It's been a whirlwind couple of weeks. I found out yesterday that my Dad's health insurance is going to cover me now that I've lost my health insurance. Luckily because I live with them I can be insured under their policy until I turn 26. At which time I will have to go back through the issue of Cobra and state insurance pools because as of right now I'm can't gain insurance private means.
Valentines day has come and gone and I'm happy to report that my Mom and Cookies for a Cure earned $518 in sales and donations to go towards my stem cell transplant. That puts Pocket Change Cure for Devic's NMO now just over the $1000 mark in donations.
I finally received all the paperwork for my long term disability claim. I'm hoping to learn something here in the next few weeks.
Although slightly bored with the lack of things to do when not subbing, I'm glad to report that my health has been fine. Rest goes a long way... it's amazing how just trying to live a normal life can wear out a person who has Devic's and cause major issues.
Wednesday, February 16, 2011
Sunday, January 30, 2011
Update
It's been awhile since I've posted or even updated the donation tracker, it's just that a lot of things are have been going on here lately. I started a new job, I'm now subbing for QISD. I must say it has taken some getting used to being out in the work environment after working from a home office for the past year. The first day didn't go so well I ended up having a panic attack but luckily that was on a Friday and I rested up over the weekend and tried again on Monday and was able to make it through the whole week with no issues. I'm really enjoying subbing... it not only gets me out of the house but it's also teaching me how to deal with my stress levels since that effects NMO patients greatly.
As for the whole disability paperwork I got a call from the doctor yesterday and she said she agrees that me going on disability until after the stem cell transplant would be the best thing. Now I'm just waiting on them to mail the paperwork back to me so I can send it all off and start the approval process.
I'm still kind of lost in the land of insurance but the company that handles my insurance is supposed to be calling me Monday to help me sort through all of my options. As of right now we're still trying to decide if the best course of action would be for me to go on Cobra or to be switched to my parents health insurance plan for the next two years.
I still have not sent my paperwork off to Northwestern University I'm going to try and call to get all my medical records this week. Ugh! That in itself is a job I'm not looking forward too. However I have to get it done if I want to get the ball rolling on getting approved for the transplant.
As for other news health wise I'm doing well just a little on the tired side because of going back to work, I'm praying that my body will eventually adjust to this since fatigue is one of the major side effects of Devic's NMO that I fight with on a daily basis. Cookies for a Cure my Mom's part of the fund raising efforts has really taken off... she's been working long days and long nights to decorate all the cookies that have been ordered.
There's a quick update I have some other posts that I'm working on and hope to get those up tonight... we'll see how that goes. <3
As for the whole disability paperwork I got a call from the doctor yesterday and she said she agrees that me going on disability until after the stem cell transplant would be the best thing. Now I'm just waiting on them to mail the paperwork back to me so I can send it all off and start the approval process.
I'm still kind of lost in the land of insurance but the company that handles my insurance is supposed to be calling me Monday to help me sort through all of my options. As of right now we're still trying to decide if the best course of action would be for me to go on Cobra or to be switched to my parents health insurance plan for the next two years.
I still have not sent my paperwork off to Northwestern University I'm going to try and call to get all my medical records this week. Ugh! That in itself is a job I'm not looking forward too. However I have to get it done if I want to get the ball rolling on getting approved for the transplant.
As for other news health wise I'm doing well just a little on the tired side because of going back to work, I'm praying that my body will eventually adjust to this since fatigue is one of the major side effects of Devic's NMO that I fight with on a daily basis. Cookies for a Cure my Mom's part of the fund raising efforts has really taken off... she's been working long days and long nights to decorate all the cookies that have been ordered.
There's a quick update I have some other posts that I'm working on and hope to get those up tonight... we'll see how that goes. <3
Wednesday, January 19, 2011
Small Hands and Large Plans
My hands are small... really small, but I'm a small person so they fit me. However his hands are big, they're also nail scarred. I don't mind though cause without those scars he wouldn't have been able to save my life or carry my burdens. I knew when I started down this path with Him that it wouldn't be easy... it's okay though I won't give up cause he's holding my hands helping to steady each step. I look at my hands some days and wonder how hands so small could change the world, but that's when he tells me that it's not about changing the world it's just about reaching out to one more person. I'm lost somewhere among LTD forms, cobra premiums, and a need to understand things. I want to complain but instead he still gives me a reason to rejoice... After about 2 months of having a blind spot in my left eye I'm happy to report that my vision is back! It's a little blurry but when you're starting to compare your troubles to Job's, it's a small victory that I'll take.
