If you had read my last blog post, you saw that I had explained the process of getting the call for a cadaver kidney transplant and I explained the surgery process and all that. Well, it seems like the weeks following were much more difficult than the actual surgery process! I am going to explain everything that I was and still am, going through. It has been an extremely difficult time for me and my family.
I received my kidney transplant October 12th. Initially it was a crazy hospital stay. My kidney was beyond sleepy, and it took awhile before I even started producing urine on my own. It was an extremely slow start. Once I was home, and able to heal and rest more comfortably, my urine output started to increase, but still, not as much as it should be. So, I was still doing dialysis. The interventional radiologists had to put in a chest catheter because during my transplant surgery, my dialysis AV Graft in my arm clotted because of my anaphylactic episode during surgery. The catheter is where most of my problems start.
One morning when I woke up, I noticed that my face was extremely swollen. It almost looked like I had the mumps! I had an appointment set up with my transplant team the next day, so we didn't worry about it until I was in the see the doctor. Well, the next thing I know, is I'm being admitted because they originally thought the veins in my chest and neck were narrowing due to how many chest catheters I had had since I was put on dialysis in 2008. They had me see the Interventional Radiologists again so they could get inside my chest and my neck to open up whatever needed to be open. Well, it was quite the surprise when they told me it wasn't my veins. It was a nice big blood clot sitting in my chest, not allowing the blood flow or the fluid to drain from my face. They immediately took out my chest catheter and inserted a Femoral Catheter. I was then put on a 24 hour heparin drip for about a week, and was "bridged" over to Coumadin, which I will probably be on for years to come. This was the first "uh oh" in my transplant experience, which caused a lovely mental breakdown that caused me to be medicated. It was just so much in such a short amount of time, that I just completely broke down. Not only in front of my mom, but in front of my transplant surgeon as well. He is the one that had me medicated and apparently he got very upset as well seeing me like that. When my nurse came in to give me anti-anxiety medicine, she said she had never seen him so upset, that he had tears in his eyes. Before he left my hospital room he said "You're allowed to break down. You have gone through so much in such a short amount of time. You cry today, and tomorrow you go back to being the toughy you are!" I have to say, I absolutely love my team at the transplant center. So that was my first issue after transplant.
Next issue we had to deal with, was trying like hell to get my kidney to wake up. My transplant surgeon set me up for 7 plasmapheresis procedures which is to help people like me to lower antibodies in my blood that could potentially hurt my kidney. *Plasmapheresis is a process in which the plasma in the blood is separated from the cells. The plasma that is removed from the blood contains those dangerous antibodies and the plasma is replaced with a medicine called Albumin*
Immediately after finishing plasmapheresis, I went for an infusion of another medicine called IVIG. Which is basically plasma taken from hundred of donors and has "good antibodies" to help fight diseases and lower the bad antibodies. I have 2 more IVIG infusions, and a Rituximab infusion left to go.
My kidney finally decided to join the world a few days ago. It started with insane urine output, and finally my last blood test showed my creatinine dropped to 3. *Creatinine is a chemical waste product in the blood that passes through the kidneys to be filtered and eliminated in urine. Creatinine basically shows how much kidney function a person has. The lower the creatinine, the higher the kidney function. Normal creatinine is 0.40-1.10 (in a normal healthy person, with working kidneys) Mine however, has finally just dropped to 3.0. Which for a transplant, is pretty decent.* We are hoping to get my creatinine down to at least a 2, and of course we wouldn't mind if it was even lower. It has taken my kidney a very long time to wake up, today is officially 7 weeks post transplant, and I'm still not quite all there.
I am back on 10mg Prednisone, and I can't stand watching my body change because of this drug. My face has already gone to the "moon face". The only side effect I don't have yet, is the crazy appetite and man, I hope that stays away. The medications have also effected me horribly and we've had to do some mix ups pertaining to my medicine. The one anti-rejection med I am on, is called Prograf. I have been on this medication before I started dialysis. Back then, it gave me horrible tremors. It almost looked like I had Parkinsons by the way I would shake. I noticed that those same side effects are coming back. Its hard for me to hold anything because of the constant shaking. Not to mention Prednisone makes you feel "jittery" so I'm just a big bundle of jitters and shakes. The other anti-rejection medicine I am on, is called CellCept. The first two weeks on this medicine, gave me horrible tummy troubles. From heartburn, to nausea, to diarrhea. We ended up having to cut that medicine way down, but it seems like its working just fine since my kidney is indeed waking up.
So many people thing that once you get a kidney transplant you're "healed". That is absolutely NOT the case. Kidney transplants and dialysis are both just treatments. There are no cures for kidney disease or End Stage Renal Disease. Getting a kidney transplant is a lot of work. A lot of "don't do this" or "You're not allowed to go here" and of course, "Watch your body for anything that doesn't feel normal" I was first seeing my transplant surgeon twice a week, and now I'm at once a week and blood work is twice a week. We are making sure we're monitoring my kidney function very closely, because as my transplant surgeon put it "You're a very difficult and strange patient". I beat to my own drum so to say.
Every morning I wake up with my face swollen. I have massive chipmunk cheeks and sometimes it feels like my eye balls have too much pressure on them. Eventually after an hour or so, the fluid drains away from my face. Being on my feet for too long causes fluid build up in my ankles and lower legs. It doesn't hurt really, and its definitely not as horrible as it used to be when I was younger, but it is a little uncomfortable. I have a long way to go before I'm back to my "new normal" and I'm hoping this kidney works for well over 10-20 years. I'll take what I can get! Now that I am finally off dialysis, (I still never saw that one coming) I have a lot of free time! My goals are to finally get my license, get my GED, and become a Pediatric Phlebotomist. It's what I have always wanted to do. Before I do any of that, I want to get a part time job just to get myself used to working. I have never been able to work as I started dialysis when I was 16, and it effected my body in a horrible way for the first year of dialysis. I have goals, and I'll be damned if something keeps me from getting to them. My first goal was to be off dialysis before Thanksgiving, and I did it. So I know I can do the rest of my goals. I will be taking it slow, just because I don't want to make myself exhausted and put my new little bean at risk.
