Why does "Arranging Your Life When Dialysis Comes Home" Matter?

Last night, Jane McClure and I presented our first Webinar through Home Dialysis Central (http://www.homedialysiscentral.org/). We were delighted at the response of folks in the group, and we will be doing another presentation on "Supporting the Caregiver and Preventing Caregiver Burnout" sometime in the future.

But it struck me that President Obama was delivering his State of the Union Address at the same time -- so he missed our Webinar(!). And, of course, it takes only a cursory glance at the news to be reminded of the devastation in Haiti to realize that our problems pale in comparison.

So why does our project, i.e. helping people design their Home Dialysis Centers for maximal function, efficiency, and comfort, even matter? It comes down to this:

We have the opportunity to take control of the things over which we have some control, to make our own little microcosm better -- to improve the quality of our lives and those of our loved ones.

Does that minimize the importance of what's happening around us, or happening more globally? Not at all.

But maximizing our own functioning helps us to be more effective in whatever we do....whether that's being a dialysis assistant, a physician, you name it.

After all, good design is not a "frill." It's based in optimizing function, minimizing stress, and living a better life. We serve best when we are grounded ourselves. "Arranging Your Life" helps us to be more grounded and therefore, we hope, more effective in our lives.

Take care. Linda Gromko, MD

Webinar Details: Sign Up for Tonight's Free Program

Jane McClure says that she and I sound a bit like "the Click and Clack of Functional Design!"

Jane is referencing NPR's Car Talk Program, of course: wisdom and experience delivered with humor. She and I have written a guide to setting up your own Home Dialysis Center -- with lots of practical tips for those who are just starting out, or those who have been dialyzing for years.

So join us this evening as Home Dialysis Central hosts us in:

"Arranging Your Life When Dialysis Comes Home."

To participate live, register at:
www.instantpresenter.com/PIID=EC50DE8487


Or view us later at http://www.homedialysiscentral.org/.

Take care. Linda Gromko, MD

Smoking Cessation: A Donor Benefit

As Steve nears the possibility of another kidney transplant, we are reminded of the requirement that living donors cannot smoke -- or at least, they have to stop smoking for a couple of months prior to the transplant.

I am biased, of course. I dearly hope that Steve will have another transplant opportunity, and I hope this transplant will be successful.

But what does the donor gain?

I expect that there is a sense of personal satisfaction in having really stepped up to meet a need. Not in a "lip service" kind of way, but in the way that helps like nothing else can.

I have been impressed that potential donors have been able to quit smoking in preparation for the transplant. No small achievement. After all, it's easier to help people withdraw from heroin than tobacco.

When I delivered babies, I was amazed at how many women stopped smoking -- for the health of their babies. Many of these women hadn't been able to stop for themselves, but they could do it for their baby. Interesting commentary!

As a Family Physician, I have come to recognize that smoking is one of the most destructive health habits we fight. (I am learning that physical inactivity, i.e. the lack of exercise, is another.)

If a kidney donor continues to abstain from smoking after the transplant is completed, this represents an enormous gift to the donor with respect to the donor's later health and longevity!

Thank you to all donors and potential donors. If you can get an additional pay-off from your extreme gift of kindness, so much the better.

Take care. Linda Gromko, MD

Jane McClure and I are presenting a Free Webinar on January 27...

Home Dialysis Central is hosting my colleague Jane McClure and me for a Webinar, to be presented Wednesday, January 27 at 6:00 p.m. Pacific Time.

Our topic: "Arranging Your Life When Dialysis Comes Home"

Jane, an Interior Designer, and I will be discussing the problem of learning the elegant technology of Home Dialysis, and then coming home to the arrival of sixty boxes of dialysate solution! How can we plan our dialysis space so that our homes don't look like an ICU? How can we keep our bedrooms feeling like places of respite and intimacy, rather than a "high tech sick room?"

Please check out our article on Home Dialysis Central: http://www.homedialysiscentral.org/.

What's a Webinar? (I asked...)

