Friday, October 30, 2009

A patient asks, "Why should I get a fistula months before I need dialysis?"

I have a lovely 65-year-old patient with a history of diabetes and high blood pressure--the two leading causes of kidney failure. We have been following her kidney function by way of her blood tests for several years. Last summer, we could see that her "eGFR," or "estimated glomerular filtration rate" was hovering a bit above 15. A normal eGFR is well over 60.

I have been taught that most diabetic patients will need serious dialysis planning by the time their eGFRs are 15, and non-diabetics by the level of 10. (Your doctor may give you different guidelines; listen to him/her for information re: your situation!)

To begin dialysis (kidney machine) treatments, you must have "access." This means a catheter surgically placed near the belly button for Peritoneal Dialysis, or a surgically enlarged vein called a "fistula" usually in the arm. Both devices require take time to arrange, and time for the day surgery and necessary healing. And a fistula may take months to "mature" before it is ready to use!

In Steve's case, he became so sick so fast that we didn't have time for this elegant planning. As a result, he had a central line: an IV line the size of a finger placed in the internal jugular vein of his neck. While these lines are easy to use for dialysis--even Home Dialysis, they carry a serious risk of infection. These "line infections" can be life-threatening. One nephrologist told me, "It's not  a matter of if the central line becomes infected, it's a matter of when!"

So my wonderful patient now has both an Peritoneal Dialysis catheter--and a fistula--at the ready! She'll probably need dialysis soon, but when she does, nobody will be eyeing the blood vessels of her neck or upper chest!

What motivated her to get this done?

"Dr. Gromko," she said, "when you told me about Steve's IV in his neck, I knew you were serious!"

So, that's the story of "Fistula First!" If you know dialysis is on the way, prepare for it by ensuring usable dialysis access before the fact. It's a matter of living longer and living better! Linda Gromko, MD

Tuesday, October 27, 2009

"Do you have to be a doctor to do Home Dialysis?"

People have asked me if you have to be a doctor or nurse to do Home Dialysis. The answer? A resounding "NO!"

Now, I'd be lying if I said that it didn't help to be fluent in the language of medicine,or familiar with basic concepts such as sterile technique or drawing up medications: things I do on a day-to-day basis in my medical practice.

But most people who are trained in Home Dialysis are not health professionals at all, and they do just fine. The training for Home Hemodialysis takes about four to six weeks, and only about a week for Home Peritoneal Dialysis. The Home Training Nurses are extraordinary: exceptionally clear and patient.

But there are some basic requirements:
  • A team (i.e. patient and helper) that works well together - at least most of the time!
  • An ability to read and follow directions
  • Manual dexterity - or at least enough manual dexterity to allow you to connect tubing, and draw saline irrigation fluid and medications up into syringes
  • Enough physical strength to manage large IV bags (In our case, we must lift five ten-pound bags of IV fluid onto an IV pole for each treatment.)
  • The ability to do simple math
  • The ability to troubleshoot by using a manual (There are 1-800 hotline numbers associated with your dialysis center and the company that manufactures the machines, and the guidance is excellent.)
  • The ability to keep a cool head under pressure when dialysis machine alarms go off.
I have assited my husband, Steve, with Home Hemodialysis for two years. We have used both central lines (large IV portals surgically implanted in the neck or upper chest) and fistulas (surgically enlarged veins, usually in the forearm). We've run into a few snags along the way - but most of these have been related to fistula problems.

The process is time consuming, and it is labor intensive. But comparing Home Dialysis to In-Center treatment? The opportunity to do dialysis "on your own time and on your own terms?" The comfort of dialyzing in your pajamas? Home Dialysis is a no-brainer!

You may be interested in reading "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor;'" written by Interior Designer Jane McClure and me. We have a whole chapter entitled "Are You Cut Out to do Home Dialysis." (Order through http://www.lindagromkomd.com/ or http://www.arrange2live.org/.)

You might also find some entertainment value in reading about Steve's maiden voyage on Home Dialysis. It wasn't funny at the time, but we did get through it--and stayed together! (Order "Complications: A Doctor's Love Story" through http://www.lindagromkomd.com/.)

If you are considering Home Dialysis or have questions you'd like discussed, please write to me. While I cannot provide you direct medical advice, I'll happily give you the perspective of another traveler along this road. Take care. Linda Gromko, MD

Sunday, October 25, 2009

Welcome to Linda Gromko's Blog

Thank you for visiting my new blog. As a family physician, I've known about kidney disease for many years. But you never learn about something as deeply as when someone you love is immediately impacted. In my case, I took a crash course on kidney failure two years ago when my husband, Steve, tumbled headlong into acute renal failure: his creatinine blasting from an abnormally high level of four to an unbelievable ten in only two weeks! He required urgent kidney dialysis, via a central line--an IV placed in his neck. To do no treatment would result in death in one to two weeks.

Over the past two years, we've learned an unbelievable amount of information. We've also come to terms with living with this potentially terminal disease. We've learned a great deal about how kidney failure impacts a family.

Steve and I avidly embraced the elegant technology of Home Hemodialysis. In fact, we became so invested in making it better that a colleague and I wrote a book entitled "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor.'" It is our sincere hope that this guidebook will help pave the way for others who now face what we experienced only two years ago. Steve and I would have ached for such a guidebook. (Available through http://www.arrange2live.com/ or http://www.arrange2live.org/.)

I have also written a gritty, "R-rated" (R for language) memoir about our first year of Steve's kidney challenges. "Complications: A Doctor's Love Story" is now available in bookstores. The feedback has been that it is an intense, highly personal read. How I wish it were fiction! (Available through http://www.lindagromkomd.com/.)

The purpose of this blog is to explore issues related to kidney care in the home, and to support other caregivers in the process.

Thank you for visiting my blog!
Linda Gromko, MD