Thank you for reading this post. It was a long one. Always remember, kidney failure can effect anyone. It is a horrible disease, and there isn't half as much awareness out there. That is what I hope to do with my blog. I want to spread awareness and advocate for the thousands of people who suffer from kidney failure and dialysis.
Wednesday, November 23, 2016
Sunday, October 30, 2016
WHAT? Kidney Transplant!!!
Well, I haven't written in a long time, and I'm about to tell you all why. This might be a bit long, so I'm going to try really hard not to bore you all.
October 11th at about 6:30 in the morning, I got the phone call that I was a back up for a kidney transplant, and that they would call me back in 6-8 hours and let me know what was going on. The kidney was all the way in California and I live in Pennsylvania. 10 hours later they called me saying they were looking to make sure no one needed a dual transplant (which takes precedence over a single kidney transplant) and again, they would be calling me in a few hours to let me know what was going on. Around 10:30 that night, I got the phone call saying, "Can you be at the hospital sometime after midnight so we can do the rest of the crossmatch?" and off my mom and I went! The kidney was a match, and I went into surgery at 11:00 in the morning on October 12th for the kidney transplant.
I had another allergic reaction during surgery to another antibiotic. That is 4 antibiotics that I am deathly allergic to. After the surgery I was sent to ICU for a couple days with a tube down my throat, and I was wide awake and remember everything about the tube. It was absolutely horrible. I felt like I was choking the entire time it was in. They tried to knock me out with fentynal and propofol but it didn't work. I was completely awake. When they finally took the tube out, I was watched like a hawk for any sign of pneumonia. Thankfully my lungs cleared up very quick and I was able to get up and get out of bed rather quickly. After about 2 days in the ICU I was able to go to a regular "monitoring" ward. It was so much more comfortable.
As for the kidney, well...Its working, just very slowly. Apparently my kidney is very sleepy because it was outside of the body for almost the "expiration date". I like to joke around and say its got severe jet lag! I had a bunch of tests done to make sure my kidney is working. All the tests came back wonderful. My transplant surgeon came into my hospital room and said "I am fairly confident that you will start peeing like crazy very shortly" so that made me feel good. I am still doing dialysis strictly for fluid control because I'm not urinating as much as I should be yet. All of my labs have come back wonderful, so obviously my kidney is filtering like it should be.
Getting that call for the kidney was absolutely shocking. I have waited a little over 8 years. I was (and still am) considered a "rare match". My antibodies are at 100% and that is extremely hard to match. Thank my lucky stars I was matched to this kidney. We did a lot of pre procedures to hopefully keep my antibodies down and hopefully keep my antibodies from attacking my kidney and rejecting it. From the biopsy I had done, it showed my kidney was in "borderline rejection" which is the lowest form of rejection. Thankfully we figured out what was going on in the matter of minutes. My kidney is allergic to my stomach meds (Prilosec) and the antibiotics they had me on right after transplant to stop any UTI's I may get. We stopped those meds right away, and started IV prednisone and all is well now.
I wasn't in the hospital for very long, and I think its because I'm very close to the hospital should something go wrong, and I am an extremely compliant patient. I did end up back in the hospital about a week later, but that is a different blog post that I will get to sometime this week. I feel like I have basically spent my entire month of October in the hospital! I was released today from my second admittance.
I honestly never thought I would receive a cadaver kidney. The best chance for someone like me to get a kidney is through living donor. I have had many people tested who did match, but there was always the antibodies that just got in the way. This kidney that I received was almost a damn near perfect match, from a middle aged man, and he was perfectly healthy. I would love to meet and or converse with my donors family, however that is up to them to contact me. I don't know anything about them, other than they had to make a hasty, very difficult decision to stop his life support so they could donate his organs.
Sometimes this entire situation feels like a dream. Is this real? Did I really get a kidney transplant? Am I really urinating after 8 years of not needing to pee? Will I be able to stop dialysis completely soon? Man, I hope so. I hope my kidney wakes up soon, so I can stop dialysis and do what I want to do. I want to get my GED and train to be a pediatric phlebotomist. I was basically forced to drop out of highschool when I started dialysis. I had both kidneys removed, and my first year of dialysis was absolutely horrible. I was so weak, I could hardly even sit up in bed without help. I even tried cyber school and I was just so exhausted I couldn't do it. Hopefully this kidney gives me a new lease on life, and I'll be able to start living my life. I have a wedding to plan too! How nice it would be to plan a wedding and get married not on dialysis!
Anyway, I hope I didn't bore you all with this blog post! I just wanted to explain why I haven't written and what has been going on. Please send all of your positive thoughts and good vibes my way so my kidney wakes up and starts urinating like crazy!
Thanks for reading!
October 11th at about 6:30 in the morning, I got the phone call that I was a back up for a kidney transplant, and that they would call me back in 6-8 hours and let me know what was going on. The kidney was all the way in California and I live in Pennsylvania. 10 hours later they called me saying they were looking to make sure no one needed a dual transplant (which takes precedence over a single kidney transplant) and again, they would be calling me in a few hours to let me know what was going on. Around 10:30 that night, I got the phone call saying, "Can you be at the hospital sometime after midnight so we can do the rest of the crossmatch?" and off my mom and I went! The kidney was a match, and I went into surgery at 11:00 in the morning on October 12th for the kidney transplant.
