Eight weeks post transplant

 Me having a laid back approach to viewing the exhibits in the art gallery.When your tired you've just got to lie down...its abit like being three years old again!

 Mart in true engineers fashion just has to have a go at the kids challenge in the art gallery!

 Mart having his afternoon siesta...when he gives into his weariness that is!

 Humour is really returning to the Walshaw household!

Well were two days off eight weeks post transplant.We have managed to go on a few little outtings. I had to put the daily walks on hold as new Blood pressure medication made me feel dizzy  until I got used to it.I feel like both my energy and brain are returning more on a daily basis.I still get tired and I and other folk have to remind me I had major surgery not so long ago. Honestly it feels a million miles away.When I drove for the first time the other week I remembered it was the first time I'd been in a car on my own for about three months. It was fab, a lovely dusky evening with 'I'm every woman ' on smooth FM, I felt like Stirling Moss in my battered old focus....freedom! Petes starting to surrender control in the kitchen as well as my credit card ! He and Jen have been amazing.

Mart still gets weary and reluctant to stagger his return to work, guess he'll just have to learn the hard way he is infact not running at this moment on the energy he used to have. God damn that working class work ethic of his!I will have to learn to hold my tongue and accept he will do what he needs to....its dead hard..specially as I'm RIGHT on this one!

Don't know why I haven't blogged as much.I think its a general thing for me at the moment I seem to be doing alot of thinking but  I am slow at taking action. Its as if life has really slowed down and I find myself thinking alot about what I want to do with the rest of my life. I think I'll just focus on the next year. One thing I definitely want to do is have an exhibition of my art work about the whole transplant experience to help raise awareness about organ donation but particularly live kidney donors.

Spring has arrived in my garden.

Six Weeks Post Transplant.

Six Weeks Post Transplant!

 We've started going out for daily walks.Its great to see the spring bulbs emerging...just like us!

 Mart received a silver pin from the Transplant association for being a donor.There really is Snowman like Martyn!

 Guess this is a pretty exclusive club to be in ...donating your kidney.But were really hoping more people consider it as an option for someone they love if there in kidney failure. You really can live healthily and well with one kidney .

This was Pete's job at out patients. He'd end up either pushing or pulling me and Laura around the hospital . The most tired of us got the chair!Suppose its abit like 'buy one get one free!' Don't feel sorry for him he loved it!

Well six weeks past transplant...whoopee do! I'm doing OK.Still got some persistent water infection but prescribed some antibiotics today...and hopefully this will also stop it affecting my creatin levels...I tell you what, you really get neurotic about your levels...thank God the hospital are on to it and rational headed. When your a transplant patient I think there is a tiny part of you, no matter how optimistic or good your experiences are, still feared about rejection. I know that's because once you begin to get your life back as your head and body clears the poisons from your system you just don't  want to return to all that kidney failure brings. My infection could be something my polycystic kidneys have imported with them. I loving call them 'the ugly sisters' so in abit I think I'm going to be having an encouraging word with them.

I actually feel great affection for them as they did the best they could and soldiered on right to the end so I don't want them to feel rejected because of 'the new boy on the block'..the new boy being Marts kidney. I'm sure we can all cohabit the same body in harmony.So no stern words only words of encouragement...it really is like an adoption in a family. 

Met a fantastic couple in clinic today.The lady was 76 years old and had her transplant last year...she was on dialysis for eighteen months previously. She was there with her husband of 52 years. She was telling me that when she was on the bland,restricted renal diet he went on it with her...and that attending dialysis three times a week meant she could not get her jobs done. I'd call her'Bloody Inspirational' on many levels. I've been humbled by many folks stories over the past few weeks.

Marts fine.Hes much better now he can drive..he only managed one day in my car before I caught him backing that 'truck' of his off the drive! Funny really its took 'our transplant' to slow us down enough to do the things we always said we do more of when we're older.I don't know, I guess ring fencing time seemed so hard before the transplant when we were working flat out.I guess its given us time to reflect and evaluate our time together.That doesn't mean we don't still get on each others nerves at time! Getting out for walks is at least a remedy for the stir crazy feeling whilst we've been semi quarantined. I still have to be cautious around folks who have contact with kids. infectious stuff and indeed kids them little selves. How can they be so cute and carry such germs I wonder?

Reflections;Day Seven Post Transplant;The Day I Escaped From Hospital.

My lovely friends Ann and Violet came to visit and got more than they bargained for!

