My name is Andrea Trezza. I suffer from Kidney Disease, Kidney Failure, and I have been on Hemodialysis for 8 years. This is the first time I will be telling my health history in its entirety. First, let's talk about what kidneys do.
🔹 They regulate the bodies fluid level
🔹 Filter wastes and toxins from the blood stream
🔹 Regulate blood pressure
🔹 Activate your bodies Vitamin D for healthy bones
🔹 Helps your body maintain Red Blood Cells
🔹 Keeps your blood minerals in balance (sodium, potassium, phosphorus etc)
🔸 EVERY 30 MINUTES YOUR KIDNEYS FILTER ALL THE BLOOD IN YOUR BODY REMOVING WASTES AND TOXINS
One morning when I was only 2 years old, my mom got me dressed and ready for the day. When she went to put my shoes on, she realized my feet were swollen, and my shoes just couldn't go on. She called the doctor, thinking I may have had an allergic reaction to something. While we were at the doctors office, they had me do a urine test. When the test results came back my doctor told my mom she needed to get me to the Emergency Department immediately. I was diagnosed with a kidney disease called Nephrotic Syndrome.
*Nephrotic Syndrome is a kidney disease that causes the body to spill too much protein in the urine. It is usually caused by damage to the small blood vessels in your kidneys that filter toxins and excess fluid from your blood. Nephrotic Syndrome causes severe edema (particularly in your hands, feet and ankles) and causes more of a risk for other health issues.*
Once we arrived at our local hospital, it became clear to my mom that there wasn't a pediatric nephrologist in the hospital, and no one knew how to treat this disease. I was the first case in 15 years where we lived in Pennsylvania. The doctors and nurses who were taking care of me had medical books strewn across the ER researching what to do with me. They did however, immediately start me on high doses of IV Prednisone. That was a horrible experience and I'm glad I don't remember it. My mom had told me that they tried to catheterize me to get some of the fluid out, but instead of using a child catheter (they claim they didn't have any) they used an adult feeding tube. My mom saw that they were making me bleed (where I shouldn't be bleeding from) and ripped me off of the table. We stayed at that hospital for my first hospital stay dealing with my kidney disease. It was about a one month stay for the first initial diagnosis. After that we switched to Geisinger Medical Center in Danville PA. They had a pediatric nephrologist and he was wonderful. I remember my mom telling me when she first met my new nephrologist she was kind of taken aback. Here comes this tall guy with a really long silver ponytail, wearing a leather biker jacket and a huge belt buckle! Who would have thought he would have been the best doctor I ever had. His name was Dr. Oberkirker. He suggested we try a round of chemotherapy. I cannot recall the name of the medication I was given. I do remember my mom and my grandmother chopping all of my gorgeous hair off and buying me a lot of hats though. We tried the chemo for a good 6 months. It really didn't do anything but make me sick. Funny story! I don't remember this, but its one of those stories we can laugh at now and is told during holidays lol One night on the way home from Geisinger after chemotherapy, we had stopped at Friendly's for dinner. After chemo they used to give me medication to help me sleep because the chemo would cause me severe pain and I would scream and cry the entire way home. Well, while we were at Friendly's, my mom had ordered me macaroni and cheese. Apparently as soon as my plate was placed in front of me, the medication kicked in, and my mom pulled my plate away a split second before my face went into my macaroni and cheese!
Dr. Oberkirker did what every other doctor did. He kept me on high doses of prednisone, and kept trying every immunosuppressant medication until we found one that kept me in remission. He retired while I was still seeing him. We then decided to try Hershey Medical Center, and shortly after that appointment, we went to get a second opinion from another hospital. This hospital was called St. Christopher's located in Philadelphia. We didn't stay there long. I was hospitalized quite a few times there, and I had my first very long stay in the hospital there. I somehow (we still don't know how) got Shingles. It made me go into a kidney disease relapse. My stay for that hospitalization was scary. All of my organs had started to shut down, and they actually counseled my Mom because they didn't think I was going to make it through the night. Here I am! We eventually ended up leaving St. Christopher's and going back to Hershey Medical Center.