I had another allergic reaction during surgery to another antibiotic. That is 4 antibiotics that I am deathly allergic to. After the surgery I was sent to ICU for a couple days with a tube down my throat, and I was wide awake and remember everything about the tube. It was absolutely horrible. I felt like I was choking the entire time it was in. They tried to knock me out with fentynal and propofol but it didn't work. I was completely awake. When they finally took the tube out, I was watched like a hawk for any sign of pneumonia. Thankfully my lungs cleared up very quick and I was able to get up and get out of bed rather quickly. After about 2 days in the ICU I was able to go to a regular "monitoring" ward. It was so much more comfortable.
As for the kidney, well...Its working, just very slowly. Apparently my kidney is very sleepy because it was outside of the body for almost the "expiration date". I like to joke around and say its got severe jet lag! I had a bunch of tests done to make sure my kidney is working. All the tests came back wonderful. My transplant surgeon came into my hospital room and said "I am fairly confident that you will start peeing like crazy very shortly" so that made me feel good. I am still doing dialysis strictly for fluid control because I'm not urinating as much as I should be yet. All of my labs have come back wonderful, so obviously my kidney is filtering like it should be.
Getting that call for the kidney was absolutely shocking. I have waited a little over 8 years. I was (and still am) considered a "rare match". My antibodies are at 100% and that is extremely hard to match. Thank my lucky stars I was matched to this kidney. We did a lot of pre procedures to hopefully keep my antibodies down and hopefully keep my antibodies from attacking my kidney and rejecting it. From the biopsy I had done, it showed my kidney was in "borderline rejection" which is the lowest form of rejection. Thankfully we figured out what was going on in the matter of minutes. My kidney is allergic to my stomach meds (Prilosec) and the antibiotics they had me on right after transplant to stop any UTI's I may get. We stopped those meds right away, and started IV prednisone and all is well now.
I wasn't in the hospital for very long, and I think its because I'm very close to the hospital should something go wrong, and I am an extremely compliant patient. I did end up back in the hospital about a week later, but that is a different blog post that I will get to sometime this week. I feel like I have basically spent my entire month of October in the hospital! I was released today from my second admittance.
I honestly never thought I would receive a cadaver kidney. The best chance for someone like me to get a kidney is through living donor. I have had many people tested who did match, but there was always the antibodies that just got in the way. This kidney that I received was almost a damn near perfect match, from a middle aged man, and he was perfectly healthy. I would love to meet and or converse with my donors family, however that is up to them to contact me. I don't know anything about them, other than they had to make a hasty, very difficult decision to stop his life support so they could donate his organs.
Sometimes this entire situation feels like a dream. Is this real? Did I really get a kidney transplant? Am I really urinating after 8 years of not needing to pee? Will I be able to stop dialysis completely soon? Man, I hope so. I hope my kidney wakes up soon, so I can stop dialysis and do what I want to do. I want to get my GED and train to be a pediatric phlebotomist. I was basically forced to drop out of highschool when I started dialysis. I had both kidneys removed, and my first year of dialysis was absolutely horrible. I was so weak, I could hardly even sit up in bed without help. I even tried cyber school and I was just so exhausted I couldn't do it. Hopefully this kidney gives me a new lease on life, and I'll be able to start living my life. I have a wedding to plan too! How nice it would be to plan a wedding and get married not on dialysis!
Anyway, I hope I didn't bore you all with this blog post! I just wanted to explain why I haven't written and what has been going on. Please send all of your positive thoughts and good vibes my way so my kidney wakes up and starts urinating like crazy!
Thanks for reading!
Monday, September 26, 2016
Good News! Finally!
I have been having so many issues with my old, dead transplanted kidney that my Mom donated to me in 2008. Lately my hemoglobin has been extremely low. Meaning my red blood cells are somehow "disappearing". I have had a lot of inflammation according to my blood work as well. I was sent to see a Rheumatologist just to eliminate any auto-immune diseases that would be causing inflammation or the severe anemia I have been dealing with. It all came back negative for Auto-Immune diseases, however, through those tests I have been diagnosed with a bone disease called "Renal Osteodystrophy"
Renal Osteodystrophy is a bone disease that happens when your kidneys fail to maintain proper levels of calcium and phosphorus in the blood. It is common in people with kidney disease and/or on dialysis. However, it does not normally effect patients under 40. The treatment for this is to take calcium and vitamin D supplements however, I have been taking those supplements since 2014 when I had my Parathyroid removed. So now we aren't quite sure what to do for treatment. At least this explains why I have been in so much pain recently. Still doesn't really help the pain aspect of it. I am still in pain, and I am still taking pain medication.
We finally figured out that it was my transplanted kidney causing the inflammation and severe anemia, so we decided today at my yearly transplant evaluation that I will be having this kidney removed. Surgery is scheduled for November 16th. After I have this kidney removed we will be starting infusions of a drug called IVIG. We are hoping that this medication will lower my antibodies in my blood, so it will be easier for me to receive a new kidney. This medication is something I have wanted for a very long time, and I am so glad my doctor finally decided it was the right thing to do. I was sure this surgery wasn't going to take place until after the New Year, but thankfully they fit me in as soon as they could.
I am relieved that this was decided and I will start to feel better after I have this kidney removed, and of course all surgery is stressful, but I just cannot wait to be back to my normal self. I am not worrying about the stress and pain yet, I'm sure I'll get there when the surgery date gets closer, but as of now, I'm just relieved.
