Funding for Lisa's Treatment
Donation protected
Hello.... it seems we have been blessed with more friends and more Godly people in our lives than I knew we had. A friend started this GoFundMe page in hopes to help me get a stem cell transplant. It could very well stop this disease and save my life or at least give me more years with my loving husband. Although we are PRAYING insurance will pay the major costs of the stem cell transplant, we still have large expenses for 2 months in Chicago. The expenses include several weeks of hotel costs or some other type of lodging, flights to and from NC, taxis or trains to and from the airport. I will have to have help and they will need to either stay with me or have a place to stay. And honestly we do not know how much out of pocket costs we may incur. We hope to know in the next few weeks/months after hearing from the insurance company. I just wanted to modify the text to make sure it is clear and also make it clear that any unused funds will be donated to St Judes Childrens Hospital. I feel this is the most appropriate charity considering what we are going through.
I have been sick for a very long time and finally got the diagnosis after 5 years. I have been diagnosed with a very rare neurological disease called Stiff Person Syndrome. It stiffens/hardens the muscles and does not relax them back on their own. All of your organs are muscles so it can kill me or have me bedridden easily. It is closer to ALS than any other neuromuscular disease you may know, but includes constant severe pain. The neurologist in Chicago called it "a very nasty disease".
I have definitely been getting worse and it has affected my GI system, my esophagus, voice, spine, and now going into my legs, quads and calves and feet. The oxygen level is slowing down going to the muscles in my left leg which is not a good sign.
Finding doctors who know this disease has been a complete nightmare, most have never even heard of it. No doctor in Raleigh knew what to do. I have a doctor at Duke who has seen 3 (but not necessarily treated) and the more experienced doctor is at Johns Hopkins who does my consultations. He has only seen around 30 during his career. The Duke doctor found a clinical trial in Chicago and we just went for an evaluation. The evaluation was to confirm that I have SPS and to make sure I do not have anything else which could be a complication. We are not doctors, but from what we understand at this point, the clinical trial is a stem cell transplant in which they take my healthy stem cells out, freeze them, kill my immune system with chemotherapy and other drugs and then reinsert the healthy ones in hopes for remission. We see it as our only hope for fighting this. Two girls in Canada had this done. They are both in full remission and take no meds whatsoever and back to a normal life. The Chicago doctors have had great success with MS and CIDP patients and were looking for an SPS patient. At that time they had no one and were excited I called. Now they have one male in the hospital doing the transplant.
I have been taking LOTS of meds and plasma transfusions for over a year. The transfusions are to slow the disease progression down. I have gone from 6 weeks and now down to 2-3 weeks treatment intervals. My husband and I feel we have no choice but to try the transplant.
I "failed" all the tests in Chicago and the testing temporarily paralyzed me from my waist down and it was a difficult week for both of us. They told me they would contact me within 5 days but they called me in less than 24 hours that I have been accepted into the program!
Doug and I were taken aback that a clinical trial was not free or funded but are praying they can successfully fight the insurance company as a medically necessary procedure. This could be a long process because I am sure they will deny the claim immediately at $450,000.00 (plus or minus from what we understand so far). We can not afford the +/-$450k so if we get denied we will not be able to do the transplant.
The nurse said the transplant is a 2 month process, seeing the calendar 8 weeks. I will still have to fly and stay there for several times during the first year and then annually for 5 years. We just keep trying to remember the good in this and the nurse said I should feel "good" when I come home. If I am like the others, I pray I go into full remission and can have a normal life again.
So we still have a few hurdles to cross....first one being the mass on my liver (which is small) and secondly fighting insurance. After we get answers there, my husband and I need to figure out how I am going to get there, get help during the outpatient process (which is approximately 5 weeks out of the 8) and then deal with the costs. He will not be able to take that much time off work. He has to still take care of our house, work and bills. I am sure he will try to come visit.