In a week I'll be 24... I'm facing many issues that I never thought would cross my path, much less at this age. I started this blog with the full intentions of being honest about every step. I still intend to do that, I just need some time to gather my thoughts. It doesn't help that my best friend is away training for military purposes but thank God for text messages. <3
In a week I'll be 24... I'm facing many issues that I never thought would cross my path, much less at this age. I started this blog with the full intentions of being honest about every step. I still intend to do that, I just need some time to gather my thoughts. It doesn't help that my best friend is away training for military purposes but thank God for text messages. <3
Monday, January 17, 2011
Yes you're in the right place!
Yes you're in the right place... I decided to devote my blog solely to Devic's NMO and my journey to get approved for a stem cell transplant. I changed the name and the look of the blog. The web address also changed for any of those that might have had this blog linked on your website. Sorry for any inconvenience this may have caused but I wanted to go ahead and change things now to make it easier for people to know what the blog is actually dedicated to. I promise I won't go changing the name on you guys again. :)
Many people have asked if it would be okay for them to post my link on their site or Facebook page, the answer is yes. I appreciate each person who helps to spread the word not only about my personal goal but also the disease in general. I hope that my venture will help in making Devic's NMO a little less unheard of. It is very uncommon for a doctor to have even heard of this disease much less the general public and due to that fact many individuals go undiagnosed or misdiagnosed, my hope is that as I go through this process I could bring awareness and eventually new treatments and a cure to the table.
Many people have asked if it would be okay for them to post my link on their site or Facebook page, the answer is yes. I appreciate each person who helps to spread the word not only about my personal goal but also the disease in general. I hope that my venture will help in making Devic's NMO a little less unheard of. It is very uncommon for a doctor to have even heard of this disease much less the general public and due to that fact many individuals go undiagnosed or misdiagnosed, my hope is that as I go through this process I could bring awareness and eventually new treatments and a cure to the table.
Sunday, January 16, 2011
My Story Thus Far
If you don't know me personally then you probably are wondering why I want to get approved for a stem cell transplant. Here's a little bit more about me and what I've been through in the past 3 years.
I lived a pretty ordinary life... actually I take that back I had it all, well I sure thought I did at the time. Looking back I laugh at the fact that I could have been happy but honestly 3 years ago I was on top of the world. Never did I imagine that God would rock the very foundations I had placed everything on.
It was May of 2008 and I was 21. I had just gotten saved a year before. Life it seemed could only move forward at the time. I was living in Waxahachie with my boyfriend at the time and I was driving the car of my dreams a red Nissan 350z. I was working for Cohesive Automation in the accounting department and also training to be a technician under my Father at the same company. This was my dream job... I had the car, the job, and I was making more money than your average 21 year old. It would all change in just a matter of months.
All I wanted to do was sleep. What seemed like a perfect life and I was wondering if I could possibly have missed something. I had the checklist all checked off, so why was I so tired all the time and why did I not want to hang out with friends like before? Things would get better, they had to. Months passed I was still tired and now I couldn't eat. Everything made me nauseous, even the thought of food. Something was wrong that much I knew. I went to the doctor they tested me for mono and did some basic blood test. It all came back normal, so the doctor at a loss sent me for a sleep test. The results were that I was sleeping. It's all in my head then... great I'm sure things will get better eventually.
Things weren't getting better and my boyfriend and I were growing apart. I decided one day I needed a change and I packed my things and came home to my parents house. I had been moved back in with them a couple of weeks when life came to a screeching halt. I complained daily that my hands and arms hurt to touch and my parents thought I was crazy. My mom told me to go to the doctor and ask about Fibromyalgia, really she just wanted me to stop complaining. It was Wednesday, which meant that I was working for my Dad on job sites as a technician, he expected 110% effort when I worked for him. He wasn't getting it that day, all I knew was my neck was killing me and wearing a hard hat and running around a construction site was not on my list of "want to's" that day. I sat like a bump on a log just praying the day would end and I could go back to bed. When we finally got home I took a muscle relaxer because I thought I had pinched a nerve in my neck. Off to bed I went praying that I'd be fine come morning.