I don't really have much else going on right now. I've just been doing dialysis, and keeping myself as healthy as possible. I have been suffering from pain quite a bit and just trying to give myself some rest days. The weather is changing and of course that effects everything! I am so excited for the fall weather! It felt like the Summer heat was never going to stop. We were in a heat wave almost the entire Summer. Fall is definitely going to be a nice change once the weather actually gets where it needs to be.
Thank you all for reading so far. I'm sure I will have much more to write about with everything coming up. Keep checking back here to see what has been going on and what else I have to write about! I'm hoping to stray away from kidney disease and just write about Chronic Illness in general with my posts coming up. Keep a look out!
Renal Osteodystrophy is a bone disease that happens when your kidneys fail to maintain proper levels of calcium and phosphorus in the blood. It is common in people with kidney disease and/or on dialysis. However, it does not normally effect patients under 40. The treatment for this is to take calcium and vitamin D supplements however, I have been taking those supplements since 2014 when I had my Parathyroid removed. So now we aren't quite sure what to do for treatment. At least this explains why I have been in so much pain recently. Still doesn't really help the pain aspect of it. I am still in pain, and I am still taking pain medication.
We finally figured out that it was my transplanted kidney causing the inflammation and severe anemia, so we decided today at my yearly transplant evaluation that I will be having this kidney removed. Surgery is scheduled for November 16th. After I have this kidney removed we will be starting infusions of a drug called IVIG. We are hoping that this medication will lower my antibodies in my blood, so it will be easier for me to receive a new kidney. This medication is something I have wanted for a very long time, and I am so glad my doctor finally decided it was the right thing to do. I was sure this surgery wasn't going to take place until after the New Year, but thankfully they fit me in as soon as they could.
I am relieved that this was decided and I will start to feel better after I have this kidney removed, and of course all surgery is stressful, but I just cannot wait to be back to my normal self. I am not worrying about the stress and pain yet, I'm sure I'll get there when the surgery date gets closer, but as of now, I'm just relieved.
I don't really have much else going on right now. I've just been doing dialysis, and keeping myself as healthy as possible. I have been suffering from pain quite a bit and just trying to give myself some rest days. The weather is changing and of course that effects everything! I am so excited for the fall weather! It felt like the Summer heat was never going to stop. We were in a heat wave almost the entire Summer. Fall is definitely going to be a nice change once the weather actually gets where it needs to be.
Thank you all for reading so far. I'm sure I will have much more to write about with everything coming up. Keep checking back here to see what has been going on and what else I have to write about! I'm hoping to stray away from kidney disease and just write about Chronic Illness in general with my posts coming up. Keep a look out!
Monday, September 19, 2016
My Story: Kidney Disease, Kidney Failure & Dialysis
"You just do it. You force yourself to get up. You force yourself to put one foot before the other, and god damn it, you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That's how I've done it. There's no other way."- Elizabeth Taylor
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.
Saturday, September 10, 2016
Anemia-What Is It?
This past Friday I had my clinic appointment with my nephrologist. Over the last couple of years, my anemia has gotten quite severe. Friday we spoke about it in depth, and went over a few options to see what we can do to fix this, and hopefully make me feel better. When I mention that I am severely anemic, some people look at me like I have 2 heads. Anemia is something that effects me more than anything else when it comes to kidney disease and dialysis. Naturally, anemia effects everyone differently. The symptoms I have, may not be what other people suffer from.
I suffer from-
-Fatigue or loss of energy
-Racing heart beat with excessive movement (walking, stairs, running etc)
-Headaches
-Pale Skin
-Lack of appetite
Lets start with the definition of Anemia.
-A condition marked by the deficiency of red blood cells or of hemoglobin in the blood.
There are different types of anemia, I however have the kind where my red blood cells are just kind of magically disappearing. We've tested me for internal bleeding, we've tested my adrenal glands, thyroid glands and we've checked my stomach for any kind of ulcer or blood in my stomach. So far, we cannot find the reason for my anemia.
At my appointment on Friday we spoke about options. What other tests we can do and if any, what procedures I can have done. I take the highest dose of Mircera. Mircera is a medication used in patients who have anemia and who are on dialysis or have chronic kidney disease. In normal people (with working kidneys) your kidneys help produce red blood cells. Since I don't have kidneys, I have to have the aid of medication to help me produce red blood cells. However, it does not seem like the medication is working. We spoke about doing stool samples to double check my stomach, so we will be exhausting that idea, again. We also spoke about doing ANOTHER bone marrow biopsy (Not thrilled! They hurt pretty bad) my last bone marrow biopsy came back fine, and my doctor walked into my room and said "I have to admit, you've perplexed me. I don't know what is going on" so that was a bummer too.
I am currently seeing a Rheumatologist because on top of my red blood cells being extremely low, my labs are showing increased values of inflammation. Now, this is where things get tricky. I do have arthritis, however we are not sure if that is the cause for my inflammation levels to be so high. My nephrologist believes that my transplanted kidney from my mom (given to me in 2008) has become inflamed. If it is inflamed, it is indeed "stealing", "eating", or "destroying" my red blood cells, in which, making me feel like complete crap. I have a bunch of tests coming up for the Rheumatologist that I need to get done, and if they come back okay, we will have to move towards having my transplanted kidney removed.
