Sister's kidney not enough for two siblings who need transplants

Sister's kidney not enough for two siblings who need transplants
Nanci G. Hutson, Staff Writer
Published: 10:32 p.m., Friday, July 2, 2010

NEW MILFORD -- Through the years, sisters Kim Polhemus, Kathy Murphy and Michelle Ward have not always lived in the same neighborhood or even on the same coast, nor have they pursued the same lifestyles or careers.

Still, they share memories of childhood summer vacations at their grandparents' home in Massachusetts and of coping with the loss of their parents as adults. The three sisters even share the same first name, Meri.

Yet what most binds the three of them is an unconditional love for one another that stands against the odds.

They are now tapping that bond of love to cope with something they wish they did not have to share: the life-threatening implications of polycystic kidney disease (PKD), a progressive genetic illness that led to the death of their father, Ted Ward, in his elder years.

Two of the sisters, Kim, 56, of New Milford, and Kathy, 53, of New Hartford, were diagnosed with the same disease, which steadily diminishes kidney function, 20 and 10 years ago, respectively.

Kim has been told she has as little as one to seven months before she will need either a "preemptive transplant'' or dialysis. Kathy's prognosis is not much rosier.

The third sister, Michelle, 47, of San Francisco was spared the illness but not the impact. She was deemed a perfect donor match for both her siblings.

One kidney. Two sisters. If this were a book plot, the reader would likely race to the last page to find out the ending.

For this threesome, the situation is real. They are relying on their personal faith and their networks of family and friends to script a happy ending. But time is of the essence in finding another matching donor.

So who will get Michelle's kidney?

"We haven't gone there yet. We can't choose one over the other," said Kim, the senior warden at St. John's Episcopal Church. "How could I accept Michelle's kidney knowing that puts Kathy on dialysis?"

Kim sent out an e-mail appeal for help with the sisters' plight last week. Michelle did the same; she also started a Facebook page.

Kathy did not wish to be interviewed.

Polycystic kidney disease, which has no treatment, affects some 600,000 Americans. Because it is an invisible killer, there are no physical signs Kim is ill.

"It's an odd thing to hear you have a fatal disease, but you feel fine," she said.

"Wow," said Lisa Smith, a program assistant at the Polycystic Kidney Disease Foundation. "I've never heard a story like that."

"Even the doctors thought this a remarkable event,'' said Michelle, who at this stage only knows she will eventually be a donor for one of her sisters. "I, personally, call it a medical perfect storm."

Dr. Richard Formica, Kim's transplant surgeon at Yale/New Haven Hospital, said the case has "created a challenge for the family."

He said he respects how the sisters are trying to resolve the issue, but advised that screening for second living donor must be done cautiously.

Formica does not dispute a transplant is preferable to dialysis, but he doesn't want people to think a patient cannot survive on dialysis until an organ becomes available. He said there are strict protocols to protect patients and donors.

Since Kim, who has three sons Andrew, 25; Tim, 23; Peter, 21; and Patrick, 18, sent out her letter, she has been contacted by at least two people who have started the process to be tested.

Neither of them is eligible, and her husband, Rick, is not a match.

Despite her precipitously declining kidney function, Kim said she is "more calm than I should be, because I just know my kidney is coming. God is sending it to me."

Michelle is equally confident.

"I have faith that this is going to unfold just as it should," she said.

Kim's friend Barbara Williams said she is in awe of how the sisters have "remained so faithful to each other."

"That is what makes it such an amazing story to me,'' Williams said. "The minute you hear about this, you want to do something to try and help."

Contact Nanci Hutson

at nhutson@newstimes.com

or at 860- 354-2274.

Here are the letters sisters Kim Polhemus and Michelle Ward sent out:

Dear Friends,

This is a difficult e-mail to write and it is likely to be long, so I ask you to please bear with me. You may know I have polycystic kidney disease (PKD).

This is a progressive genetic disease that causes cysts to grow on my kidneys to the point of making them non-functioning. There are few symptoms, no treatment and no cure. I have known about it for many years and am now at the end stages of kidney failure.

