Transplant only option?

I was reading the paper this morning and came across the following article. It kind of struck me funny and in a way was a bit insulting. Maybe it was the coffee or maybe I didn’t get enough sleep. Nah, it just hit me the wrong way. Now don’t get me wrong. I’m not against transplants. In fact, I wish more of them would be possible — maybe not for me, but that’s another story. I obviously believe people with ESRD deserve to have the best life possible. For some that means a transplant; others it’s home dialysis and the remainder is CHD. And for the extreme, it means no treatment at all and resulting in death.

However, depending on how one defines “pain”, I never really found dialysis to be painful — at least not in the physical sense. And the only option being a “transplant”. Well I don’t think so! I’ve been on dialysis now for about five years, and there are many who have been doing it much, much longer. Those of us who are on dialysis make many sacrifices, but we’re alive — some more alive than others. Those in-center may just be surviving, while those at home have learned life can be better. It may not be perfect, but whose life is? Once again, it’s an example of sheer ignornance that is shadowing the world. Not enough people know what dialysis is about. Ok, we may hate it, but we should also love it — that is if we love life itself. This is just another example why we need to educate others about dialysis. It not the end all, but a path to continued living! I don’t know about anybody else, but I wear my doing dialysis as a badge of honor.

Starbucks barista donates kidney to one of her regulars
By CHERIE BLACK
P-I REPORTER

Annamarie Ausnes had been visiting her local Starbucks for coffee and small talk with the barista for three years. During their conversations, they talked about almost everything, but Ausnes never once mentioned her failing health.

Ausnes, 55, who works at the University of Puget Sound in Tacoma, has known about her polycystic kidney disease for nearly 20 years. The genetic disorder causes numerous cysts in the kidney and eventual kidney failure. When her health suddenly began to decline and her kidneys were functioning at only 15 percent, she knew she needed a transplant.

Had her kidney function deteriorated to 12 percent, she would have faced painful dialysis treatments and possible death. Her only option was a transplant. Her husband and son weren’t matches. She was facing a long wait on a transplant list.

One day last fall, she mentioned to Sandie Andersen – the barista she casually knew through her morning caffeine runs – that her kidneys were shutting down. Andersen, 51, didn’t hesitate. She had a blood test to see if she matched her customer. She did.

Tuesday morning, Andersen donated a kidney to Ausnes at Virginia Mason Medical Center. Now, Ausnes has three kidneys. Surgeons said that unlike a heart transplant, her old kidneys “didn’t interfere” with the transplant and she had room for the new one to fit.

After what surgeons called a successful surgery, both women face a few days in the hospital, and weeks of recovery, but are expected to be fine, surgeons said.

Their husbands and family members gathered at the hospital Tuesday afternoon, relieved the ordeal was over and thankful their wives found each other.

“I have felt all along something special was going to happen for my wife,” said John Ausnes. “She’s a special person and she ran into a special person. We’ve been married for 30 years, and this was my opportunity to be a supportive husband.”

Jeffrey Andersen said his wife was groggy when he visited her immediately after surgery, and admired her selflessness at wanting to help a casual acquaintance.

“If you can save somebody’s life, it’s special,” Andersen said. “It’s what Sandi wanted to do.”

P-I reporter Cherie Black can be reached at 206-448-8180 or cherieblack@seattlepi.com. Read her To Your Health blog at blog.seattlepi.com/toyourhealth.

<Sigh> I have an article on my desk somewhere that ran in a newspaper from Arizona. A young man was getting his 3rd transplant from family members in about 5 years (sparing him from the horrors of dialysis). He had FSGS, which kept recurring–in less and less time. One family member after another was giving up a kidney to help him. Nowhere in the article did it mention better forms of dialysis. I actually called up the reporter to see if I could get her to do a story on home dialysis, but never heard back from her.

The media could do so much good, but seems to largely just perpetuate myths. It’s very nice that a barrista donated a kidney to a customer, but it’s just not necessary to act as if there is only one viable treatment option and dialysis is just a waiting game until a kidney comes along. Some folks choose–for one reason or another–not to get a transplant.

Hi Folks

The story that is posted ,needs an answer. Some may recall my call for bringing to the light the real story behind dialysis. For people on not to be ashamed . What we could use is someone like DR John along with Beth and Dori with some of leaders from NWKC and the centers that Pat has with Ralph . To write OP-ED on the real story of dialysis. If we could get the medical leaders to fully explain dialysis and give dialysis Pts( or what ever term, Bill’s term etc ,the chance to tell there story) I don’t know if any of the major papers in this country would run it ,but maybe the time has come to put a public face on dialysis . I think and have found that when I meet people and given the chance to talk about home dialysis they are confused because they have a picture in there heads of centers like the one I was in at first and the problems that Jane is going through. I know that or hope that what I have gone through and what Jane is dealing with are the exception, not the rule?

Dr John are out there ? and Bill do you think they is someone (You Maybe) that could collaborate with the good DR. and Beth and Dori, what do you think Pat, anyone where you are that could help put a story together that told the story of everyday people. People going about there lives and others who are doing even more (Bill"s Travels, Shad Ireland Foundation etc) Unless your in the dialysis world and really trying to understand the how and whys and what the dialysis world really needs to get better, if you just went about you day and just showed up at your center you may not be aware of the back and forth. I would like to think that if the dialysis world has well know people tell the story that dialysis can be as simple as a life event that people use and is there a down side ,yes , are there other ave. of life that don’t have down sides. But dialysis also has a plus in that it gives people the chance to go on living. You know that I could gone on, and maybe if the all people talked about could get something going we could use this site to have people who posted to add to the story. And the the ones who would write the story could use what ever other people post or not it would be up to them

http://query.nytimes.com/gst/fullpage.html?res=9A0DE4D81E39F935A35751C1A963958260&sec=&spon=&pagewanted=all
. This story talks about a Cailf. dialysis unit, some may know of it. Take with a grain of salt. this could be our time folks
thanks
Bob OBrien

I really like your post here, Bob, and would like to see it at the top of a thread of it’s own with an appropriate title ( maybe someone can move it please?). The article you shared is an excellent over-view of what goes on in the world of dialysis although it ends a little weak. I see it dates back to 95’. It goes to show that even prior to the 2000’ Senate Hearings on Dialysis, dialysis management was aware of the deceitful practices that occurred in dialysis clinics to pocket more profits at the demise of patient care and what should be done to rectify the situation.

I very much agree that there are those amongst the dialysis community that stand for the right things, write great articles, petition CMS and their govt. representatives, give dynamic presentations etc., but what is needed is a central board or at least a thread where the message of quality patient care and how it can be achieved is promoted in one unified voice. This site does that to a good degree, but this site and the others who speak for optimal dialysis care are like lone rangers speaking in the wind. Just like the insightful article you shared written back in 95’- it’s 08’ now and look how slow things have progressed. Every doctor, healthcare provider, dialysis staff member, organization, patient, caregiver and concerned citizen who stands for optimal dialysis care should proclaim this message in a unified way with ONE VOICE. Otherwise, another year goes by, and another, with no real progress.

I believe you are a person who has lived with health issues all your life. So you well know that the more independent one can be with healthcare that promotes independence, not dependence, the happier, healthier and more productive one can be for one’s self and society. The dialysis industry has perpetuated a sad loss of human productivity and life. The lone rangers of optimal dialysis care need to unite and make their emphasis known or they are just as guilty by omission of blocking progress.