This will be my last post for awhile. I think giving a visual status on a regular basis would be the blogging equivalent of watching paint dry. I have no reason to think Dr. Sapse does not truly believe I will receive results without further treatment. There would be a clear financial incentive for him to tell me otherwise. For now I have decided to “wait and see”, no horrid pun intended.
However, this could very well be an extremely long term process. And, with something so experimental, how do we measure success? Even if I maintain my vision for years, who’s to say my disease process is not at a point where that would have happened on its own? Short of a dramatic, measurable, sustained improvement in a relatively tight time frame, it is going to be impossible to come to any clear conclusions on the treatment’s efficacy. It is difficult to do that based on one person’s experience anyway.
So, dearest RPers, there are many things to consider when embarking on such a journey. Cost is a big one. Many of us are living on fixed incomes or are underemployed. With regards to this particular protocol, there are inconsistencies. On Dr. Gonzalez’s website it states: "The time for the next implant is determined by the condition of the patient, it is normally between six months to a year." Yet, Dr.Sapse has told me I do not need to return.
Using this protocol for RP is in the earliest stages of its infancy. In short, when you are a pioneer (or you can substitute “crazy person” depending on your perspective) there are no set paths. It is up to you to use the intellect God gave you to come to your own conclusions.
Another consideration is your emotional well being. If you are fragile, have not worked through your RP issues and are expecting a miracle cure, then I recommend staying home. Dr. Gonzalez puts it this way,”This clinic is not responsible for unfounded or unrealistic expectations or claims created by anyone else.”
This is totally unregulated territory. You are putting an enormous amount of trust in people who have virtually no oversight. Be an adult and realize what that entails. Most importantly, get on your knees and pray to God for guidance.
I felt led to go down this path. There is no point to guessing at God’s will. My brain is the size of a pea relative to the galaxies that represent His omniscience. I am very flawed. I always want my interpretation of His will to have a certain end. I have no idea where this will end. I can only hope someone, somewhere, has gleaned something from this experience. I know I have gained so much from sharing it with you.
I personally believe true empathy is the result of adversity. The Bible states:
2 Corinthians 12:9-My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses. (NIV)
It is only through feeling vulnerable that we can identify with those who are “weaker” than us. So, while this disease has been the bane of my existence in many ways, it has also been the best teacher I have ever had.
It is like the teacher in high school whom you perceived as a wicked taskmaster then, years later, you realize this seemingly unreasonable and demanding teacher was the person from whom you learned the most.
Don’t get me wrong, I hate this disease. I hate what it steals from people. I hate what it has taken from me. I hate that people who can do something have not made it more of a priority. Then, I realize the reason I even care about the rest of you is because of it.
I have the email addresses of people who have written me. I will contact you if I have documentation of anything Earth shattering. I have decided I will only blog improvements I can document. I will include my functional improvements and perceptions only when paired with exam data. I will also notify you and publish any abnormal lab tests.
The only thing that would prevent me from contacting you would be computer issues. So, I will commit to updating this blog with objective data regardless of if it is good, bad or indifferent. If you are interested, check back periodically in case I have lost your address.
In the meantime, thank you for sharing in this experience with me. As Dale Carnegie said, “Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all." We may not be in a position to “keep trying” but we can always choose to keep hoping.
Peace, Shalom and Namaste
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11 comments:
You are an inspiration to us all. Not only in your apparent passion in pursuing a trearment, but also in your honesty (sometimes painful honesty) that you demonstrate in how you are proceeding.
Stay true to your course.
Nat - I have been neglect at keeping up on the posts and just finished reading a weeks worth. Natalie - I love you so dearly for the inspiration, hope and determination you bring to fighting this disease. In the 18 years I have known you, there is one thing you do that I have always admired. It is your ability to stir others. Your actions may seem like tiny ripples in the water but a greater movement begins when one person dares and dares - again and again and again. That is you my dear Natalie. I have never been so proud to call you my friend.
Love - Nic
It would be helpful if you did stick to just objective findings and start from the beginning. For example, nothing you have said really means anything to readers if we don't know how severe your RP was before the implant. What was your visual acuity, visual field, degree of loss in the areas of depth perception, reading functionality, orientation and mobility, and what about contrast and glare - major problems for RPers. Thenm tell us the improvements in each of those areas instead of taking a shotgun approach. Also, why did you go to Mexico instead of Las Vegas for the implant? And why did they not tell you before the implant to expect a "yo-yo" effect. especiaslly since Dr. Sapse claims to have done this implant on RP patients for over 20 years?
When Dr. Gonzalez said. "This clinic is not responsible for unfounded or unrealistic expectations or claims created by anyone else”, then that leaves us with what they DO clain , all stated in public record for all to see, which is that the StemCell Pharma implant produces "impressive results" and "cures" all kinds of diseases. I would expect nothing but what the StemCell Pharma clinic has said.
Hey, I have been reading your blog and thought I would check out this clinic you went to. What strikes me as odd is that you report they have told you that their implant is experimental, and I did see on their website that they have started a plan for what appears to be clinical trials on humans. But, I have never seen clinical trials conducted after the fact, usually the trials occur first before selling to the public. What is going on here?
I am offended by your remark telling us to be an adult. It does not take a genius to see that you obviously have a problem with the decision you made and you also seem to be engaging in a great deal of rationalizing as well. Have you dealt with your RP issues?
Hi Anons and Nic,
To positive Anon and Nic, thank you so much for your support.
To other Anons,
You certainly have a lot of passion. I hope your antagonism is rooted in a genuine desire to protect those with RP. Holding on to that hope regarding your intent is the only reason I reply to you.
With regards to publishing the details of my medical records, my retinal specialist can do that if I have documented results.
As to how I have recorded this journey, it is just one person's account of an experience.
This is not part of an FDA approved clinical trial. It is a private, commerical venture. As to the legalities and other related issues with Sapse or Gonzalez, talk to them.
As for me offending you, please forgive me. That certainly was not my intent. This is just one person's corner, that is it.
Take care,
nat
I have yet to read any useful comments from the offended anons. Perhaps, there are some great suggestions they would be willing to share in future commentary. I love how people tell you to use objective findings when you are going blind. Your only RP issues stem from knowing your body has the capability of healing and believing the technology is there. You have experienced significant visual improvements on several occasions so you know it is within your reach. Stay strong and true to your beliefs. I love your spirit! Let's hope it inspires people to share and offer suggestions!
whoa whoa there! I have read the past comments on this post and think all need to calm down and perhaps read up on some internet etiquette. it is easy to erroneously attribute emotions to impersonal forms of communication such as here, in emails, etc. all I see are simple and intelligent questions being asked and suggestions being given. to the author, i don't think anon was asking for your medical hx, but rather more "objective" information as opposed to "subjective" philosophizing. that's my 2 cents worth, hope it helps.
Jake,
Thanks for the reminder. It is good to have you. I believe you are correct about Anon's intent regarding objectivity and, as I reread what s/he said, I realize he was simply agreeing with what I stated. I appreciate the mediating influence, however this blog will never be absent of philosophiizing. :)
I also thank you for the reminder Jake!
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