Sheri's Vascular Surgeries Fund
Donation protected
SEE UPDATE - SURGERY WAS CANCELLED BY DOCTOR AND STILL SEEKING ANSWERS... See updates #1 and #2. Updated as of September 27th 2017
2 years ago we spent Christmas together at Disney World and this year I pray that some day they look back on Christmas 2016 and know that although we were apart it turned out to be the best Christmas EVER!. My Nutcracker/Health Battles with the Rat King:
This Christmas millions will see the Nutcracker ballet and fall asleep with visions of sugar plum fairies dancing in their head. Unfortunately, instead of dressing up for holiday parties and picking out the perfect tree I will be be "put to sleep" Dec 15th to play the main character in my own "Battle with the Rat King". That's the scene where the girl falls asleep and the rats and army battle with swords, guns and cannons scaring the heck out of the girl? Yeah, well I'm that scared girl right now!
So, for Christmas this year Santa is bringing me a "Left Renal Vein Transpostion" surgery in hopes to cure my Nutcracker Syndrome , a very rare disease I was born with that manifested into debilitating pain after a "medical mess up" in April 2016 that has left me feeling like I am passing a kidney stone while also in labor with a knife stabbing into my spine 24/7. My entire left side is constantly numb and my legs feel so heavy that walking has become a challenge. I have tried to push on through the constant chest pains, shortness of breath, crazy blurred vision and digestive problems that comes with having this vascular malformation. At 5'4" I am down to 91 lbs. and although people joke saying "must be nice to be that skinny" the reality is I have lost 25% of my normal body weight and struggle to not lose more daily. It isn't really a nice problem to have.
What only a few close to me know is that for nearly 6 months I have unable to work because the pain from walking, standing and sitting is so intense and the doctors appointments and recovery from testing is constant. Shortly after my procedure in April I KNEW something was wrong despite what my doctor at the time was telling me. I begged for help and was told I was fine. Finally Oct 19th I drove 5 hours which had become nearly impossible because I had the oppportunity to meet with a highly recognized interventional radiologists. As I had suspected he confirmed that I DID indeed have Nutcracker Syndrome and the procedure I had in April has started my body on an extremely painful and expedited downfall into severe dysautonomia and intensified the symptoms asscoiated with POTS . Dysautonomia and POTS affect your automatic functions like breathing, heart rate and blood pressure These affects combined with the unbearable pain the pressure in my veins is creating it made treating my Nutcracker Syndrome with invasive surgical option mandatory asap. Not only to alieviate the indesribable pain but to also avoid continued damage to the other vital systems in my body.
My Financial Situation:
After countless days traveling up and down the east coast, overnight stays in hotels, in network and out of network deductibles , specialist visits of every kind, crazy high drug costs, living expenses and the logistics of being a single mom, I am exhausted, bills are adding up, and I know I am being faced with an uncertain future. Without the ability to work for several months and a major surgery with a minimum 3 month recovery in less than a week away my finances have been stretched to the limit to say the least and I am left going into this surgery questioning how I am going to make it through the next few months. Before my surgery Thursday I have to secure insurance for 2017 as my carrier has withdrawn from North Carolina and my currectly I have limited options available that will cover follow up care with the only local team familiar with my illness.
The Help I Need
My goal is to raise the funds necessary for this very major surgery I need to stop this dibilitating disease from causing more damage to kidney, autoimmune, nueological systems and other major organs and to keep life "going" as best I can while I physically recovering over the next 3-6 months. I will need treatments and procedures insurance doesn't cover or only partially covers after this surgery over the next several years to monitor my body's progress after this surgery and statistically speaking this will not be the last one I need but I know God can do anything and I am taking this one step at a time. My goal while at home for several months recovering is to create awareness for rare vascular malformations with a website filled with information I gathered in my research and create ways for others to get the needed help and resources not available for rare and invisible illnesses.
The unpaid insurance costs alone just to come to a proper diagnosis over the last 8 months has been over $30,000 due to in and out of network deductibles because the few doctors able to treat are sprinkled around the US. I have incurred over $3000 in travel costs and additional out-patient care needs with a variety of supplements, vitamins and minerals, heating pads and more. In the coming months I will need over $2,000 in mandatory supplies to assist me in regaining my independence allowing me to get around with as little assistance from other as possible. And as much as I am ready to ring in a New Year, I will also be ringing in a new round of the deductibles to be met. With over $35,000 already spent in this 1st year alone to diagnose and come up with a plan to treat this disease, the Lord only knows what my costs from this surgery and hospital stay will be. There is no way to predict how long I will be in ICU after surgery or how long I will be at the hospital or what medications will be needed to contol the pain so it is impossiblt to determine the percentage I will be responsible for. (The cost of living and bills, have not been included in these totals). In anticipation of my needs over the next couple of months and I created a list of things I would need in the recovery.
