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!
Monday, September 26, 2016
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!
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