Seattle to Washington DC/Baltimore

Discussions for Patients, Family, and Friends HD For Patients
1

I’m in DC right now with a busy three days planned. After a hour waiting in the plane at the gate we finally left getting in about an hour and half late because of uncooperative winds. The baggage claim area at Regan was awash in unclaimed luggage - hundreds and hundreds of bags sat forlornly among the conveyor belts. Knowing that each bag represented an owner whose trip was going worse than mine made me feel lucky to be only late. Lucky that is if all my checked baggage made it with me to DC.

I had checked six items. The check in process had been chaotic. My ride had shown up 45 minutes late; I arrived at the airport about 7:15 for my 8:40 flight and was surprised by how long the lines were. It looked like the weekend before Christmas. I loaded up a cart with the hundred pound cycler in its metal travel case, three boxes: the heater, the bracket and some saline, a tube with the IV pole and my garment bag, plus each box had an assortment of all the other stuff e.g. needles, scale, 4x4s. By the time I got up to the counter it was 8:00, the person taking baggage was running around covering four check-in kiosks, and she did not want to hear about medical assistive devices. She wanted $50 for each piece above the two maximum per passenger.

I knew there would be a line for security, the clock was ticking and I could feel the stares of the people in line behind me who were no doubt sensing - what with my cart piled high - that I was not a routine check-in. On my previous trip with the System One I had patiently worked my way up the chain of command - through four levels of supervision to get the airline to take my stuff at no charge. On that trip I had Dori’s article Leaving on a Jet Plane about traveling with Medical Assistive devices which is very helpful to have, this time I had the actual legislation http://airconsumer.ost.dot.gov/rules/382SHORT.htm provided by NxStage but that is much less helpful than Dori’s article. I paid.

$225 later I was standing in the security line, which while long did move along getting me to the gate just as they had started boarding the main cabin.

I watched as luggage emerged first one box and then another. I was standing by the oversized baggage area expecting the System One to come out there instead the silver travel case came out snaking its way along the conveyor. So far so good but when all the bags had been retrieved and the conveyor stopped I was still waiting for the IV pole. Another line, another forty-five minutes and I found out the IV pole missed my flight - the claim number brought up a notation from the ground crew in Seattle - “Oops”. Enough said, at least someone was admitting their error. It was due to come in at 9 and would be delivered to my hotel.

At my hotel I was told that they had 16 boxes for me (15 boxes of dialysate, 1 box of cartridges. Which truth be told, was at least three boxes more than I would need but better to much than too little). No charge at the Carlyle Suites for having freight delivered but I tipped the porter generously for bringing everything up to my room.

I’m here for three different meetings, plus Congressional visits. Tuesday I am due to meet with staffers in three Washington State Representatives - Larson, Dicks and Jay Inslee (who was on my flight) - in the morning and then in the afternoon I’m going to a Kidney Care Coallition meeting. That evening I am invited to the Capitol for an event where they announce the new Bill that is along the same lines as last Congress’s HR 1298/S 635. Wednesday there is a McDermott fundraiser first thing and then meetings with staff in Hastings and Smith’s office and with McDermott (my Congressman) after that followed by an afternoon meeting of the Kidney Care Partners. Then on Thursday I am going to Baltimore for Kidney Community Emergency Response (KCER) Coalition 2007 Summit. I Friday I fly back to Seattle.

I wanted to dialyze tonight and then take tomorrow off - I’ve dialyzed the last 6 days in a row. I got up to my room, ordered room service and started setting up for tonight’s treatment. When I plugged in the cycler … nothing. Sigh. I called NxStage and they’re sending out a replacement but I’ll need to be here when they come tomorrow in the morning. This will mean missing a couple appointments but what can I do? I’ll also need to dialyze into the night tomorrow.

I’ll still be able to go to the meetings and the Bill event. I’ll write about the new “1298” and about the Kidney Community Emergency Response (KCER) Coalition 2007 Summit. KCER is billed as:

Emergencies can happen with little or no notice, and each partner from the kidney community plays a critical role in the event of a disaster. FMQAI: The Florida ESRD Network (Network 7) has assumed administrative support lead for coordination of the Kidney Community Emergency Response (KCER) Coalition. The 2007 Summit will focus on testing and refining the national response strategy; raising public awareness of the critical needs of individuals with CKD; promoting and disseminating tools and resources; and planning for a possible flu pandemic. Please register now for the 2007 KCER Summit as we continue the important collaborative work of preparedness and response in the renal community.

