Six Years Ago Today

This time six years ago we were watching the first doses of anti-rejection drugs being drawn up; an unusual sight going into small boy with no kidneys. It jolted me into the reality of what was actually happening. Within a matter of hours he was going to be in a possession of a kidney that he could possibly reject. Like an unwanted Christmas gift, or a previously-held faith, his body could simply tire of his Dad's left kidney and decide their new tissue match-made-in-heaven was a non runner. It was a classic rush of too much information, so I decided to file that in the 'things to worry about next week' file while I continued my struggle to appear like a functioning human being as the trip to theatre loomed large. Six years on, I still keep that thought in the 'don't go there' file.

I don't go back to that day very often, except on each November 13, uncanny that this month of remembrance should hold such personal resonances in our home. This year has been a very good one; now tube-free, our Boy Wonder is making huge progress and settling into his new skills of peeing and eating like a pro. The journey has been eventful, but I feel we're moving into a new phase. We're more open to the world, because now with six kidney years behind us, we no longer feel like we are living in a separate realm.

We are here because a group of people in Temple Street Children's Hospital are committed to excellence, and so in keeping with our now-familiar tradition, we will gather this evening while the two kidneys raise a toast to that renal dream team. We will also remember donor families everywhere, who  at a time when their grief made even breathing in and out seem almost impossible, managed to make the gift of life.

Ever grateful for our good fortune, I'll struggle to remain dry-eyed while I luxuriate in the beauty of now.

Cheers,

Ann

Organ Donor Awareness Week 2nd - 9th April 2011

It's that time of year again when the donor community fight to bring the issue of organ donation to the top of the busy news and media agenda. You may even have read some very moving personal stories in the Sunday newspapers yesterday. It's an ongoing battle, which although meets with very little resistance, still feels like rolling that boulder up that hill. 2010 was one of the worst years on record for organ donation: there were only 58 deceased organ donors, a 35% drop on 2009 donor levels. 1989 was the first time Ireland broke the 100 kidney transplants in a single year, which considering there were only 178 people on dialysis back then, must have had a huge impact lives of those on the transplant list. Over twenty years later in 2010, there were 1,780 people on dialysis; the 58 deceased organ donations falls far short of this new demand.

There are many reasons for this anomaly, one very obvious cause is the laudable decrease in deaths due to road traffic accidents. Other causes are less tangible - but a recent survey of the rate of donations per hospital around the country seems to indicate a lack of trained staff to broach the subject with grieving next of kin. The new programme for government includes a commitment to the introduction of an opt-out system of organ donation. This system operates on the presumption of consent: everyone is an organ donor unless they have expressly opted out. A controversial system, which is not universally welcomed by the donor community. Many feel the generosity involved in giving permission for organ donation is too enormous for others to merely presume it will be granted. Mark Murphy of the Irish Kidney Association has favoured a required request system such as exists in the US: medical staff are required by law to request permission for organ donation where appropriate. Under this system, the family can still refuse if they believe it was not the express wish of their loved one. Whatever the outcome, the debate is to be welcomed; 1,780 of our friends, family and neighbours have had their lives placed on hold due to chronic kidney failure, we owe it to them to radically increase our incidence of organ donation.

There are two new links on this blog which will give you an insight into life on dialysis and the light donation provides in the vast black hole left by the death of a loved one.

In the meantime you have the power to do something that could save a life: text the word donor to 50050 to receive your donor card or for those of you with posh mobile phones there is an e card available for both android and iPhone through the App Store.

Cheers,

Ann

World Kidney Day

Since it is World Kidney Day today and the issue of organ donation often seems so abstract, I thought I would try to explain the difference that lump of human tissue has made in our lives.

But then I didn't know where to begin, the changes are so radical, yet so utterly normal and all encompassing.

At the most basic level, there was the first golden urine we saw way back in November 2007, shining droplets, each more magical then the last, starting with a steady drip, then swelling to a thirsty flow, like the first shower in the wake of a four-year drought. Even now, over three years later, I still marvel each morning when I'm greeted by half a litre of this extraordinary elixir shining through the plastic shell of his overnight urine-drain bag.

The arrival of this fabulous, glorious liquid means that we no longer rouse our boy at 4.30 am, every Monday, Wednesday and Friday to begin the long haul to Dublin for dialysis. His ability to produce this precious juice means we have thrown away a plethora of anti-hypertension medication, along with a well-used Sphyg and Doppler machine. This much-beloved amber nectar has given him the strength to become a regular schoolboy, to fight with his big sister, to enjoy birthday parties, to get into trouble, to laugh 'till overwhelmed by hiccups; quite simply, it has allowed him to reach the ripe old age of seven and a half.

For Donor Card free text 50050 and please make your wishes known to your loved ones.

Cheers,

Ann

Organ Donor Awareness Week 27 March - 3 April 2010

Last year 90 families, who were forced to say a final farewell to their loved ones, made the ultimate act of extraordinary compassion by agreeing to organ donation. These 90 grieving families' decisions saved the lives of 243 people in 2009.