Here is a problem with having my kidney removed. My transplant surgeon has wanted me to keep this kidney in, in the hopes that when or if I do get a new kidney, my old kidney will grab hold of my disease and it will keep it contained so it doesn't infect my new kidney. It is definitely going to cause an argument between my nephrologist and my transplant surgeon. I can't live like this though. My nephrologist made it a point to tell my that my quality of life is deteriorating day by day because of how low my hemoglobin is. I am constantly tired. I can sleep all day and all night and still not feel rested. I hardly eat anything. I have absolutely no appetite, and sometimes just the thought of food makes me nauseous. I have a headache everyday, and I'm limited to what I can do. I'm really not allowed to do anything in the heat or if its really cold. It can have dire consequences. Considering its been over 90 degrees and Fall is trying to come through, I have to be super careful. IM 25! I should be able to walk all over the damn place and not feel a thing! Now I walk a block and I have to go home and lay down and take a nap.
Dialysis wise I'm doing well. All of my labs are wonderful, aside from my inflammation markers and my hemoglobin. Its been almost 2 years of this anemic crap, and honestly, I'm getting pretty sick and tired of it. I think anemia has been my biggest challenge since I've been on dialysis. It has always been an issue, but lately its become a way of life for me. This overly exhausted, no appetite, constant headache feeling feels like my new normal. It shouldn't be my new normal.
If it does come down to taking my old transplanted kidney out, well.. I'll do what I have to do. If it makes me feel better, it's worth it. They'll most likely have to cut open my 5 inch scar from the original transplant to remove the kidney, which will indeed hurt like a you-know-what. Not only is it a rather large scar, it is loaded with scar tissue which will cause it to take a bit longer to heal.
Dealing with life everyday when you feel like you could fall over from exhaustion from just walking up the stairs in your home is not a way to live. No one should have to feel this crappy. When I tell people I'm tired or exhausted, they look at me like "Who isn't?" And I have to explain that this isn't just "I need to sleep" tired. This is bone tired. My eyes are tired, my hands are tired, my bones are tired, I can't talk I'm so tired. I am physically exhausted. Which at times, turns into mentally exhausted and I just kind of wish I had a switch to turn it all off. Give me 5 minutes to just turn it all off, and it'll be totally worth it.
I hope I explained all of this so it is understandable. Remember though, I am not speaking for everyone. These are MY experiences. Not everyone has the same experiences with any type of illness. Just remember, if someone says they're tired, they could indeed mean they are so tired, they can't stand for another minute. They're so tired, they may not be able to even eat. It's not laziness, it's illness. It's chronic illness. And its not pretty.
I suffer from-
-Fatigue or loss of energy
-Racing heart beat with excessive movement (walking, stairs, running etc)
-Headaches
-Pale Skin
-Lack of appetite
Lets start with the definition of Anemia.
-A condition marked by the deficiency of red blood cells or of hemoglobin in the blood.
There are different types of anemia, I however have the kind where my red blood cells are just kind of magically disappearing. We've tested me for internal bleeding, we've tested my adrenal glands, thyroid glands and we've checked my stomach for any kind of ulcer or blood in my stomach. So far, we cannot find the reason for my anemia.
At my appointment on Friday we spoke about options. What other tests we can do and if any, what procedures I can have done. I take the highest dose of Mircera. Mircera is a medication used in patients who have anemia and who are on dialysis or have chronic kidney disease. In normal people (with working kidneys) your kidneys help produce red blood cells. Since I don't have kidneys, I have to have the aid of medication to help me produce red blood cells. However, it does not seem like the medication is working. We spoke about doing stool samples to double check my stomach, so we will be exhausting that idea, again. We also spoke about doing ANOTHER bone marrow biopsy (Not thrilled! They hurt pretty bad) my last bone marrow biopsy came back fine, and my doctor walked into my room and said "I have to admit, you've perplexed me. I don't know what is going on" so that was a bummer too.
I am currently seeing a Rheumatologist because on top of my red blood cells being extremely low, my labs are showing increased values of inflammation. Now, this is where things get tricky. I do have arthritis, however we are not sure if that is the cause for my inflammation levels to be so high. My nephrologist believes that my transplanted kidney from my mom (given to me in 2008) has become inflamed. If it is inflamed, it is indeed "stealing", "eating", or "destroying" my red blood cells, in which, making me feel like complete crap. I have a bunch of tests coming up for the Rheumatologist that I need to get done, and if they come back okay, we will have to move towards having my transplanted kidney removed.
Here is a problem with having my kidney removed. My transplant surgeon has wanted me to keep this kidney in, in the hopes that when or if I do get a new kidney, my old kidney will grab hold of my disease and it will keep it contained so it doesn't infect my new kidney. It is definitely going to cause an argument between my nephrologist and my transplant surgeon. I can't live like this though. My nephrologist made it a point to tell my that my quality of life is deteriorating day by day because of how low my hemoglobin is. I am constantly tired. I can sleep all day and all night and still not feel rested. I hardly eat anything. I have absolutely no appetite, and sometimes just the thought of food makes me nauseous. I have a headache everyday, and I'm limited to what I can do. I'm really not allowed to do anything in the heat or if its really cold. It can have dire consequences. Considering its been over 90 degrees and Fall is trying to come through, I have to be super careful. IM 25! I should be able to walk all over the damn place and not feel a thing! Now I walk a block and I have to go home and lay down and take a nap.
Dialysis wise I'm doing well. All of my labs are wonderful, aside from my inflammation markers and my hemoglobin. Its been almost 2 years of this anemic crap, and honestly, I'm getting pretty sick and tired of it. I think anemia has been my biggest challenge since I've been on dialysis. It has always been an issue, but lately its become a way of life for me. This overly exhausted, no appetite, constant headache feeling feels like my new normal. It shouldn't be my new normal.