A Webinar is an on-line presentation, presented in real time with live speakers. The cool thing is that listeners can sign on, be active participants, ask questions, and make their own comments and additions to the program!.Register using the address at the bottom of this page.

We hope to bring you some interesting ideas, whether you are brand new to Home Dialysis -- or you've been doing it for years! After all, Designers just "think differently" than the rest of us.

You'll find more ideas and practical suggestions -- as well as critical information about supporting the caregiver and pre-empting caregiver burnout in our book, "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor.'"

Our book is available in paperback for $15.00 through our website, http://www.arrange2live.org/, or my website: http://www.lindagromkomd.com/.
It's also carried in paperback and on Kindle through http://www.amazon.com/.


The direct link for Wednesday's Webinar is:
www.instantpresenter.com/PIID=EC50DE8487
Register now....it's free!

Take care. Linda Gromko, MD

Caregiver Tip #8: Listen to the Music

Music is a very personal thing. It can calm our soul; it can jangle our nerves. Music brings us back to a different time or place; it makes us feel younger...again. It makes us want to dance. A specific song or CD becomes our personal soundtrack for a challenging time. Music can bring messagaes of encouragement and support.

Steve and I were given a wonderful gift last year when a friend of ours "gave" Steve a song. Bob Bost, a Seattle graphics designer and prolific songwriter, had written a song he thought might be appreciated by cancer patients. Then, after talking with us about the preparations we were making for Steve's kidney transplant, Bob realized that the song was really "intended" for Steve.

Bob's song, professionally recorded by vocalist Larry Murante with his voice reminiscent of Gordon Lightfoot, and hauntingly beautiful violin and guitar backup, was entitled "Fight the Good Fight."

The lyrics spoke of a man struggling with an illness, fighting to get out of the hospital bed and back onto his own path. The chorus:

        "I'll fight the good fight everyday,
       I'll win this battle; I'll find a way.
       And I believe, when tomorrow comes
       I'll hear my heart beating like a drum."

How do you verbally describe a song that made many of Steve's adult male friends break down in tears?

Bob's song had that quality, musically breaking through the barriers that keep us formal, that allow us to maintain "our distance.".

Bob's lyrics were more apropo than we'd dreamed; during and after his transplant, Steve had three heart attacks. So, awakening and hearing his heart "beating like a drum" was a critical theme.

During this time, I also received a CD with Cindi Lauper's beautiful work, "Time After Time." You know the lyrics:

      "If you fall, I will catch you.
        I will be waiting...
       Time after time."

While caring so acutely for Steve after his transplant, I thought I was the one doing the "catching." Now, I generalize the meaning to the universal back-up we all have...if only we recognize it.

I remember the soothing quality of music when my father was in the hospital many years ago -- on a ventilator for three months with an acute gallstone-related pancreatitis. My sister and I brought musical tapes to play in his ICU room: calming Windham Hill selections. Many of the nurses and respiratory therapists lingered in my dad's room because of the music; it set a tone of comfort -- but also a tone of respect for this man dearly loved by a family and unable to speak for himself at the time.

We must seek out music that resonates with our minds and hearts -- whether it's rock, heavy metal, folk, the blues, R &;B, gospel, rap, or country western..

As caregivers, we need all the help we can get. Surround yourself with music that resonates with your heart. Consciously find lyrics that become the mantra for your challenge.

Take care. Linda Gromko, MD

Steve and I Celebrate our Wedding Anniversary

In the midst of Home Hemodialysis, an unexpected illness of my 92-year-old Mom, my medical practice, and a host of other "stuff," Steve and I are pausing to celebrate out second wedding anniversary.

People we meet think we're an old couple. In reality, Steve and I met only five years ago, the result of my Match.com ad, "I'd like to meet a nice Democrat." That invited the rapid response, "Kerry delegate here!" We had a few nice dinners and movies out, we discovered that we had gone to the same junior high and high school (Queen Anne) with two years between us. We never knew eachother in high school, but we had many friends in common. His best friend's dad was my math teacher, and on and on.

