LEAFLET

I'M BACK!

PRESS RELEASE

June 2013

THE ART OF DONATION

MOSAICS depicting a kidney transplant patient’s journey from organ failure to full health will go on display at Manchester Museum next month.

The celebrated works of artist Tracey Walshaw will be unveiled to the public on July 8 in conjunction with National Transplant Week.

The 53-year-old kidney transplant patient hopes her graphic portrayal of the harrowing process which saved her life will raise awareness about the importance of organ donation.

Tracey, from Oldham, began to create mosaics that would chart her journey to recovery as she suffered renal failure from polycystic kidney disease in late 2011.

She said: “The gift of a kidney and subsequently the potential for life and a future for recipients is one of life’s most remarkable gestures.

“No words can express the gratitude recipients feel towards donors and so through my art I have found the best way I know of honouring that gift.

“The exhibition displays the mosaics I created before, during and after my transplant operation at Manchester Royal Infirmary in January 2012.

“I am dedicating it to my renal family – my donor, other donors and potential donors as well as the dedicated staff at MRI.

“I hope this exhibition will raise awareness about the need for kidney donors. There are currently more than 500 people in the Greater Manchester area waiting for a transplant.”

The exhibition at Manchester Museum has been organised by charity Kidneys For Life, which raises funds for the Manchester Institute of Nephrology & Transplantation (MINT) at Manchester Royal Infirmary Renal Units and Royal Manchester Children’s Hospital.

The money it raises enables vital research into kidney disease and provides essential medical equipment, education for renal staff and patient amenities not funded by the NHS.

The charity’s fundraising manager Irene Chambers said: “Tracey has not only been brave enough to come through kidney failure, a transplant and her recovery, but has also found the courage to detail her journey so she can help others facing the same ordeal.

“She is an exceptional person and we are delighted to be able to showcase her mosaics and story.”

Manchester Royal Infirmary carries out more than 250 kidney transplant operations each year and represents more than 13 percent of all kidney, pancreas and islet cell transplants carried out in the UK.

ENDS

Interviews and photo opportunities can be arranged.

Photo of one of the exhibits is set out below.

For further information please contact either:

Paul Brenchley, Trustee, Kidneys for Life fundraising for MINT

Tel: 0161 276 6323    Email: paul.brenchley@manchester.ac.uk

Website: www.kidneysforlife.org

Or

Tracey Walshaw

Mobile: 07968 009307   Home: 0161 284 7825

Email: traceywalshaw@hotmail.com    Website: www.traceywalshawmosaics.com

Or

Natalie Rodgers, Communications Officer (Division of Specialist Medicine, Division of Surgery, Manchester Royal Eye Hospital and Saint Mary's Hospital), Central Manchester University Hospitals NHS Foundation Trust, Oxford Road, Manchester   M13 9WL

Tel:    0161 901 2658              Email:   Natalie.rodgers@cmft.nhs.uk

Notes to Editor

Organ Donation & Transplant Week

This is one of the local events taking place, organised by Kidneys for Life and supported by NHS Blood Transplant, around National Transplant Week 2013 (July 8-14). The theme is Pass It On, focusing on encouraging people to not just sign up to the NHS Organ Donor Register but to crucially tell their loved ones about their wishes.

While over 90% of families agree to donation if a loved one is registered AND has discussed their wishes, this drops to only 40% when donation wishes aren’t known.

Having a conversation about organ donation is vital as one thousand people a year, that’s three a day, die in the UK because of a shortage of organs for transplant. There are around 10,000 people currently in need of a transplant.

As well as having the donation conversation, signing up to the NHS Organ Donor Register remains important. Joining is quick and easy - to register call 0300 123 2323, text DONATE to 62323 or visit www.transplantweek.co.uk.

For more information about National Transplant Week and organ donation visit www.transplantweek.co.uk. Join www.facebook.com/organdonationuk and follow us on Twitter @NHSOrganDonor to keep up to date on the latest newsWhile living donation can help patients, it cannot help everyone, which is why more deceased donors are needed. Sign up to the NHS Organ Donor Register at www.transplantweek.co.uk, contact 0300 123 23 23 or text DONATE to 62323.

·         There are around 550 people in Greater Manchester currently waiting for a transplant.