Morning came... May 1st, 2008. My whole body hurt to touch and although I had to go I couldn't void my bladder. My mother called a friend of the family who happens to be a nurse... her advice was to take me to the ER if I couldn't void my bladder because that sounded neurological. Off to the ER we went where they tested me for Syphilis and when that came back negative the on call ER doctor fought to get me an MRI. I will never be able to think that doctor enough! The MRI showed lesions up and down my spine and a Syrinx that was growing. For those that don't know a lesion is scar tissue meaning that something was attacking my spine and causing it to scar and a Syrinx is when the spinal cord swells and allows the spinal fluid to leak outside of the core. Needless to say I needed specialized care... so I was sent to Parkland.
Parkland didn't go so well I was in a ton of pain and they refused to give me any pain meds until a neurologist could see me. I guess it was busy cause it was about 6 hours before a team of neurologist could come and check me out. Another 6 hours later and they were shipping me out the door with a prescription for low dose pain meds and telling me to come back in three days for brain surgery. Between poking me and telling me that I needed brain surgery they also forgot to void my bladder.
My dad wanted a second opinion and some rest. So we went home to catch a few hours sleep and then it was off to Baylor for a second opinion. At this point I just wanted someone to stop the pain. I couldn't sit down, I couldn't have anyone touch me, I couldn't even touch myself anywhere. My whole body hurt! Never before had I been in so much pain and to top it all off I still couldn't pee! The ER nurses freaked out when they took my blood pressure and I was rushed to a room where finally I had pain meds and folly. I was admitted and the specialist came out of the wood works. I had neurologists, internal medicine, and infectious disease doctors. I gave out about 40 viles of blood... I was being tested for anything even though I had never been out of the country. Finally a neurosurgeon was called in. He came to the conclusion that I needed brain surgery. Awesome looks like I'm going under. The day came and he decides he can't cut me open that he's not 100% sure that the Syrinx is the cause of all my problems. Now what? One of the doctors decides to give me three days of IV steroids and that I have Transverse Mylitis. The steroids work and I'm released from the hospital on May 8th, 2008. I leave with a diagnosis of TM and am told that more than likely it will never occur again. I only wish that had been the case.
I take some time off to recover and try to regain the strength in my hands, but then I'm back to work and life is going back to normal. Well normal but I start seeing a neurologist that specializes in Multiple Sclerosis. A couple of months down the road and I start having strange symptoms again... the MS doc thinks I have RRMS but she isn't sure and thinks that I should go to the Mayo Clinic or UTSW. The Mayo Clinic has the first opening so my parents and I fly out to Arizona. Tests are run and we meet with doctors who decide that I have RRMS and I should start the treatment for that. I choose to use Copaxone which means I have to give myself a shot everyday. It's a new normal... but tons of people do it and you never even know somethings wrong so I'll be alright. Copaxone doesn't seem to be working and I develop Optic Neuritis. Steroid treatment after treatment and I'm tired and still have strange symptoms occurring. My neurologist is at a loss she says I should try chemo to stabilize me. I start Cytoxan and I get infused once a month.
It just so happens that I never got around to canceling the appointment I made with UTSW MS Clinic. My mother decides that a second opinion cant hurt so I go to the appointment and tell my story. The doctor listens and then floors me by saying that she doesn't think I have MS that she thinks I have Devic's NMO. WHAT!?!?! I'm giving myself these shots everyday for nothing? A new plan is made... I get diagnosed with Devic's NMO and I stop giving myself the shots. I stay on chemo for 6 months at which point we decide I'm not stable enough.
Next step... Rituxan it's a different chemo and I start getting infused once every 3 months. After a year on Rituxan however we look back and see that I'm better for a month or so and then I start getting sick and run down and it's back and forth. Time for a new plan... CellCept is a pill form of chemo that I take everyday. Finally I'm stable for 6 months but I'm not able to work full time because I'm suffering from major fatigue and things just aren't like they used to be. The life of the average 23 year old is not what I'm living.