Now I should go to bed so I can get as much sleep as possible tonight so that I may function on minimal sleep later in the week. I still need to figure out how to get to Baltimore - I assume there is a train - and there is that whole dialysis thing.

2

Hi Bill,

I guess that goes to show you how important it is to leave enough time at the airport. Do you think you might be able to get a refund for the $225?

There is a train between DC & Baltimore, and it’s only about $7 if you hit the non-express. But I can’t imagine how you’d negotiate that with all your boxes. If I were you, I’d take a taxi. It’s probably about $65 + tip–or so says the BWI airport site: http://www.bwiairport.com/ground_transportation/taxi_and_private_car/.

3

Wow Bill, what a trip. You obviously have a high “patience threshold”! Hope it all works out well for you and you get some sleep.
Cheers

4

I’m between meetings but I wanted to post the new Bill numbers. On the Senate side it’s S 691 and on the House side HR 1193.

5

Right on Bill!! you are showing the world the benifits of good hd. Even if you had some problems its not like the 60s , sorry to here about the aksys machines they were so bulky how was your transision. HOpe Linda Franklin was a help I miss her. We are here in Florida we being my fiance she is on NHD we origanally started home hemo there at Haviland I might of Dialized you while you were in center. I mostly worked in S.C.U but I worked other shifts as well. I love reading your stories your a true pioneer and were else better to do it North West Kidney.

s419jason@hotmail.com Take Care

P>S tell Linda hi for me

6

The Kidney Care Quality and Education Act: S 691 & HR 1193

The actual Bills are not yet posted on the official government web site Thomas.loc.gov but here is a summary from the Kidney Care Partners the industry association who was the driving force behind this legislation for the last three congressional sessions.

                  [B][B]IMPROVING  QUALITY THROUGH PATIENT EDUCATION, ACCESS, AND SAFETY INITIATIVES[/B][/B]

                   Provides $2 million to fund a 5-year demonstration project in at least 3 States to increase public awareness of how to prevent and treat chronic kidney disease and to assess its prevalence and incidence.  Provides $2 million to fund a 5-year demonstration project in at least 3 States to help individuals with kidney disease develop self-management skills.

                    Amends § 1861(s)(2) of the Act to provide coverage for kidney disease education services furnished upon a managing physician’s referral to Medicare beneficiaries with chronic kidney disease who will require dialysis or a kidney transplant.  Limits the services to six educational sessions per individual.

                   Provides $1 million for a 5-year demonstration project evaluating how blood flow monitoring affects the quality and cost of care for Medicare beneficiaries with ESRD.

                   Provides for an Institute of Medicine study to evaluate and report on any barriers to increasing the number of individuals with ESRD who receive home dialysis services or other treatment modalities under Medicare.

                   Amends § 1881 of the Act to require that, beginning Jan. 1, 2008, patient care dialysis technicians receive training and certification and are competent to provide dialysis-related services.   These technicians must repeat training or become re-certified if 24 consecutive months pass during which they have not performed dialysis-related services.  Service providers and renal dialysis facilities will provide performance reviews and in-service education to assure competency.

                   [B]ASSURING QUALITY OF CARE FOR PROVIDERS, FACILITIES, AND PHYSICIANS THAT PROVIDE SERVICES FOR INDIVIDUALS WITH END-STAGE RENAL DISEASE WHO ARE ENROLLED IN PART B[/B]

                   Establishes an ESRD advisory committee to provide a forum for expert discussion and provide annual recommendations about selecting and updating clinical and quality of life measures, modifying the payment structure, determining hardship criteria to exempt certain facilities and providers from the program, and other issues related to implementation of a quality initiative to the Secretary of the Department of Health and Human Services (HHS). The committee will also provide periodic reports to the Secretary about other issues related to the Medicare ESRD program.

Establishes an annual increase in the composite rate for dialysis facilities for 2008, 2009, and 2010 equal to the CMS-developed ESRD market-basket amount for those years.

