Monday, October 24, 2011

My Interview/ Bone Marrow Drive Details

Hi everyone,
Check out my interview from last night (Interview with Julie Cornell). 
We have exciting news—2 bone marrow drives are coming up. The first drive is this Sunday from 12–4pm, honoring a 7 yr old boy, Isaac Barchus, who has an extremely rare disease. He is 1/9 people in the WORLD diagnosed with Candle Syndrome and soon will be undergoing a transplant (Isaac's Story). The second drive is the following Sunday from 10am–1:30pm honoring me. Details are below.
October 30, 2011
Countryside Community Church
8787 Pacific Street, Omaha, NE
November 6, 2011
Faith-Westwood United Methodist Church
4814 Oaks Lane (between 120th and 132nd at old “L” street), Omaha, NE

Tuesday, October 18, 2011

Please come to the bone marrow donor drive

And please share my story! Thanks :)

Hi everyone ... I am pleased to announce that I was interviewed by Julie Cornell of KETV again. This time Julie went with me to the doctor and interviewed my doctor about my need for a donor. (Doctors' Website) This will air Oct. 23, this Sunday, @10pm.

Good news, there is 1 bone marrow drive set up for Oct. 30th @ Countryside Church and a 2nd drive is in the works for the following week, Nov. 6. The 1st one was originally organized for a little boy in need of a transplant but he found a donor. The drive is still on for people like me!! You can sign up at no cost but of course they will always accept donations. Please see below for details.

Again, please watch the news this Sunday night, October 23rd at 10pm on KETV (Channel 7). The drive info is listed below:

Donor Drives:

October 30th
Where: Countryside Community Church, 8787 Pacific Street, Omaha, NE
Time: 12:00 to 4:00 pm

November 6th
Where: Faith Westwood United Methodist Church, 4814 Oaks Lane, Omaha, NE
Time: 10:00 am to 1:30 pm

Many people have asked if they could be tested. If you sign up for the registry then my search coordinator can look for potential donors within the "Be the Match" database. Please....I need a donor. Will you please come out and see if you could be a match for me and others in need?

Here is how it works. You will come to the drive and swab your cheek. From there, you cheek swab will go back to Be the Match and they will do analysis to determine your HLA type, criteria for donor matching. Your information will be in a secure database for search coordinators to explore for patients in need of a transplant. About 1 in 540 people will be called upon to donate. 3 links are attached to help you understand the process. Please save my life or someone's life!

Be the Match
Be the Match Newsletter

Friday, October 14, 2011

My Story-sorry for the 3rd person :) My daughters wrote this blurb

Tammy Muth, an otherwise healthy 51-year old, was diagnosed with AML mid-March when she was admitted to the hospital with double pneumonia and two forms of influenza. After two frustrating months of going to the doctor trying to figure out why she kept getting sicker and sicker, Tammy finally got her answer. Most people would expect to find out their diagnosis through a physical examination or a test result but nope that is not how Tammy found out what was going on. It took her fiancĂ© dragging her butt out of bed in the middle of the night, a trip to the ER, the swift and intelligent work of many doctors, six pints of blood (yes roughly 75% of the total volume of blood in a human body), intubation, four days of unconsciousness and Tammy’s relentless will to live to first save her life and second diagnose her with AML. After further testing, doctors told Tammy that she had a high-risk form of AML and needed a bone marrow transplant. A bone marrow transplant could significantly extend her life potentially 20+ years.

Fast forward to September and imagine receiving the letter from doctors saying they found a donor for you. Think about all the thoughts that would be going through your mind. Tammy felt like she had a new lease on life and was extremely enthusiastic about the grueling process ahead of her. She and her fiancĂ© gladly packed up four large suitcases and caught a plane to Seattle, where Tammy’s transplant will take place. Once in Seattle, Tammy received her medical work-up itinerary and had a battery of tests to go through before the transplant. Friday before Labor Day weekend, Tammy was headed into the clinic for some routine blood transfusions and received a call from her doctor asking to talk to her immediately because he had some important things to discuss. The doctor came into the room and dropped the bomb: “Tammy, I am sorry but your donor is no longer medically safe and we suggest you go back to Omaha and wait to see if we can find another donor.”

Tammy is now back in Omaha waiting for the donor search to continue. She just finished her last round of chemotherapy and will almost certainly relapse soon without additional treatment. The donor search process is expensive (~$10K/potential donor) and very minimally covered by insurance. Tammy's search coordinator informed us that if we had more money we could speed up the process. We are reaching out to you because we are running out of time and resources and need help.

Sunday, October 9, 2011

Last Round of Chemo

Hi everyone .... sorry you haven't heard from me for a while.  I had chemo week before last and I spent last week lying down.  This was my 4th and final round of chemo and for some reason my body had a reaction to it.  In addition to the common nausea, I had a fever all week that made my entire body ache.  I've had no energy.  I feel very blessed that when I got the induction and first 3 rounds of consolidation chemo, I didn't suffer like I did last week!

The donor search team in Seattle continues to look for a donor.  The antibodies I've developed is playing havoc in the success of finding a donor.  I learned, while in Seattle, that I have antibodies to 97% of the population.  That means we have to identify the 3% I will match and make sure they are signed up on the registry. (  

Also I need help and I'm open to ideas!!  I am now 100% financially responsible for all donor searches.  Fortunately, I had a successful benefit given by my family and friends and the money raised will be given to the donor search team but it is literally "a drop in the bucket" compared to what I need.  Do any of you have any fundraising ideas that I can pursue?  I would really appreciate any feedback.  My daughter is also working on something related to fundraising so hopefully something will open up soon.

Thanks to all of you that have helped me already.  Please don't think I'm ungrateful .... I am in a race against time and need to find the donor as quickly as possible.

God bless you all!