·         Less than 5 people have died in Greater Manchester in need of a transplant so far in 2013/14 but 35 people died in 2012/13 in Greater Manchester in need of a transplant

·         84 transplants have taken place so far in 2013/14 in Greater Manchester, there were 413 in 2012/13.  Relating to all organ donations including kidney, pancreas, heart, lung(s), liver, cornea and others.

Manchester Museum

As a university museum, Manchester Museum uses its international collection of human and natural history for enjoyment and inspiration. Working with people from all backgrounds, the Museum provokes debate and reflection about the past, present and future of the earth and its inhabitants. Manchester Museum actively promotes well-being through a process of education through art appreciation, object handling and participatory workshops. We work in partnership with health professionals – often with impressive results, whether for patients or healthcare professionals themselves.

Manchester Museum is home to one of the largest and most important collections of ancient Egyptian artefacts in the United Kingdom. The Vivarium houses a wide variety of live animals including frogs, toads, snakes and other reptiles and amphibians. One of the star attractions in the Museum is the T.rex, displayed in the pre-historic gallery alongside rare examples of fossils dating back to the Ice Age.

Manchester Museum is the UK’s largest university museum and all of its collections are designated by the government as being of national and international importance.

Manchester Museum,

The University of Manchester, Oxford Road, Manchester, M13 9PL.

T: (0)161 275 2648  F: (0)161 275 2676 www.manchester.ac.uk/museum
Open: Daily 10am-5pm with FREE ENTRY

At Last

At last!!!!So sorry I haven't been on the blog since May,I will explain why,firstly the TB  made me so ill I wasn't able to engage with anything except what feels like fighting for my life and then as I've picked up at the end of the year every time I turned the blog on it flipped me back into a space I didn't want to dwell in.But as time moves on the trauma of what is now on this New Years Day...last year,  makes it easier to reconnect.So thank you for your patience and continued support. Guess a recap would be useful and then you'll understand why......
The treatment for TB is a particular aggressive ,it involves combination therapy consisting of a mixture of six aggressive antibiotics for two months, then the combination is reduced to three, basically they take out the three that make you vomit all the time,smell like a damp dog and cause anxiety and depression.Then you remain on these until they are fairly sure the TB  gone,but no guarantees. I'm still on these drugs till February then the Prof says he'll review it. Unfortunately there is no test to tell them if its gone and as I have  got it in my lymph nodes I think they want to be certain.I did develop another abscess,no where near the seriousness of the initial one and for some reason when you get TB in your lymph nodes you can even still develop them after the TB has receded...one of those unfortunate things! I have been dressing free on the initial abscess for a week now,so it took ten months for my body to repair itself...that's plaster on my neck for ten months,the nurses think I've got rhinoceros skin!
The staff at the MRI both in the transplant clinic and the TB clinic have been fantastic and say I was a tough woman and amazed I managed the treatment at home.Think it was horrendous as also managing renal meds, which the TB drugs disaffected, hence on hefty doses of steroids and anti rejection drugs. The TB made the whole process both life threatening and problematic.
 BUT now reducing both the steroids  and anti rejection meds,and I can stop injecting myself with iron as the renal anaemia has eventually receded.I still attend clinic weekly but hopefully when we get the drugs and side effects under control then these will be reduced.

So I have turned a corner and I can honestly say I have never experienced anything like that first two months on the TB regime. I vomited constantly. the TB night sweats were  awful especially combined with the antibiotic that made you smell, thank god we could afford a washer and dryer.They were so debilitating towards the end that I couldn't walk.However as each day passes I can  feel the benefit of my new kidney, Martyn not only saved  my life with his kidney ,he ,my family and friends have been fantastic throughout the process. I am indebted indeed for those folk who went the distance with me,accepted how the drugs affected me so badly, who held my life force when I could not and offered compassion,empathy and understanding.This has been a long process, and there is still both physical and emotional healing to do.But I feel pretty fantastic, I'm starting to reconnect with my creativity and I am ready to engage with work again. I have come back different from this experience, I will speak more about that in later blogs. But I notice food tastes sharper, the wind feels good on my face,my ability to be discerning about what I want to do and which relationships I want in my life is clearer.So enough for now on the first day of 2013 which feels is full of potential.
Happy New Year and may it be gentle and life enhancing for all of us.
Tracey x

Traumatic Time..The Grim Reaper and Back!