The AMAZING cast God has put together:
I have done extensive research and met with incredible surgeons in an effort to learn as much as possible. I have spent countless hours in prayer to help guide me in choosing the best possible way forward for ME. ME is capitalized because despite my wonderful friends and family who have all continued to be incredibly supportive, kind, generous and amazing, ultimately this comes down to ME. It's MY disease, MY choice, My fight and MY life
As a casting agent for my own personal Nutcracker production I am blessed with a world class cast and the greatest venue possible. Nutcracker Syndrome is very rare and few surgical teams and hospitals in the world are capable of performing this surgery so I know it is a blessing to have Dr. Cynthia Shortell, head of vascular surgery at Duke Hospital, Dr. Sopko (IR) and Daniel Geerson(PA). Although they are one of the top vascular malformation teams in world, this surgery has only been done a handful of times at Duke which leaves me no less than freaked out!
Your support means so much to me and you all are truly making an amazing difference in my life and my girls have seen amazing acts of kindness of the past year! My prayer is that the part of me that this disease has taken from my girls will be replaced with an even more amazing relationship with them. I hope I show them that with faith we all have the strength needed to conquer whatever we are faced with but that is also ok to expose our weaknesses and suffering to others so that in our weakness they can be strong and together we can make it through anything.
I appreciate any financial donation and sharing my story with your friends to create awareness of Nutcracker Syndrome for me and the others struggling the battles associated with this rare and invisible disease. I know that with your support, prayers, and well wishes, that the girls and I can get through this!
With love and indescribable gratitude,
Sheri <3
P.S. I know so many of you pray for and care about these two adorable goofballs and have asked what you can do for them. I LOVE this idea! I am hopeful to be back to enjoying time with them and their love is what makes all the struggle worth it! We will be celebrating Christmas after the new year when I am conscious enough to remember instead of just going through the motions on a designated day and I can't wait to see with Santa shows up with while "Ms. Claus"/me is taking a nap!
Morgan spent hours searching for Legos and Hannah is typical teenager and asked for gift cards. xoxoxo!
2 years ago we spent Christmas together at Disney World and this year I pray that some day they look back on Christmas 2016 and know that although we were apart it turned out to be the best Christmas EVER!. My Nutcracker/Health Battles with the Rat King:
This Christmas millions will see the Nutcracker ballet and fall asleep with visions of sugar plum fairies dancing in their head. Unfortunately, instead of dressing up for holiday parties and picking out the perfect tree I will be be "put to sleep" Dec 15th to play the main character in my own "Battle with the Rat King". That's the scene where the girl falls asleep and the rats and army battle with swords, guns and cannons scaring the heck out of the girl? Yeah, well I'm that scared girl right now!
So, for Christmas this year Santa is bringing me a "Left Renal Vein Transpostion" surgery in hopes to cure my Nutcracker Syndrome , a very rare disease I was born with that manifested into debilitating pain after a "medical mess up" in April 2016 that has left me feeling like I am passing a kidney stone while also in labor with a knife stabbing into my spine 24/7. My entire left side is constantly numb and my legs feel so heavy that walking has become a challenge. I have tried to push on through the constant chest pains, shortness of breath, crazy blurred vision and digestive problems that comes with having this vascular malformation. At 5'4" I am down to 91 lbs. and although people joke saying "must be nice to be that skinny" the reality is I have lost 25% of my normal body weight and struggle to not lose more daily. It isn't really a nice problem to have.
What only a few close to me know is that for nearly 6 months I have unable to work because the pain from walking, standing and sitting is so intense and the doctors appointments and recovery from testing is constant. Shortly after my procedure in April I KNEW something was wrong despite what my doctor at the time was telling me. I begged for help and was told I was fine. Finally Oct 19th I drove 5 hours which had become nearly impossible because I had the oppportunity to meet with a highly recognized interventional radiologists. As I had suspected he confirmed that I DID indeed have Nutcracker Syndrome and the procedure I had in April has started my body on an extremely painful and expedited downfall into severe dysautonomia and intensified the symptoms asscoiated with POTS . Dysautonomia and POTS affect your automatic functions like breathing, heart rate and blood pressure These affects combined with the unbearable pain the pressure in my veins is creating it made treating my Nutcracker Syndrome with invasive surgical option mandatory asap. Not only to alieviate the indesribable pain but to also avoid continued damage to the other vital systems in my body.
