Update on Erika

[Erika's Mom]

Hello friends,

I have posted a few times before regarding my daughter Erika (29 yrs. old... dilated nonischemic cardiomyopathy + pulmonary hypertension), and my search for the best possible stem cell treatment for her condition. Many of you, and Harv especially, have offered their help and information, which is greatly appreciated. We had originally thought we would take her to Thailand, and had actually scheduled treatment there for both October, 2007 and January, 2008. (although I was still exploring other options at the same time). However, Erika has been in and out of the hospital, and unable to travel since October with a variety of problems, including bacterial pneumonia which infected her bloodstream, and increasing problems with her cardiac condition / fluid status / low cardiac output. She just came home (again) this afternoon.

Our family has also made the very difficult decision that we are not planning to pursue a heart-lung transplant for her, so - (if her health allows) - we will continue to try to obtain a stem cell treatment... although distance of travel is becoming much more of a factor due to her health status. Regenocyte (Dr. Grekos) is possibly our best option, despite the huge cost factor, as the travel distance is much less, and he will direct cells both to her heart as well as to her lungs. The cells he uses are peripherial autologous blood cells, processed by the Theravitae lab in Israel - and his delivery method is catheterization. Some of my research has indicated that direct injection (surgery) is more effective for cardiomyopathy... but I am concerned about Erika's ability to withstand general anesthesia and surgery. Dr. Grekos seems to think that catheter delivery is equally effective... ?

I would appreciate any further - or new - information (private or forum) that anyone may have about the options for cardiac patients like Erika. Thank you in advance ! Sincerely, Marcia (Erika's Mom)

 

[hlichten]

I think that you are as up to date on possible treatments as I am, and I have done a great deal of reading:

As you know, I have had the Theravitae cells in Bangkok, and the marrow cells in Germany without any known benefits.

The delivery method is just as debatable as the cell type. Although peripheral or marrow are the only real current considerations for cardiac treatment (cord cells are just too unknown), whether to use regular IV, catheter or direct injection continues to be a real question. In the case of heart tissue damage, there is very strong argument for direct injection, either via robotics or via surgery.

Unfortunately, we just don't know what the stem cells do, or where they go after an IV or catheter injection. One school of thought is that you put the cells in the bloodstream anywhere and they find their way to the damage. Another school of thought is that you need to put the cells right where the damage is. In the case of catheter injection, I have always wondered why, if the cells are catheter injected into cardiac vessels, are they not just pumped out into the entire bloodstream within a few seconds later?

I have little cardiac tissue damage, just a bunch of bad cardiac blood vessels.
When I went to Bangkok, I wanted the robotic direct injection, but it wasn't available, so I got the catheter injection. When I went to Germany, I wanted the catheter injection, but it was considered too risky in my case, so I got the IV infusion. The only method I never got was the direct injection.

I know that you have done everything you can for Erika, and will do anything that you feel that she can tolerate, but I don't know of any options left for you to explore that you haven't already. The direct injection is done in Thailand and in India, both even further away for you, and in countries that I either wouldn't return to or wouldn't go to. I don't know whether Dr. Grekkos does direct injection, as I had severe communication issues with his office, and since he was using Theravitae as a lab, I would not have agreed to try their method a second time. I also can not understand how he can charge even more money than Theravitae does, when they are one of the most expensive companies to receive a stem cell treatment from.

However, I do understand that the cost is not the issue in the case of your daughter. I had many issues with Theravitae that were not related to my not seeing positive results from the treatment. Had my overall experience with them been better, the non-improvement of my health would have not been a factor, since stem cell treatments are hit-and-miss. There are quite a few people that have been treated by Theravitae that claim to have improved dramatically, and I can not dispute those claims.

I know you will do what you feel is best for her, and only wish that she had a better current prognosis.

I wish you and her the very, very best.

Please keep us updated.

 

[barbara]

Dr. Fernandez?

Harv and Marcia - Does Dr. Fernandez do what Erika is needing? If the only problem with him is communication, by all means I would pay an interpretor to intervene and at least check this out. I do worry about the cost also. It is out of line with what it should be, however, if this is not a factor, than it can be disregarded in Erika's case, but perhaps not for others. The trip to Argentina would be more difficult than the Dominican Republic, but perhaps not that much more difficult. It is just a thought. The real problem with Dr. Fernandez has been communication. He is supposed to be one of the best stem cell doctors otherwise, especially for cardiac. This is just my two cents, but I shudder at the cost that is involved with the Dominican Republic. It shouldn't be this way.

 

[hlichten]

Harv and Marcia - Does Dr. Fernandez do what Erika is needing? If the only problem with him is communication, by all means I would pay an interpretor to intervene and at least check this out. I do worry about the cost also. It is out of line with what it should be, however, if this is not a factor, than it can be disregarded in Erika's case, but perhaps not for others. The trip to Argentina would be more difficult than the Dominican Republic, but perhaps not that much more difficult. It is just a thought. The real problem with Dr. Fernandez has been communication. He is supposed to be one of the best stem cell doctors otherwise, especially for cardiac. This is just my two cents, but I shudder at the cost that is involved with the Dominican Republic. It shouldn't be this way.

I don't know if he does anything for pulmonary, and he uses marrow, not the peripheral blood that is being proposed to be used. I do have a real problem with people agreeing to pay $50,000 for a treatment, as doctors who can ask this much and get it will keep doing so, and I personally consider the amount to be pure robbery. My opinion only. Fernandez or his crew would be worth talking to, since he was doing treatments somewhere other than Argentina also. Was it El Salvador, where he was charging a little bit more. Fernandez seemed to quote a different amount for every patient, I was quoted $18,000. The good thing about his treatments are that nothing gets sent off to any lab. His lab is right there where he is, the marrow gets extracted, and a couple hours later gets implanted. You could try to contact him and see what reply is received. His representative tries to communicate as well as possible, it just wasn't effective enough for me. I got the impression that they just didn't care if I chose them or not, which may or may not have been the true sentiments that they were trying to portray. You really need someone fully Spanish speaking to communicate with them, someone fluent enough to understand all medical jargon.

I don't want to throw a damper on any planned treatment for Erika or any other patient, but paying $50,000 for a stem cell treatment puts far too much focus (for me) on money, and $50,000 is a huge amount of it. It sounds to me like a doctor who is trying to get rich very quickly, and is preying on people who are desperate.

In this case, he is charging an extra $15,000 for the luxury of the patient not having to travel to Bangkok. I understand that Erika could never make that trip, so, if you feel that the Theravitae lab's technique could be viable for her, then paying the extra money is understandable.