Stayin’ alive

A kidney dialysis/transplant diary

Let’s try this again

I was in the hospital a full week, returning home on a Monday afternoon thanks to the help of long-time friend and coworker Mary S.  She went shopping for something for me to wear home since I told Paula to “burn” the nightgown I’d worn into the hospital and the robe I’d worn was somehow lost in the laundry.

But before I leave the hospital, let me say a few things:

St. Luke’s where I was hospitalized is among the Top 100 hospitals in the United States. They strive to do things right and in most areas they do. But, this I know to be true …

  • You are your own best advocate
  • You have to be an active participant in your own care. Watch like a hawk but don’t be a bitch
  • You have to ask questions, listen to the answers and ask more questions if the answers aren’t clear
  • If you don’t understand — jargon or procedures, whatever — say so. It certainly helps to demystify things 
  • Don’t assume all staff are all knowledgeable about your case, they have many different patients to deal with
  • Be honest — even if it hurts to admit you’ve not been following the program — medical staff need to know exactly what they’re dealing with to give you the best treatment. And you know what, they’re human, too, so they do understand what a slip is.
  • Don’t under report, the mantra of my best-friend nurse, should be taken seriously. Tell the doctors and nurses everything even if it seems totally unrelated.
  • Try to be tolerant — of interrupted sleep, longish waits for treatments, lots of needle sticks for lab work, etc. — You may feel crappy, but taking it out on the staff isn’t fair or productive. I for one don’t want any staff member reluctant to answer my call light.
  • If you have suggestions about how patient care might be improved, make them in a positive manner. They really do want to make you as comfortable as possible.
  • A sense of humor helps. After all, laughter is the best medicine.
  • Don’t leave your false teeth out for an entire week. You may not be able to get them back in your mouth. 

I thought alot about quality vs. quantity while I was hospitalized, a captive audience of my own thoughts, you might say. I also was starting to feel better as my blood became less toxic. There were some things I wanted to change in my life, practical, immediate things.

I wanted to find some help to get life back into order at home. In fact, I wanted to find a new home, too. As soon as possible. That would be no easy task.

Actually, just getting the laundry done at home was no easy task since the washer and dryer were down a steep set of stairs in the basement.  I shouldn’t be lugging laundry down and up stairs and the basement, always damp and moldy, was not the best place for me.

I needed to talk with the hospital social worker to see if by some chance I could qualify for homemaker/health aide assistance at home. The answer, of course, was no. I’m too young for Medicare and even though I work for a newspaper (certainly not the most high-paying career), I make too much money to qualify for assistance in paying for the services.  The best he could offer was a list of agencies in the area who provide such services.

I took the list with me when I left the hospital determined to do my homework while I was recuperating for the next week or so at home.

But Tuesday, I had to go for my second out-patient dialysis treatment. The hospital dialysis treatments were and are still kind of a blur. I dozed through most of the three treatments there, mostly from medication, I think.

That Tuesday treatment was interesting to say the least.  The machines at the Mercy Outpatient Dialysis Center, where I receive my treatments, are sensitive to miniscule blood clots, clots that might never cause a problem in the human body set off alarms in the dialysis machines and that first treatment, my dialyser clotted three times. “I’ve never seen this happen before in the seven years I’ve worked here,” Kent, a technician said.

Oh, good. Somehow that’s not a comforting feeling. Being on a negative medical (b)leading edge is not one of the things I wanted to experience. The other major problem (that still remains about twice a week) was butt numbing. Sheesh. Four hours is a long time to sit in virtually one position.

During that first week of dialysis treatment I experienced another of the side effects of dialysis. Cramps. Actually, there should be a stornger, more intense word for what you can experience when the machine pulls the fluid too swiftly or too much from your body.

Cramps signify something you can “walk off” or rub out.  These respond to little else than adding some of the fluid you worked so hard to take out back into the blood stream.  They don’t hit just one area or one muscle. At least not in my legs, they cramp 360-degrees aroun the midcalf and move down over the foot, either on the top of arch or to one side. 

