slowly improving, and Doctors are still happy with her. She is still getting tired a fair bit but thats completely expected, she has after all got brand new lungs :-D

Really not much more to say, will update when she starts showing more improvement, as for now she just needs a bit of rest, its been a busy 2 weeks !!!

**Update 30th March 2010**

Just a note to say Rach is doing well, has had a fairly good day today. Fingers crossed that they will keep reducing the need for the trach and vent (which they have been doing today) and hopefully by the end of the week (maybe) they can change the valce in the trach so she can SPEAK again. Can u imagine that, Rach not speaking for nearly 3 weeks?! She is gonna have alot to say.....Love ya Rachy XxX


**HUGE update 2nd April 2010**

This is a message from Rachaels mum which she posted on FaceBook 20 minutes ago. She says it best so May as well go with it!

"What a fantastic easter friday, Rach came off the ventilator today and is breathing on her own, with just a little bit of oxygen, WOW, still on the trachy but that should soon be out in a couple of days. She just wants to talk now but can't at the mo, shes still on intensive care, YAY xx"

She also managed her first full meal today, Sausage and spaghetti *Dances*

I think that says it all really !! Im SOO Looking forward to a voice mail from the lovely lady herself when she gets her voice back..best thing ever.

(And a photo for you here !)



And one more...




*** No news is good news 5 April 2010***

Hey guys. Just to tell you that no news is good news lately. Rach is feeling good and getting on with things needed to strengthen her lungs which is fantastic :-D But no major updates to report yet ! She MAY Get her trach out this week if she is lucky, finnally enabling her to talk (She hasnt managed that bit yet)

She did have one minor mishap today and managed to inhale a drink...But apart from that she is doing well !!

Updates may become less frequent now as she has hit a few HUGE milestones, but of course I'll update you with everything I can until Rach is able to do it herself and take back over !


***Update. 8th April***

Again Not a huge deal to report, she is doing well, and slowly making good progress! She was in the manchester evening news today if you want to try and find that article! And thts about it!


KEEP UP TO DATE WITH THE LATEST NEWS ON RACHY HERE IN A NEW BLOG POST. THANKS x

A quick note

Just a quick blog. I am reading your messages of support, every single one of them. Thankyou so much. I will hoepfully get round to replying soon.

Rachael Wakefield on BBC North West Tonight from Live Life Then Give Life on Vimeo.

The above BBC interview, not easy but I hope worth it. Have a read about that here I'm again in the local newspaper this week. Will keep you posted.

transplant clinic

I had transplant clinic today. Recently I've been feeling a bit rotten to say the least, no energy, no appetite, a blank mind, low oxygen levels and a fast heart rate. This morning I felt like it was a struggle to even move any distance. From getting up to take my medication I had to lie on my bed before I could even think about getting dressed. I felt so bad this morning that I honestly wondered how much longer I could go on for. With help I managed to do what I needed to and go to transplant clinic. Once seated I rested my arm on a TV stand and closed my eyes from exhaustion of getting from the car to the waiting room. One of the transplant co-ordinators came to take us round to see my consultant and a look of concern instantly came over her face. The appointment was quite brief with a quick summary of what’s been happening, how much I now need my NIV and how much pressure its taking to inflate my lungs and how unwell in general I've become recently.
To sum things up, my time is running out. Without a donor, I'm going to die, soon.
As difficult as it was to hear that I was in that much of a haze from how unwell I'm feeling it didn't have that much of an impact because I thought 'yeh, how I'm feeling right at this moment I can believe that'. I left with the image of my consultant crossing his fingers; he was crossing his fingers for my life because that’s all he can do now. In the waiting room on the way out I broke down into tears.
Please, if you believe in organ donation sign up to the register it takes literally 2 minutes and you can do it online, my life and the lives of thousands of others depend on it.

brief update

So long, so much to catch up on but I'll try and keep it as brief (and as painless) as possible.
Las week I got to attend the NHSBT roadshow in Manchester, great day but you can read more about this here. Lots of sign ups, lots of press. On Feb 22nd I celebrated my 22nd birthday. If, a few years ago, someone had said to me I'd be alive at age 22 in 2010 I'd have laughted at them! But I am still here and was able to celebrate and hope to be able to celebrate many more.

