family as caregivers

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

Respite

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

To live or die, that is the question

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

Derailed

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

dry weight, that elusive, magical number

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

my fistula: good, bad, and the ugly, part II

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

my fistula: good, bad, and the ugly, part 1

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

in-center

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