Stem Cells Home to Damaged RPE

I have nothing new to report. I do not perceive any further changes, positive or negative, in my vision. I have scheduled an appointment with my ophthalmologist. I am sure that will be a lot of fun (sarcasm). Oh, he is a nice guy. This situation just puts us in adversarial positions, unfortunately. He cannot condone my choices because they are outside the establishment. I cannot follow his advice. So, I guess it is a stalemate.

This situation has peaked my interest in how these cells could penetrate the blood/brain barrier. To my understanding, science considers this blood/brain barrier a major obstacle to treating the retina. Yes, I have spent entirely too much time reading about this stuff. Time that should have been spent learning to tango or enjoying fine wine, I suppose.

Anyway, I digress. I started surfing PubMed looking for stem cell research for retinal degeneration that relied on a systemic approach, meaning the cells were not put in the eye but delivered intraveneously or under the skin.

Granted, this work involves a rat and bone marrow- derived cells. If you are interested, see the abstract below:

Systemically transferred hematopoietic stem cells home to the subretinal space and express RPE-65 in a mouse model of retinal pigment epithelium damage.
Atmaca-Sonmez P,
Li Y,
Yamauchi Y,
Schanie CL,
Ildstad ST,
Kaplan HJ,
Enzmann V.
Department of Ophthalmology & Visual Sciences, University of Louisville, 301 E. Muhammad Ali Blvd., Louisville, KY 40202, USA.
Stem cell regeneration of damaged tissue has recently been reported in many different organs. Since the loss of retinal pigment epithelium (RPE) in the eye is associated with a major cause of visual loss - specifically, age-related macular degeneration - we investigated whether hematopoietic stem cells (HSC) given systemically can home to the damaged subretinal space and express markers of RPE lineage. Green fluorescent protein (GFP) cells of bone marrow origin were used in a sodium iodate (NaIO(3)) model of RPE damage in the mouse. The optimal time for adoptive transfer of bone marrow-derived stem cells relative to the time of injury and the optimal cell type [whole bone marrow, mobilized peripheral blood, HSC, facilitating cells (FC)] were determined by counting the number of GFP(+) cells in whole eye flat mounts. Immunocytochemistry was performed to identify the bone marrow origin of the cells in the RPE using antibodies for CD45, Sca-1, and c-kit, as well as the expression of the RPE-specific marker, RPE-65. The time at which bone marrow-derived cells were adoptively transferred relative to the time of NaIO(3) injection did not significantly influence the number of cells that homed to the subretinal space. At both one and two weeks after intravenous (i.v.) injection, GFP(+) cells of bone marrow origin were observed in the damaged subretinal space, at sites of RPE loss, but not in the normal subretinal space. The combined transplantation of HSC+FC cells appeared to favor the survival of the homed stem cells at two weeks, and RPE-65 was expressed by adoptively transferred HSC by four weeks. We have shown that systemically injected HSC homed to the subretinal space in the presence of RPE damage and that FC promoted survival of these cells. Furthermore, the RPE-specific marker RPE-65 was expressed on adoptively transferred HSC in the denuded areas.
PMID: 16949576 [PubMed - indexed for MEDLINE]

Safety and FDA Issues

I have been receiving emails as well as messages on forums regarding patient safety. These come from "patients" with extremely sophisticated medical vocabularies and concerns about FDA clinical trials issues.

If you are genuinely interested in learning more about placenta stem cell therapy, please access the link below. The procedure is explained in detail. There is also a reference to a journal if you have an academic interest.

If you are interested in the procedure and have safety concerns, please contact Dr. Gonzalez directly. His email is listed under "contact us" on the page below. He is in a better position to discuss these issues with you.

http://aculongevity.com/PST.html?

Read the Newspaper

While waiting at the hospital, I picked up a newspaper and read it. Since my mind was on other things, it did not strike me until later. I had just read the paper, without reading glasses.

I remember, years ago, enjoying my weekend mornings while reading multiple papers. Then newsprint became such a struggle I just stopped.

I am realizing how many concessions I have made for this disease over the years.

Visual Field Changes

Visually, the main thing I notice is the change in visual field. My life has lost its' " I Dream of Jeannie" quality. Do you remember that show? It was a childhood favorite of mine.

Do you remember how Jeannie would just appear in front of people? That is how things were for me before. People just appeared in front of me all of a sudden. Now I can see someone enter the room out of my peripheral vision.

Money Matters

In the interest of open disclosure, I would like to tell those following my story that my husband and I have invested funds with StemCell Pharma. Given that we do not have much money left after all of my medical experiments, it is not a large amount. However, I do think it is important that people are aware of it. Since this company is the only of its' kind in the US and I received results, we felt it was a good opportunity for us.

I did not foresee becoming a voice for this treatment. Had I known things would evolve in this way, I probably would not have chosen to invest as it can cloud credibility. If I receive a positive ERG, I will go to the media. At that point, my husband and I will divest ourselves of any financial interest.

However, I think one would have to be a sociopath to have RP and lie to others with it. I have done unkind things that I am not proud of, but do not qualify for this label.

This treatment is very experimental at this point in time. I am just one voice expressing one set of experiences. I cannot predict if my results will last or not, but I will continue to record changes as I experience them.

My posting over the next couple of weeks will be more sporadic. My son was born with a cleft palate which is being repaired on Friday.

Read Standard Print for Two Hours

While navigating the airport still requires the use of my compensatory "bag of tricks", I did have an exciting experience these past few days. I read a book for pleasure.

I used to be a voracious reader. I read anything and everything. One day, I noticed I no longer enjoyed reading. It had turned in to work. It is not that I could not read, it just took so long and required a lot of concentration.