We marked the occasion with a 5 day break to Center Parcs in Sherwood Forest (thankyou for my bottle of wine and box of Chocolates CP!), just the break I needed! Paying for it now lung wise but it was worth it, no doubt I will get a telling off at clinic on Tuesday but hey ho.Celebrating at Center Parcs

I was recently offered a place at the charity live life then give life as a patient ambassador. I knew Emily when the charity was just an idea that started off so small and she was on the transplant list herself waiting for lungs, to see how far they've come is amazing and I'm honoured to be an ambassador, along with the lovely Tor for them.

As you may have noticed my blog has had a facelift! Yay for Louise at Adori graphics! What a wonderful job.

I've been thinking recently what I'm actually going to do post transplant? Something I've never really thought about before because it's taken me so long to actually get on the list, it's kind of "well what now?!" So I've been having a think and I've decided to start driving lessons, my first lesson is on Wednesday! Eek! Provided I'm actually able to handle a car (apparently driving can make some lung patients breathless?) I'm hoping to do a crash course. Also I've been thinking about education and what I'm interested in, I left highschool with minimal GCSEs having done them in my hospital bed. Graphics exam + IV salbutamol and steroids = Not good! So I'm going to look into open university courses and if they'd be right for me.

That's about it in a nutshell for now, have a look round my blog, there's new videos and media articles up.
Enjoy!

Freedom and new friends!

Where has the week gone? AGAIN?! My life has never been so busy, I keep looking at my diary 'ah calm week next week' and yet it still doesn't happen. To be fair if I had nothing to do I'd be complaining I was bored so even though it's hectic it works, mostly.
On Tuesday I went to ventilator (NIV) clinic, to what was, unknowingly going to be a long appointment. My ventilator, VPAP has been a little gem. I realise some people reading this may not understand why I actually have to use an NIV. I'm in end stage respiratory failure (Type 2) due to my lung disease. My respiratory muscles become very tired very quickly because my lungs are stiff from permanent scarring this makes it difficult for me to physically inhale and exhale because I can't exhale to full capacity I have something called air trapping in my lungs. Small airways collapse and trap pockets of air all over my lungs, these pockets contain the waste gas carbon dioxide (co2) which is eventually dissolved into my blood stream to gives me high co2 levels (hypercapnia). Along with this when lung tissue is scarred the ability of that tissue to put oxygen into your bloodstream becomes impaired. In a nutshell I end up with inflammed and scarred airways/lungs and low oxygen levels, scarring makes them stiff so airways collapse which causes air trapping that in turn causes high co2 levels. Phew! That's where NIV comes into a big piece of the puzzle. Although it cannot repair the scarred areas of lung because nothing can it helps me to use my lungs to the best of my ability by taking breaths for me. It keeps airways open so minimises airway closure/collapse so air trapping occurs less and that lowers my co2 levels. It also takes the strain and muscle fatigue off me giving me a break from working so hard to inflate damaged lungs. Physics lesson over to sum it up it makes me feel great!
Now although my VPAP has proven to be doing it's job unfortunately as my lungs have deteriorated over the last couple of months I have been more and more NIV dependent and the only battery option to allow me to leave the house on VPAP was external and weighed around 35lb. It was just impossible. So I went to clinic on Tuesday to look at other options. My NIV nurse called me in and told me to get comfortable because we were in for a long morning. Out my earrings came and the fun and games started. She clipped a transcutaneous blood gas monitoring probe, a fancy little gadget, to my ear and was able to bring up my blood gas (oxygen and co2) levels on screen. Having this type of monitoring and blood taken from my earlobes is something I'm used to. Earlobes are used because alot of arterial (oxygen rich) blood flows to the earlobes and so that gives a very accurate indication of whats going on in my arteries and more importantly my lungs. Although this is something I'm used to it isn't as widely used as maybe it could be because the cost of the monitoring equipment is very high, the alternative is arterial blood gases taken from a main artery in the backs of your wrists, elbow creases and feet and that is as painful as it sounds. So with my blood gases on screen I was switched to a different ventilator. A Nippy 3+. At first I panicked, it wasn't what I was used to, it seemed jumpy and jittery and was throwing breaths at me when I wasn't even wanting to inhale. We had a few teething problems with my oxygen levels dropping but nothing out of the ordinary for me. Once settled my NIV nurse took a blood gas from my ear to ensure the monitor was reading correctly and we were good to go. I feel almost privileged to have such an expert and supportive respiratory team on my doorstep, some people are not so lucky. We stopped for coffee in the cafe as I was shattered and my transplant consultant was, I presume, on a lunch break and we bumped into him there. The doctor-patient relationship has gone from strength to strength recently and I could not be more pleased about it. He gave me a pat on the back and told me to hang in there, something that if I could have for seen him doing 12mths ago I'd have laughed.