Then, there was Brita -- Steve's full-strenth nine-year-old of whom he'd had full custody since Brita was only two! Brita wasn't ready to let anyone share her dad, least of all, some hussie from Seattle. I'll never forget the day when Brita stared me down, declaring vehemently,  "I hate every centimeter of you -- get used to it!"

And THEN, there was End Stage Renal Failure, dropping suddenly into our world with its life-altering details. During our Home Dialysis Training at the Northwest Kidney Centers, Steve and I decided to make it official. Two years ago today, we pledged to love in sickness and in health. I remember our lovely little wedding at Alderbrook Resort on Hood Canal: Steve on Home Dialysis, my grown son Tim still finding himself, and a new daughter perched on the brink of adolescense.

But we've made it through two uncertain years, tackling each problem with courage and determination. So far, we're winning.

Would I do it again? For a man who knows me better than anyone on the planet, for a man who loves me unconditionally, for a daughter who is growing into a beautiful, articulate young woman?

Unconditionally, yes.

Happy Anniversary, Stephen. I love you.

Take care. Linda Gromko, MD

Happy 92nd Birthday, Mom....in the Hospital!

We were all set to celebrate my Mom's 92nd birthday -- along with my nephew Mike's 27th birthday, his engagement, Steve and my wedding anniversary, and our friend Dick Hagen's birthday. In my family, we tend to group our celebrations together!

But this morning, my Mom phoned me, stating she was very dizzy. In fact, when she awoke four hours earlier, she was so lightheaded, she had to crawl to the bathroom. I was on the ferry when she called, on the way to Seattle for work. There were really no other symptoms. No vision disturbances, no numbness or weakness, no difficulty speaking or understanding speach, no headache, no recent illness. She was completely oriented and lucid. But she just didn't sound right to me.

When I arrived, she couldn't sit up without nearly toppling over. She begged me to just let her sleep, but we made a birthday 911 call instead. I was concerned about stroke; my dad's massive and fatal cerebellar stroke had started with the same symptoms.

In the E.R., her heart monitor showed a rapid atrial fibrillation, a heart rhythm disturbance which can be related to stroke. As far as anyone knew, she had not experienced this before. In the process of treating the rapid rate, my Mom's heart rate dropped from over 130 to the low 30's! But she continued to do reasonably well.

Her brain CT showed "nothing(!)," and her echocardiogram and her initial lab tests were normal.

Mom won an overnight admission on telemetry to monitor her heart rhythm, with my son Tim promising to break her out of the "joint" in the middle of the night.

When was my Mom last admitted to the hospital? Fifty-eight years ago, when she gave birth to me!

So, ninety-two years old with no hospital admissions other than obstetrical, and no major medical problems of any sort! She does take medication for high blood pressure and bone thinning. But that's it!

Good genes? You bet! But let's give credit where it's due. My Mom has these other positives in her corner:

• She's a non-smoker
• She drinks no alcohol
• She's thin
• She's an avid gardener
• At ninety-two, when most people are DEAD, she lives on her own, and takes care of her home!
• She eats five fruits and vegetables a day
• She gets flu shots
• She takes her regular medications
• She appreciates humor, and has enormous wit and banter
• When my Dad died many years ago, my folks had been married for fifty years!

Most importantly, Mom has a positive outlook. Even last night - before today's scare, Mom said, "I've had a great life: interesting times and good health."

So, Happy Birthday, Mom. I'm sorry we celebrated in the hospital, but how many people make it to ninety-two? What a triumph for a superb role model.

Take care. Linda Gromko, MD

Steve Graduates from Cardiac Rehab

Congratulations, Steve, on the completion of the Swedish Medical Center Cardiac Rehab Program!

Starting from a weakened baseline following a complicated kidney transplant, explantation, return to dialysis, and a protracted recovery, Steve made it through another obstacle.

In cardiac rehab, Steve did both aerobic exercise and weight training -- all while being monitored by telemetry to catch any concerning heart rhythms. He progressed from the little Barbie-pink weights up to "Big Boy" weights. This, from a man who used to leg-press six hundred pounds!

