I Just Want To Live
Donation protected
I just want to live. My name is Wendy and I was diagnosed with an autoimmune disease back in 2004. The disease was called Primary Biliary Cirrhosis. During the past 11 years I've been able to manage and control the disease which was characterized by the most extreme itching imaginable. This would disrupt my sleep and activies to the point I wanted to end it all. No one could imagine the intensity brought on by this disease. The itching was so severe it would start in the palm of my hands to the bottom of my feet. If you've ever experienced this type of itching you know exactly how I have felt for years. While I continued to work full time at my job breaks were needed due to the fatigued brought on by the lack of sleep due to this disease .
While I knew this disease would one day progress to something more serious because of the different stages, but never thought in my widest dreams it would advance this far.
My condition advanced to stage 2 in 2010. At that point my doctors performed a procedure called ERCP. This procedure was designed to go out and clear my bile ducts. My bile ducts had become full of stones. So after seeing other issues it was decided that we should remove my Gallbladder.
As of March 2015 I became very ill with major stomach cramps that resonated to my back. I thought maybe I had a kidney stone. I went to the emergency room to find out I had a large amount of liver stones. These stones were blocking my bile ducts leading to the liver. The bile ducts themselves in the liver are gradually closing up. It was described to me by one doctor as if cement was being poured into my liver ducts. Now my disease was re diagnosed as being Primary Scherlosing Cholangitis. There is no cure for this disease. The only way I will survive is to receive a liver transplant. Doctors have given me 2 years to live without a liver transplant.
I never knew this before, but I found out getting on a liver transplant list is very difficult. All hospitals go by something called a MELD score. It's a series of numbers according to blood test and a variety of other factors. Hospitals have a committee that will meet and determine who meets the correct number for the MELD score and if that person is still healthy enough to receive the liver or is still alive they are eligible for the liver.
Unfortunately my type of disease has never been taken into consideration. My MELD score would never reach the "bargaining" table so to speak, yet my liver is failing just as fast as someone with cancer.
So since the medical community seemed as if I was going to be a lost cause I went to alternative and homeopathy. I have no doubt it assisted me in building my body up and getting it ready for surgery, but my condition had advanced too far for this to work. As everyone is aware insurance will not pay for any herbal, energy, or alternative treatments so my cost for those items are on a credit card. I'm trying my best to pay off. Living on disability pay will take me awhile to do so.
Presently I've had a surgery on my Biliary tubes in an effort to remove the strictured area and move it closer to the lower intestines and open up the area so the stones would flow out better. Unfortunately I have some very large stones that cannot be retrieve. So therefore I presently have 2 IR drainage tubes, one on my left side one on my right side that will push out the excess bile that's not draining down on its own. These drain lines are necessary because if the bile backs up it will lead to more blood and liver infections which I've experienced several times already. I'm in constant pain everyday. And very little energy. These tubes are open wounds that will not heal until the tube is removed. Tubes can only be removed after a liver transplant.
I pray everyday someone will help me. Please if you can find it in your heart to assist me, please do so.
I just want to live. I am in desperate need of a liver. If it's a live liver donor they will need to at least meet the preliminary requirements:
Age 18-55
Blood Type 0 (can be positive or negative)
No major health issues
Do not and have never had cancer
No major physiological issues
These are just preliminary items. There are a series of test and evaluations a potential donor would have to undergo. Only a partial part of a good liver is needed. Both liver would grow back to a full liver within 2 months. Donor can, but do not have to accept blood. There are blood substitutes that work very well. I have a wonderful team of doctors I'm working with. Their utmost concern is not just me but the health and risk of the donor.
I want to live. I have a 4 year old handsome son that I can't bear the thought of not helping him or seeing him grow up. I have a loving husband that takes great care of me. My husband is my care giver.
If you cannot be a potential donor, please at least donate to assist with my present out of pocket expenses and any donor expenses that may occur.
Even if you cannot do either thank you for taking the time to read my story and feel free to pass it along. Maybe someone through you may be able to assist.
Thank you so much!
While I knew this disease would one day progress to something more serious because of the different stages, but never thought in my widest dreams it would advance this far.
My condition advanced to stage 2 in 2010. At that point my doctors performed a procedure called ERCP. This procedure was designed to go out and clear my bile ducts. My bile ducts had become full of stones. So after seeing other issues it was decided that we should remove my Gallbladder.
As of March 2015 I became very ill with major stomach cramps that resonated to my back. I thought maybe I had a kidney stone. I went to the emergency room to find out I had a large amount of liver stones. These stones were blocking my bile ducts leading to the liver. The bile ducts themselves in the liver are gradually closing up. It was described to me by one doctor as if cement was being poured into my liver ducts. Now my disease was re diagnosed as being Primary Scherlosing Cholangitis. There is no cure for this disease. The only way I will survive is to receive a liver transplant. Doctors have given me 2 years to live without a liver transplant.
I never knew this before, but I found out getting on a liver transplant list is very difficult. All hospitals go by something called a MELD score. It's a series of numbers according to blood test and a variety of other factors. Hospitals have a committee that will meet and determine who meets the correct number for the MELD score and if that person is still healthy enough to receive the liver or is still alive they are eligible for the liver.
Unfortunately my type of disease has never been taken into consideration. My MELD score would never reach the "bargaining" table so to speak, yet my liver is failing just as fast as someone with cancer.
So since the medical community seemed as if I was going to be a lost cause I went to alternative and homeopathy. I have no doubt it assisted me in building my body up and getting it ready for surgery, but my condition had advanced too far for this to work. As everyone is aware insurance will not pay for any herbal, energy, or alternative treatments so my cost for those items are on a credit card. I'm trying my best to pay off. Living on disability pay will take me awhile to do so.
Presently I've had a surgery on my Biliary tubes in an effort to remove the strictured area and move it closer to the lower intestines and open up the area so the stones would flow out better. Unfortunately I have some very large stones that cannot be retrieve. So therefore I presently have 2 IR drainage tubes, one on my left side one on my right side that will push out the excess bile that's not draining down on its own. These drain lines are necessary because if the bile backs up it will lead to more blood and liver infections which I've experienced several times already. I'm in constant pain everyday. And very little energy. These tubes are open wounds that will not heal until the tube is removed. Tubes can only be removed after a liver transplant.
I pray everyday someone will help me. Please if you can find it in your heart to assist me, please do so.
I just want to live. I am in desperate need of a liver. If it's a live liver donor they will need to at least meet the preliminary requirements:
Age 18-55
Blood Type 0 (can be positive or negative)
No major health issues
Do not and have never had cancer
No major physiological issues
These are just preliminary items. There are a series of test and evaluations a potential donor would have to undergo. Only a partial part of a good liver is needed. Both liver would grow back to a full liver within 2 months. Donor can, but do not have to accept blood. There are blood substitutes that work very well. I have a wonderful team of doctors I'm working with. Their utmost concern is not just me but the health and risk of the donor.
I want to live. I have a 4 year old handsome son that I can't bear the thought of not helping him or seeing him grow up. I have a loving husband that takes great care of me. My husband is my care giver.
If you cannot be a potential donor, please at least donate to assist with my present out of pocket expenses and any donor expenses that may occur.
Even if you cannot do either thank you for taking the time to read my story and feel free to pass it along. Maybe someone through you may be able to assist.
Thank you so much!
Organizer
Wendy Glass
Organizer
Bourbonnais, IL