                   Establishes a 3-year Continuous Quality Improvement Initiative that provides payments for meeting quality benchmarks and demonstrating quality improvements to independent dialysis facilities, hospital-based providers, and physicians who provide services to Medicare ESRD beneficiaries.  Pediatric providers receive a full market basket update for the first three years of reporting data for pediatric-specific measures.

Quality bonus payments are funded by providing an update to the composite rate for dialysis facilities and by including physicians in the demonstration project only if there is a fix to the physician conversion factor. From one-quarter up to one-half of the annual update for these facilities, providers, and physicians would be set aside to fund the quality bonus pool. The payments would be awarded during the first year for reporting and tied to a composite quality score in years two and three. The Centers for Medicare and Medicaid Services, the Institute of Medicine, and the Medicare Payment Advisory Commission will evaluate the program and report to Congress about its effectiveness. Low-performing facilities and providers will receive technical assistance to help them improve their performance. CMS will consolidate all current data reporting systems and develop a web-based system. There would be public reporting of the composite scores.

                   Amends § 1862(b)(1)(C) of the Act by extending the Medicare Secondary Payer requirement by an additional three months; requires the OIG to report to Congress on the enforcement of the existing anti-discrimination provision protecting patients with kidney failure.
7

Traveling with the NxStage IV pole is awkward. We designed a pole that can be separated into two pieces that will fit into your carry-on luggage. It makes for one less thing to check or keep track of.

8

If this is a product you sell, unregistered, please consider listing it in our “Helpful Products Catalog” (http://www.homedialysis.org/learn/catalog.php) It’s free. The whole purpose of the catalog is to help folks to find home dialysis-related products that will make their lives easier.

9

“So Bill, how’d that trip end up?”

Well remember my first post ended Monday night when I opened up what the airline managed to transport, plugged in the System One … and nothing. I called NxStage and was told I’d have a machine the next day. Well, I did not mind just getting to bed but it’d mean missing some meetings to meet the delivery first thing.

In the morning the drama was provided by fog, the swap machine was diverted to Baltimore and my own forgetfulness, I forgot to pack heparin. Arrrgh.

On the Heparin front it’s lucky for me that I knew some people who knew some people and there was a vial of heparin waiting for me after an evening event at the Capitol where they announced the Bill (I got my picture with Alonzo Mourning). It is also good that I realized I forgot the heparin earlier this afternoon because it took about three hours to ‘score’. I realized I didn’t have heparin when my swap machine showed up at about 4:30 PM.

Fog blocked the morning delivery of the machine but that was good because then it was rescheduled for after the meetings. The new machine worked but I had left the bolts to the heater bracket with the machine. The bolts stay with the bracket.

Not that it really mattered because I still didn’t have the IV pole. That night I dialyzed into the wee hours by putting the machine on the upside down base of the aluminum travel case and then I stacked the bags of dialysate on the nightstand which is sub-optimal. The bags drained unevenly and for the lsat hour - hour and half I had to clamp five lines on the spider and hold one bag up while it drained - about 5 to 16 minutes - when it got down I’d open another line and hold it aloft.

Wednesday the IV pole showed up without explanation. I had been calling the lost baggage number about hourly leaving the same emotionless drone of a message. My goal by the end was to speak in as flat a monotone as possible. I mean leave a message? it seemed hopeless. I just assumed that the sheer exactness of my repetition would get a call back but no, it just showed up. I ran 20 liters that night, and was still up late due to a late start - cartridge issue - which required multiple primes. I only had cartridges from one lot so I was lucky that the third time was a charm and it fixed itself.

Thursday was the KERC summit which I left early because my day job was barking and I couldn’t get internet access in Baltimore -Vista incompatibility with the Ballroom’s wireless - that night I ran 30L packed up went to the airport at noon on Friday for my 5:30 flight with Dori’s article in hand … no charge. I arrived home 15 minutes early due to favorable winds. My IV pole came in Sunday.

10

I don’t know how you do it. Just reading of your events and my anxiety levels goes sky high.

Marty

11

Today I called the customer service number of the airline and they are refunding the $225 charge I paid to get the supplies to DC.

So I think that is the right move if you have room on your credit card - pay, travel and then sort it out after the fact.

12

A collapsible pole sounds like a help but I have seen people carry on card board tubes the size of the System One’s IV pole tube so I think I’ll just carry on the pole from now on.