I am looking for a kidney donor in order to have a "preemptive transplant." If I can find a donor, I can have a transplant and avoid spending a shortened life on dialysis. I have as little as one month, but hopefully as many as six months of kidney function left.

Getting on a donor list is not an option because the wait time on a donor list is longer than the life expectancy on dialysis.

I have two fantastic sisters. Michelle is the healthy sister, and my sister Kathy has the same disease I do. Kathy is in end stage kidney failure also.

Our plan was for the three of us to get tested and whoever was the closest match to Michelle would have the transplant with her. As is sometimes the case, God has other plans. The tests showed Kathy and I are both exactly the same match to Michelle.

So, without the wisdom of Solomon, we are left to try to figure out who gets the kidney from Michelle and how we leave one sister without a lifesaving transplant. Our solution is to find a second donor so that we are both able to go on to lead a normal life.

Maybe you will feel called to be a donor or maybe it will be someone you know. I am sure my new kidney is out there somewhere and is coming to me. I just have to be patient until God reveals where it is coming from.

I can't be shy and ask you to please give prayerful thought to the possibility of being my donor and to circulate my story to friends and family as widely as possible.

Here is a bit of what is involved. The donor has his or her own surgeon and transplant coordinator, so there is no conflict of interest. The donor's health and well-being is the primary goal.

The donor surgery is done laproscopically and the recovery is about three to four weeks. There are no long-term effects and the donor has a normal lifespan.

A donor will be ruled out with any of the following: history of hypertension, heart disease, obesity, diabetes, lupus, cancer and kidney stones. From there it is a simple blood test to determine compatibility.

If, by God's grace we are compatible, we go from there. Below are some very good websites for further information.

Thank you for your prayers. Whatever happens, I want you to know how very much I appreciate the thought you give to this possibility.

Peace,

Kim Polhemus

This is Michelle Ward's letter:

Some of you are aware of my family's genetic illness called polycystic kidney disease that my two older sisters, Kim and Kathy, have that I do not have.

My father and his siblings had it and probably his father before him, and now it is our generation's turn. ... Diagnosis usually occurs in the 20s, with little progress in the 30s and 40s, but starting in the 50s the disease takes off and kidney functionality declines exponentially.

There are no symptoms to speak of -- no pain, no compromised lifestyle -- until the disease reaches advanced stage, and kidney functionality decreases to mortal crisis.

At 15 percent functionality a transplant can be done if a living donor has been identified; at 10 percent functionality, if there is no donor, dialysis is the only option. The average wait on a deceased donor list is five years. The average life expectancy on dialysis is five years.

So when the results came in from my sisters' interval testing that Kim was at 25 percent functionality and Kathy was at 20 percent functionality, they both received referrals to Yale New Haven Transplant Center to start the proceedings for transplant. The only thing needed was two kidneys.

Needless to say, I was immediately tested. The good news is, I was tested as a donor to Kim (and I matched, YAY!). The good news is, I was tested as a donor to Kathy (and I matched, YAY!).

Yeah, yeah, I know what you're thinking: You can only donate one kidney to one sister, right? Yes, and even though this could be perceived to be a dilemma (after all, I do need one kidney for myself LOL), we still feel blessed that all options are wide open for all of us, with none of us ruled out.

Even the doctors say they have never encountered these remarkable odds -- that one of three sisters equally matches two sisters needing donation; apparently, we are a medical Perfect Storm.

So we have all kicked into high gear to find a second donor. Rather than pausing to consider to whom my kidney will be gifted, all efforts on the part of all three of us are focused on locating a second donor for the best possible outcome for all three of us: four persons participating in transplants -- two as donors and two as recipients.

Today Kim's and Kathy's kidney functionality are at 17 percent and 20 percent respectively (transplant occurs at 15 percent functionality), so time is of the essence, and we are all reaching out to our communities with our remarkable story -- to ask for help in spreading the word far and wide that three sisters are seeking one kidney and to ask you: Is there a part that you or your loved ones might like to play in this remarkable experience?

http://www.newstimes.com/local/article/Sister-s-kidney-not-enough-for-two-siblings-who-563962.php