Happy Birthday to me

by Bill Peckham

I turned forty five today - specifically at 11:35AM CST. Family legend has it that my Mom and oldest brother had a bet as to when I would be born, with Mom taking the before noon position. I imagine she willed labor to win the bet. These last three weeks she's been in the very hospital where I was born. This was just the fifth time being in there (or any hospital, 'cept one) - the births of myself and my two brothers, a stay after the 2005 Mexico trip (the location of the other hospital stay), and now, what I hope is, the stroke. That's not a bad run. However, she does have one to go, she has to have heart valve replacement surgery.

Before the stroke she was scheduled to have the heart surgery next Tuesday. Now it has been put off but is still very necessary. We'll have a better idea next week about when she'll have it - about the end of September if I had to guess.

The End of the Beginning

Mom is home today - which is a great birthday present (Mom always gets me the perfect present). Mom reports to be feeling great. She says she feels strong; is pleased to be walking unencumbered around her condo. That's what nine hours of uninterrupted sleep will do for you - she was so happy to be back in her own very comfortable bed (last night was her first night home) with Scully her faithful black lab, sleeping on his dog throne bed, right along side.

Back on Saturday the 9th when I got the first, in the moment, report of the stroke from my brother I thought of that scene in Forest Gump - I just wanted to jump off the boat and start swimming. But I couldn't catch the next flight. I had to organize my dialysis. I ran through all my options (just go; wait 'til Monday for a NxStage travel case and fly; and some less obvious options) and decided that my best option was loading up a month's worth of ancillary dialysis supplies (four cases of saline, boxes of syringes, a case of heparin, etc), the System One cycler, the dog and driving the twenty one hundred miles. I'd walk away from my job and all other responsibilities, they'd have to sort themselves out.

The Drive

It was great to have options. I needed to dialyze Saturday night and figured if I could dialyze once on the road I could get to Chicago by Tuesday evening.  After loading up the Forester (and a newly purchased roof carrier) I managed to leave the front seat open and enough room in the back seat for the dog and the cycler. This allowed a friend, Debbie, to join me on her first drive straight through, no stop, cross country road trip.

Debbie is a gamer. She's the Northwest Kidney Centers Southwest Regional Council Chair and she and her husband Mark normally take care of my dog when I am out of town. I return the favor by watching their dog Kiska; our dogs are best friends. We got on the road about 11AM on Sunday; I started out driving. When we stopped for gas outside Spokane Debbie took over getting us into Montana and into the night while I slept. We switched back at some point and I pressed on, going through one tank of gas and then another - Montana is a large state particularly side to side.

There is a lot to think about in this situation. Thunder and lightning crackled around the car but not much rain. We stopped for gas and to accommodate Debbie and the dog's functioning kidneys but not much else, we had food from our morning shopping in Seattle.

I watched the odometer click along but only marked progress by the hundreds of miles. 700. 800. 900. I just kept driving. I had it in mind that it was 2,100 miles to the town I was born, by the lake shore; so it was that I began to focus on the half way mark, 1,050 miles. We hit the mark at about 2:30 in the morning, outside Gillette Wyoming, I believe. As soon as I reached that halfway milestone I hit a wall, feeling my head snap back up and myself drifting off.

I pulled off at the next rest area, getting there about 3. Debbie asked if it was her turn to drive - I said no we should both sleep 'til daylight. It's hard driving in the middle of the night, in the middle of Wyoming range country and dawn wasn't far off. When light came Debbie pushed on. We stopped for breakfast, actually sitting down.

Debbie picked a roadside diner. She ordered the Belly Buster breakfast, which it turns out, was aptly named. All part of the road trip experience I said. Then we pressed on, switching more frequently as we crossed South Dakota, another wide western state in heavy rain. I can't say I remember much of Minnesota other than having to stop for a long 30 minutes due to the road being closed by a roll over accident. Night came again as we entered Wisconsin in the last light of day. I kept driving but really it felt like Chicago was getting no closer. But we finally made it, arriving at my Mom's condo at 3:30AM Tuesday morning, 38.5 hours after leaving (there is the two hour time change).

