Clare woman hails organ donation as a gift of life and freedom
In the 1990s, OCCASIONED mother of three Geraldine Frost was raising a family, running a boutique and working a job at a medical device company, when a routine blood test changed her life.
As part of a routine medical examination, organized by his employer Analog Devices, high levels of a substance called creatinine were detected.
“It can be a sign of kidney disease,” Geraldine explained. “I felt very tired, but I attributed that to being rushed. My mother had died, aged just 50, of kidney failure, and eventually I was diagnosed with a very rare form of kidney disease.
Due to her condition, Geraldine’s kidneys were no longer able to perform their normal function of filtering impurities.
This required dialysis, a mechanical process to clean up waste and fluids. The procedure, which must take place several times a week, can cause significant restrictions in someone’s daily life.
In the late 90s, there were no dialysis units in the Midwest and getting treatment meant grueling trips to Dublin’s Beaumont Hospital. Fortunately, Geraldine was a candidate for a type of dialysis that can be done at home.
“After the diagnosis, I had nine months of home dialysis,” she explained.
“It involved four half-hour sessions a day and, to be honest, I found it quite easy.
“A catheter is inserted into your stomach. A solution passes through the peritoneal membrane, so it extracts water and waste from the blood.
“However, home dialysis is not for everyone. Some people may be afraid to do this or have had complications after surgery which makes the system unsuitable for them.
Analog Devices, where Geraldine still works, has always been supportive of her condition and she is deeply grateful for their flexibility.
“I love working here and they even made dialysis easy for me in their medical room while I was on dialysis at home,” she said.
After close medical supervision, Geraldine was put on a transplant list and a donor organ became available in 1999.
“To be honest, while I was waiting I couldn’t bring myself to pray for a transplant because it would be the result of someone else dying,” she said.
“When I woke up after the operation in Beaumont, the first person that came to mind was my donor. It was overwhelming. I was so grateful to them. I called the priest and asked him to pray for their families.
“There were conflicting emotions. I was really happy to have gotten a kidney, but it was tinged with sadness for the family of the deceased.
“I have written to my donor’s family, through the hospital, as they facilitate this. I wanted them to know how much this gift meant to me and what a difference it made.
After the transplant, Geraldine still traveled to Dublin two or three times a week to check on her condition and monitor the levels of immunosuppressants needed to ensure the new organ was not rejected.
Geraldine quickly regained her strength and was back on her feet.
“With three young children, the transplant allowed me to do more and keep working,” she said.
“I’ve had 20 years of brilliant health and I’m very grateful for that. I had time to raise my children and raise my family.
However, further challenges came in 2018, when Geraldine’s kidney failed. For a time, she was able to resume home dialysis, but her condition worsened. She is now treated by hemodialysis, which must be carried out in a specialized center.
“I go to the Fresenius unit on Dock Road in Limerick,” she explained. “I have central line dialysis and the blood is cleaned and returned. It’s not painful, but I’m sticking to a four hour dialysis schedule three days a week.
“I meet lovely people, but the need to go to the center means that I can’t really go anywhere.”
In addition to dialysis, living with chronic kidney disease also involves frequent medical check-ups. Geraldine has monthly blood tests and a consultation with nephrologist Dr Liam Casserly every two months.
“He’s so good and so competent and he seems to be working around the clock,” Geraldine said.
Diet is also another area of life where people with kidney disease face restrictions.
“The diet is very limited and there are a lot of things you can’t eat or drink,” Geraldine explained.
“If I eat potatoes, for example, I have to boil them twice and strain them to remove the potassium. You might think that eating lots of fruits and vegetables would be a good thing, but there are a lot of them that are bad for people with kidney disease.
“As for protein, I can only have so much. I can’t have chocolate – which I love. There is no more salt. In terms of fluids, I’m limited to 750ml a day, so that’s the equivalent of two cups of tea. There is the support of dieticians who monitor our blood and check what we eat.
While waiting for another transplant, Géraldine also supports her 32-year-old daughter who has just been diagnosed.
“I don’t care too much about myself now,” she said, “but I really feel for my daughter because of what she’s going through.”
Her sister has offered to be a living donor, but Geraldine’s previous transplant means it will be more difficult to find a suitable donor.
“My sister has the same blood type as me, but as I now have antibodies built up from the first transplant, that was not an option,” Geraldine said.
“Having said that, even though it’s harder to find a match this time around, there’s always hope.”
As Organ Donation Awareness Week draws to a close on Saturday (April 30), Geraldine said the conversation around donation is a conversation more families need to have.
“Many people find themselves faced with the decision to donate a loved one’s organs at one of the worst times in their lives,” she said.
“Ideally, these conversations would play out differently. It is very difficult to ask families to donate in these circumstances. The system in Spain is one where people are automatically considered donors unless they opt out. It is the best system in the world.
Geraldine is also very grateful for the work of the Clare branch of the Irish Kidney Association (IKA), chaired by Peggy Eustace, who recently installed a donor memorial at Friar’s Walk in Ennis.
“I would ask everyone to consider becoming a donor,” Geraldine said.
“Your organs are not good when you are buried or cremated. One person can change the lives of up to five other people. I believe that organ donation brings comfort to bereaved families in some way. It must be a little comforting to know that a gift from a loved one can make such a difference.
More details on kidney donation and donor cards are available at Ika.ie.