If it does come down to taking my old transplanted kidney out, well.. I'll do what I have to do. If it makes me feel better, it's worth it. They'll most likely have to cut open my 5 inch scar from the original transplant to remove the kidney, which will indeed hurt like a you-know-what. Not only is it a rather large scar, it is loaded with scar tissue which will cause it to take a bit longer to heal.
Dealing with life everyday when you feel like you could fall over from exhaustion from just walking up the stairs in your home is not a way to live. No one should have to feel this crappy. When I tell people I'm tired or exhausted, they look at me like "Who isn't?" And I have to explain that this isn't just "I need to sleep" tired. This is bone tired. My eyes are tired, my hands are tired, my bones are tired, I can't talk I'm so tired. I am physically exhausted. Which at times, turns into mentally exhausted and I just kind of wish I had a switch to turn it all off. Give me 5 minutes to just turn it all off, and it'll be totally worth it.
I hope I explained all of this so it is understandable. Remember though, I am not speaking for everyone. These are MY experiences. Not everyone has the same experiences with any type of illness. Just remember, if someone says they're tired, they could indeed mean they are so tired, they can't stand for another minute. They're so tired, they may not be able to even eat. It's not laziness, it's illness. It's chronic illness. And its not pretty.
Wednesday, September 7, 2016
A Bit Of A Quick Little Catch Up!
Hey everyone! It has been awhile since I have posted a blog post. Summer has been busy, and using an iPad with touchscreen isn't very "arthritis" friendly! For this blog post I'm just going to touch base on what has been going on since my last post. I hope you enjoy!
I have been having some awful symptoms of some sort of auto immune disease. My symptoms mostly show in my blood work (extremely high inflammatory markers, extremely low hemoglobin, and non reactive anemia. I am not reacting to any of the meds or blood transfusions for my anemia.) Aside from those symptoms, I have severe pain in my knees, lower back, and hips. I have seen a Rheumatologist and she's sent me for loads of blood work, x-rays, a bone density scan, and a possible MRI. We have no idea what is going on there, but hopefully something comes from all of these tests. With my hemoglobin being so low, I have been so exhausted and I keep getting headaches. I did my last set of labs last week and got them back today. My blood count has dropped from 8.5 to 8.1. It's not a huge dip, but enough that I can feel it in my body. It's been a bit rough walking around with such a low blood count this summer. The heat effects me more, and I have been so very busy this Summer!
I had to have a procedure done on my dialysis access last month which didn't go as smoothly as it normally does. The procedure I have to go for once a month is called an Angioplasty. What they do for this is put a needle in the bottom of my dialysis access, and run a wire all the way through my access. They inject dye in my access and search for any type of narrowings along my graft. Once they have located the narrowing, they insert a balloon to the area of the narrowing and blow up the balloon to kind of expand the access. Normally I have this done with no problems, however, this last time was just terrible. Somehow, and I'm not sure how, they ended up infiltrating my entire access. Whatever they did caused my entire arm to swell twice the size, and bruise more than I have ever bruised before. It was so painful I ended up having to skip a couple dialysis treatments to let my arm have a bit of a break. Thankfully it healed up with no further issues.
Dialysis wise everything has been going well. I haven't had any issues with putting my needles in or anything like that. August 19th was my 1 year anniversary on home hemodialysis! I have been telling anyone who will listen why home hemodialysis is so much better than in center. I have never felt better! Well, at least dialysis wise I haven't felt better.
This Summer has been so busy! I know the only reason I was able to do all of the things I did this Summer is because of my switch to home dialysis. My fiancé and I took the kids to the Jersey Shore in August, and I was able to spend all night Friday walking around the boardwalk, all day Saturday (about5-6 hours) in the ocean, jumping waves and swimming all day. Then all night Saturday walking around the boardwalk again! It felt so nice to be able to actually do things and not suffer for it.We then had a car show to attend which was a weekend long thing. A lot of walking on a lot of uneven ground, but I still did it, and I'm damn proud of myself for doing it. In one day I had 6,660 steps! If I would have done that while I was still doing in center dialysis, I would've needed to take a week of bed rest!
I know it has been quite some time since I've last written here, but I was originally using my iPad to write out my blog. Because of dialysis and the touchscreen it would cause pretty nasty cramps and arthritis pain in my hands. I was unable to blog for awhile. I just recently bought myself a laptop and I hope to continue writing more about my medical journey. My next post I have to have done will be my story. My entire health story. My experience with kidney disease, surgeries, dialysis, and all the other chronic illnesses that I have because of kidney disease and dialysis. This isn't a very informative post, but I figured it wouldn't hurt to let you all know that I will be getting back into blogging about what I know pertaining to chronic illness. Thank you to everyone who has stuck with me during this, and thank you to all my new readers! Please leave a comment and let me know what you want to hear or if you have any questions for me.
I'm going to get started on my next post ASAP so keep a look out!
I have been having some awful symptoms of some sort of auto immune disease. My symptoms mostly show in my blood work (extremely high inflammatory markers, extremely low hemoglobin, and non reactive anemia. I am not reacting to any of the meds or blood transfusions for my anemia.) Aside from those symptoms, I have severe pain in my knees, lower back, and hips. I have seen a Rheumatologist and she's sent me for loads of blood work, x-rays, a bone density scan, and a possible MRI. We have no idea what is going on there, but hopefully something comes from all of these tests. With my hemoglobin being so low, I have been so exhausted and I keep getting headaches. I did my last set of labs last week and got them back today. My blood count has dropped from 8.5 to 8.1. It's not a huge dip, but enough that I can feel it in my body. It's been a bit rough walking around with such a low blood count this summer. The heat effects me more, and I have been so very busy this Summer!