My boys breaking me out of hospital after four and a half weeks!

Mart the excellent packer,,,and no them conti pads are not mine!

The great escape!

Don't know quite where to begin with this 'episode' except to say its been pretty traumatic for all of us, and more so for family and friends who have been stoic with their support as part of the time i was 'morphed' out amongst the various pain killers, IV paracetamol is a treat as is IV morphine, and Entonox[ the gas and air stuff they carry in ambulances] well that is amazing stuff..everybody is just so attractive when your on it, even medics who are causing you surgical pain, Amazing!So I'm traumatized, I can feel a part of my emotional self sealed in a box and stashed away some where. So think that's why not been able to b log. so maybe for first attempt I'll list and bring you up to speed.It might be iggle piggley,

*Firstly lucky to be alive! Knocked on the grim reapers door for quite a while till microbiologist could 

 grow the bug that was stealing my life...they are the unsung heroes of medicine, I would not be here but for their skill and their tenacity. as to the medical staff at the MRI.

*Went in six weeks ago for five day course iv antibiotics for urine infection, Whilst in developed infection, temperature and pain in area above scapula, which developed into a strange mysterious lump, eventually had needle aspiration and visit to theatre but didn't find anything sinister .Sewed me up. medics still at a loss, More IV antibiotics. Discharged me!

First surgery!

Forty eight hours later admitted with acute cystitis, given iv antibiotics for seven days.Continued to get poorly, temperature, horrendous night sweats and very weak. Medics talked about all kinds  of stuff, polycystic kidneys may have to come out, toxic IV antibiotics which could damage my new kidney...they were at a loss. Think I was discharged for another twenty four hours when

I went back in as a medical emergency.The 'whatever it was' on my scapula was growing quickly, looked like a third breast on my neck![ next pics not for the squeamish, can jump past them.]

 Oh surprise, surprise me in casualty again!

Me very poorly but zonked on morphine!

* Eventually operated. this little beauty went right behind the scapula and to top of lung.Left me with open wound that now is being dressed every other day, as had to be sure not to seal any infection in.But we still did not have a diagnosis as to what was causing it and why I was continuing to be so unwell. Apparently found out recently they weren't quick to operate as there was a theory that there was a chance it was lymphoma, and if disturb lymph node it migrates to rest in body. As it was they had to take lymph node out and sent it to the microbiologists WHOM managed after some days to grow the bug....great excitement and jubilation's by medics, me...I still felt my ticket was numbered.

* Came up with diagnosis of atypical TB , which didn't like chests but liked skin and lymph nodes. Started some caustic IV antibiotics for short while then oral TB meds. Still having hot night sweats. lost a stone in weight now, spiking a temp,,but Marts kidney, god bless him and it just pushed me through fairly unaffected by all the drugs pumped through. So discharged...was that it....NO!

*Week after discharge got message from TB coordinator asking me to come in to see the Prof.Guess what... I don't have atypical [not full on TB] I have PROPER TB. The disease of consumption. Apparently I've inherited it from my dad , he died of renal TB but did have pulmonary TB as a young man, and even though I had the tests and immunizations when I was poorly in hospital when my white cell count went down to 0.8...pretty fucking dangerous, because I was so immune suppressed the TB came out to play! Pisser!!!!!!!!!!!!!

*So TB ...curable in most folk,the drugs regime is as close to Chemo as it gets,Its called Combination therapy.I feel like shit.The metaphors that stand out would be the Fray Bentus corned beef can with the wind up key, fully wound, and like someones spilt a packet of crisps on floor and when you stand on them I feel all that crunching like fractures in my body. Extreme nausea, its completely stole my appetite. lost another half stone last week.good job I was a fatty before this, but BMI holding up.Terrible.terrible night sweats and I smell chemically and that makes me want to heave too.Other people cant smell it but you know your own body smell.