But it's a great start. Now, with the confidence to continue, Steve will work out in a gym closer to home. And hopefully, if he can continue his current path, it will enhance the chances of a positive outcome with the next transplant.

There were probably about eight other folks is Steve's rehab class. The range of abilities ran from one man who executed the arm motions with no additional weight -- all the way to  a well-muscled man who might have been fifty at best. This was a guy for whom some cardiac stent had probably come as a nuisance -- an interruption -- in an already active life.

But there was no question that everyone there had a story...lives complicated by heart disease, and lives which required reframing and regrouping after the heart disease became apparent.

People with End Stage Renal Disease have a high incidence of heart disease.

I read in the latest blog from the Renal Fellows Network that one study showed that  over 80% of diabetics with ESRD had angiographically significant coronary disease, and over 50% of the non-diabetics with ESRD had it as well.

We believe that exercise - done prudently - enhances cardiovascular health in nearly all patients. Of course there are exceptions, but the ESRD population stands to gain from the many benefits of exercise.

So, good for you, Steve. We'll see you press that six hundred pounds yet!

Take care. Linda Gromko, MD

Caregiver Tip #7: Take something back!

Steve, with End Stage Renal Failure for over two years now, has given up a lot because of his disease. The five-days-a-week Home Dialysis is a time sink. Don't get me wrong: we would make no other choice - except, of course, for a working transplant! Then, because of his February tranplant and its multiple complications, Steve hasn't been able to work. So, he's experienced a loss of income,  a loss of people contact to the degree he'd like, and a bruising of his own self-identity.

Caregivers give up a lot, too. For example:

• A loss of spontaneity in almost every aspect of your life
• Time to do other things, like spending time with friends
• Exercise that requires time away
• The ability to travel for work or pleasure, without the coordination of dialysis
• A partner who feels well enough to participate in life the way either of you would like.

One suggestion for both Caregiver and Dialysis Patient is to find something - anything - that Renal Failure has taken away--and make a valiant effort to reclaim it.

Before Steve developed ESRD, I was an avid exerciser. At my maximum, I was rowing (single shell on actual water) at least two or three times a week, spinning tthree times a week, plus a couple of sessions of "balls-to-the-wall" (sorry) strength training. And I loved it.

I didn't come by exercise natually.It was hard-won; the best outgrowth of a weight reduction program I did ten years ago. I discovered that the secret weapon for weight loss was strength training and aerobic exercise using big muscle groups. 

If you've never taken a spinning class, this is a fitness bargain! Spinning is a group activity, with everyone on their own stationery bike which looks and feels like a road bike. This is NOT likely to be the old exercycle in the basement. The instructor takes you through drills which simulate climbs and sprints.

Done to music (my favorite was heavy metal!) you get lost in the rhythm and almost forget how hard you are working. When I started spinning, I was in the midst of a business lawsuit. Spinning allowed me to process the stress more effectively.

I used to joke, "Spinning converts homicidal energy into kinetic energy!"

Sadly, though, as Steve has required Home Dialysis -- and I've had to commute from Bainbridge Island to Seattle by ferry every workday -- much of my exercise bit the dust. Spinning and rowing went, because of logistics. I have rigidly maintained a twice-a-week strength training commitment..

But last Sunday - and today, I did a 90-minute 7 a.m.spinning class at the Bainbridge Athletic Club. Kevin, the no-nonsense instructor, set the initial cadence at 120 rpm, and we were off and moving for an hour-and-a half.

Muscle memory kicked in, and -- pardon the cliche, but it was "like riding a bike!"

For me, though, it represented much more. Again, I felt the "moral superiority" of just having done it(!). I felt my stresses dissipate. I felt more like myself.

Spinning gives me a glimpse of an earlier life - a life I liked better! But it reminds me that I haven't lost myself entirely.

So, Caregivers, here's our challenge. Find something you've given up on account of your partner's kidney failure and the increased demands that places on you. Find a way to take it back. You'll confirm that you're still yourself -- just more seasoned.