In the meantime, I am trying to keep a normal life. Be patient (which God did not bless me with:) and take one step at a time. I am going to keep working and want to resume work when I get home. ASAP!! I enjoy my job!
So basically that is the story. We started a Caring Bridge page for our family and friends through which one dear friend saw our struggles and started this GoFundMe page. It is hard to keep up with everything and respond to every person but we appreciate your love, care, concern and prayers!
God bless and lots of love from Lisa and Doug
I have been sick for a very long time and finally got the diagnosis after 5 years. I have been diagnosed with a very rare neurological disease called Stiff Person Syndrome. It stiffens/hardens the muscles and does not relax them back on their own. All of your organs are muscles so it can kill me or have me bedridden easily. It is closer to ALS than any other neuromuscular disease you may know, but includes constant severe pain. The neurologist in Chicago called it "a very nasty disease".
I have definitely been getting worse and it has affected my GI system, my esophagus, voice, spine, and now going into my legs, quads and calves and feet. The oxygen level is slowing down going to the muscles in my left leg which is not a good sign.
Finding doctors who know this disease has been a complete nightmare, most have never even heard of it. No doctor in Raleigh knew what to do. I have a doctor at Duke who has seen 3 (but not necessarily treated) and the more experienced doctor is at Johns Hopkins who does my consultations. He has only seen around 30 during his career. The Duke doctor found a clinical trial in Chicago and we just went for an evaluation. The evaluation was to confirm that I have SPS and to make sure I do not have anything else which could be a complication. We are not doctors, but from what we understand at this point, the clinical trial is a stem cell transplant in which they take my healthy stem cells out, freeze them, kill my immune system with chemotherapy and other drugs and then reinsert the healthy ones in hopes for remission. We see it as our only hope for fighting this. Two girls in Canada had this done. They are both in full remission and take no meds whatsoever and back to a normal life. The Chicago doctors have had great success with MS and CIDP patients and were looking for an SPS patient. At that time they had no one and were excited I called. Now they have one male in the hospital doing the transplant.
I have been taking LOTS of meds and plasma transfusions for over a year. The transfusions are to slow the disease progression down. I have gone from 6 weeks and now down to 2-3 weeks treatment intervals. My husband and I feel we have no choice but to try the transplant.
I "failed" all the tests in Chicago and the testing temporarily paralyzed me from my waist down and it was a difficult week for both of us. They told me they would contact me within 5 days but they called me in less than 24 hours that I have been accepted into the program!
Doug and I were taken aback that a clinical trial was not free or funded but are praying they can successfully fight the insurance company as a medically necessary procedure. This could be a long process because I am sure they will deny the claim immediately at $450,000.00 (plus or minus from what we understand so far). We can not afford the +/-$450k so if we get denied we will not be able to do the transplant.
The nurse said the transplant is a 2 month process, seeing the calendar 8 weeks. I will still have to fly and stay there for several times during the first year and then annually for 5 years. We just keep trying to remember the good in this and the nurse said I should feel "good" when I come home. If I am like the others, I pray I go into full remission and can have a normal life again.
So we still have a few hurdles to cross....first one being the mass on my liver (which is small) and secondly fighting insurance. After we get answers there, my husband and I need to figure out how I am going to get there, get help during the outpatient process (which is approximately 5 weeks out of the 8) and then deal with the costs. He will not be able to take that much time off work. He has to still take care of our house, work and bills. I am sure he will try to come visit.
In the meantime, I am trying to keep a normal life. Be patient (which God did not bless me with:) and take one step at a time. I am going to keep working and want to resume work when I get home. ASAP!! I enjoy my job!
So basically that is the story. We started a Caring Bridge page for our family and friends through which one dear friend saw our struggles and started this GoFundMe page. It is hard to keep up with everything and respond to every person but we appreciate your love, care, concern and prayers!
God bless and lots of love from Lisa and Doug
Organizer
Lisa Satterfield Shank
Organizer
Raleigh, NC