Arrived

I put Debbie in a taxi to the airport 12 hours later, we had gotten up at about 11 and visited my Mom in the ICU. When she visits me in Seattle Mom stays at Mark and Debbie's house in their spare room. I very much appreciated having her with me, it made a hard situation much easier.

Tuesday night I set up my dialysis, getting on after setting up a Caringbridge.org site. Sleep and dialysis never felt better. So it was that I woke up Wednesday rested and dialyzed, knowing that NxStage was sending enough supplies which when combined with what I berought would keep me in place and dialyzed for a month.

Lessons Learned Reinforced

Stockpiling supplies is helpful not just in natural disasters. I have a supply stockpile as part of my emergency preparation. I see it as a routine adult responsibility to be prepared but there are practical benefits outside of widespread disasters. As I've written when the news of tainted heparin broke I realized that if I was relying a recalled product there is a good chance that the problem batch would be in inventory rather in use, and if the problem resulted in a shortage of heparin having a personal stockpile would work out well. And now I see the benefit of having a personal stockpile was that I had the supplies on hand that I needed.

I had seven plus cases of saline to draw from. I could grab one of my two flats of reserve heparin. Syringes, needles, gauze, tape. It was all right there, ready to be loaded. And I still have plenty on hand, ready for my eventual return.

Self dialysis at home is the most flexible dialysis modality. At some point I would have been able to fly in after setting up incenter dialysis but this is so much better in so many ways. I feel better because I am able to continue my preferred modality - extended overnight hemodialysis on the NxStage System One cycler. And logistically, hands down, it is the most convenient hemodialysis option.

Of course there are a lot of supplies required to run the System One for a month but in this case I've been able to use an empty, unfinished condo across the hall for storage and there is additional storage (for an ongoing supply cache) downstairs in a underground storage area. NxStage has made dialysis as small a burden as it can be at a time when life is tough enough with out the additional burdens that come with conventional hemodialysis.

Dogs are great, friends are better but family is what really matters. My dog is with me all the time for the most part - when he's not he is either with Debbie and Kiska, or at my work, putting in hours even when I'm not. And day to day friends are busy with other things. I'm not one to plan things (I atribute this to my preference to live in the moment) and really if you don't plan things with friends they just don't happen. Spontaneously meeting at a bar or for dinner isn't going to happen in a time of tight schedules and over commitment. But when you need them, they are right there. They'll jump in a car and drive like they've never driven before (even when semis and highway traffic generally give them the willies). They'll keep your blog going and help you however they can, by phone and email and by supporting your mom with prayers, well wishes and flowers.

But family, family can press buttons no one else can touch. Family have a connection that can lie dormant but with a phone call can ignite, firing drives and emotions raw and basic. I normally have that great expanse of country between myself and my family. Coming back here, really being here, being a part of their everyday lives, is dizzying. The summer sounds of the cicadas in the thick humid air it is so familiar. Having older brothers again (and now a sister - my brother's wife) feels new, we've had to define relationships that have been dormant since I left for college in 1981. The past hasn't been much of a guide.

As dizzying as it all has been I know this is where I had to be, everything has to sort out around this and somehow it will. I've always felt family first, it's just they've rarely require me to show it but it is true.

Hello 45. Now what?

The Chinese attribute bad luck to the number 4 so ones forty forth year is regarded as particularly fraught with danger. It had its moments and certainly the last few weeks have been filled with worry but already last year is mostly fading into fuzzy memories.

This blog is a bit over eight months old and it has already become a central thread in my personal tapestry. While I haven't been posting much this month, I have certainly been reading each post and feel filled with anger at the people that have abandoned Anna. I'm appalled at this latest example of a failed system of care that puts the payer at the center and I lay the blame at the feet of the Centers for Medicare and Medicaid Services (CMS).

The CMS unitary ESRD program's construct is neutral with regard to optimal dialysis. CMS pays what they pay; they require what they require, but after all the fine words dialyzors must rely on the benevolence of their local dialysis provider to receive renal replacement that will allow them to thrive, to live the life they were meant to live but for CKD5. The dialysis providers are free to run their operations guided by medical ethics or by business ethics. They can put their patients and attending physicians at the center of the care they provide. Or they can put their organization's business goals and the ethics of business to the front.

