Liver Transplant 2018
Donation protected
My name is Christopher and I wanted to share my story. I was born in 1977 in Worcester, Massachusetts, where I lived until 1992. I attended the Oxford Academy, a very small school where I made friends for life. After one year at St. John's HS in Shrewsbury, MA, I finished my last 3 years of High school at Lecanto High School in Lecanto, Florida, among some dear and wonderful friends in our class of 95. College was a no-brainer for me. From the time I could remember we would drive by Holy Cross every day and I always said - some day I want to go there. So I did. I had the most wonderful experience as a Crusader in that great old Class of 1999. They have given me so much support, I could never have made a better decision.
Let us talk about health. My maternal aunt, Elizabeth Carmody, was diagnosed in 1982 with the liver disease Primary Billiary Cirrhosis (Now Cholangitis). She had one of the earlier transplants in 1984 by Dr. Isselbacher (Editor of Harrison's Principles for Internal Medicine) at Massachusetts General Hospital. Sadly, my aunt passed shortly after the transplant due to internal bleeding from the Acities that were not entirely understood 35 years ago.
PBC affects mostly women and it was only discovered a few years ago that it is hereditary. To learn more about the disease and the associated diseases that come with it, please do some research at www.PBCers.org
From the mid to late 1980's, I had always felt sluggish, had always had an issue digesting food and had constant nausea. It made my childhood difficult because I couldn't eat all of the fun foods my friends were eating. I had no control over my vomiting or bowel function. I was mocked, teased and bullied. I had crippling anxiety and panic which would cause me to hide, or run away and hide. I apologize to my parents for the stress that I caused them, not knowing where I was for days. I certainly had very strong suicidal thoughts, but thankfully never acted on them. The thoughts continue to this day wondering if this is all going to be worth it, if I want to go through the pain, fear, and uncertainty. The tendency toward suicide exists but I have so many friends that call, text, or email me every day - It makes me want to keep going and fighting and pushing. So I will and I am happy to say that have that under control.
In high school, the symptoms progressed. I was tested for Crohns, IBS, Gall bladder and all of the other things, with no relief. I couldn't eat. They tried steroids and I blew up to 275 pounds from 165 and yes I ate, but I felt terrible and my BP, HR, and Glucose were through the roof, so that wasn't an option for me. It took a very difficult year with much anger to wean off the steroids.
In my sophomore year at Holy Cross, I was very near death after having mono and the doctors were amazed I survived after last rights and getting my affairs in order. The viruses that cause mono, the common cold, etc are all auto-immune and link together. Add in the PBC I didn't know I had and it was like throwing gasoline on a fire.
The next 10 years or so was just a dull nausea around the clock and fatigue. In the fall of 2014 I started to feel terrible again. Pain, fatigue, I couldn't move, surviving on protein shakes, and so frail I needed a wheelchair and down to 147 pounds.
I was taken into the hospital for 3 weeks for many tests, including a liver biopsy that was sent to John's Hopkins tor evaluation and it was found that I had PBC like my aunt and my immune system was destroying my liver, nay my entire body.
So I started the testing process. One day I woke up with chest pain, jaw pain, my HR was 225 and I couldn't breathe. The Paramedics took me to the ER. The dehydration combined with the Electrolyte imbalance triggered AFib.
With the lever and spleen issues, my Hemoglobin was 8, Platelets 29,000, and INR 1.7, so I couldn't take any blood thinners. I just have to pray every day that I make it through without an ischemic event or Myocardial Infarction.
When I was 7 years old, my eye doctor suggested that I see an Ophthalmic surgeon. He determined I had limited peripheral vision and asymmetric optic nerves and I was told to keep an eye on that later in life.
In high school I had many migraines, some with pain and a lot with just the aura and no pain. Many incidences of Optic Neuritis.
In late 2014, I woke up one day, unable to move my arms and legs, and drooling profoundly. I thought I was having a stroke, but it was both sides of my body. When I was taken into the ER they took another Brain MRI - the 8th to that point. Finally they testing, sorted, saw the scarring all over, and the multiple Optic Neuritis events and determined I have RR Multiple Sclerosis. Another hurdle to overcome. They are unable to treat me with something like interferon or Beta Seron because it is contraindicated with the liver medications. So for the moment, I have to fight through the MS flares as best as I can.
Because my hemoglobin, platelets, and INR are so off - I cannot take aspirin, Tylenol, Advil, etc. So some days I weep in pain and there is nothing that can be done. I'm trying to arrange for some in-home physical therapy not covered by insurance. Stretches, exercises, massage, etc... So I hope to be able to raise some funding for that.
So, all told by 2015, I had PBC and MS. My spleen was incredibly swollen and my bloodwork was horrible. From 2015 to date, I have had 56 blood transfusions. Plus Fresh Frozen Plasma and Platelets. They certainly help. But it doesn't come without risk. The potential of diseases passed through donated blood and all of the different antibodies that are introduced into my body make it so much more difficult to find a matching liver donor.