My Financial Situation:
After countless days traveling up and down the east coast, overnight stays in hotels, in network and out of network deductibles , specialist visits of every kind, crazy high drug costs, living expenses and the logistics of being a single mom, I am exhausted, bills are adding up, and I know I am being faced with an uncertain future. Without the ability to work for several months and a major surgery with a minimum 3 month recovery in less than a week away my finances have been stretched to the limit to say the least and I am left going into this surgery questioning how I am going to make it through the next few months. Before my surgery Thursday I have to secure insurance for 2017 as my carrier has withdrawn from North Carolina and my currectly I have limited options available that will cover follow up care with the only local team familiar with my illness.
The Help I Need
My goal is to raise the funds necessary for this very major surgery I need to stop this dibilitating disease from causing more damage to kidney, autoimmune, nueological systems and other major organs and to keep life "going" as best I can while I physically recovering over the next 3-6 months. I will need treatments and procedures insurance doesn't cover or only partially covers after this surgery over the next several years to monitor my body's progress after this surgery and statistically speaking this will not be the last one I need but I know God can do anything and I am taking this one step at a time. My goal while at home for several months recovering is to create awareness for rare vascular malformations with a website filled with information I gathered in my research and create ways for others to get the needed help and resources not available for rare and invisible illnesses.
The unpaid insurance costs alone just to come to a proper diagnosis over the last 8 months has been over $30,000 due to in and out of network deductibles because the few doctors able to treat are sprinkled around the US. I have incurred over $3000 in travel costs and additional out-patient care needs with a variety of supplements, vitamins and minerals, heating pads and more. In the coming months I will need over $2,000 in mandatory supplies to assist me in regaining my independence allowing me to get around with as little assistance from other as possible. And as much as I am ready to ring in a New Year, I will also be ringing in a new round of the deductibles to be met. With over $35,000 already spent in this 1st year alone to diagnose and come up with a plan to treat this disease, the Lord only knows what my costs from this surgery and hospital stay will be. There is no way to predict how long I will be in ICU after surgery or how long I will be at the hospital or what medications will be needed to contol the pain so it is impossiblt to determine the percentage I will be responsible for. (The cost of living and bills, have not been included in these totals). In anticipation of my needs over the next couple of months and I created a list of things I would need in the recovery.
The AMAZING cast God has put together:
I have done extensive research and met with incredible surgeons in an effort to learn as much as possible. I have spent countless hours in prayer to help guide me in choosing the best possible way forward for ME. ME is capitalized because despite my wonderful friends and family who have all continued to be incredibly supportive, kind, generous and amazing, ultimately this comes down to ME. It's MY disease, MY choice, My fight and MY life
As a casting agent for my own personal Nutcracker production I am blessed with a world class cast and the greatest venue possible. Nutcracker Syndrome is very rare and few surgical teams and hospitals in the world are capable of performing this surgery so I know it is a blessing to have Dr. Cynthia Shortell, head of vascular surgery at Duke Hospital, Dr. Sopko (IR) and Daniel Geerson(PA). Although they are one of the top vascular malformation teams in world, this surgery has only been done a handful of times at Duke which leaves me no less than freaked out!
Your support means so much to me and you all are truly making an amazing difference in my life and my girls have seen amazing acts of kindness of the past year! My prayer is that the part of me that this disease has taken from my girls will be replaced with an even more amazing relationship with them. I hope I show them that with faith we all have the strength needed to conquer whatever we are faced with but that is also ok to expose our weaknesses and suffering to others so that in our weakness they can be strong and together we can make it through anything.
I appreciate any financial donation and sharing my story with your friends to create awareness of Nutcracker Syndrome for me and the others struggling the battles associated with this rare and invisible disease. I know that with your support, prayers, and well wishes, that the girls and I can get through this!
With love and indescribable gratitude,
Sheri <3
P.S. I know so many of you pray for and care about these two adorable goofballs and have asked what you can do for them. I LOVE this idea! I am hopeful to be back to enjoying time with them and their love is what makes all the struggle worth it! We will be celebrating Christmas after the new year when I am conscious enough to remember instead of just going through the motions on a designated day and I can't wait to see with Santa shows up with while "Ms. Claus"/me is taking a nap!
Morgan spent hours searching for Legos and Hannah is typical teenager and asked for gift cards. xoxoxo!
Organizer
Sheri Spain
Organizer
Raleigh, NC