Take care. Linda Gromko, MD

PS - Here's the obligatory qualifier: it's always best to see your Health Care Provider before embarking on any exercise program. Start slowly, listen to your body. Don't exercise through warning symptoms like chest pain or tightness! Good trainers and instructors will help keep you safe, but only if you use your own good sense.

Preparing for the Next Transplant

As an update, here's where we are on the transplant track:

• Steve had a living donor transplant in 2/09, fraught with many complications and ultimately resulting in an "explantation" (removal of the transplanted kidney) at the end of March.
• His recovery was protracted; the wound was allowed to close with the help of a WoundVac--an ingenious combination of black sponge, a sealed surface, and a suction machine all tucked into a wearable "man purse." The wound was vacuous; you could have hid a small housecat in its depth. And the healing process took months.
• Steve's heart has also been an issue: starting with a bypass nine years ago, then three heart attacks during the transplant-related hospitalization, and another small one at Thanksgiving. He's had two stents placed in Ausugst, and an angioplasty at the Thanksgiving event.
• He needs to be on blood thinners because of the stents and because of an elevated clotting factor, Factor VIII.
• He continues on Home Dialysis five days a week.
• His antibody titre is close to 100% - which will make a crossmatch challenging.

Now for the better news:

• Steve has been working hard in cardiac rehab, and has actually gained fourteen pounds of lean body mass! Plus, he has no exertional symptoms.
• His diabetes is under very tight control, with a hemoglobin AlC hovering under six since he "came to Jesus."
• Living donor candidates are contacting  the Swedish Medical Center Transplant Clinic to get tested. He needs a donor with type A or O blood: the more tested, the better.
•  If Steve passes his nuclear medicine stress test in March, he will be a candidate again.

Now, his best results will come from a living donor, because he'll have to switch blood thinners in anticipation of a surgery. But he has accrued over 400 days of waiting time "on the list."

A planned surgery, i.e. done "by the light of day" with a fresh anesthesiologist and transplant surgeon will give Steve the best odds of success. The control of all "controllable factors" is critical.

Will we get there? I'm guessing we will. Steve keeps making milestones, bit by bit.

Plus, I've never seen anyone with the ability to land on his feet -- peripheral neuropathy and all -- like Steve Williams. Resilience, while unmeasurable by clinical standards, is one of the most potent weapons any patient has for survival.

Take care. Linda Gromko, MD

Do others unintentionally trivialize dialysis?

Since Steve was diagnosed with End Stage Renal Disease and started on dialysis over two years ago, we've made some interesting observations.

We've found that many people believe that dialysis simply "takes care of" the problem of ESRD -- as though dialysis just "made kidney failure go away." In fact, one of the medical terms used is "Renal Replacement Therapy," and the term refers to either dialysis or kidney transplant.

Dialysis does not replace kidney function! It's a stop-gap measure, replacing perhaps ten percent of the filtering function of the normal kidney.

And as dialysis patients know, it doesn't do anything to replace EPO, the hormone that stimulates the bone marrow to produce red cells. That's why kidney patients use medications like Aranesp, which has replaced the earlier need for multiple blood transfusions in kidney patients. Then, we have the phospate problem. Kidney patients must use binders such as calcium carbonate (TUMS) or Renagel to get rid of phosphate which builds up to produce awful symptoms such as intractible itching, not to mention calcification within the walls of blood vessels.

Kidney transplantation is truly the best treatment for replacing kidney function. Nothing trumps a functioning kidney! But transplants are not available or suitable for many patients. (Have you ever heard, "Oh, you can just get a transplant.")

The other curious thing we've encountered is the perception that dialysis is simply a matter of "pluggging Steve into the dialysis machine." Like turning on the Crockpot! Now, admittedly, we do call Steve's dialysis "being on the hose."

A friend of mine required stem cell harvesting for a stem cell transplant to treat his lymphoma - thankfully, it was successful. But the description of the harvest procedure, which is very similar to dialysis, was like an homage to the crucifixion! (And this is a guy who isn't given to drama!)

Steve believes that if most people experienced hemodialysis even ONCE, they would talk about it forever! I am sure he's right. Some of my patients talk about mammograms and colonoscopies with an air of violation. I guess it's all relative!