My elementary and middle school years were much of the same. Relapse, hospital, remission. This went on for years, until high school.
This is where my story gets interesting, and kind of difficult. We moved to a new area when I was 13. I had to change to a new high school and everything. It was so hard! My first year of high school in a new school was my last year of public school. I ended up having to switch to cyber school because I started getting very sick.
When I was 15, my kidney disease progressed to a disease called Focal Segmental Glumerisclerosis (FSGS) This disease means that basically all of the little filters in my kidneys were scared and unable to filter out toxins. Eventually my kidneys shrunk and shriveled into little rocks, and when I was 16, I had them both removed. During the surgery to remove my kidneys, I had a chest catheter inserted to begin dialysis immediately. So started my dialysis life. Right after I had my kidneys removed, my mom started going through all the tests to see if she was a match. She was! We were ecstatic. A month later, we were both being wheeled in to do the transplant. Here is where it gets a little sticky.
Turns out, my nephrologist and my transplant surgeon couldn't decide which disease I had. Nephrotic Syndrome, or FSGS? They decided to go with Nephrotic Syndrome, and, they were wrong. I did indeed have FSGS, and because of their mistake, the transplant worked for all of 10 hours. They should have done other treatments before the actual transplant. My mothers gift of life (second one, the first one was actually giving birth to me) was ruined. We were all devastated. I ended up staying in the hospital for about 3 months after that. I did dialysis and plasmapheresis every other day to try and see if we can get the kidney working. Nothing worked, and eventually my nephrologist gave up on me. He came to me during one of my dialysis sessions and told me he couldn't be in control of my care anymore. He had nothing else to do for me.
Now, during the transplant and during all that time spent at Hershey Medical Center, I was given so many blood transfusions, I now have so many antibodies I have about a 1% chance of receiving a kidney transplant. Hershey technically ruined me. I don't match anyone in my family, and I've had many friends and strangers tested who are not a match.
After we realized that I was going to be on dialysis long term, we decided to go through with surgery to put in a long term dialysis access. Well, according to my vascular doctor, I have the veins of an 80 year old woman, and they didn't have much to work with for a more permanent dialysis access. I have had about 5 surgeries trying to make a dialysis access. I finally have one now, and its kept me alive for about 5 years. Before this dialysis access, I had a catheter in my chest.
I have been on dialysis for a little over 8 years altogether. From all of the horrible medications, tons of steroids, and everything else I've gone through, I have developed more chronic illnesses. I am riddled with arthritis up and down my body, I have brittle bones, horrible chronic anemia, Raynaud's disease and angioedema. I am currently going through a boat load of tests through my Rheumatologist looking for any type of auto-immune disease. There are days I will sleep all day because of my anemia. There are days I can hardly move because I am in so much pain.
I am currently on the transplant list at Lehigh Valley Cedar Crest Hospital located in Pennsylvania. If you'd like to be tested for me, or any of the 1,000's of people waiting for that life saving kidney transplant, please reach out to any transplant center near you. BECOME AN ORGAN DONOR!
If you'd like to get tested directly for me, please call (610)402-8506 and ask to be tested for Andrea Trezza.
I know this is a long blog post. And hell, maybe no one will be able to read all of this. Maybe you'll get bored, or it just won't interest you that much, but just remember...I am only one of the hundreds of thousands of people (men, women and children) fighting for their life because of Kidney Failure.
Thank you, if you have read all the way to the end of this! It's so important that Kidney Disease has enough awareness. There isn't enough out there right now. Kidney Disease kills more people a year than cancer, and yet, there is hardly any awareness out there for us. We are all warriors, and we deserve to have more awareness and advocacy surrounding us. Please feel free to leave a comment or ask me a question in the comment section! I am willing to answer any questions you may have about my, or kidney disease/dialysis.
Dr. Oberkirker did what every other doctor did. He kept me on high doses of prednisone, and kept trying every immunosuppressant medication until we found one that kept me in remission. He retired while I was still seeing him. We then decided to try Hershey Medical Center, and shortly after that appointment, we went to get a second opinion from another hospital. This hospital was called St. Christopher's located in Philadelphia. We didn't stay there long. I was hospitalized quite a few times there, and I had my first very long stay in the hospital there. I somehow (we still don't know how) got Shingles. It made me go into a kidney disease relapse. My stay for that hospitalization was scary. All of my organs had started to shut down, and they actually counseled my Mom because they didn't think I was going to make it through the night. Here I am! We eventually ended up leaving St. Christopher's and going back to Hershey Medical Center.