In August I fly to LA to attend the 2nd Devic's NMO patient day. I hear about different treatments most of which I've already tried to no avail. However one doctor talks about stem cell research and the few patients that have undergone the transplant. The results... nothing short of amazing, they're cured! No longer do they take any medications or do they even see neurologists. If they didn't walk before they're walking now and they don't suffer from the daily neuropathic pain. Fatigue that's not an issue for them either.
I leave LA knowing that something is on the horizon. I'm hopeful that a cure is around the corner but I can wait till later on down the road cause my case isn't that far advanced. I can still walk and I'm not blind, I might not be able to have the life I want but I'm stable. The earthquake isn't over there is always after shocks.
Its now December of 2010 and my eyes start to hurt constantly... I've been down this road before so it's off to the doctor where they tell me I have Optic Neuritis in both eyes. I do 5 days of IV steroids. Unfortunately that doesn't take care of the inflammation and the pain is still there. Since with Devic's NMO your vision can be there and gone in under 4 hours treatment is needed fast. I'm admitted to the hospital and it's decided that I'll under go plasmaphersis. Awesome they put a line in my jugular vein in order to pull the plasma out of my body and replace it with a substitute. I end up going through 5 treatments to make sure they get all the plasma out of my body and thus all the antibodies that are attacking my optic nerves. Too bad the surgeon nicked my lung while putting my line in and my lung collapses. Chest tube is inserted and when the lung doesn't heal on its own a blood patch is applied. Back home finally and I feel on top of the world.
I'm good for about three days and then I start to go down hill. One of the biggest issues with Devic's NMO is that a simple UTI can cause your body to go into a flare. This happens to me and all the steroids I was taking for the Optic Neuritis causes me to go down hill and I get dehydrated. I spend 4 more days in the hospital trying to get my system back to normal after the steroids.
So after 3 years, 4 hospitalizations, 3 different types of chemo, 1 round of plasmaphersis, and countless daily meds I've decided that I'm going to try to get approved for the Stem Cell Transplant.
I'll be 24 in 9 days and I just want to be able to work a full time job and do the things in life that other 24 year olds are doing. I want to be able to go out with my friends and not get tired after the first hour. I want to meet people and go out on dates without having to explain my medical condition always fearing that it will scare them off. I just want to live this life to the fullest and take every opportunity I get. Guess that's my story up until now.
I lived a pretty ordinary life... actually I take that back I had it all, well I sure thought I did at the time. Looking back I laugh at the fact that I could have been happy but honestly 3 years ago I was on top of the world. Never did I imagine that God would rock the very foundations I had placed everything on.
It was May of 2008 and I was 21. I had just gotten saved a year before. Life it seemed could only move forward at the time. I was living in Waxahachie with my boyfriend at the time and I was driving the car of my dreams a red Nissan 350z. I was working for Cohesive Automation in the accounting department and also training to be a technician under my Father at the same company. This was my dream job... I had the car, the job, and I was making more money than your average 21 year old. It would all change in just a matter of months.
All I wanted to do was sleep. What seemed like a perfect life and I was wondering if I could possibly have missed something. I had the checklist all checked off, so why was I so tired all the time and why did I not want to hang out with friends like before? Things would get better, they had to. Months passed I was still tired and now I couldn't eat. Everything made me nauseous, even the thought of food. Something was wrong that much I knew. I went to the doctor they tested me for mono and did some basic blood test. It all came back normal, so the doctor at a loss sent me for a sleep test. The results were that I was sleeping. It's all in my head then... great I'm sure things will get better eventually.
Things weren't getting better and my boyfriend and I were growing apart. I decided one day I needed a change and I packed my things and came home to my parents house. I had been moved back in with them a couple of weeks when life came to a screeching halt. I complained daily that my hands and arms hurt to touch and my parents thought I was crazy. My mom told me to go to the doctor and ask about Fibromyalgia, really she just wanted me to stop complaining. It was Wednesday, which meant that I was working for my Dad on job sites as a technician, he expected 110% effort when I worked for him. He wasn't getting it that day, all I knew was my neck was killing me and wearing a hard hat and running around a construction site was not on my list of "want to's" that day. I sat like a bump on a log just praying the day would end and I could go back to bed. When we finally got home I took a muscle relaxer because I thought I had pinched a nerve in my neck. Off to bed I went praying that I'd be fine come morning.
