january_2010

In this edition is a quite unexpected contribution. Ken Brown describes his kidney transplant on Christmas day and what followed. It has been included with minor editing as Ken tells about his experiences in a very honest and moving way.

In producing this Newsletter it is always a delight to get contributions as they are your words and experiences that help us support each other. I have just one request. Please send me your personal accounts that might help others.

Wendy was a very cheerful and bubbly person. She had both served on our committee and on the telephone Helpline. She was the sort of person who both listened and helped people with their concerns. She also did a lot to help with fund raising and was one of the first group to do a sponsored parachute jump.

Wendy got kidney failure during pregnancy and was on haemo-dialysis for several years. Unfortunately she couldn't have a transplant as she had a phobia about pills.

Two years ago Wendy was badly hurt in a car accident and was confined to a wheelchair as a result. However it did not stop her being positive and very cheerful.
The funeral at Westgate crematorium was absolutely packed by the many friends she had, a real measure of the number of people she touched in her life.

Twenty-seven of us enjoyed a very pleasant and relaxed Christmas Dinner at the Wheatsheaf before Christmas. The food and company were both good. Mixing, funand possible frustration was helped by a quiz with a mix of question. So if you'd like a sample, "What sea animal has the collective name of a quiver?" Answer on the last page.

We welcomed as our guests Mary Woods who had recently retired from her work as renal social worker and Len Cline who has done so much as our treasurer.
We also held a raffle that raised £60

"I must be dreaming", said one haemo patient. Waking up to find a bespectacled bearded Santa beside him.

"No, I'm from the kidney patients and we've got a cracker, a card and a packet of sweets for you."

This Christmas all the haemodialysis patients are in one place. So armed with 300 cards, crackers and assorted sweets, Santa visited the 6 dialysis shifts as well as Wards 32 and 6A. Assistance was given by several "elf-like" figures, including David Lee, Rachael Lloyd, Mary Bullock (matchingly set off with flashing bag and wand), Alan Bond, Doreen and Paul Adamson and Len Cline.

Santa discovered that clothing designed to keep him warm on a sleigh makes a pretty fair sauna round the wards! Still it was one way of getting slim before Christmas.

Mike Hayhoe and Simon Lloyd attended a joint meeting with the North East Ambulance Staff. In addition were the renal staff John Tapson, Pam Yanez, and Sister Julia Harding as well as the North of Tyne commissioner, Jill McGrath.

The meeting started with a report on the development of renal dialysis transport since 1996. It showed a progressive increase by a total of 37% with a 25% reduction in ambulance car service transport and an increase in taxi utilisation of 46.5% and little extra money apart from increases inline with inflation.

1. The recent survey setting a standard of 30 minutes raised the standards considerably and in effect produced new ones.

3. The next step is for Pam Yanez to produce detailed specifications and pass these on to work with the commissioner Jill McGrath. Then this will be developed with the NEAS. The commissioner wants rapid progress.

The first meeting of this new group to meet with kidney patient groups was held in London. It was aimed at contacting as many patient groups as possible but very few KPAs came.

*Paired donations happen when a living donor is incompatible with the recipient. Two couples with the same problem donate to the recipient in the other partnership. Altruistic donations occur when someone donates a kidney to a completely unrelated person.

Is it worth having a kidney transplant when there are those who seem to have a lot of problems immediately afterwards? On average transplantees live longer. Results show that:

Please note these are average figures! There are some patients who have been on haemodialysis for over 30 years. There are also a lot of transplantees who do really well who we don't hear about.

The snow and bad driving conditions at the end of the first week in January led to us deciding to cancel this meeting. Our apologies if we hadn't contacted you and you turned up to find you'd wasted your journey.

We have decided to revise our programme so Pam Yanez will give us a talk on Quality in Renal Care at our May meeting. The planned talk on Peritoneal Dialysis will be given at the Annual General Meeting in September.

Please come and help us get across the importance of renal health as we take part in World Kidney Day on Thursday 11^th March. We would ask for your help in manning two stalls. One beside Ward 31 in the atrium outside it. The other at the main entrance of the Freeman. We will also have an unmanned stand opposite W.H. Smiths.

This year emphasis is being placed on the link between diabetes and kidney failure. We are going to advertise the total number of kidney transplants (about 1720) done in Newcastle Hospitals, with printed balloons. We also want to give out donor cards.

Could you please help us any time between 9.00 a.m. and 5.00 p.m.? If you would like to help contact Simon Lloyd . You never know you might even get your picture in Kidney Life.

The darts match will be held on Tuesday 23^rd February at 7.00 p.m. at the Wagon Inn. The Wagon is on the main Jedburgh road between Ponteland and Belsay.

The competition is for the Elizabeth Dickson Challenge Cup. If you would like to play or simply come and watch please let David Lee know. We need to know numbers for catering purposes.