Since I have modified my computer for my vision, I started using it for all of my reading. This is okay for getting information, but cozying up with a computer screen is not the same as a great novel on a rainy day. So, I just stopped reading fiction, bought an i-pod and started listening to music more often.

Before going on this trip, I went to the bookstore and purchased a book simply because I wanted to read it. I did not buy it based on the size or relative thickness of the font. Oh, this was nice.....Then, to actually be able to read it with relative ease, for two hours in a row. It was, quite frankly, a slice of my own little personal literary heaven!

Counting Blessings

I am leaving town to visit my mom for Mother's Day. It will be interesting to compare how challenging it is to navigate the airport.

I have so much for which to give thanks this Mother's Day. Two happy kids, an unconditionally supportive husband and improving vision.....Wow!

It is pretty amazing that I have had the opportunity to explore so many treatment options. To have the time, the money (okay, credit limit and coins found in couch cushions), a spouse who suspends all disbelief and supports me....God has been very good to me.

My General Health

Starting last summer, I began seeing a unique doctor of internal medicine in San Antonio. Dr. John D. Hernandez, of the Center for Wellness and Integrative Medicine, and I worked together for many months prior to my stem cell implant.

He did multiple nutritional and conventional evaluations. I took many supplements, in various dosages. Every six weeks to three months, we would assess my situation and make changes.

Under Dr. Hernandez's care, I cut out all foods linked to inflammation, such as those containing gluten and refined sugar. My diet was one of whole organic foods, mainly lean protien, fruits and vegetables.

While my vision did not change during this time, my asthma and arthritis did respond. My fingers and toes are still constantly cool, but not freezing and uncomfortable like they were.

Before I found my way to Dr. Hernandez, I was on both albuterol and corticosteroid inhalers as well as Singulaire for asthma. I relied on albuterol every three hours during the day. I had a painkiller prescription for my arthritis pain, but usually used Advil in the mornings. I caught every cold my daughter brought home from preschool. I required ten hours of sleep a day. Getting out of bed in the morning was an act of pure will.

When I received the implant in April of 2007, I was completely free of prescription drugs for the first time in years. My energy level had greatly improved. I had two minor colds in six months. These colds only lasted a couple of days, as opposed to ten days which had become my norm prior to making these changes.

Weird Feeling

The strangest aspect of this experience is going about life as usual while something remarkable is happening in my body. I find myself thinking, "Wow, I could not see that last week." The next thought will involve something totally mundane, like sorting the mail or making a phone call. Very weird...

Festival Fun

Yesterday I went to a festival with my family. I am usually not a big fan of such events. Navigating the throngs of people can be disorienting. Not only was I able to avoid running in to people, I did not say "excuse me" to any inanimate objects. I also found my way, without my husband, to the watermelon stand while pushing my son in the stroller. My husband was floored that I had the confidence to take my son, in his stroller, in an unfamiliar environment. Not only that, I was able to locate what I wanted using my vision, not my memory. Of course, watermelon is a very powerful motivator. :)

Today we had a party for my son's baptism. Numerous people commented on my increased confidence when walking and my ability to find things.

After the party, I did my weekly shopping. I notice I am able to walk, look someone in the eye and smile at the same time. This is such a blessing and feels so good. It has been a long time since I have been able to do that. Usually, I focus on walking and cannot really focus on people, much less making eye contact with them.

NIght Vision for the First Time

Last night I got out of bed. My husband was asleep, so I did not turn on any lights. Usually in this situation, I navigate by memory and feel. Normally things look inky and black. I usually do not rely on sight at all in the dark.

Instead of everything being black, it was just dark. I could see the outlines of things around me.

It was so surreal. I remember looking over to the blinds, thinking my neighbor must have bought stadium lighting or something.

There is a picture of my husband and me on our bedroom wall. Last night was the first time I have seen this picture when it was dark. I actually walked over to the picture and touched it, to verify that what I thought I saw was actually there. Not only could I see the outline of the picture against the wall, but I could make out the location of our faces. I do not remember ever seeing like this at night.

I walked in to our living room and could see where the rug stops and the tile begins. I saw where the window coverings where. I saw the bar. I could see the outline of family photos against the wall. It was still dark, but wasn't inky black, impenetrable darkness.

This is the most confirming change I have experienced so far. It is easy to second guess and doubt myself with the visual field and contrast changes I have noticed. Night vision is more concrete. It is either black or it is not. Last night it was not black for the first time that I can remember.

Contrast Vision Improves

Yesterday my daughter had dance class. After her class, we go to the dollar store. She picks out toys. We were standing in line to check out and I dropped the red ball she selected. Usually, when I drop something, it is just gone. I wait for someone else to pick it up. Yesterday the red ball landed on the counter, also red. I spotted it quickly and handed it back to the cashier.

Found the Mystery Box

Every day when I drop off and pick up my daughter at preschool, I sign her name in with my contact info for the day on a sheet. This sheet is on a clipboard. Usually it is on one of two different tables, though people put it back in different places. There is also a pen that is unattached from the clipboard. Usually, I wait for someone else to sign their child in and hold my hand out so they can hand me the pen and clipboard. This way I do not have to scan the tables to find it. Today I walked in, saw the clipboard and the pen next to it. It was a white pen on a white table top.

In my daugher's classroom there is also a box with files in it. Each child has a file with their name on it in the box. Parents are supposed to go to the box, find the file with their child's name on it and get their work. Well, the teacher tells me about this mysterious box regularly. I smile and nod. Then I promptly tell my husband to grab my daugher's work out of the box when he does occasional pick up. Today I found the box and my daughter's file in it.