Northern California Support Group Meeting

Northern California Support Group Meeting

This Amyloidosis Foundation support group welcomes all patients, families and friends. They meet quarterly (January, April, July and October) from 10am – 2 pm. Refreshments provided. Remaining dates listed below. Please RSVP with the number attending the meeting here.


2017 Dates:

April 22 

Dr. Michaela Liedtke from the Stanford Amyloid Team will be our guest speaker. Also joining us at this meeting will be Landon M. Bogan, CPE, from Stanford’s Clinical Pastoral Education Program, and two of the clinical pastoral education students who will be there to enhance their clinical pastoral training by observing our amazing group in action and interacting with patients and family members who may be interested.

Meeting Details:

Blake Wilbur Cancer Center, 875 Blake Wilbur Dr., 2nd floor conference room – Stanford, CA


July 15 – Walnut Creek Kaiser, 1425 S. Main St., 3rd floor conference room

October 21 – Stanford, 875 Blake Wilbur Dr., 2nd floor conference room

Please contact support group leader, Dena Heath, if you need more information:

Northern California AF Support Group

Northern California AF Facebook Page

Stop and Smell the Roses…the Journey continues

Stop and Smell the Roses…the Journey continues

Update: December 2021

As most of you know, or have read about the first part of my journey, thirteen years ago (2008), I was diagnosed with AL Cardiac Amyloidosis.  My life went along nicely until 2019. I began to notice changes and after a CT and PET scan, they revealed a tumor laying on top of my left kidney. This tumor was diagnosed as PTLD, or Post-Transplant Lymphoproliferative Disorder. This is brought on by the long-term use of immune suppressant drugs.

I was told at the time of my heart transplant in 2008 that this could happen with long term use of the drugs. I had a good run, but knew I was going to undergo a series of chemo treatments that would be grueling.  So, for the next five months, I went to Vanderbilt to receive treatment. For five days, I had five different chemo’s going 24 hours a day every 21 days. Then I would return home to recover from the high doses of medication and start the process all over.

By the end of September, the tumor was gone and I was on the mend. I won’t say that it didn’t take a toll on me, but for the next year I bounced back rather well.

2021 came in with a storm as my kidney started failing. This was somewhat of a shock, as they had been doing good. Then all of a sudden, my creatinine levels started going up, and my eGFR went down, down and down.  My doctors caught this trend and recommended a kidney transplant. Unfortunately, the amyloidosis that caused all of my problems and the light chains revealed that I was no longer in remission.  I got turned down for the transplant until I could reduce my light chains which meant more chemo. I began to feel really bad and lost weight as well as became anemic. I knew something had to change, so my renal doctor suggested dialysis until I could get back in shape.

I chose the peritoneal catheter that you can do at home while sleeping. On September 28th, I went into surgery and had the PTD catheter put into my stomach so that I could do the treatment at home.  The procedure was a little dicey, but I had a great surgeon and all turned out well.  After several days in the hospital, I went home.  Unfortunately, I did not do well at home. I couldn’t hold down anything that I ate, so I went back to the hospital for a week. I began on the cardiac floor as my heart needed some serious monitoring, but soon they moved me to the kidney transplant floor where the dialysis was started for the next 4 days.  The toxins were being removed from my kidneys and I was getting better. I finally was able to go home with 3 days of dialysis to get ready for my training for the PT catheter that lasted 5 days and then I was on my own.

My machine was delivered and my dialysis nurse came out to make sure everything I needed was there as I prepared to do it on my own. So far, I have been doing well and all is going good with the process.

Even though the journey continues, there is so much hope because of the research and the awareness of the disease today. My life has forever changed. I am so thankful to God, my family and the Vanderbilt doctors for the last 13 years of my life.

Original Article

Charlotte Haffner is the first Vanderbilt patient to receive both a heart transplant and a stem cell transplant, she has certainly learned that life is all about the journey.


Amyloidosis Research Consortium – Roundtable Meeting

Amyloidosis Research Consortium – Roundtable Meeting

The Amyloidosis Research Consortium (ARC) held a meeting in Boston on Wednesday, September 16, 2015 regarding “Changing the Amyloidosis Drug Development Pathway”. In attendence were medical experts, pharmaceutical experts, and rare disease experts from the FDA.

On Thursday, September 17, the ARC presented the findings of the previous day “Changing the Amyloidosis Drug Development Pathway” meeting to FDA experts in rare disease.

ARC mtg 5

The ARC is also hosting an extremely important meeting on November 16th with the FDA in Bethesda, Maryland. This is an unprecedented opportunity for amyloidosis patients to inform and educate the FDA about the need for new treatments.

The FDA has requested that we hold this meeting.

We need patients and their advocates to demonstrate their support by attending – and there will also be an opportunity for patients to speak. The ARC is working closely with the Amyloidosis Foundation, Amyloidosis Support Groups and the core amyloidosis centers to drive this initiative forward.


Admission to this meeting is free.

To find out more and reserve your place, please email us at [email protected].


A May To Remember

A May To Remember

Our longtime friend, Dylan Duncan, is donating all proceeds from the sale of his song “May” to the Amyloidosis Foundation in honor and remembrance of his mom who passed away in the spring of 1997.

Dylan wrote the ironic lyrics when his mother was dying at the time of year when everything is supposed to come to life. Please enjoy this tender tribute: Dylan Duncan sings “May”

I Never Thought I Would Walk My Daughter Down the Aisle

I Never Thought I Would Walk My Daughter Down the Aisle

There is no greater reminder that we should cherish moments than nearly dying. A close call with death ensures that we become much more aware of what we have, what we need, and what we might miss. We were extremely aware this past July, that this year marked 20 years since we wallowed in fear, self pity and continual illness. Lou was a married 42-year-old healthy father of 3, with a house, a couple of cars, and a great job. And then, he was sick. It just wasn’t the way it was supposed to be.