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Wednesday, February 22, 2017

The "A Medical Procedure and Relaxation Techniques", edition.

Good Wednesday morning. Talk about an uninteresting title. I win the prize today!  Anyway. A few weeks ago I mentioned that I have to take a medication to control my parathyroid (PTH) levels. After a while I was unable to tolerate the medication. It made me so sick that the day was a lost day as I writhed in agony.  Anyway. The optimal PTH levels are between 200 and 600.  Right now I'm over 2000.  There are also residual effects on my calcium and phosphorus numbers. However, for the moment, those levels are fine, much to the surprise and relief of my nephrologist and dietician. We didn't want to press my luck.  

So how did we get here?  In my November dialysis team meeting we decided I needed to remove the parathyroid, a parathyroidectomy. The surgery would require an incision in my neck to remove the offending 1 or more of the 4 PTH glands.  My neph also suggested a new method, a noninvasive method, ablation. I'll get into that later. 

But. Because I have a HMO, I needed to get the referral from my primary care physician, PCP. I had an appointment with him in December. And asked for th referral. He was appalled that I asked for the referral. What a horrible idea and horrible surgery and surely there was a better way. And proceeds to google options (massive eye roll). He tells me to have my nephrologist contact him. ..and in the meantime my PTH levels are rising. 

I relay the message to my nephrologist at my monthly December meeting. The next day I get a call from my nurse that my PCP has approved the request. Nephrologist - 1' Primary Care Physician - 0. I just needed to determine if wanted the parathyroidectomy or the ablation. I chose the ablation. Appointments made. Labs looked at and the ablation occurred yesterday. Two weeks ago an ultrasound was taken of my PTH glands. There are 4 of them. The one on my left side was enlarged. The doctor showed me as he was doing the ultra sound. 

Yesterday I was back in the office. The ablation process is a needle with concentrated alcohol is inserted into the PTH gland and the alcohol shrinks the gland. Needles don't bother me. So the idea of a needle in my neck didn't concern me..much. Lol. When I was in ICU, I was getting blood thinning meds injected in my stomach(!).  I digress. The procedure took 2 injections. The first was was uneventful. The injection itself didn't hurt. A local anesthetic was applied. I did feel the fluid going in. It was uncomfortable but not unbearable and didn't last long.  The 2nd injection. I felt the fluid more and started coughing when the needle was removed. But. The procedure lasted less than 10 minutes. And that was it. The neph showed me the ultrasound of how the gland looked after the alcohol injection. 

So how did tolerate this unusual needle sticks in my neck?   Way back when, at all girls catholic high school, we had retreat at a house of local monks. They taught us the technique. I've used this tool my entire life to relax. It's worked for me all these years and I certainly used it yesterday. I regulate my breathing and went to my happy place. And it's the same place I went when we were learning!  

And so here I am, doing treatment this morning. Still fighting the cold, but the procedure is over and now we'll see the results in about a month. I'm feeling good about what the results will show but I still have the surgery as backup if there are any issues. 
Well that's it for today. The weather is still nice. Wore my open toe shoes during this warm spell when I got too lazy to put on shoes. Have a wonderful day!!

Sunday, February 12, 2017

The "Attitude and Dialysis", edition.

Good Sunday morning. The good thing about using Facebook as the medium for pushing out my blog is Facebook does that memories thing. I get a chance to read what I wrote 2-4 years ago. Things I forgot I wrote about. Whew. Been doing dialysis for four years.  Anyway. Reading past entries reminds of things I've forgotten. And a lot of the entries gives me perspective on my current attitude and take on dialysis and ESRD. 

Once I was out of the hospital, I was  still weak.  I used a walker...and thanks to the nurse who woke me in the middle of the night to make me get used to using the walker. She distracted me by having me talk about Shawn. Lol. Smart woman!  Once out of the hospital I started going to a dialysis clinic. The last thing I wanted to do was to get up and get moving. I was just too tired and weak. And it was winter. And I had no clothes that fit. Whine whine whine. 

I got to the clinic that first day and I was tired and cranky. And the people in the waiting room didn't look too happy either. But after a more times, the patients opened up and started chatting with me and giving me tips and suggestions. 

One day I noticed a lady who was dressed to the nines. Looking like she was on her way to church. Even her cane was bedazzled!!  Hair done, nails done and yes, she  was a patient. Something clicked. I remember my mom had drilled into that when I go out I should always look presentable.  So I decided to up my game when I went to treatment. 

Within a few weeks I went to get a haircut. Yes it was an ordeal sitting in the chair, but I needed a haircut. A few weeks later I got a manicure. I got some fashionable clothes that fit, even a stylish red coat.  I started wear jewelry and even started carry that sharp purse I'd purchased before I got so sick.  I was still weak and tired. And periodically passing out. But!  I felt better because I thought I was looking better. And I started going to treatment with..well not with a frown. And sometimes with a smile. And a smile made a difference.  It go to the point where I entered the treatment area greeting staff and patients with a hearty hello and a smile. And they'd smile and greet me back. Well most of them. Lol. My crowning moment was when I came in after a weekend and asked a patient how he was doing and he told me with a smile that he had diarrhea that weekend but he was ok now. Roflamo. Talk about TMI. Lol.  The nurses and techs chuckled. And all I could say was I was glad he felt better. Lol. 

I guess my point is that more often than not I just carried a positive attitude. Yes, there are days when I wallow in self pity. But as long as I can function I keep on pushing. And it's all in the attitude. Now I have a caveat. This is personal to me. Not all people with ESRD, on dialysis or any chronic disease will have a positive attitude. Nor should they be expected to have a positive attitude. I dunno it's like I push negative thoughts aside...until they just pop out. And that's fine. But the positive attitude was reignited when I saw the lady dressed to the nines. And did I mention she always had a smile and greeted everyone with that smile?  And it's really hard to smile after having your body getting beat up after 3-4 hours of incenter dialysis. It's all in the attitude. 

That's it for today. I still hate dialysis and everything that goes with it, but I see nothing positive about stewing about the situation. Sometimes all you need to feel better is a little lipstick....or a bedazzled cane!!

Enjoy your day! 

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 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!!!