Please take me home!As you can see Pete brought an interesting selection of gear for me to wear home but as he forgot the coat we improvised!

I don't care if I do want to vomit I'm going home !Good job Violets used to her grand kids in her car.

Ready!

Steady!

Go! Go Violet Go!

Important Milestones this week

One Month Post Transplant!

Me waiting to go to theatre to have stent removed.

Practising the face I was going to pull when having the procedure done...fairly accurate on hindsight.

Well a milestone week: On Wednesday we were a month past transplant.There is such a difference in our appearance,energy and well being ,for me at least.It was also abit of a struggle this week as my white blood cell count was low, those are the cells that fight infection and I started with an infection which was resilient to standard antibiotics.This is because over the past few years I've had  a shed full of antibiotics and they stop being effective, so beware you 'ive got a virus, cold Dr please give me some antibiotics folk' as eventually you get immune to them and when you need them they do not work. Obviously I've been aware of this but because I've had constant infections the medics had to prescribe them,I'm just saying don't rush towards them unless there really necessary. So infection and we have the decision to make to prescribe strong antibiotics, which could mean again I've not got them as an effective treatment if some months down the line I get a major infection as I could build up a resistivity to them. Docs came up with a B plan to reduce one of my anti rejection drugs as to hopefully increase my ability to fight infection, not as bad as it seems as because I'm on the Campath trail which gives me about nine months anti rejection extra cover.Also it was decided my stent should be removed as it could be aggravating the infection.During the operation a stent ,which looks like fat fuse wire covered in a plastic coating, which has a loop either end and is stitched to the ureter to protect the surgical join whilst it heals  from the pressure of all the urine you pass through at hell of a force.The stent is left in for usually about six weeks but it can taken out around week four if it is thought to be causing infection.My join should be recovered enough for this to happen.I just wasn't expecting to be in clinic on Friday morning and in theatre in the afternoon.

The medics are really on the ball I'm just so impressed with them,they listen to what I say about my experience of whats happening to my body and always take this into account. So theatre. I can't believe that I was more nervous about the stent removal than the transplant itself.Probably because I don't give a monkeys what they do when I'm under a general anaesthetic but a local, when your awake is different. I think its been a good thing for it to be sprung on me as I would have ruminated abut the surgical date.So booked in at twelve midday and done  by half three .It was uncomfortable but tolerable and I definitely feel better with it out.I don't have seem to have developed any more symptoms over the weekend anyway.So technically I've got my body back,so foreign bodies in residence..as you see I'm not counting Marts kidney as foreign. I think it seems to feel part of 'my bodily family' abit like the adoptions going well at the moment. I'm feeling like I've turned some kind of corner over the weekend.

I am noticing my stamina is still rubbish, any exertion means I'm tired.I'm still in shock I've got a three month sick note.I don't think I've ever had three months of work before, even when I had a perforated cyst I was in work the week after. Guess its an acknowledgement that the idea I'd be up running about six weeks after surgery was an unrealistic goal. Also it takes time, hospital visits and lots of jiggling with the drugs to get the levels of''just enough immune suppressed'. 

Reflections: Day 6 post Transplant

It seems strange to look back and see how  looked, never mind remember how I felt. I remember feeling desperate to go home.I was feeling constantly nauseous,uncomfortable and thoroughly miserable and sorry for myself,pain from my internal stitches.One of my friends visited and I spent the whole two hours crying and retching .She was great, she just drew the curtains, held my hand and listened.I had hell of a headache when she went  but I felt better.Sometimes I feel in hospital you put on a brave face and its hard to cry or find the privacy to cry.I found the shower good for this!Crying is good for me, its not that I'm not coping its just such a release for all the emotional stuff that's going on that I know I've pushed to one side because I become so caught up with the practicalities of managing pain ,vomiting  etc.

