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Erika's Mom
11-04-2007, 07:17 AM
Good morning Barbara, Jeannine and all,

My name is Marcia, and I am the mom of a 29 year old daughter with nonischemic dilated cardiomyopathy + pulmonary hypertension. Erika is my oldest child - I have 3 other children - all healthy - one daughter about to graduate from college, one daughter who is a high school senior, and a son in the 8th grade. My daughter, Erika is also mentally challenged.. so her dad and I must make all her medical decisions. (she lives with us in our home). I purchased your book, and almost finished it last night. It was a delight to follow your journey! As for Erika, her doctors (UPMC in Pittsburgh) have told us her condition is such that her life expectancy is approx. 2 years and the only treatment option they can offer to extend her life is a heart-double lung transplant. Therefore, we are planning to take her to Thailand for adult stem cell therapy, and have placed her on their schedule for January, 2008. I have still been looking at the other stem cell options (such as the clinic you visited - I think) and the one in Costa Rica.... and I am still second-guessing myself constantly. Not about whether to try stem cells before considering the transplant... but more about which stem cell treatment method would be best for Erika. Barbara - you mentioned a book you are reading about a man who had stem cells for heart.. can you tell me the title ?

Well, that's probably enough information for my first post. I look forward to "talking" to all of you soon.

Bless you.
Marcia

zar
11-04-2007, 11:38 AM
Professor Dame Julia M. Polak, M.D. is Professor of Endocrine Pathology at Imperial College London, where she studies tissue engineering in the Division of Investigative Science. She is the founder and director of the Tissue Engineering and Regenerative Medicine Center there and her work centers on finding ways to grow lung and bone tissue to provide alternates to transplantation. The leader in her field, Professor Polak is Editor of the Tissue Engineering journal and advisor to both the MRC Stem Cell Bank Liaison and the Science and Parliament Committees. For her services to medicine, she was created Dame Commander and her work has been recognized by the Society for Endocrinology, the International Academy of Pathology and Association of Clinical Pathologists.

In 1995, Dame Polak had a double heart and lung transplant, which spurred her interest and dedication to medicine, and inspired her to begin the Centre at Imperial College. She graduated from the University of Buenos Aires, Argentina and obtained her postgraduate training in the UK at the Royal Postgraduate Medical School at the Hammersmith Hospital

Erika's Mom
11-04-2007, 01:34 PM
Thanks Zar... are you located in UK ? I will try to contact Dr. Polak to see if she has any information that would help my daughter.

Marcia
(Erika's Mom)

Jeannine
11-04-2007, 07:05 PM
Erica's Mom and Harv

Harv, I am glad to hear you are trying this clinic in Cologne and thanks for helping Erica's mom to find the best treatment for her daughter.

RE: Your daughter, I can tell you that I had been in the early stages of cor pulmonale before stem cells and my heart rate would often jump into the 120s upon any kind of exertion (walking, standing) and my reasting heart rate was in the 90s. Since the stem cells, my heart rate rarely jumps above 105 even when climbing stairs and while resting it drops into the 70s. As a result it has lessened my shortness of breath as well.

barbara
11-04-2007, 11:18 PM
The title of the book by Bernard Van Zyl is "Stem Cells Saved My Life" , How to be Next. This man had serious cardiac issues, however, the book is based upon his search to get in a clinical trial. The good news is that the stem cells did indeed save his life and the therapy can be duplicated for others, but at their own expense if a clinical trial is out of the question. I appreciate your very kind comments about our book. I wish you all the best for your daughter and please feel free to ask any questions you need to. Harv is very pleased so far with his treatment in Germany and we are looking forward to his full report when he gets home and is rested. I am very happy with the treatment I got. Everyday gets better and better for me. I believe you will find the help your daughter needs and anything any of us can do to help, we will do.

rosech44
11-05-2007, 10:50 AM
Sending you big healing hugs, praying your treatment will be a success--

I am sooo glad I had mine---

Technocracy
11-05-2007, 03:34 PM
Great news.

I'm glad your experience in Germany has been much better than your previous one.

Hope the stem cells give you good improvement to your condition.

hlichten
11-05-2007, 03:37 PM
Thanks a lot, and best wishes to you and everyone on the forum.

I hope that 5 years from now everyone can get treatment in the country in which they live.

Erika's Mom
11-05-2007, 05:15 PM
Harv, Thank you for the information, and very best wishes to you for success this time. I did speak with an X-cell representative today, and although they do not treat nonischemic cardiomyopathy, which is what my daughter has, we had a very good conversation which may lead to better treatment for Erika. I struggle with hurrying to get her treatment while her health is not too bad, and taking enough time to make sure I have made the best decisions about where / how / etc.

Barbara, I do have the book you were referring to and have emailed the author to see if we can share information. His heart disease is also different from Erika's, as is Harv's, and there appear (to me) to be more clinical trials and treatments at this time for ischemic vs. nonischemic heart failure. But we'll keep looking, and asking.

Everyone, thank you for your information and good wishes. I look forward to being a member for a long time, and hopefully reporting good news regarding Erika's treatment at some point in the future. You may enjoy seeing her website @ www.erikahirschmannfoundation.org The people who work with me at the Hermitage (PA) City Building have gone over the top to plan and carry out fundraisers for Erika. They have been so successful that I should be able to take her to the far corners of the earth if needed without being overly worried about the $$$. They are wonderful friends.

Marcia

barbara
11-05-2007, 09:22 PM
Marcia - Could you please let our members know the difference in nonischemic vs ischemic heart failure? I am sure we can all Google it, but in a mother's words, please tell us what this involves if you can. I wish you all the best for your daughter and for you as her caregiver. I am glad to have you with us and look forward to your updates. I am so encouraged by all the new diseases that are being added to the treatable with stem cells list in our book. I am getting updated regularly by stem cell sources and it is very encouraging. We also have a fundraising thread. Did you have any fundraisers that worked particularly well for you? The people you know sound wonderful. This is a heartwarming story also. Thank you for sharing.

Erika's Mom
11-05-2007, 09:55 PM
Barbara,

In non-medical terms, cardiomyopathy means "weak heart muscle" "Ischemic" cardiomyopathy is caused by coronary artery blockages, subsequent heart attacks, etc... situations where the heart muscle does not receive enough oxygen due to the blockage of blood flow, and therefore portions of the heart muscle are damaged. This is the most common form of heart disease, and the one that seems to get more attention from the clinical trials, etc.

Non-ischemic cardiomyopathy (which Erika has) is a weak heart muscle from some other cause... could be genetic, or from drug abuse, or a virus for example. In her case, the cause is unknown, but a virus is the most probable cause. Her arteries are clear. She has had this disease for at least 11 years... 2 years ago it was determined that she had also developed pulmonary hypertension (high blood pressure in the pulmonary arteries).. probably as a result of the cardiomyopathy. She does not have any real pulmonary symptoms - yet - but the PH prevents her from receiving a heart-only transplant. Her only option (in the US) is a heart - double lung transplant. If that was the ONLY option, we would probably have to consider it, but the survival statistics and other negatives are not encouraging.

Marcia