In any event, we have learned that:

• Renal Replacement Therapy is sort of a misnomer when it refers to dialysis.
• Nothing replaces a kidney!
• Dialysis is not a trivial procedure; it's complicated - but manageable.

Why even discuss this? I think people trivialize many experiences. Like labor, for example. This trivialization backfires when the patient in labor suddenly realizes that there's more to it than she'd thought - or been led to believe! Then, the labor patient feels inadequate - like she can't manage and she's a failure.

There's a sense that since "everyone" has a baby, it must be easy. We all die, too, but that gets our attention!

So, I think a more helpful approach is just to see Renal Failure and Dialysis as what they are: difficult circumstances that would challenge anyone! If you find them challenging, you're right; but there is excellent assistance available.

Take care. Linda Gromko, MD

Caregiver Tip #6: Watch Inspirational Films

Good self care involves surrounding yourself with enough positive, inspirational energy to help you keep going when things get rugged -- which they can from time to time.

Films are wonderful for providing that rapid infusion of inspiration. I'm starting a "Caregivers' Movie List" -- and I'd love to find as many titles as I can. My only requirement is that they speak to qualities of perseverence, resilience, and/or redemption of some sort.

Here are a few to start with:

• The Shawshank Redemption
• Gran Torino
• Invictus
• A Few Good Men
• The Blind Side
• Cider House Rules
• Rocky
• Million Dollar Baby
• Good Will Hunting
• The Right Stuff
• Mr. Holland's Opus

You know what I mean: films that speak to our "larger" selves: films that help us realize that there are plenty of us going through struggles of all flavors. They just have to resonate, and help us come away with a greater appreciation of our own capacity to endure, to rise above our challenges..

Anyway, I'm adding to this list from time to time and would welcome ideas.
Take care. Linda Gromko, MD

Sign us up for the Next Cruise!

Steve and I just reviewed Bill Peckham's pictures from the beach at Cozumel -- part of the NxStage "Freedom Cruise" to the Caribbean. As I commented to Bill's blog, I can feel my own blood pressure ooze down ever-so-gently, perusing the sun and sand. Who would think these opportunities would be available to folks on dialysis -- and their families?

Steve and I took a trip a couple of years ago to attend a fitness conference in San Diego. It was the annual IHRSA Convention: "International Health and Raquet Sports Association;" Steve has a long background in the fitness industry. Anyway, we "had" to be there for five days, and dialyzing in a San Diego center would have meant that Steve would have missed out on a large portion of the convention. And not dialyzing was, of course, not an option.

So we borrowed the aluminum travel case for the NxStage machine from the Northwest Kidney Centers and packed up the machine. That weighed about one-hundred pounds. Then we loaded up the rest of our gear in a duffle bag -- another eighty pounds, and arranged for the dialysate bags to be sent directly to the Marriott Hotel. Not bad.

We overpacked, of course, with equipment for a couple of extra runs. The only wrinkle we ran into was that we had brought only one waste line, and it wasn't long enough to reach the bathroom (nice, big room!). So we called Housekeeping for an extra trash can, I duct-taped the waste line to it, and made a "bucket brigade" process of emptying the effluent throughout the runs.

Steve wanted to sling the waste line over the Marriott balcony, whereupon our friend Don Gronachan commented that it wouldn't have been the first time Steve Williams peed off the balcony of a Marriott Hotel. Ahh, love...

Anyway, after reading Bill's posts, we're up for an Alaska cruise. If you do one, sign us up!

Take care. Linda Gromko, MD

"What Now?" Starting Home Dialysis Reminds me of Bringing a New Baby Home!

Thirty-three years ago, I gave birth to my son, Tim. I remember holding Tim in my lap that monumental morning. He looked up at me with those enormous blue eyes, seeming to expect that I'd know what to do next. I was twenty-five, and this was before I went to medical school. But I did have a Master of Nursing degree, and I'd worked with many new mothers as an OB nurse. Plus, I'd taken all the Lamaze classes, and had read the "appropriate books." We had had a couple of baby showers, and had received every basic supply you could possibly need - plus a few cute little things that had no substantive function whatsoever.