Morning came... May 1st, 2008. My whole body hurt to touch and although I had to go I couldn't void my bladder. My mother called a friend of the family who happens to be a nurse... her advice was to take me to the ER if I couldn't void my bladder because that sounded neurological. Off to the ER we went where they tested me for Syphilis and when that came back negative the on call ER doctor fought to get me an MRI. I will never be able to think that doctor enough! The MRI showed lesions up and down my spine and a Syrinx that was growing. For those that don't know a lesion is scar tissue meaning that something was attacking my spine and causing it to scar and a Syrinx is when the spinal cord swells and allows the spinal fluid to leak outside of the core. Needless to say I needed specialized care... so I was sent to Parkland.
Parkland didn't go so well I was in a ton of pain and they refused to give me any pain meds until a neurologist could see me. I guess it was busy cause it was about 6 hours before a team of neurologist could come and check me out. Another 6 hours later and they were shipping me out the door with a prescription for low dose pain meds and telling me to come back in three days for brain surgery. Between poking me and telling me that I needed brain surgery they also forgot to void my bladder.
My dad wanted a second opinion and some rest. So we went home to catch a few hours sleep and then it was off to Baylor for a second opinion. At this point I just wanted someone to stop the pain. I couldn't sit down, I couldn't have anyone touch me, I couldn't even touch myself anywhere. My whole body hurt! Never before had I been in so much pain and to top it all off I still couldn't pee! The ER nurses freaked out when they took my blood pressure and I was rushed to a room where finally I had pain meds and folly. I was admitted and the specialist came out of the wood works. I had neurologists, internal medicine, and infectious disease doctors. I gave out about 40 viles of blood... I was being tested for anything even though I had never been out of the country. Finally a neurosurgeon was called in. He came to the conclusion that I needed brain surgery. Awesome looks like I'm going under. The day came and he decides he can't cut me open that he's not 100% sure that the Syrinx is the cause of all my problems. Now what? One of the doctors decides to give me three days of IV steroids and that I have Transverse Mylitis. The steroids work and I'm released from the hospital on May 8th, 2008. I leave with a diagnosis of TM and am told that more than likely it will never occur again. I only wish that had been the case.
I take some time off to recover and try to regain the strength in my hands, but then I'm back to work and life is going back to normal. Well normal but I start seeing a neurologist that specializes in Multiple Sclerosis. A couple of months down the road and I start having strange symptoms again... the MS doc thinks I have RRMS but she isn't sure and thinks that I should go to the Mayo Clinic or UTSW. The Mayo Clinic has the first opening so my parents and I fly out to Arizona. Tests are run and we meet with doctors who decide that I have RRMS and I should start the treatment for that. I choose to use Copaxone which means I have to give myself a shot everyday. It's a new normal... but tons of people do it and you never even know somethings wrong so I'll be alright. Copaxone doesn't seem to be working and I develop Optic Neuritis. Steroid treatment after treatment and I'm tired and still have strange symptoms occurring. My neurologist is at a loss she says I should try chemo to stabilize me. I start Cytoxan and I get infused once a month.
It just so happens that I never got around to canceling the appointment I made with UTSW MS Clinic. My mother decides that a second opinion cant hurt so I go to the appointment and tell my story. The doctor listens and then floors me by saying that she doesn't think I have MS that she thinks I have Devic's NMO. WHAT!?!?! I'm giving myself these shots everyday for nothing? A new plan is made... I get diagnosed with Devic's NMO and I stop giving myself the shots. I stay on chemo for 6 months at which point we decide I'm not stable enough.
Next step... Rituxan it's a different chemo and I start getting infused once every 3 months. After a year on Rituxan however we look back and see that I'm better for a month or so and then I start getting sick and run down and it's back and forth. Time for a new plan... CellCept is a pill form of chemo that I take everyday. Finally I'm stable for 6 months but I'm not able to work full time because I'm suffering from major fatigue and things just aren't like they used to be. The life of the average 23 year old is not what I'm living.
