Top 25 Dialysis Blogs

Dialysis Blogs

Tuesday, February 7, 2017

The "Answering the Questions", edition.

Good Wednesday morning!  People have been asking me questions about dialysis and kidney failure and End Stage Renal Disease (ESRD).  So I'm going to answer as best I can. 

1.  How long have you been on dialysis?  
I've been on dialysis since November 2012. I probably stared feeling the effects of the kidney failure for a full year prior to the kidneys failing. However none of the symptoms pointed to obvious kidney failure. In hindsight, though, the symptoms were classic kidney failure. 

2.  What caused your kidneys to fail?  
The doctors are not 100% sure. The primary reason is more than likely due to a genetic blood disorder, acute intermittent porphyria. I've had several families members through the years who've had kidney transplants or died of kidney failure. I was also prescribed Celebrex for joint pain which probably exacerbated the problem. I did not have the classic indicators such as diabetes or lupus. 

3. What were your symptoms?  
The first thing I remember is "morning sickness". For months I'd wake up in the morning with debilitating dry heaves. Enough that it would wear me out and I'd have to call in sick. I also had back pain, which led to the steroid shots in the back (ugh). I was constantly tired and I lost weight. The final symptoms were a metallic taste in my mouth. And finally pulmonary edema (shudder)... Fluid around my lungs. I couldn't breathe. 

4. What is dialysis? 
The short answer is moving toxins and extra fluid out of the body. Because my kidneys don't work, my body retains wastes (toxins) and fluid. The act of dialysis removes wastes and fluid. Native kidneys work 24 hours a day, non stop. My treatment of dialysis is 3.5 hours five days a week. I'm missing out on a lot of waste removal. Oh yeah,  I don't urinate..no kidneys. 

5. When do you do dialysis (we call it treatment)?
Because I opted to do hemodialysis at home, my schedule is flexible people familiar with dialysis are most likely familiar with people going to a dialysis center 3 times a week for treatment. And that's fine, but dialysis is rough on the body and doing it three days a week is shocking your heart and other organs each time. Home hemodialysis is gentler on the body. Doing home hemodialysis I do treatment 5 days a week and my schedule is pretty flexible. I'm not limited to scheduled time in a dialysis center....before I starred at home I'd be at the center at 5:30 AM to 9:00 AM every Monday, Wednesday and Friday. 

6.  How do you do dialysis?
I do hemodialysis...blood dialysis. This means I insert 2 needles in my arm in fistula that was created during a surgical procedure. One needle is for blood out...removing toxins and fluids and one needle blood in...returning the clean blood to my body. 

7. You look pretty healthy. 
Well yes. When I go out in public. But I still have limitations and can go from feeling good to bad in no time flat. My blood pressure may drop suddenly. Or I may just feel tired. And standing for long periods of time is an issue, although working with the trainer is increasing my stamina and strength. I'll get heartburn or severe bouts of nausea. And yes, I get depressed. My quality of life is dependent on doing treatment often. Otherwise my body will fill up with toxins and fluids. And I will die. 

8.  Is there a cure for ESRD/kidney failure? 
No. Once the kidneys are gone that's it. A transplant is not a cure, it is a treatment. 

9. Are there dietary restrictions?
Oh yes. Foods with potassium, phosphorous and sodium are restricted. Tomatoes, potatoes, coffee, cheese, caffeine, chocolate.   The list goes on. But by doing home hemodialysis, the diet is much less restricted because I'm doing dialysis more often!  And I have to eat lots of protein. Supposed to have 7 servings a day. Impossible!!! And my numbers show it. Ugh. 

I take medications which sort of replace what my kidneys cannot produce. I get iron injections every 2 months. I take a phosphorus binder to reduce the phosphorus in my body. Too much make my bones weak. I have to take vitamin D. And finally I take a med to control my parathyroid glands, which can also effect my bones. Unfortunately I have developed a reaction to that medication. So I am meeting with an endocrinologist to get 1 or more of the 4 glands removed. More on that later. 

So you had questions. I have answers!  Feel free to ask if I haven't addresses your questions. I am not insulted if you approach me about dialysis or what I'm going through. How else will you know? 

That's it for today!  Training for nocturnal home hemodialysis will start very soon. Yes. I'll go into detail later!  Have a great day. And it's in the 70s here!  Wonderful!!!



No comments:

Post a Comment