Kairit, our family soldier in the fight against ALS, was released a day early from the X-Cell Center hospital. Except for the slight fever last night and a sore neck from the positioning of her head during surgery, she has had no complications.
When I walked into her hospital room at nine this morning, she had already showered, had breakfast, put on a little make-up, and settled into the comfortable hospital bed to watch TV. The doctor had been in to see her and was very happy with her progress.
When I walked into her hospital room at nine this morning, she had already showered, had breakfast, put on a little make-up, and settled into the comfortable hospital bed to watch TV. The doctor had been in to see her and was very happy with her progress.
I gave Kairit a little shoulder massage and we walked (Kairit with Anto's help of course) to the reception area for a good cup of coffee. I met Margeurite, one of the administrators at the center. There are two locations in Germany but the owners are from the Netherlands. Marguerite said many of the ALS patients they have seen have worked in jobs involving toxins. While not everyone who works with chemicals gets ALS, obviously the immune systems of some people
can't handle the poisons.
Kairit said her first symptom was the feeling that her muscles were like popping corn all over her body, especially her legs. They never stopped. The popcorn feeling was intense at the beginning but has abated over the past nearly two years. Kairit was an artist working with paints and pencils but she also worked in a flower shop for 5 years.
Is ALS caused by toxins? Doctors may say they don't know but we think it may be. Our environment is polluted and our workplaces and homes are filled with poisonous substances. We are not the first to think toxins may be responsible for many diseases such as cancer, immune system disorders, or motor neuron diseases. The list goes on.
Perhaps we could deal with the consequences if there were hope for survival but there is no treatment for ALS. Kairit knows that this amazing stem cell procedure she underwent is not a cure. We will have to wait and see how successful it was...but she has at least had a therapy that may bring some improvement if the detoxifying she has done the last several months has helped her, if it's even what's needed. In any event, Kairit - but for ALS - is healthier than she was six months ago. If the new stem cells are viable enough....So much emotion involved as I am
reading the doctor's report on the transplantation:
On 10:03:10 (Mar. 3/10)
stem cells were implanted in general anesthesia via neuroendoscopic
ventriculocisternostomie 3.0ml in high concentration: 1.0 ml in basilar cistern,
1/2 ml in third ventricle, rest in side ventricle an solution intraparenchymal.
We have transplanted 4 650 000* CD 34 cells (Vitality 90.1%)
In the United States they have begun clinical trials to see if the lumbar puncture procedure is safe enough. That phase will take two years. Then phase two another two years...then phase three...and maybe after 5 or 6 years the FDA will sanction this procedure which they are now doing at the X-Cell Center. Why can't the doctors in the USA come here with an FDA official and check it out? See what they do?
My new Canadian lawyer acquaintance who has ALS was also in the intensive care when Kairit was there. He was able to have the stem cell implantation through the occipital area. He was doing well and released to his brother for two days of rest before heading home. We saw other patients as well following stem cell procedures, including two young children. We don't know what medical problems they were being treated for but we can assure the reader they looked no worse for the wear. How well the stem cell implantation works is yet unknown for these patients but others have benefitted.
Surely when people's lives can be improved it would behoove the medical professions all over the world to work together, wouldn't it? ALS is a horrible disease that attacks the muscles, causes them to atrophy, with the most severe patients losing their ability to walk, use their arms or hands, swallow and breathe while keeping their minds intact. I don't care where the best therapy comes from to help my niece and other ALS patients. I don't care if the cure for ALS comes from China, Germany, Russia, Mexico, Canada, or the U.S.A.
Surely when people's lives can be improved it would behoove the medical professions all over the world to work together, wouldn't it? ALS is a horrible disease that attacks the muscles, causes them to atrophy, with the most severe patients losing their ability to walk, use their arms or hands, swallow and breathe while keeping their minds intact. I don't care where the best therapy comes from to help my niece and other ALS patients. I don't care if the cure for ALS comes from China, Germany, Russia, Mexico, Canada, or the U.S.A.
I am going out on a limb here...but the lumbar puncture is safe, as is the occipital procedure and the neuroendoscopic stem cell implantation done by skilled neurosurgeons under FDA-type rules and regulations. At the X-Cell Center they use the patient's own bone marrow to harvest the cells. Maybe in the future stem cells from other sources may prove more beneficial but right now this seems to hold hope for some. Yes, it's a private facility and it costs money to do this but Kairit doesn't have anywhere else to go.
Kairit, Anto, and I will spend our next twenty-four hours watching television, reading, snoozing,
eating, and talking about the incredible week we have had in the multicultural clinic. There are people from many countries performing different specialties. The waiting room is just as multi-ethnic and when it comes to health and good care, we all look the same.
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