In August I fly to LA to attend the 2nd Devic's NMO patient day. I hear about different treatments most of which I've already tried to no avail. However one doctor talks about stem cell research and the few patients that have undergone the transplant. The results... nothing short of amazing, they're cured! No longer do they take any medications or do they even see neurologists. If they didn't walk before they're walking now and they don't suffer from the daily neuropathic pain. Fatigue that's not an issue for them either.
I leave LA knowing that something is on the horizon. I'm hopeful that a cure is around the corner but I can wait till later on down the road cause my case isn't that far advanced. I can still walk and I'm not blind, I might not be able to have the life I want but I'm stable. The earthquake isn't over there is always after shocks.
Its now December of 2010 and my eyes start to hurt constantly... I've been down this road before so it's off to the doctor where they tell me I have Optic Neuritis in both eyes. I do 5 days of IV steroids. Unfortunately that doesn't take care of the inflammation and the pain is still there. Since with Devic's NMO your vision can be there and gone in under 4 hours treatment is needed fast. I'm admitted to the hospital and it's decided that I'll under go plasmaphersis. Awesome they put a line in my jugular vein in order to pull the plasma out of my body and replace it with a substitute. I end up going through 5 treatments to make sure they get all the plasma out of my body and thus all the antibodies that are attacking my optic nerves. Too bad the surgeon nicked my lung while putting my line in and my lung collapses. Chest tube is inserted and when the lung doesn't heal on its own a blood patch is applied. Back home finally and I feel on top of the world.
I'm good for about three days and then I start to go down hill. One of the biggest issues with Devic's NMO is that a simple UTI can cause your body to go into a flare. This happens to me and all the steroids I was taking for the Optic Neuritis causes me to go down hill and I get dehydrated. I spend 4 more days in the hospital trying to get my system back to normal after the steroids.
So after 3 years, 4 hospitalizations, 3 different types of chemo, 1 round of plasmaphersis, and countless daily meds I've decided that I'm going to try to get approved for the Stem Cell Transplant.
I'll be 24 in 9 days and I just want to be able to work a full time job and do the things in life that other 24 year olds are doing. I want to be able to go out with my friends and not get tired after the first hour. I want to meet people and go out on dates without having to explain my medical condition always fearing that it will scare them off. I just want to live this life to the fullest and take every opportunity I get. Guess that's my story up until now.
Saturday, January 15, 2011
Donation Goal
I have decided that I need to hold off on mailing my medical records out to Northwestern University. Once I have the process started I'm told it goes pretty fast. However I sat down today and did a very general calculation on costs for the 9 week stay in Chicago. Figuring in air fare, lodging, and food for Mom and myself we're looking at $20,000. I have no idea what the insurance is willing to pay for the transplant as it will cost $175,000. The case worker apparently has a pretty good winning streak when it comes to convincing them to pay 100% but I will not know till we get closer to the actual transplant date. So for now I've set my fund raising goal at $20,000. I have to admit that I was a little heart broken when I saw the figure because it seems like an impossible amount. I just have to remember God still works miracles even in a crappy economy. I have added a goal tracker to the side of my blog and will update it as donations come in.
I still have some ideas left to look into. A friend of my Dad told us today that their church actually sponsors a few hotel rooms in downtown Dallas for people who need to stay for medical purposes. I have a list of the hotels surrounding the Northwestern University and I'm going to call and find out if they have any room sponsors, if not they should offer a medical rate which I hope will bring down the trip cost significantly.
Not sure if anyone reading this has ever been through anything like this but if you have any ideas that might help please leave a comment or you can email me directly at laurenccrow@yahoo.com. Thanks in advance! <3
I still have some ideas left to look into. A friend of my Dad told us today that their church actually sponsors a few hotel rooms in downtown Dallas for people who need to stay for medical purposes. I have a list of the hotels surrounding the Northwestern University and I'm going to call and find out if they have any room sponsors, if not they should offer a medical rate which I hope will bring down the trip cost significantly.
