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Dublin: 6 °C Sunday 20 October, 2019
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'Beaumont Hospital chiefs are playing Russian roulette with my life'

I’m 38, a mother to two boys, and I have just been handed a death sentence.

I HAVE GOOD days and bad days. On good days I get to cuddle my children, do the shopping and cook dinner. On bad days I pass out several times and my kids have to turn me on my side and give me an injection to bring me around.

A few years ago my pancreas failed and since then I have been on a waiting list for a transplant. A transplant is my only hope of surviving and living a normal live. But now all those hopes have gone up in smoke. I’ve been told that the Kidney and Pancreatic Transplant Unit at Beaumont is not reopening and that the HSE won’t fund a transplant abroad.

I have been handed a death sentence

Because of a bureaucratic decision I have been handed a death sentence and somehow no one is responsible. And I am not alone. There are eight of us on the transplant list that has now been shredded. There are many more people who are waiting to be added to the kidney and pancreas transplant list. We have all been thrown to the wolves – but who cares!

I am 38 years old and have hopes and dreams like anyone else. My thirst for life is overwhelming and I have so much to live for. I love my children more than anything and they need me more than anything, too. My sense of purpose in life is fading as my body becomes weaker. I ask myself everyday – how can I fulfill my role as a mother, wife and citizen?

The transplant unit at Beaumont was my lifeline and now it has been cut. A deadly decision was made to cut the service, even though it is recognised as a world class centre and has taken 20 years to build up. We haven’t been give any credible reason why it has been dumped.

In a health system that fails so many, this was one of the services we could be  proud of

To top it all, we have been told to go to accident and emergency departments if we need emergency care – the very last place a person with compromised immunity should ever be. I wonder if hospital administrators ever think about the costs involved in making a person like me even sicker than I already am by forcing me to go to an accident and emergency department.

We are so lucky to have the support of people like Dr David Hickey. For 30 years he built an expert team at Beaumont and has saved countless lives. In a health system that fails so many people, this was one of the services we could all be really proud of. Dr Hickey has fought for our lives every step of the way. He even offered to stay on after retirement to mentor his replacement but this was refused by the hospital.

My body is getting weaker and my worry is that it will be too weak by the time they sort the mess out. It feels like a game of Russian roulette and I don’t have any of the chips. These same hospital administrators know that a handful of sick patients and their stressed-out families are no match for the powerful bureaucracy that protects them.

That’s why I need your assistance! With the support of Uplift we’ve started a campaign to reopen the transplant service at Beaumont. You can sign the petition here. My life depends on it.

Ciara Kelly is waiting for a pancreatic transplant and has been on the waiting list at Beaumont Kidney and Pancreatic Programme for three years.

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Update Thursday 5.46pm - Beaumont Hospital asked for the following statement to be included in this article:

For clarification the kidney transplant unit at Beaumont Hospital is open and continues to operate as usual.

Beaumont Hospital and St. Vincent’s University Hospital have agreed to develop a collaborative approach to pancreas transplant.

This new collaboration will begin with joint assessment clinics commencing in Beaumont Hospital at the end of July. This agreement is supported by the HSE and Department of Health.

Patients who have already undergone a transplant have a clinical pathway in place and all have recently attended an outpatient appointment scheduled with the appropriate transplant surgeon. The purpose of these appointments is to clinically review the patient from a surgical perspective. At the review appointment, discussions relating to their ongoing care pathway are held between the patient and their consultant.

If clinically appropriate, patients are referred back to their referring consultant nephrologist. If their referring consultant nephrologist has concerns regarding the transfer of care, that consultant nephrologist liaises with the consultant transplant surgeon. To date no referring consultant has refused to accept a patient back to their care.

The hospital has communicated with previous transplant patients and patients awaiting transplant. The hospital has also contacted referring consultants for those awaiting transplant and is updating them accordingly.

Beaumont Hospital is writing to each patient outlining how their clinical pathway will work going forward. The hospital wishes to assure patients of their continuing commitment to provide them with a very high standard of care.

Do you have an organ donor card?

I gave a kidney to my husband to save his life

For clarification the kidney transplant unit at Beaumont Hospital is open and continues to operate as usual.

 

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About the author:

Ciara Kelly

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