I had to have a procedure done on my dialysis access last month which didn't go as smoothly as it normally does. The procedure I have to go for once a month is called an Angioplasty. What they do for this is put a needle in the bottom of my dialysis access, and run a wire all the way through my access. They inject dye in my access and search for any type of narrowings along my graft. Once they have located the narrowing, they insert a balloon to the area of the narrowing and blow up the balloon to kind of expand the access. Normally I have this done with no problems, however, this last time was just terrible. Somehow, and I'm not sure how, they ended up infiltrating my entire access. Whatever they did caused my entire arm to swell twice the size, and bruise more than I have ever bruised before. It was so painful I ended up having to skip a couple dialysis treatments to let my arm have a bit of a break. Thankfully it healed up with no further issues.
Dialysis wise everything has been going well. I haven't had any issues with putting my needles in or anything like that. August 19th was my 1 year anniversary on home hemodialysis! I have been telling anyone who will listen why home hemodialysis is so much better than in center. I have never felt better! Well, at least dialysis wise I haven't felt better.
This Summer has been so busy! I know the only reason I was able to do all of the things I did this Summer is because of my switch to home dialysis. My fiancé and I took the kids to the Jersey Shore in August, and I was able to spend all night Friday walking around the boardwalk, all day Saturday (about5-6 hours) in the ocean, jumping waves and swimming all day. Then all night Saturday walking around the boardwalk again! It felt so nice to be able to actually do things and not suffer for it.We then had a car show to attend which was a weekend long thing. A lot of walking on a lot of uneven ground, but I still did it, and I'm damn proud of myself for doing it. In one day I had 6,660 steps! If I would have done that while I was still doing in center dialysis, I would've needed to take a week of bed rest!
I know it has been quite some time since I've last written here, but I was originally using my iPad to write out my blog. Because of dialysis and the touchscreen it would cause pretty nasty cramps and arthritis pain in my hands. I was unable to blog for awhile. I just recently bought myself a laptop and I hope to continue writing more about my medical journey. My next post I have to have done will be my story. My entire health story. My experience with kidney disease, surgeries, dialysis, and all the other chronic illnesses that I have because of kidney disease and dialysis. This isn't a very informative post, but I figured it wouldn't hurt to let you all know that I will be getting back into blogging about what I know pertaining to chronic illness. Thank you to everyone who has stuck with me during this, and thank you to all my new readers! Please leave a comment and let me know what you want to hear or if you have any questions for me.
I'm going to get started on my next post ASAP so keep a look out!
Tuesday, July 26, 2016
Chronic Illness & Romantic Relationships
Having a romantic relationship while having a chronic illness can be extremely difficult. It takes a very strong person to be able to handle a partner with any kind of chronic illness. I have had both good and bad relationships. When I was 15 I met a boy in high school and we became best friends and shortly after we started dating. We spent almost everyday together, and then I got very sick. In the year of 2008, my kidney disease went into full blown kidney failure. I had to have my kidneys removed, and start dialysis right away. I spent a very long time in the hospital, and I was very ill when I first started dialysis. For an entire year, I was very weak, and I vomited everyday. I couldn't keep any food down and I couldn't even sit up in bed. My ex boyfriend wanted to do things. He wanted to go out, and I couldn't. Eventually it caused us to break up and go our separate ways. When you're in a relationship and one of you is able bodied and the other is chronically ill, it can create some tension in the relationship. After that relationship I decided to stay single for awhile and just focus on me and my health.
A few years after deciding to remain single, I met a man through mutual friends. We started talking and hanging out with our group of friends, and eventually started hanging out alone. **The first time we hung out alone, I had started a new medication that day, and I threw up in his car! I was absolutely humiliated! I had him bring me home right away. Wouldn't you know he texted me a few minutes later checking to make sure I'm okay, and asked if we could hang out again sometime soon. At that moment I knew he was the perfect man. From the very beginning of our relationship, I was completely and 100% honest with him about my illness. I explained how bad it can get, and that some days I have good and bad days.
In May of 2015 I had to have surgery on my dialysis access to create a new path for my access. They had to give me antibiotics before surgery, so they started it about a half hour before I went back for surgery. It was an antibiotic that I have had more than a dozen times. It is called Vancomycin. They continued the medication while wheeling me back to the OR and had given me the first set of anesthesia. I started to fall asleep, and shortly after that my nurse who was prepping me for surgery noticed that I wasn't breathing well. My chest was very wheezy and my breathing was very shallow. Everything happened so quickly. My heart ended up stopping for 25 minutes and my anesthesiologist did CPR on me the entire time. Eventually my heart started up again and they immediately put me on a ventilator, started me on very powerful drugs to keep me comfortable, but not quite in a drug induced coma. I was sent up to the ICU and stayed there for about 4 days. Chris and my mom were with me that day, and my doctor pulled them aside and told them what happened. My doctor told both of them that he wasn't sure if I'd wake up, or if when I did wake up, if I would have any brain damage. Chris stayed with me the entire time I was in the hospital. We joke about it now, but I always say "If he didn't leave me when I died on him, I think I've locked him in." He was ready and willing to stay with me even if I did have brain damage. At that point I knew he was the most wonderful man I had ever met, and I just want to spend the rest of my life with him.