We are organising a coach trip to the Harrogate Spring Flower Show. Tickets cost £15 that includes coach travel and entrance.

FUND RAISING AT LOCAL SHOWS

We are currently planning to put on our gazebo and stall at shows at Walker Park, South Shields Festival and Felling. We would also like to go to other local shows. Could you please let us know of any local show you think we should go to. If you have a suggestion please contact one of the committee.

This is the outline plan for the new primary care unit in the north-east of Morpeth. The site is at the bottom of St George's on the Pegswood Road.
The building is designed for the use of two practices and has a range of facilities. These include a 12-unit haemo-dialysis satellite unit on the top floor.
If the planning application submitted in December is successful work should start in July for completion in August 2012.
There is a bus stop at the site but only limited parking facilities and no chance of expansion. If it is the same as the satellite unit in Washington this should be a really good facility.

Telephone rings. my wife answers it looking puzzled, strange phone calls at ten thirty on Christmas Eve. She passes the phone to me with a quizzical look. The caller says she is from ward 6a Freeman Hospital and there is a kidney for me, can I get in?

Bang hammer hits head, still can’t quite take in what she is trying to tell me. In a daze I tell here I will be able to get in all right as I had just come home from dialysis. She replies, "Good, one job done. See you soon."

My brain now starts to function, "How will this affect my Christmas? What will happen to Christmas dinner tomorrow?"

I slowly prepare to go to hospital. "Don’t take too much with me, this may not happen." Still not knowing if I want this at this time, too confused to drive, so my wife drives me in very slowly in the snow. I am now half way there and wishing my wife would drive a little faster I am desperate to get there and have this resolved.
Arriving at Ward 6a we are greeted by one of the nurses who shows us straight in to a room. The nurse starts explaining what’s about to happen. The kidney is only for me. They have called no one else in but they will have to do blood tests to determine the final outcome. Out comes the needles, red stuff disappearing from my body.

Now the endless amount of questions from different people. The answers to be added to their forms. Risks are explained but I am still never asked if I actually want this kidney, just if I am happy to accept the risks. It is now done, I accept the risks and in doing seal my fate, I am going for it now.

The long wait begins I hop into bed and my poor wife is given another chair to rest her feet on and a blanket to put over her. A restless sleep begins and I wake up with my wife curled up next to me as she can’t get comfortable in the chairs. We doze again.

Doctors enter the room. The kidney is a good match and all looks favourable to go ahead. The operation will take place later on Christmas Day. My wife decides to go home and prepare for Christmas dinner and says she will phone later to check on progress.

Suddenly after hours of waiting it happens, showered, gowned and rushed to theatre. Pipes, tubes, needles appearing from everywhere, mask on face, breathe normally, drowsy, gone. I wake up back on the ward with a pain in my side, a mask on my face, drip in my arm and several drains coming from places down below. I am told the operation went well and that it was now a waiting game. My wife visits late evening but I am not really taking much notice.

Boxing Day the doctors come round and remark there is no urine output only blood in my catheter. The kidney must be asleep. "You will need some dialysis as your potassium is a little high." An instant downer. I thought this was the end of dialysis but a short spin on the machine again placates the doctors.

Visitors arrive but I am not really in the mood for them; still down from the dialysis announcement. The visitors, my wife and sons, announce that Christmas dinner was a big success as everybody just mucked in and made a go of it.

A further downer, kidney not working and they all had a great Christmas. Have I done the right thing? A couple of days pass and as my input is exceeding my output the drip is stopped, the drains removed and as I am not passing water the catheter removed. This comes with another announcement of dialysis being required again.

"What have I done?" Various visitors’ friends and relatives help lift the spirits slightly. Things are preparing for New Years Eve celebrations. Should my wife stay through the New Year with me? She receives an offer from my brother to go to the nephew’s house with them instead.

The kidney starts to pass a few drops of water. The pain! "Where did that come from?" Excruciating pain across my lower stomach.

By New Years day I have passed 500ml of urine very painfully at about 100ml at a time. I am quite up at this stage. "Is this the turning of the corner has the kidney woken up?" After seven years of passing no urine is this the start?

The doctors arrive I am ready for the good news, really up beat; but the doctors knock me back down again with the news that there is some rejection that will need to be treated. They start explaining that this is common and is not really a problem. By this time I am so shocked that I don’t really take in the fact that I need yet another spin on the dreaded dialysis machine.

A visitor arrives in the form of my wife and starts explaining the antics of the New Year’s party. She had gone home by 10:30pm and was in bed by 11:00pm my brother was wishing he had done the same, winding up with a large bruise on his wrist he knew nothing about and couldn’t even remember getting home.