I know Ive got to book my ideas up if I'm to be discharged tomorrow.I want to be at home with Mart and the kids.I had lost about eight kilos here to give you some idea how pumped up with fluid you are.The idea is you don't lose the weight quickly as the extra fluid encourages the new kidney to work.Unfortunately between the retching and the AWFUL food I don't think I'd eaten, except fruit and the odd butty and soup Id got my visitors  to bring in. Its hard to eat when you feel so rough but I was not tempted by the diet.This is in no way the renal units fault, its the hospitals.Its such a shame, if the saying is true 'you are what you eat' then it was beginning to feel if I didn't get home soon I'd never maintain the weight I needed to and this could jeopardize my kidney.Its like everyone says about how bad the food is but the hospital administrators do nothing about it.Its abit of a bugger when Lauras salt levels went up and the reason...the pizza she'd eaten at lunch!The friuit  that's sent up for the renal patients, mainly oranges...hello..aren't oranges high in potassium and your encouraged to avoid them if your on a renal diet.The care is EXCEPTIONAL the diet is UNREMARKABLE, UNAPPETIZING and INAPPROPRIATE at times. I knew from a nutritional standpoint I would heal better at home.

Day 4 Post Transplant

 

Have ventured into my studio.Its exactly how I left it,abit like time has stood still!

I think if the pain of my stitches eases off abit more I'll be in here mosaicing my transplant experiences asap!

Still going to transplant clinic three times a week. Last Friday still struggling with pain from stitches which I have been reassured is probably due to the internal swelling and obviously I was cut through several layers of tissue and muscle.Part of the pain is the sensation returning to the areas cut so there's apparently some truth in those old wives tales that if a wound is hurting its getting better.n And I thought that was just a platitude when my mum used to say it to me after some tomboy climbing crisis I spent my youth having.

So clinic still pleased with my progress,managed to reduce one of the immune suppressant drugs.All the blood tests you constantly have are around closely monitoring drug levels, amongst other things.As my blood pressures is raised my BP medication has been changed.Advised to take co-codamol to help with breakthrough pain from stitches.Took it regularly on Friday but noticed the nausea was reappearing. Reduced dose on Saturday and today Sunday I have woke up feeling significantly better.
Mart feels like hes perked up. Hes been really struggling with this change in role he has experienced since the operation. Martyn has never been in a 'sick role' so hes ranged from feeling bored, nowty ,lost and frustrated.I think it would be accurate to say hes struggled more with these challenges than any pain from the surgery.


Reflections;4 Post Transplant.

Mart visiting me on the female ward which is significantly less crowded than the male ward but that's because there are far more men than women that suffer from renal problems. However the foods just as atrocious on both wards. Medical and nursing care excellent......food 'shite!' Mart been given the news hes going home tomorrow.

Still looking like a roly -poly

Day 3 Post Transplant

 One of Base camps Tracey; the living room sofa so I can keep my beady eye on what 'my boys' are doing whilst I'm incapacitated.They seem to be doing pretty damn fine!

Isn't he just gorgeous!

Reflections;Day 4th Post Transplant

I remember it was somewhere around this time,probably Day 3 or 4 in the early hours of the morning waking to a strange feeling. I woke up feeling 'loved up'.I can only liken it to when I had my babies and and on about day three having this gush of love towards them, abit like really knowing they were mine, a part of me and here to stay It had echoes of this feeling and I remember putting my hand over my new kidney and feeling almost like my body was somehow embracing or loving my new kidney.All I know was I felt reassured and happy! Its beginning to sink in that my life has changing. Its really difficult balancing my hopefulness with the cautiousness that I fear that my body could reject my new kidney.Superstition underlined by old sayings like 'don't be counting your chickens before there hatched' are around balanced by this 'loved up' feeling. 

Marts still not managed to visit me as hes been poorly with the sleepy bowel, But I've visited him.The medics are sorting him out with extra IV fluids and the threat of an enema has apparently worked wonders. That bowel of his is well on the way to waking up fully.He's feeling tons better and wants to go home.Every time I've seen him since the transplant he's filed up with emotion.Its funny you kind of think you'll know how you'll be but neither one of us realized the emotional impact of it, and indeed the physical impact .Even though we were well informed  as to what we may expect the lived experience is so  much more 3 dimensional.Me thinks there's a few roller coasters coming up here.

  This was the only time I bruised when bloods were being taken and I think it was because I was dehydrated so the nurse had found it hard to get a vein. I really hate having my bloods taken but the staff are excellent at it.

I can move abit better as more tubes come out.Still experiencing waves of nausea.As you can see I have a new best friend...the disposable vomit bowl!

The boys visiting me whilst the girls are visiting Martyn.

I notice folk aren't saying how much we look alike Jen on days like this.

Day 2 Post Transplant

Mart still in mischievous 'Mr Hoodie' role.To say hes one kidney down hes doing fantastic.