Not sure if anyone reading this has ever been through anything like this but if you have any ideas that might help please leave a comment or you can email me directly at laurenccrow@yahoo.com. Thanks in advance! <3
Random Devic's NMO Facts:
- Often times the first symptom is nausea or hiccups that last for weeks at a time.
- If vision loss occurs it can sometimes return up to 10 months later.
- In 1894 Eugene Devic described a rare neurological disorder that resembled Multiple Sclerosis thus giving it the name Devic's NMO.
- Devic's NMO is called an orphan disease because it is extremely rare. It is said to effect 1 to 2 out of every 100,000 people! Basically that means there are 3,000 people in the United States who currently have Devic's NMO... the only issue is that most of them have been misdiagnosed with MS... I'd be surprised if even a 1/4 of that have actually been diagnosed with NMO.
Friday, January 14, 2011
Bank Account Set Up!
Finally I have the fund raising account set up for the Stem Cell Transplant program at Northwestern University in Chicago. The name of the fund raiser is Pocket Change Cure for Devic's NMO. If you would like to donate you can click on the donate button at the top of the page to use a credit/debit card or you can make checks payable to "Pocket Change Cure" and mail them to :
Now I just have to get the information out around town and come up with some fund raiser ideas. If you have any questions please feel free to email me at laurenccrow@yahoo.com.
Lauren Crow
405 Sherry St
Quinlan, TX 75474
If you are local then you can also go into any American National Bank and donate directly to the fund that way. Just let the bank know that you are wanting to donate to Pocket Change Cure. Thank you in advance to everyone who donates. For those who can't donate if you will just pray that this is the Lord's will for me to be accepted for the treatment my family and I appreciate it.
Tuesday, January 11, 2011
One, Two, Three
Basically it's the welcome packet for the Stem Cell Transplant project going on at Northwestern University in Chicago! The next step is mine, now I have to write up a paper explaining my case history and I have to gather all my medical records and have them shipped off. After which I should hear something back in 2 to 4 weeks. I thought I'd take this time to give everyone a quick run through of what I will under go if I get approved for this treatment. Here's a quick run down from week 1 to week 8 or 9.
First off I want people to be clear that there are three different types of Stem Cell Transplants available. I will be undergoing what's called an Autologous Stem Cell Transplant if accepted this means that they will harvest my OWN stem cells from my body prior and then use my body to grow them back.
- Week 1 - 2: Pre-transplant testing MRI, CT, blood test, and pulmonary function test.
- Week 2 Friday: If approved I'll be admitted for overnight chemo and released the next day
- Week 3: I'll be an staying in Chicago giving myself shots to promote the growth of my bodies stem cells and going in daily for blood work
- Week 4: I'll go in and they will collect my bodies stem cells through Pheresis. It's a simple separation technique one I just went through recently only involving the plasma
- Week 5: Rest I'll be allowed to fly back home and see my family :)
- Week 6: Admission to get ready for the transplant. The first six days I'll get IV Fluid and the four after I'll get high dose chemo
- Week 7: I'll receive my stem cells much like a blood transfusion
- Week 8-9: I wait for my stem cells to regrow and reboot my entire body
Here's to the next 6 months, one rocky road, my support system, and above all a God that won't give up on me! Stay tuned <3
Hospitals and Cookies...
I'm so tired of hospitals :( hoping to get discharged today and back to life. Well as normal as life can get when your trying to get accepted into a Stem Cell Transplant Study. This last round of hospital stays has really thrown a kink in my fund raising plans but I know all will get done in the Lord's time. I'm hoping later this week to make it back up to the bank to set up my account so that I can put a link for donations on my site. Speaking of which my Mother has decided that between now and the time we leave for Chicago all the profits from her cookies will be donated to Pocket Change Cure for Devic's NMO. She's fantastic and will be going with me to Chicago for the 9 weeks it takes to complete the Stem Cell Transplant. So if your looking for some awesome Valentines Day cookies and you want to donate to our cause you can check out her stuff here...