But in taking baby Tim home, I experienced a learning curve as steep as any.I have ever tackled. Quite frankly, I was terrified! How would I tend to this baby human with infinite needs? How could those eighteen-year-old mothers look so calm?

At the time, there was a little book written for post-partum mothers that was aptly titled, "What Now?" And I still remember devouring that book, searching every page for guidance, foraging for a set of skills to conquer responsibilities I'd never imagined.

Bringing dialysis home is similar to bringing a new baby home...

When Steve and I brought our precious cargo home two years ago - in this case, the NxStage machine - we felt a bit overwhelmed, too. Certainly, we had been properly trained by a group of thorough and compassionate nurses. We had read all the materials. But it was still a lot to absorb.

Then, there were the storage issues: the sixty boxes of dialysate fluid delivered to our door would strain anyone's storage capacity. We were awkward; we lacked solutions. And we lacked confidence.

 Nobody gave us a Home Dialysis shower(!)...

Now that we are "veterans," and our NxStage machine has had its second birthday, we think it's time to offer some important observations: Just as with bringing a new baby home, beginning Home Dialysis home brings big changes. Is it manageable? Absolutely. Is it worth it? Without question.

What changes might you expect?

• You may experience a time of adjustment to the process
• You find that you can experience problems (signaled by alarms during your runs) - and that you can troubleshoot them correctly
• You may experience a shuffling of family roles, and this may re-adjust from time to time
• You may find that some friends and family are more comfortable than others with dialysis; some will be completely okay and keep you company during the runs - and others may not
• You may find that you have more demands on your time.

When Steve and I first started doing his Home Dialysis, we learned that there were few "outsiders" who even understood what dialysis is. We learned that even doctors and nurses rarely understood that hemodialysis could be done at home at all!

And, not surprisingly, we found that nobody understood the "ins and outs" of Home Dialysis more clearly than others who did Home Dialysis themselves.

So going back to the childbirth analogy, what's available to help people as they start Home Dialysis?

• Certainly, there is excellent Home Training, such as the instruction we received at the Northwest Kidney Centers.
• Designer Jane McClure and I have written a book "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor." This book helps you design and organize your Home Dialysis Space, and deals with the logistics of storage, travel, and caregiver burnout. (http://www.arrange2live.org/).
• Blogs help. Check out Bill Peckham's site, "Dialysis from the Sharp End of the Needle." You'll find all sorts of blogs listed on the DSEN Blog Report; something will probably match what you are looking for!
• Organizations and on-line support: check out Renal Support Network and Home Dialysis Central for fur further support.
• "Kidney Events," such as those sponsored by the Renal Support Network or the Northwest Kidney Centers are useful as well.

Will we ever see "Dialysis Showers" where friends and family gather to provide some of the non-medical provisions that will make the process easier? Support groups or Home Dialysis "doulas?" Time will tell.

But if you know someone who is just beginning Home Dialysis, send them an e-mail greeting or give them a call. Better yet, send them a coffee or grocery giftcard with your support - and congratulations on their new skills. Every transition is easier with support from people who care.

Take care. Linda Gromko, MD

Caregiver Tip #5: Make "Daily Packs" for Home Dialysis

When doing Home Dialysis - and my direct experience is in the area of Home Hemodialysis - organization is important, not only for smooth dialysis runs, but for your own sanity as well!

There are a number of supplies that you use and discard with every treatment. We find it very helpful to pre-assemble "Daily Packs" containing these items. I use a gallon-sized freezer bag with a zip top to hold the small supplies for a single run: 4x4s, iodine pads, alcohol pads, syringes, bandaids, mask, etc. With a list and proper instruction, other people -- theoretically, even kids -- can help assemble packs in advance. This way, I can simply grab a "Daily Pack," knowing that I have all the small supplies ready to go.

When traveling, I also assemble a "Weekly Pack:" tourniquet, Heparin, paper and plastic tapes in two sizes, and a few extra syringes.