My elementary and middle school years were much of the same. Relapse, hospital, remission. This went on for years, until high school.
This is where my story gets interesting, and kind of difficult. We moved to a new area when I was 13. I had to change to a new high school and everything. It was so hard! My first year of high school in a new school was my last year of public school. I ended up having to switch to cyber school because I started getting very sick.
When I was 15, my kidney disease progressed to a disease called Focal Segmental Glumerisclerosis (FSGS) This disease means that basically all of the little filters in my kidneys were scared and unable to filter out toxins. Eventually my kidneys shrunk and shriveled into little rocks, and when I was 16, I had them both removed. During the surgery to remove my kidneys, I had a chest catheter inserted to begin dialysis immediately. So started my dialysis life. Right after I had my kidneys removed, my mom started going through all the tests to see if she was a match. She was! We were ecstatic. A month later, we were both being wheeled in to do the transplant. Here is where it gets a little sticky.
Turns out, my nephrologist and my transplant surgeon couldn't decide which disease I had. Nephrotic Syndrome, or FSGS? They decided to go with Nephrotic Syndrome, and, they were wrong. I did indeed have FSGS, and because of their mistake, the transplant worked for all of 10 hours. They should have done other treatments before the actual transplant. My mothers gift of life (second one, the first one was actually giving birth to me) was ruined. We were all devastated. I ended up staying in the hospital for about 3 months after that. I did dialysis and plasmapheresis every other day to try and see if we can get the kidney working. Nothing worked, and eventually my nephrologist gave up on me. He came to me during one of my dialysis sessions and told me he couldn't be in control of my care anymore. He had nothing else to do for me.
Now, during the transplant and during all that time spent at Hershey Medical Center, I was given so many blood transfusions, I now have so many antibodies I have about a 1% chance of receiving a kidney transplant. Hershey technically ruined me. I don't match anyone in my family, and I've had many friends and strangers tested who are not a match.
After we realized that I was going to be on dialysis long term, we decided to go through with surgery to put in a long term dialysis access. Well, according to my vascular doctor, I have the veins of an 80 year old woman, and they didn't have much to work with for a more permanent dialysis access. I have had about 5 surgeries trying to make a dialysis access. I finally have one now, and its kept me alive for about 5 years. Before this dialysis access, I had a catheter in my chest.
I have been on dialysis for a little over 8 years altogether. From all of the horrible medications, tons of steroids, and everything else I've gone through, I have developed more chronic illnesses. I am riddled with arthritis up and down my body, I have brittle bones, horrible chronic anemia, Raynaud's disease and angioedema. I am currently going through a boat load of tests through my Rheumatologist looking for any type of auto-immune disease. There are days I will sleep all day because of my anemia. There are days I can hardly move because I am in so much pain.
I am currently on the transplant list at Lehigh Valley Cedar Crest Hospital located in Pennsylvania. If you'd like to be tested for me, or any of the 1,000's of people waiting for that life saving kidney transplant, please reach out to any transplant center near you. BECOME AN ORGAN DONOR!
If you'd like to get tested directly for me, please call (610)402-8506 and ask to be tested for Andrea Trezza.
I know this is a long blog post. And hell, maybe no one will be able to read all of this. Maybe you'll get bored, or it just won't interest you that much, but just remember...I am only one of the hundreds of thousands of people (men, women and children) fighting for their life because of Kidney Failure.
Thank you, if you have read all the way to the end of this! It's so important that Kidney Disease has enough awareness. There isn't enough out there right now. Kidney Disease kills more people a year than cancer, and yet, there is hardly any awareness out there for us. We are all warriors, and we deserve to have more awareness and advocacy surrounding us. Please feel free to leave a comment or ask me a question in the comment section! I am willing to answer any questions you may have about my, or kidney disease/dialysis.
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