Spread around the country there are now 172 people with new kidneys, who no longer have their lives on hold because of their dependence on dialysis. They are currently busy planning holidays, returning to work or study, maybe even running after grandchildren: activities which would have been unthinkable for them in 2008. There are a further 64 people who received the gift of a new liver; 11 were given new hearts and 5 more are breathing easily for the first time with new lungs; 8 others have thrown away their insulin supplies because of the magical arrival of a new pancreas.

Our friends in the amazing transplant team Beaumont hospital, with a level of productivity possibly unique in the Irish healthcare system, have raised their number of kidney transplants from 146 in 2008 to a new annual record of 176 in 2009. The HSE in its wisdom, has penalised this success by not increasing the budget to meet consequent strain on existing resources. As a result, the team were forced to export two donated kidneys and a pancreas to the UK transplant system because there were no available beds for the prospective recipients in Beaumont.

To quote the late Frank Deasy: Organ donation contains a possibility almost unique in modern life. We, the general public, can make a difference. It's not like the economy, the climate or Afghanistan. ...Your consent is the missing element in the equation of saving lives. That's pretty extraordinary.

Just in case you need further encouragement; this is what a successful kidney transplant looks like:

Donor Cards are available from your local pharmacy or simply free text the word DONOR to 50050. When you get your card, please remember to discuss the issue of organ donation with your family and make them aware of your wishes.

Cheers,

Ann

Old Wounds And New Wonders

Did I ever mention that Our Lady's Hospital for Sick Children in Crumlin gives me a severe debilitating does of the wobbles? Since it has been the location for some of the darkest days of my life; I try to avoid going there at all costs. My avoidance tactics ran out last Thursday when the elastic on my get out of Crumlin chord snapped. A minor problem with boy wonder needed to be seen by a urologist. The urologist in charge of junior's plumbing second fix, is based in Crumlin, so, reluctantly, we returned.

The other kidney said he felt like he was experiencing post traumatic shock disorder. I knew immediately what he meant. The first year of Rory's life is a blur for me, the stress and trauma was so intense that I just prefer to park it in the past where it belongs. However, no matter how hard we try to restrain it, that old skeleton can't help giving the cupboard door a really good rattle every now and again. Lest we get ahead of ourselves!

I find it very hard to distill the essence of my aversion to Crumlin, it's a volatile cocktail of fear, rage and despair. The staff were wonderful, warm, professional and caring, the conditions on the other hand, were somewhat akin to those of a Romanian Orphanage circa 1988. These pictures will give you a taste of how we lived for three months while we learned how to dialyse our new kidneyless baby:

Back in 2003, there was no dedicated renal ward in Crumlin so we were housed in a general baby ward and exposed to all those baby infections that rear their snotty little heads every winter. Rory picked up everything that was going; many a weird and wonderful virus. One of those nasty doses landed him in back in ICU on a ventilator when he was about 7 months old. Now that was a dark day.

For respite, we had the parents' accommodation. Again it was warm and welcoming but it hadn't been decorated since the 1950's. Anytime I stayed there, I couldn't help feeling like I was sleeping in the middle of a John McGahern novel. Suffice it to say the surroundings were not conducive to the recharging of flat parental batteries. I shuffled round that hospital like a zombie for months, until one day I was, quite literally, shocked back into the land of the living. 120 volts it was, delivered with a flash as I plugged in the dialysis machine to this socket:

That was the day I got my fight back. The shock lifted me off the floor and out of my torpor. I got angry, proper red rage spots in front of the eyes, angry. That ward has since been fully refurbished and there is now a dedicated Renal ward in Crumlin hospital. Maybe someone did actually read all those letters I wrote.

I listened to the stories of organ donation on Liveline during the week, and was yet again reminded of our extraordinary good fortune.

As I type, boy wonder practices how to burp on demand, just like any other six year old boy, delighted at his new found skill.

Cheers,

Ann & Burping Boy Wonder!

Organ Donor Awareness Week 28th March - 4th April

Given the week that's in it, I thought it might be useful to look at the statistics behind the gift of an organ.

Last year 81 families in Ireland were visited by unspeakable grief with the loss of a loved one. When death came calling, in the throes of their pain, they thought of others; and agreed to organ donation.

Because of their ultimate gift, there are now 136 people leading happy healthy lives with new kidneys, 12 of them also received a pancreas, 58 are thriving with new livers, 4 are celebrating life with new hearts, and 4 are filling their new lungs with great gulps of fresh air. That makes over 202 people, who's lives were saved by 214 donated organs. A further 10 living donors courageously made the gift of a kidney to a family member or loved one. All told that's 212 families who were given a second chance.

I know all about second chances. Our second chance means that we no longer get up at 4.30 am every Monday, Wednesday and Friday to go to Dublin for Dialysis. Our second chance means that we can go on our first ever family holiday. Our second chance means our family doesn't have to be separated by frequent long hospital admissions. Our second chance means that Rory can pee!

While I know a lot about second chances, I also know about loss. On the 13th of July 1988 my sister was mowed down by a drunken driver. We would have liked to have donated her organs but she was killed on impact. It would have helped the chaos of my grief, if her death could have saved a life.

Please think about carrying a Donor Card, and if you do, please make your wishes known to your nearest and dearest.

Cheers,
Ann

Small Victories

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!

Cheers,
Ann