Just like moms pack lunches ahead of time, assembling "Daily Packs" will save you steps and time. It's not rocket science, to be sure, but:

"A step saved is a step towards sanity...most importantly, your own!"

Take care. Linda Gromko, MD

Why does Common Sense seem so Uncommon in Health Care?

I was reading Dr. Peter Laird's post on Bill Peckham's blog:  Dialysis from the Sharp End of the Needle. Dr. Laird was lamenting that "evidence based medicine" may be a barrier to optimal dialysis.

"Evidence based medicine" has become one of the latest buzzwords in medicine. It refers to the research back-up for what we do in practice. Specifically, is there adequate research to justify certan screening tests or treatments? Will enough lives be saved to justify the attendant risk and expense? (Hauntingly, this all reminds me of airlines quantifying "acceptable" lives lost in improving safety standards!)

But we all learn in medical school to be critical readers of research studies. Some studies are better designed than others; we should assign more credibility to these. For example, how many people participated in the study? Was there investigator bias? Was a study funded by a source that stood to gain monetarily? Was the conclusion represented in the abstact synchronous with the study's "fine print?"

As clinicians, we live in a real world of elusive and ill-defined factors: clinical experience, that compelling "gut feeling" about a patient, and that all-too-rare common sense!

Last month, for example, we heard new recommendations for mammogram screening--to start in all women at age fifty. Of course, there was a qualifier: high risk women could start earlier. That very week in my practice, we found a forty-nine-year-old women with a multicentric infiltrating ductal carcinoma. She wasn't high-risk by typical standards, but she would have assuredly been missed had we followed this proposed guideline. In my practice, our youngest patient with breast cancer was twenty-nine. Most of my patients get mammograms throughout their forties--at least.

I'm going with my standard for breast cancer screening: you're at risk if you have breasts!

But it worries me terribly that certain "evidence based" standards may ultimately become the justification for providing less care to people who need it!

In my practice, I  use "anecdotal medicine" in addition to "evidence based " medicine. By that I mean, if I have personally seen a situation that doesn't quite follow the norm, it's logged into the data base of my brain. As an example, few people would agrue that a spiral CT is a requirement to rule out a pulmonary embolism or clot in the lungs with an oxygen saturation level of 100%. But I've seen it! So I can't ignore it when I evaluate a patient with a recent travel history, and pleuritic chest pain (pain at the apex of a deep breath).

Likewise, we trust our "gut level assessments," too. How often I've been glad I did! What is intuition, after all, if not a composite of verbal and non-verbal cues, a melange of past training and in-the-trenches experience?

Physicians struggle against many forces in trying to provide good care for our patients. Health insurance companies provide many hoops for us to jump through. We are often asked to write letter after letter to approve a drug for a patient that is not on the company's formulary.

A great example: a number of years ago, we had a patient in our practice who struggled with very brittle diabetes. She - like many diabetics - suffered with gut motility problems, and it wasn't uncommon for her diabetic gastroparesis to lead to a cycle of vomiting and dehydration that would inevitably land her in the hospital. One of these hospitalizations resulted in such a severe acid/base imbalance that she had to be in the ICU on a ventilator for days. Retrospectively, I believe we might have aborted the whole nightmare for the patient - and reduced costs for all concerned - by having a potent anti-nausea drug, ondansetron, on hand.

I thought it would be logical for the patient to have some available - to use with medical guidance - even on the way to the E.R. So, I wrote a presscription. Unfortunately, the drug was non-generic at the time. No amount of logical letter writing would nudge the insurance company to allocate the $150 medication!

The company "preferred " to foot the bill for thousands of dollars  for later hospitalizations, rather than approve a non-formulary drug!

Similar situations - though probably less dramatic - arise daily. I'll tackle insurance more on another blog day.

So, for me, it all comes down to the practice of "Golden Rule Medicine:" what kind of care would you provide if you or your loved one were the patient?  And if it's not logical, it's probably not the best medicine!

Take care. Linda Gromko, MD