I'm thinking that I'll even stay out of hospitals from now until the Stem Cell Transplant so that she will have the time to make cookies for you guys. YUM! I'm making my mouth water just thinking about all the up coming cookie orders... See for every order there is always a few "extras" that become my midnight snacks :)
Monday, January 3, 2011
General Info On Devic's NMO
The following was taken from the Guthy-Jackson Foundation website that has been set up to help fund research on Devic's NMO. It is a general overview about Devic's NMO and how it effects the individual.
A Rare Approach to a Rare Disease
Historically, NMO was diagnosed in patients who experienced a rapid onset of blindness in one or both eyes, followed within days or weeks by varying degrees of paralysis in the arms and legs. In most cases, however, the interval between optic neuritis and transverse myelitis is significantly longer, sometimes as long as several years. After the initial attack, NMO follows an unpredictable course. Most individuals with the syndrome experience clusters of attacks months or years apart, followed by partial recovery during periods of remission. This relapsing form of NMO primarily affects women. The female to male ratio is greater than 4:1. Another form of NMO, in which an individual only has a single, severe attack extending over a month or two, is most likely a distinct disease that affects men and women with equal frequency. The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s.
In the past, NMO was considered to be a severe variant of multiple sclerosis (MS) because both can cause attacks of optic neuritis and myelitis. Recent discoveries, however, suggest it is a separate disease. NMO is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognized as relatively specific symptoms of NMO that are due to brainstem involvement.
The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions.
NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
Excerpts taken from: NINDS Neuromyelitis Optica Information Page. Click here to view the complete article."
You can find out more information on Devic's NMO and the current research being funded by the Guthy-Jackson foundation here: http://www.guthyjacksonfoundation.org/
A Rare Approach to a Rare Disease "What is Neuromyelitis Optica?
Neuromyelitis optica (NMO) is an uncommon disease syndrome of the central nervous system (CNS) that affects the optic nerves and spinal cord. Individuals with NMO develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord.Historically, NMO was diagnosed in patients who experienced a rapid onset of blindness in one or both eyes, followed within days or weeks by varying degrees of paralysis in the arms and legs. In most cases, however, the interval between optic neuritis and transverse myelitis is significantly longer, sometimes as long as several years. After the initial attack, NMO follows an unpredictable course. Most individuals with the syndrome experience clusters of attacks months or years apart, followed by partial recovery during periods of remission. This relapsing form of NMO primarily affects women. The female to male ratio is greater than 4:1. Another form of NMO, in which an individual only has a single, severe attack extending over a month or two, is most likely a distinct disease that affects men and women with equal frequency. The onset of NMO varies from childhood to adulthood, with two peaks, one in childhood and the other in adults in their 40s.
In the past, NMO was considered to be a severe variant of multiple sclerosis (MS) because both can cause attacks of optic neuritis and myelitis. Recent discoveries, however, suggest it is a separate disease. NMO is different from MS in the severity of its attacks and its tendency to solely strike the optic nerves and spinal cord at the beginning of the disease. Symptoms outside of the optic nerves and spinal cord are rare, although certain symptoms, including uncontrollable vomiting and hiccups, are now recognized as relatively specific symptoms of NMO that are due to brainstem involvement.
The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions.
Is there any treatment?
There is no cure for NMO, but there are therapies to treat an attack while it is happening, to reduce symptoms, and to prevent relapses. Doctors usually treat an initial attack of NMO with a combination of a corticosteroid drug (methylprednisolone) to stop the attack, and an immunosuppressive drug (azathioprine) for prevention of subsequent attacks. If frequent relapses occur, some individuals may need to continue a low dose of steroids for longer periods. Plasma exchange (plasmapheresis) is a technique that separates antibodies out of the blood stream and is used with people who are unresponsive to corticosteroid therapy. Pain, stiffness, muscle spasms, and bladder and bowel control problems can be managed with the appropriate medications and therapies. Individuals with major disability will require the combined efforts of occupational therapists, physiotherapists, and social services professionals to address their complex rehabilitation needs.References
Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
Excerpts taken from: NINDS Neuromyelitis Optica Information Page. Click here to view the complete article."
You can find out more information on Devic's NMO and the current research being funded by the Guthy-Jackson foundation here: http://www.guthyjacksonfoundation.org/
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