It’s time to talk about kidney brain and all the other weird side effects of kidney disease. Renal failure can be like a chameleon, constantly changing colors, or symptoms. Until you get that first elevated creatinine, it can disguise itself as any number of diseases. It also likes to pair up with other diseases such as diabetes, high blood pressure, thyroid, and many cancers.
In my twenty years of being diagnosed with renal disease, I never once felt any burning sensation or pain in the area of the kidneys. I slowly lost my sense of smell, but never got the metallic taste in my mouth until after I started dialysis. There were never any visible signs of fluid retention in my hands or feet, but I carried it secretly, intra-cellularly, in the lungs and other organs, making it impossible to lose weight. Many people report severe itching, which is the parathyroid contribution to kidney disease. At my worst, I had a fine red rash over half my body, which burned like acid! Some people describe it as itching from the inside out. Another dialyzor recalls smelling cigarette smoke for the six months prior to starting dialysis. Continue reading
Family and kidney disease can be complicated. Actually family and most any disease can be complicated, but when dialysis is involved there are no rules.
I have been fiercely independent all my life. It is impossible for me nto ask for help. Remember Fonzie when he tried to say he was sorry (I know I’m dating myself here)? Well, that’s me trying to ask for help. Continue reading
This is my final post on the subject. My grief will remain private from hereon out! However, I have already learned an important lesson about dialysis, which I feel compelled to share with you
Home hemo is not an easy choice. Originally, I wanted the freedom I thought it offered. As I got into training, with a care partner(s), 70 pound machines, and a storeroom of treatment supplies, I realized that to pick up and go was not going to be as easy as I originally fantasized. Add to that the constant alarms, fluid leaks, forgotten clamps, and one would seriously wonder why anyone would undertake home hemodialysis. Yet I did, and, with all its ups and downs, I still love it! Continue reading
As people with end stage renal disease (ESRD), we are in the unique position of being able to control our destiny. Nothing brought this home to me more than the recent death of my grandson.
Trite but true, my first thought was “why, dear God, didn’t you take me instead.” I was so prepared to go, and only chose dialysis because I knew Gabe still needed me. I would gladly have gone before him, and, in fact, I almost did. If I hadn’t been so selfish, wanting to stay here, thinking he still needed me, I could have been waiting on the other side with arms open wide. Or even better, maybe God would have spared him altogether, and I could have been his guardian angel, instead of him being mine! Continue reading
Sometimes, there is a day in your life that you know will change you forever. Sometimes it’s good, sometimes not. Some people never even experience such a day. I’m not talking about the call that tells you your new kidney has arrived, the birth of a child, or a wedding, although all of these are life changers. Continue reading
The elusive dry weight. That magical number that controls every treatment. Take off too much and you can experience the dreaded cramping. Take off too little and you leave with that heavy feeling, or even worse. The bottom line is that the kidneys control the fluid in your body, and how your body gets rid of it. If they are not working properly, your body is going to have a fluid buildup somewhere. Continue reading
One thing about dialysis, it is not for the faint of heart! You have to get used to the sight of blood very quickly. Another day I waited the usual 10 minutes after taking the needles off, and holding the sight to stop the bleeding, I stood up to gather my things. I heard the nurse up front yell” Sit down, Mrs. G, sit down! I looked down just in time to see blood spewing from my arm like a volcano; all over me, my gear, my clothes, my feet, and the floor. That was the last time I wore a pink shirt and khaki pants to dialysis. Black is the new red, in my book!! Continue reading
Let’s talk about the fistula. Honestly, can anyone say they really knew what a fistula was before they got one? I for one, had not a clue. Which for me, I still say, was a good thing or I might never have signed the papers agreeing to the surgery.
I thought I knew what a thrill was, even if it’s been many years since I’ve had one, but nothing prepared me for that constant buzzing, or “thrill”, that I now feel in my arm. Continue reading
Now that I’m settled into the routine of home hemo treatments, I can take a moment to reflect on what it was like to do dialysis in-center. I remember early on, like 10 years ago or more, when the nephrologists were pushing me into starting dialysis, I went to several clinics (full disclosure, the clinics were owned by those self-same nephrologists). All I remember was the overwhelming smell of death, and staring at what appeared to be comatose bodies hooked up to machines.
Is it any wonder I refused to consider dialysis? I recently told my newest, and bestest, nephrologist, that his colleagues had done a grave disservice to potential dialysis users by not presenting a more positive outcome, and explaining that it really was possible to achieve life after dialysis. He agreed! Continue reading