(Freedom!)

The Nippy is already proving to be a great piece of kit and with the confidence I had roughly 5hrs battery life (thanks to the on screen calculator) I arranged lunch with a lovely lady I have been meaning to meet with for a while. Holly Shaw. Holly is the northwest advocate for the charity LLTGL and has had a kidney transplant. She is amazing and has done so much for organ donation, scooping a Vinspired award last year for her dedication to raising awareness for organ donation. We made it out for lunch to Frankie & Benny's and spent alot of the afternoon giggling. I did have to politely remind her though that candle lit dinners were not a good idea when she suggested lighting the candle on the table... Oxygen + naked flames = BOOM. Her 'Hollyisms' (like blonde moments only worse!) were fantastic and I hope to hear many more of them, I have a new photo album to fill with our antics ;-)

Next week I have a bit of a line up too, topped off with a small bit of plastic surgery on one of my fingers to repair a nerve. Nothing major but it will see me in a splint with stitches for my birthday, super!

better times ahead?

The last few weeks have been crazy and I'm a bit lost for words, still. So I'm going to keep this one short (-ish). It has been a sad couple of weeks and a bad start to 2010 for those in the CF and transplant communities. I hope it's true when they say "it can only get better".

I'm channeling my energies now into raising awareness for organ donation in the hope that one day people waiting 4yrs+ for new organs is a thing of the past, I want that acheived, even if it isn't in time for me. I have some exciting plans hopefully coming together, more on that soon.
Health wise in the last week or so its been chaos, with appointments. As much as I don't mind going to them, it seems to be all or nothing. And "can you just pop in?" no, there's no 'popping in' with appointments. It takes me 1.5hrs to get ready in the morning, ventilator off, nebulisers, inhalers, tablets then I can do what normal do (with help) like get dressed. For example on Monday, I got up at 7am, was out of the house for 8.30am, traffic, so got to the hospital at 9.15am, appointment was over at 9.50am stopped for a coffee because didn't get time to get anything to eat or drink. Had to drop into ventilator clinic for a blood gas. Left hospital at 10.20am got home at almost 11am by which point I was wrecked and had to go back to bed. I struggle to stay awake more than 4hrs as it is, I'm a nightmare (maybe that should be morningmare?) in the morning as it is. So 'nipping' anywhere anymore is just completely out of the question! Next week I only have a couple of appointments, hopefully for a change of NIV on Tuesday to sort out my headaches and an assessment on Thursday for a new wheelchair to cope with new NIV. Then on Sunday (7th) I'm meeting a few NewStart/transplant friends for some lunch, which I'm sure will be interesting, so nice to hear the transplant success stories.
On Feb 22nd I have my 22nd birthday coming up. Not really a special birthday to many people but I'm conscious at the moment that I should make every occasion that bit special. I'm not so sure if that's a good way to think or not. I won't lie it does cross my mind 'make this one special not just for you but friends and family too, it could be your last' I hate to have to think like that but I just can't help it. I mean what about every other normal person that has a birthday and celebrates it not knowing it is actually their last? Because I know for me it's a possibility that it could be my last does that really make me any different? Ok I'm going to stop there before it gets too deep!