Bay Area Association of Kidney Patients

Educating & Supporting Bay Area Kidney Patients

Hi all,

My husband, Alan Lapp, and I are new members.
He has PKD and we are contacting transplant centers to arrange for live transplant.
We have been exploring the kidney and stem cell transplant combination that is a phase II clinical trial at Northwestern Memorial Hospital in Chicago.
We just got bad news that I can not be his donor due to asymptomatic kidney stones I did not know I had. Even though we have a number of very generous friends and family members who have offered to donate kidneys, it's a hard moment and brings up worries about the future.

Al and I run a blog, and Linda Umbach suggested that I share the URL:
http://alskidneyride.wordpress.com

Best to all.

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Comment by Zina Deretsky on January 25, 2014 at 1:40pm

Thank you Catherine.

Comment by Catherine Enciso on January 25, 2014 at 12:10pm
Zina, we are here for you and Alan. Catherine
Comment by Zina Deretsky on January 25, 2014 at 12:07pm

One question I have about the Walser diet, is: can I help my husband by also following it? Is it something that would be okay or healthy for a healthy person? (I'm a vegetarian from birth).

Comment by Zina Deretsky on January 25, 2014 at 12:04pm

thank you! Looking forward to it.

Comment by Patrick Barron on January 25, 2014 at 12:03pm

Yes Zina, I'm surprised more doctors/dietitians do not promote the Walser diet. The answer I get when I ask doctors is that it's too strict to follow. Now I won't deny it takes a serious commitment but avoiding dialysis became my number one priority when I went on the diet. There's another factor that is never mentioned but I think is part of the story and that is, if you are not closely monitored with frequent lab tests and have trouble managing your numbers you can get into trouble. Zina, look out for a post to my blog on Monday, where I will post how I implemented the Walser diet. It will tie-in there with my story with PKD.

Comment by Zina Deretsky on January 25, 2014 at 11:35am

Dear Patrick,

Thank you for reading my posts, and checking out our blog.
Thanks for the idea about matchingdonors.com; I will check it out.
Congratulations on passing your sixth kidney anniversary! How wonderful.

Coincidentally, I just learned about Dr. Walser's book right before our trip to Chicago. I wish I would have found it many many years ago…funny how preventative kidney care is really almost "covered up" as he relates.

I would love to hear more about how you implemented that diet. My husband is interested in starting it (we haven't finished the book yet)…and it seems like a complicated lifestyle change. I would love any tips, recipes, pointers or opinions on where and how to source the amino acids.

I would be happy to speak about the Chicago program… at least to the degree that I understand it.

Best,

Zina

Comment by Patrick Barron on January 25, 2014 at 11:19am

Hi Zina, thanks for sharing your story. I have PKD too, and as I recount in my blog, mine grew to 25 pounds! 

I visited Alan's blog and you two sound like wonderful people who are doing all the right things in reaching out in all directions for a solution. You're letting as many people know as possible that Alan needs a kidney. You're reaching out to multiple transplant centers for the best solution. Have you considered registering on matching donors.com? I personally have no experience with them but know of a handful of people who received a kidney through them - just check out all avenues. Keep on planting seeds for a solution, and as in my case, you may be surprised at having to choose between multiple options.

Many of us here would love to hear more about this clinical trial you're involved with at Northwestern Memorial Hospital in Chicago! My wife who has a different blood type from me was able to donate to me through one of the first donor swaps. Now, if I recall correctly, donor swaps account for about 15% of the transplants.

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