Adding another auto-immune piece to the puzzle, yes the liver is causing issues with the spleen. I have Hemolytic Anemia. This causes my spleen to view my own red blood cells as hostile, and it destroys the blood faster than it can replace it.
Finally I have an IPMN which is a spot on the main branch of the Pancreas that is cancerous. It is stage 1 and under control, but It can flip and accelerate any day. This requires me to have what is called a Whipple procedure during the transplant and cuts survival rate by 2/3rds. The danger here is that when you receive a transplant, one has to take anti-rejection medication for the rest of their life. The medication shuts down your immune system from protecting your body. The result is that the cancer cells turn into a wildfire and spread through your body, so it is a very delicate balancing act that requires daily testing and adjustments. As you may imagine this adds up very quickly.
These are some of the things I am facing. Without being able to work, I have no medical insurance. I have hundreds of thousands in bills. I have been granted SS disability but there isn't much I can do with $1,200/month. I take one medication that costs $12,000 per month.
I am looking to raise a few dollars for my medical expensed and travel expenses back and forth from Naples, FL to Tampa, FL during the transplant procedure, if a match can be found.
Also my oncologist/hematologist has been nothing short of an angel working miracles. He has saved my life no less than 4 times. In May, I was found on my kitchen floor with my head smashed open and I was in a coma. I was at the hospital in 4 minutes thanks to our wonderful EMS and Sheriff's Department blocking traffic. The doctor conferenced in with emergency medicine and a neurosurgeon, and while I was flatlining, he consulted with them on options while simultaneously repairing the bleeding skull. Several days later I came out of the coma, not knowing who I was or what was happening. Thankfully, some excellent cognitive counseling was able to help me regain most of my memory.
This doctor has called me from his vacation cruise in the middle of the Pacific at 3:00 in the morning because my Hemoglobin went to 5.9 and within 5 minutes an ambulance was at my door and I was on the way to the hospital prepped for a transfusion.
This doctor goes above and beyond. Even though the office is part of a great cancer specialist network, I have found some little things that fall though the cracks because the office managers are gripping the budget purse strings to death. They have 2 vitals machines that are in a horrible state of repair. I would like to be able to buy them 2 or 3 machines which cost about $2,000 each.
The rest will be for food, travel, lodging, Uber, and to help my family with all of the support they have given and continue to give me. My mother has Stage IV Metastatic lung cancer so she is already having her own issues. I'd like to take some pressure off of her.
I know there exist many stories like mine. I really appreciate you taking the time to read this. If you can spare a few dollars - maybe skip the Starbucks for one day, I would very sincerely appreciate it.
With God's blessing, I thank you sincerely.
Christopher
Let us talk about health. My maternal aunt, Elizabeth Carmody, was diagnosed in 1982 with the liver disease Primary Billiary Cirrhosis (Now Cholangitis). She had one of the earlier transplants in 1984 by Dr. Isselbacher (Editor of Harrison's Principles for Internal Medicine) at Massachusetts General Hospital. Sadly, my aunt passed shortly after the transplant due to internal bleeding from the Acities that were not entirely understood 35 years ago.
PBC affects mostly women and it was only discovered a few years ago that it is hereditary. To learn more about the disease and the associated diseases that come with it, please do some research at www.PBCers.org
From the mid to late 1980's, I had always felt sluggish, had always had an issue digesting food and had constant nausea. It made my childhood difficult because I couldn't eat all of the fun foods my friends were eating. I had no control over my vomiting or bowel function. I was mocked, teased and bullied. I had crippling anxiety and panic which would cause me to hide, or run away and hide. I apologize to my parents for the stress that I caused them, not knowing where I was for days. I certainly had very strong suicidal thoughts, but thankfully never acted on them. The thoughts continue to this day wondering if this is all going to be worth it, if I want to go through the pain, fear, and uncertainty. The tendency toward suicide exists but I have so many friends that call, text, or email me every day - It makes me want to keep going and fighting and pushing. So I will and I am happy to say that have that under control.
In high school, the symptoms progressed. I was tested for Crohns, IBS, Gall bladder and all of the other things, with no relief. I couldn't eat. They tried steroids and I blew up to 275 pounds from 165 and yes I ate, but I felt terrible and my BP, HR, and Glucose were through the roof, so that wasn't an option for me. It took a very difficult year with much anger to wean off the steroids.
In my sophomore year at Holy Cross, I was very near death after having mono and the doctors were amazed I survived after last rights and getting my affairs in order. The viruses that cause mono, the common cold, etc are all auto-immune and link together. Add in the PBC I didn't know I had and it was like throwing gasoline on a fire.
The next 10 years or so was just a dull nausea around the clock and fatigue. In the fall of 2014 I started to feel terrible again. Pain, fatigue, I couldn't move, surviving on protein shakes, and so frail I needed a wheelchair and down to 147 pounds.