*anyway green around the gills at clinic, so only have to go in once a week for blood, TB team suggest taking TB meds at night so may sleep through worst of side effect...my arse! Changed sickness meds So tonight is the third night, awake till 6 am, then doze for few hours but then manage to have an afternoon and evening.Its a knackering regime. Lost some handfuls  of my hair, my one vanity. but that's stopped now and had some bad blisters in my mouth ,which seem sorted, They have to monitor bloods closely as can effect anti rejection drugs and liver as can get jaundice. But basically this is the best regime and you just have to hack it...so very toxic dose for two months then if OK can reduce it for next four months then cured!Please God!.So on eleventh day of regime tonight.Poor mart has to sleep upstairs when hes working or else he'll be bonkers with sleep deprivation too.

Things to persevere with uncomfortableness for:

My amazing family,especially Mart ,Jen Jen and Pete.

My fabulous friends, old and new and the amazing inspirational folk I've met along the way,

My garden.

My life ,which is far from completed,

To all of you who have supported me with love,phone calls, texts, packages,cards, soup, freezer meals.cleaning.catching the threads I couldn't hold together,Healing, giving me the 'Get a Grip talks', the escape vehicles, the hand holding, the turning up at the hospital no matter what state I was in, the information,the bringing of flowers to the ward which were immediately confiscated..and still it appears to continue. I am held and humbled by you love, spirit and support...you know who you are......we did well!

PS.I AM NOT CONTAGIOUS!

Update

I've been in the MRI for three weeks with a variety of things due to a compromised immune system. I've had a nasty urine infection, a resiliant bug that requires in total 14 days of I.V. antibiotics twice a day, a nasty chest virus and a white cell count down at 1.2. Pretty serious. I've also had and a visit to theatre to remove a lump of tissue developed around my clavical.

There's loads more, but this is a quick update. I find myself to be in a place of physical and emotional depletion. As always, if you want to spur me on, cards and messages really help.

There's lots of other emotionally challenging stuff occurring as well. The new kidney is holding its own, but it's devastated to hear that one of the treatments for the bug is an I.V. antibiotic that endangers my new kidney. I'm not there yet though.

The superstitious part of me says that's because I dared to think I was OK. The rational part says it's a blip, and have to take one day at a time. It's stressfull for my family and friends and those who are and have become close to me, so I want anyone reading this to be hopefull for me.

I need all the help I can get at the moment. Love Trace x

Back in Hospital

Tracey has been in hospital for the last eight days. The kidney is fine, however there have been other complications. She'll post an update towards the middle of this week when she is hopefully feeling better and has more energy.

Earlier in the week.

Up and about.

   

Eleven weeks post transplant

Me on my return from the hospital. I have to say its exhausting being in hospital!

 Had and overnight stay at the MRI as I had developed some respiratory reaction to a virus I'd had, which basically meant I couldn't get my breath and was coughing constantly.The medics stopped  of one of my immune suppressant drugs for a couple of weeks to allow my white blood count [ the parts of your blood which fight infection] to rise from 2, which is not very good to this weeks result  increasing to 3.4. What was really levelling was they admitted me into the bed next to the one I'd occupied when I had my transplant and there was a woman in it who'd had a transplant the day before. I looked at all the tubes and pieces of high tec kit she was attached to and the realization sank in that I must have looked like that ten or so weeks ago. BLOODY HELL! The lady's daughter in law had donated a kidney to her, and the recipient was 71 years of age!

I knew Mart was ready to think about going back to work as when I returned from meeting up with one of my mates for a walk he'd started making a new gate. He has after I have worked very hard negotiating him down from five days, arranged to return to work for three days a week until his energy's returned.Not an easy man to negotiate with as he doesn't understand the concept of not working on full pelt.

Still working with the idea of having an exhibition about the transplant experience and kidney donation. Started this new piece its called''Lets Here It for the Donor.''

Took me ages to finish this mosaic, which is now ready fro grouting. It came to me the other day why? I think its about moving on. This mosaic is about hopefulness, I started it when I was hopeful about the transplant going well, getting a donor, getting my life back to a more healthy place. What I realized the other day is now I've dared to really let into my experience that it has been a  success so far and there is no reason why  I should not continue to improve and thrive.I realize I've been holding on too hard to''dont count your chickens before they've hatched'' stuff. Now although still slightly cautious I am allowing something into my feelings about '' its alright, its worked!'Mart has saved my life and offered me the chance to really engage with my life again....what will I do? So this new and exciting journey both continues and commences. I am really thinking about my contribution to life and what I want to do more off and indeed less of!' So lets here it for my donor...he really is a hero!