May 14 2016 was Chris and my 3 year anniversary. We didn't have much to do that day and we didn't make any plans, so he ended up coming over later in the day. He arrived at my house with a dozen red roses and a wrapped present. I put the roses in a vase with water right away, and went to open my present. At this point we were in the kitchen, and when I started to open it he said "No wait, go in the living room where your mom is." We went and sat down on the couch and I opened my present, and it was a picture book that read "The Story Of Us" and had pictures of us throughout our relationship with special lyrics under the pictures. The last page was quite a special surprise! It read "Andrea, Will You Marry Me?" With a photo of my engagement ring! I was absolutely shocked! No one had expected him to propose. The first thing I said was "Really? Are you serious?" All while crying my eyes out. When I looked up at him he was holding my ring. I took it from him and put it right on my finger. He eventually asked me "So, is that a yes?" And I said "Of course it's a yes!" And jumped on him crying and hugging and kissing him. We are getting married!
Through all of my health problems and all the crap I put him through emotionally with my health problems, he still loves me. He still chose me. He chose to be with me forever. If that isn't a stand up guy I don't know what is. And for that, I will love him forever and always.
I've dated my fair share of guys who just couldn't handle my health problems. They just didn't understand and started to back away when things got hard. I'm a firm believer of being completely upfront and honest with people about my illness, so I've always told anyone who tried to be in a relationship with me the good and the bad things. Most of them ran away quite quickly, and some of them were just very intrigued, but not ready for that kind of commitment. Finding someone who is willing to take on a "sick person" in a relationship is hard, but it's also very selfless. Hell, it's hard in general to find the right person, but it is doubly as hard when you're sick. I got extremely lucky to find Chris. He is quite older than me, and I believe that's why we get along so well. When you've been sick as long as I have, you tend to grow up very quickly.
We do have a date in mind for our wedding, and it's not until 2018. We don't want to have to rush to plan everything, and who knows, maybe I'll get the call for a kidney transplant before then!
Thank you all for reading! I hope I have inspired people to keep looking for that perfect special someone. It CAN happen! 😊
A few years after deciding to remain single, I met a man through mutual friends. We started talking and hanging out with our group of friends, and eventually started hanging out alone. **The first time we hung out alone, I had started a new medication that day, and I threw up in his car! I was absolutely humiliated! I had him bring me home right away. Wouldn't you know he texted me a few minutes later checking to make sure I'm okay, and asked if we could hang out again sometime soon. At that moment I knew he was the perfect man. From the very beginning of our relationship, I was completely and 100% honest with him about my illness. I explained how bad it can get, and that some days I have good and bad days.
In May of 2015 I had to have surgery on my dialysis access to create a new path for my access. They had to give me antibiotics before surgery, so they started it about a half hour before I went back for surgery. It was an antibiotic that I have had more than a dozen times. It is called Vancomycin. They continued the medication while wheeling me back to the OR and had given me the first set of anesthesia. I started to fall asleep, and shortly after that my nurse who was prepping me for surgery noticed that I wasn't breathing well. My chest was very wheezy and my breathing was very shallow. Everything happened so quickly. My heart ended up stopping for 25 minutes and my anesthesiologist did CPR on me the entire time. Eventually my heart started up again and they immediately put me on a ventilator, started me on very powerful drugs to keep me comfortable, but not quite in a drug induced coma. I was sent up to the ICU and stayed there for about 4 days. Chris and my mom were with me that day, and my doctor pulled them aside and told them what happened. My doctor told both of them that he wasn't sure if I'd wake up, or if when I did wake up, if I would have any brain damage. Chris stayed with me the entire time I was in the hospital. We joke about it now, but I always say "If he didn't leave me when I died on him, I think I've locked him in." He was ready and willing to stay with me even if I did have brain damage. At that point I knew he was the most wonderful man I had ever met, and I just want to spend the rest of my life with him.
May 14 2016 was Chris and my 3 year anniversary. We didn't have much to do that day and we didn't make any plans, so he ended up coming over later in the day. He arrived at my house with a dozen red roses and a wrapped present. I put the roses in a vase with water right away, and went to open my present. At this point we were in the kitchen, and when I started to open it he said "No wait, go in the living room where your mom is." We went and sat down on the couch and I opened my present, and it was a picture book that read "The Story Of Us" and had pictures of us throughout our relationship with special lyrics under the pictures. The last page was quite a special surprise! It read "Andrea, Will You Marry Me?" With a photo of my engagement ring! I was absolutely shocked! No one had expected him to propose. The first thing I said was "Really? Are you serious?" All while crying my eyes out. When I looked up at him he was holding my ring. I took it from him and put it right on my finger. He eventually asked me "So, is that a yes?" And I said "Of course it's a yes!" And jumped on him crying and hugging and kissing him. We are getting married!
Through all of my health problems and all the crap I put him through emotionally with my health problems, he still loves me. He still chose me. He chose to be with me forever. If that isn't a stand up guy I don't know what is. And for that, I will love him forever and always.
I've dated my fair share of guys who just couldn't handle my health problems. They just didn't understand and started to back away when things got hard. I'm a firm believer of being completely upfront and honest with people about my illness, so I've always told anyone who tried to be in a relationship with me the good and the bad things. Most of them ran away quite quickly, and some of them were just very intrigued, but not ready for that kind of commitment. Finding someone who is willing to take on a "sick person" in a relationship is hard, but it's also very selfless. Hell, it's hard in general to find the right person, but it is doubly as hard when you're sick. I got extremely lucky to find Chris. He is quite older than me, and I believe that's why we get along so well. When you've been sick as long as I have, you tend to grow up very quickly.
We do have a date in mind for our wedding, and it's not until 2018. We don't want to have to rush to plan everything, and who knows, maybe I'll get the call for a kidney transplant before then!
Thank you all for reading! I hope I have inspired people to keep looking for that perfect special someone. It CAN happen! 😊
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