On the 3rd of January I had passed 1600ml of urine. Painfully still but pleased with my performance. Doctors came in and said my blood figures were slightly up on the day before, though the day before was probably a good result due to the previous dialysis. The announcement of "Drink more and no dialysis," this time sent me in to raptures. "New Year, new kidney, is this the turning point?" I certainly hope so.

How selfish have I been this past week or so it has all been me, me, me. My thoughts now start to turn to the donor family and I get upset again. Someone has had to die to give me this chance. How can I ever forget or make some form of amends for this? Tears, stop a while. I will have to return later too emotional at the moment.

If it was not for donor families like these selfless people, how much longer would I and many others like me have had to go on with this endless trudge to the dialysis unit three times a week? I can’t thank them enough for this most generous gift at Christmas. Ken Brown

The current supply shortage of the immune suppressing drugs ciclosporin and tacrolimus is putting some transplant patients at risk. This is happening when their prescription names the drug rather than a named product and patients are prescribed a different preparation to their normal one. Patients on cyclosporin should continue to take NEORAL, and patients on tacrolimus should continue on PROGRAF.

Generic alternatives vary in the absorption rate and the amount of the drug they release. So if a patient takes a different formulation they could have harmful side effects and might even get rejection.

We should not be at risk because our consultants are adding a note at the end of doctor's letters stating it is important patients are prescribed a named product. If you are prescribed a different drug check with your GP or consultant before taking it!

Patients with multiple regular doses of medication and who have difficulty remembering when and if they have taken their dose at the prescribed time, should enquire with their GP if it is feasible to be put on to Medipack supply.

The majority of the work is done by your Pharmacist. They dispense your drugs in to a package (the Medipack) so that the correct doses of all your medication are divided in to the time of day they are to be taken, morning, lunchtime, evening and bedtime doses of all your medication. There are seven sections (called Fingers) of these compartments one for each day of the week. With seven daily doses in one pack there is or they may be able to deliver them direct to your door every week.

If you then think "Have I taken my tablets?" one quick glance at the Medipack tells you if you have or not.

Your GP, instead of issuing you with your monthly or three-monthly prescription as usual, will provide your nominated Pharmacy with your prescriptions weekly, or in some cases issue an amount of scripts to cover several weeks.

Most Pharmacies have the facilities to collect the prescriptions from your doctor on a regular basis and dispense them in to the Medipack for you either to collect,

If you like the idea of the Medipack but are reluctant to hand control of your health over totally to the professionals then you can purchase the packs and fill them yourself from your monthly supply.

After serious & cautious consideration... your contract of friendship has been renewed for the New Year 2010!
It was a very hard decision to make... So try not to screw it up!

My Wish for You in 2010:
May peace break into your home and may thieves come to steal your debts.
May the pockets of your jeans become a magnet for £100 bills.
May love stick to your face like Vaseline and may laughter assault your lips!
May happiness slap you across the face and may your tears be that of joy
May the problems you had, forget your home address!
In simple words ............

We have had three different wristbands made up for your protection in an emergency. Two different red ones for those on haemodialysis with a vulnerable fistula. These read either FISTULA LEFT ARM or FISTULA RIGHT ARM. On the other side is the warning NO BP TEST / NEEDLES.

The other wristband is for transplant patients and has on the back the warning NO NSAIDS. These are Non Steroidal Anti Inflammatory DrugS that include aspirin, Neurofen and Ibuprofen. The warning is against giving these drugs in high doses as painkillers.

A lot of us take low doses (75mg baby dose) of aspirin to prevent blood clotting, which is quite safe. It is the high doses that are potentially harmful.
Wristbands are available from our Saturday Charity Stall @£1 or by post from Simon Lloyd @£1-50 (includes p&p).

We also want to thank those who have given us very generous donations of items for the stall and raffle prizes.

COMPUTER PRAYER

Dear   Lord,
Every single evening
As I'm lying here in bed,
This tiny little Prayer
Keeps running through my head:

God   bless all my family
Wherever they may be,
Keep them warm
And safe from harm
For they're so close to me..

And   God, there is one more thing
I wish that you could do;
Hope you don't mind me asking,
Please bless my computer too.

Now I know that it's unusual
To Bless a motherboard,
But listen just a second
While I explain it to you, Lord.

You see, that little metal box
Holds more than odds and ends;
Inside those small compartments
Rest so many of my friends.

I know so much about them
By   the kindness that they give,
And this little scrap of metal
Takes me in to where they live.

By faith is how I know them
Much the same as you.
We share in what life brings us
And from that our friendships grew.

Please take an extra minute
From your duties up above,
To bless those in my address book
That's filled with so much love.

Wherever else this prayer may reach
To each and every friend,
Bless each e-mail inbox
And each person who hits 'send'.

When you update your Heavenly list
On your own Great CD-ROM,
Bless everyone who says this prayer
Sent up to GOD.Com Amen