I was taken into the hospital for 3 weeks for many tests, including a liver biopsy that was sent to John's Hopkins tor evaluation and it was found that I had PBC like my aunt and my immune system was destroying my liver, nay my entire body.
So I started the testing process. One day I woke up with chest pain, jaw pain, my HR was 225 and I couldn't breathe. The Paramedics took me to the ER. The dehydration combined with the Electrolyte imbalance triggered AFib.
With the lever and spleen issues, my Hemoglobin was 8, Platelets 29,000, and INR 1.7, so I couldn't take any blood thinners. I just have to pray every day that I make it through without an ischemic event or Myocardial Infarction.
When I was 7 years old, my eye doctor suggested that I see an Ophthalmic surgeon. He determined I had limited peripheral vision and asymmetric optic nerves and I was told to keep an eye on that later in life.
In high school I had many migraines, some with pain and a lot with just the aura and no pain. Many incidences of Optic Neuritis.
In late 2014, I woke up one day, unable to move my arms and legs, and drooling profoundly. I thought I was having a stroke, but it was both sides of my body. When I was taken into the ER they took another Brain MRI - the 8th to that point. Finally they testing, sorted, saw the scarring all over, and the multiple Optic Neuritis events and determined I have RR Multiple Sclerosis. Another hurdle to overcome. They are unable to treat me with something like interferon or Beta Seron because it is contraindicated with the liver medications. So for the moment, I have to fight through the MS flares as best as I can.
Because my hemoglobin, platelets, and INR are so off - I cannot take aspirin, Tylenol, Advil, etc. So some days I weep in pain and there is nothing that can be done. I'm trying to arrange for some in-home physical therapy not covered by insurance. Stretches, exercises, massage, etc... So I hope to be able to raise some funding for that.
So, all told by 2015, I had PBC and MS. My spleen was incredibly swollen and my bloodwork was horrible. From 2015 to date, I have had 56 blood transfusions. Plus Fresh Frozen Plasma and Platelets. They certainly help. But it doesn't come without risk. The potential of diseases passed through donated blood and all of the different antibodies that are introduced into my body make it so much more difficult to find a matching liver donor.
Adding another auto-immune piece to the puzzle, yes the liver is causing issues with the spleen. I have Hemolytic Anemia. This causes my spleen to view my own red blood cells as hostile, and it destroys the blood faster than it can replace it.
Finally I have an IPMN which is a spot on the main branch of the Pancreas that is cancerous. It is stage 1 and under control, but It can flip and accelerate any day. This requires me to have what is called a Whipple procedure during the transplant and cuts survival rate by 2/3rds. The danger here is that when you receive a transplant, one has to take anti-rejection medication for the rest of their life. The medication shuts down your immune system from protecting your body. The result is that the cancer cells turn into a wildfire and spread through your body, so it is a very delicate balancing act that requires daily testing and adjustments. As you may imagine this adds up very quickly.
These are some of the things I am facing. Without being able to work, I have no medical insurance. I have hundreds of thousands in bills. I have been granted SS disability but there isn't much I can do with $1,200/month. I take one medication that costs $12,000 per month.
I am looking to raise a few dollars for my medical expensed and travel expenses back and forth from Naples, FL to Tampa, FL during the transplant procedure, if a match can be found.
Also my oncologist/hematologist has been nothing short of an angel working miracles. He has saved my life no less than 4 times. In May, I was found on my kitchen floor with my head smashed open and I was in a coma. I was at the hospital in 4 minutes thanks to our wonderful EMS and Sheriff's Department blocking traffic. The doctor conferenced in with emergency medicine and a neurosurgeon, and while I was flatlining, he consulted with them on options while simultaneously repairing the bleeding skull. Several days later I came out of the coma, not knowing who I was or what was happening. Thankfully, some excellent cognitive counseling was able to help me regain most of my memory.
This doctor has called me from his vacation cruise in the middle of the Pacific at 3:00 in the morning because my Hemoglobin went to 5.9 and within 5 minutes an ambulance was at my door and I was on the way to the hospital prepped for a transfusion.
This doctor goes above and beyond. Even though the office is part of a great cancer specialist network, I have found some little things that fall though the cracks because the office managers are gripping the budget purse strings to death. They have 2 vitals machines that are in a horrible state of repair. I would like to be able to buy them 2 or 3 machines which cost about $2,000 each.
The rest will be for food, travel, lodging, Uber, and to help my family with all of the support they have given and continue to give me. My mother has Stage IV Metastatic lung cancer so she is already having her own issues. I'd like to take some pressure off of her.
I know there exist many stories like mine. I really appreciate you taking the time to read this. If you can spare a few dollars - maybe skip the Starbucks for one day, I would very sincerely appreciate it.
With God's blessing, I thank you sincerely.
Christopher
Organizer
Christopher Nowak
Organizer
Naples, FL