Family will require my time and attention for a few more weeks but the provision of dialysis in the US needs to be reimagined. The provision of dialysis industry has a number of fundamental changes to digest - the implementation of the new CMS Conditions for Coverage, the new expanded bundle method of payment - changes that can have negative (and positive) impacts on the provision of dialysis. There will be plenty to blog about and who knows whenever I return to Seattle I might even have a job.

Comments

[Peter Laird]

Happy birthday Bill, great post. May you enjoy many more happy birthdays as well as that for your mother.

Very Best Birthday Wishes
Also, thank you for DFTSEOTN
I've learned so much from you
(my s/o is a dialyzor)

[Rich Berkowitz]

Bill. a very happy birthday to you. I'm so glad that Sue is back home. Let's have breakfast or lunch when you get a respite from caring for her. Even though I got sick the last time we ate at Sarki's I would be game again, or we can stop by Walker Bros. for thos scrumptious pancakes.

Also, if you're running out of supplies, I'll see what I can do for you with my Wellbound clinic.

[Roberta Mikles, Patient Advocate]

Bill, First, I am so glad that your mom is back home and doing well. Your are so right about family. It sounds like an emotional whirlwind, that which you experienced in your trip, but also sounds like you had much support. I wish your mother continued well-being. And 45 is not as bad as the big '50'...(smiling)

As you, and everyone else, are aware, I believe there are wonderful, good dialysis facilities (offering incenter and home) that live up to all patient expectations of quality safe care. However, I also believe that many facilities do not! Many patients have seen a failed system, either incenter or home dialysis. What are the true priorities? Developing new Conditions that unless there are surveys conducted no one will know if facilities are in compliance? So, what good are new Conditions? Will there be compliance with minimal ovesight? Prior surveys have indicated, often, there are problems.Is every effort made to ensure that those patients who want home dialysis are being afforded the opportunity to do so? Our elected officials must realize that there is much that happens within the dialysis community that they might, just might be UNAWARE of. And, Anna's situation is just one, of many.
Perhaps elected officials need to read each and every survey report that was conducted in their state. This would clearly show that there is more to quality safe care than the clinical performance measures (which are needed and do show level of care). Something must be done to repair a broken system and not just a bandaid approach. We need more facilities for more patients but we must ensure that those existing facilities are in compliance. Elected officials can visit all the facilities they want, and, perhaps those facilities will be on their best behavior, so, my suggestion is that, again, they review survey findings and speak to those such as Anna, and others, who have truly experienced not what any elected official would want themself or a familiy member to experience.
It just seems that many of the problems continue and are ongoing even since Senator Grassley's involvement back in 2000.
Providers can improve care and provide care that is quality and safe in delivery and still have a large profit base.. it can be done. The question all providers must ask is "Is this the care that I would want myself or my loved one to receive?" This must be in the back of their minds all the time with each and every situation.
All patients must be offered home dialysis as an alternative and all efforts (provider) must be made to ensure those individuals who so desire home dialysis will be able to do such. We must all work together to improve a broken system. Roberta Mikles, Director, Health Care Patient Advocates RMiklesRN@aol.com

[Kelly (aka CosmicKelly)]

Just wanted to take a minute and wish you a very Happy 45th Birthday!! Hopefully, your mom will be fully recovered and back to her young self, soon!! Thinking of you both, Kelly Harrington :)

[Melissa Darnley]

That was a very moving post Bill. You managed to evoke all the emotions of having ups and downs, birthdays, coping with crisis, joys of long haul trips and the love of friends,family and last ut not least, dogs!

So glad to hear your Mother is on the improve. Have a truly wonderful birthday.
Love Melissa

[Mystic_rebl]

Happy Birthday, fellow 45 year old! :-) And Mama Peckham, great to have you feeling better! It must be wonderful to have Bill at home.

[Gus Castaneda]

Happy happy Birthday! Keep on living!....