 When the muscles start to pull in, you have no control and the pain can be intense, again a weak word. I hurt so badly that I could not not verbalize. I was doing well just to keep my language in the realm of acceptable. I could feel, too, and know from experience how hearing someone nearby in medical crisis can trigger a similar crisis. I was panting, hurting, in a cold sweat, trying to stretch to get the cramp to release. The nurses were forcing saline back into my blood through the umbilical cord.

Just as the cramp begain subsiding a smidgen, someone else went into distress and their alarm started beeping.  The flock of nurse by my side, of course, flew to that patient. I waited as long as I could before I called someone back to my side because I knew I was going into shock from the pain.  I was shaking uncontrollably and felt faint.

Yes, dialysis can be hard on the body.  Very hard.


October 28, 2007 - Posted by | dialysis, health, kidney, transplant


  1. It may take a while for them to get your dry weight right. Cramping can be a sign that they don’t have your correct dry weight and are pulling too much fluid off each treatment. Talk to your neph. about it.

    Comment by hymes | October 28, 2007 | Reply

  2. I thought that ESRD automatically qualified you for Medicare. I could, of course, be wrong but you might want to double check what the social worker told you.

    Comment by pdavis | October 29, 2007 | Reply

  3. Thanks for the comments. You’re right, Hymes …. it will take them awhile to get my dry weight right and since I am still trying to lose weight, it’s even more difficult. But that’s what they’re there for, right? Unfortunately for me it seems even if I adhere closely to my liquid restriction — 48 oz. a day including all liquids — I retain a lot. I do still void but have noticed that’s lessening.

    As to qualifying for Medicare, yes, I could automatically qualify for disability, according to my social worker, but I still need to work and am not yet of retirement age so the benefit of a homemaker health aid are not open to me.
    I have found a good, relatively inexpensive ($17 an hour) locally-owned service though and they’ve been of untold help to me.

    Comment by iowakitkat | October 29, 2007 | Reply

  4. Just found your site. I will keep you in our thoughts and prayers.

    Take care!

    Comment by teacher of 5 | October 29, 2007 | Reply

  5. Even if you had Medicare, you still wouldn’t be able to get homemaker health aid. Medicare doesn’t pay for it unless you are in hospice or homebound and even then I don’t think they pay for homemaker assistance.

    I’m sorry you are going through all these cramps. Are they sure you are retaining fluid rather than gaining actual weight since you were just in the hospital and may have lost real weight there? Just a thought.

    Comment by hymes | October 29, 2007 | Reply

  6. My weight has been staying fairly steady though I have been trying to lose weight, a discouraging battle since I’m older, less active and my metabolism seems more prone to gain weight post diabetes. It’s a lifelong battle that I seem unable to conquer. The first time I was put on a diet I was 8 years old and my mom says I was born hungry because they began giving me supplemental feedings in the hospital nursery.

    I did have a dramatic weight loss in the hospital — I’ve lost about 60 pounds (most fluid, of course) since the first of the year so it is difficult for them to assess my dry weight.

    The cramps, I think, are also exacerbated by my natural tendency to cramp and by restless leg syndrome. Also, by the chilly atmosphere in the treatment area. Unfortunately by the time I realize my legs are chilling, it’s almost too late so I try to ask for a sheet early on in treatment to keep my legs warm.

    Comment by iowakitkat | October 30, 2007 | Reply

  7. At both dialysis centers I have been in, they have given out blankets to all patients, not just sheets. If your center doesn’t do that, you might want to bring your own blanket from home or buy a (usually very cheap) fleece blanket/throw to put over your legs from the beginning of your treatment. The fleece blankets/throws are extremely light to carry and can be folded up and put in a small bag.

    Good luck to you.

    Comment by hymes | November 1, 2007 | Reply

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