Me and the crucial 'little blue book 'which we all get after transplant,like the pee measuring jug it goes everywhere with you so you can keep a record of information which helps the staff monitor the workings of your new kidney. Spotting if you are becoming dehydrated is crucial to help prevent rejection.

Reflections;Day 2 post Transplant.

Not using the morphine drip as much, although you can see that 'button' is always within my reach.

Me looking very puffed up with fluid.I tell you what being so full of fluid gets rid of any wrinkles..who needs Botox?

I think by the look of concentration on my face I was dishing out instructions to the kids.

Mart feeling not so good here.Him and his bowel have gone to sleep.Apparently the bowel  is such a sensitive organ that if it gets touched during the surgery it shuts down.It is indeed more sulkier than the kidney.Often it comes round on its own but may need a little nudge.

Day 2 was for me about really coming round from the anaesthetic in terms of engaging more with my brain and assessing the tasks of recovery on a daily basis.The first being the process of starting to loose some of the tubes attached to me. I remember feeling very sorry for myself at times and wondering if the pain would ever go and would I ever be able to stand up straight again? I remember watching Laura being admitted and her and her family starting the hospital procedures of preparing for her impending transplant.

 I thought that Mart and I were separated because of gender but apparently not. Laura's mum [her donor] was in a different bay to us as its policy to separate donor and recipient. When I think on that's so appropriate and its so each party has space to recover independently and doesn't have to feel responsible for putting on a 'good show/brave face' for the other. I remember feeling quite strongly,even through the morphine haze, that despite the fact Mart and I were geographically separated I did feel more worried about him than myself. I'm sure it would have been harder to separate whats going on for me from 'the what about the Martyn process?' if he'd been in the next bed. I hadn't even thought about this prior to admission all I thought was 'we've always been together so why not now?' a purely emotional response.Good job the staff appraise it from a different viewpoint.

I found it very useful and indeed reassuring that their were women in my bay at different stages of the transplant process.I could see daily transformations in them as to what they could and could not do .Of course it was also very useful to hear peoples experiences and and their extraordinary stories as to how they had come to this place in their life.The human spirit is indeed remarkable!

Day 1 Post Transplant on the ward,

Me and Mart 18 days post transplant.We had four inches of snow last night.I love the snow it seems to make the world more quieter!

Reflections; Day 1 post transplant

Mart back on the ward am

Day1 Thursday 19thJanuary 2012 post operation.pm

He was quite perky when the kids visited but still had his drain and and catheter in. See how fab he looks at this early stage ...stoic.He couldn't get to see me and I him so he sent me a video message,its on the end of this blog. You know for an engineer hes really up for being physically and emotionally visible throughout this process,I am very proud of him on many levels.He says hes got abit of discomfort around his wounds,bad wind and he feels constricted by his attachments!

Mart seems to be fairing better than me. Thursday 19th January Day1 post transplant afternoon visiting.

Back on the ward. Morphine pump in situ ,basically you can administer your own pain control by pressing a  button,what a wonderful invention. Unfortunately it tends to make me feel pretty sick so used it as little as possible after first day. I am loving the catheter as I can't imagine with the pain having to keep getting out of bed for a wee. As you can see by my bloatedness they've filled me full of fluid in theatre so Marts new kidney doesn't have time to go to sleep and forget what to do. So far no sulking from it.At dinner time Sister' Kid-lash' [kidney variation of Whiplash] gave the command to get out of bed...which with several pushes on that pain relief button proved possible. Empathy's not that useful at this time as sometime you have to just tell folk what to do because its good for them. Staying in bed which I really wanted to do because it was painful to move, increases my chances of getting chest infections and DVTs. I just want to acknowledge the skill and compassion the staff have in getting 'me moving'. 'Sister Kid-lash' was one of many staff who won my deep respect and affection and whom were crucial to my recovery.  

Love the morphine pump!

Jenjen with her beloved Babba .Doesn't he look perky to say he's lost a kidney.

Me looking not so perky! By the way them are not wrinkles on my neck its the invisible sticking plaster that protects a main line  into my neck which is temporarily stitched to beep it in place.Its a funny sensation but useful for measuring fluid pressure around my heart and also for administrating drugs and taking bloods if the cannula in my hand clogs up. I  look ancient although I can acknowledge my body has just gone through a major trauma.

I am indeed Mr Staypuff!

Mart sending a message to me Day1.I really appreciate the phone now. 

Me sending Mart a message Day 1 as neither of us where going anywhere fast.