Getting to Seattle... in 3 hours

One of the requirements for being on the transplant list at UW Medical Center is the commitment to being able to get to the hospital within 3 hours of receiving “the call.”  By checking GoogleMaps or MapQuest, our house is 3 hours, 18 minutes door to door—190 miles.  Since these calculations are based upon driving at normal speeds, it certainly is within the realm of possibility that we could get there in under 3 hours if we pressed the speed limit a little bit.

But what about running into rush hour traffic? Or the occasional closing of I-5 due to accident or flooding (as has happened twice in the last few years).  The transplant program requires a back-up plan.  Without one, they insist that those on the donor list take up temporary residency in Seattle.

We’ve reviewed a variety of options—there are certainly plenty of commercial flights between Portland and Seattle. Horizon offers flights every 30 minutes during peak hours (the times most likely to be slow on the freeway).  But adding in time to drive to the airport, get through security, boarding, the 45 minute flight, deplaning and then a quick drive from SeaTac to the hospital (18 miles through Seattle’s worst traffic congestion) doesn’t make this any faster under normal conditions.

We checked with some charter companies and air ambulances, but in addition to costing thousands of dollars, they cannot guarantee that they will have a plane and flight crew available to make this trip any faster.

We currently have two back-up plans:  a new airline, (SeaPort) flies between Flightcraft at PDX and Boeing Field.  SeaPort currently offers 9 scheduled flights per day. And since they fly out of Flightcraft, you can avoid the security/check-in process and get on a plane much faster.  Of course the flights are not quite as frequent, but there is additional savings on the other end, as Boeing Field is only half the distance from the hospital as SeaTac.

Our other option is a private pilot who operates an Air Taxi service out of Hillsboro.  Her rates are nearly as low as the commercial airlines, but of course it’s a one pilot/one plane situation, so there is no guarantee that this option will be available at the moment we need it.

So the plan basically looks like this…

1. Stay aware of major issues affecting traffic between Portland and Seattle that might close I-5 for extended periods.
2. If the call comes in the middle of the night (which is typical), make a bee-line for Seattle in the car. Drive as fast as we safely can and hope we don’t get pulled over (see below).
3. If the timing would get us into Seattle during peak traffic hours, call Rose Air and see if she is available to fly us to Boeing.
4. If Rose Air is unavailable, check flight schedules for SeaPort.
5. If all else fails, revert back to getting in the car and driving fast.

By now you are probably thinking, “why not call the highway patrol and ask for an escort?”  We talked with the folks at the transplant team and they advised that neither OSP or WSP offers such a service.  If we do get pulled over, we’re to explain the situation, give them the phone number for the transplant team, and hope that they will let us get back under way as fast as possible.

The three hour time limit is somewhat arbitrary—and depending on who you ask at the transplant  program has varying degrees of flexibility.  Bottom line, they want you there quickly.  In my next posting, I’ll discuss what’s happening behind the scenes while the recipient is barreling down I-5.

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As an update to the “Walking the Fish” post, Shirley has upped her distance and is now doing over a mile during each swim session.  This was a major goal for her and I am personally amazed at how fast she reached it.

Until next time.

Greg

Rumor control

Several people have mentioned to me that they thought Shirley is getting a Heart/Lung transplant. While this procedure is done in some circumstances, it’s when someone has a disease that has also adversely affected their heart. In Shirley’s case, this is not an issue as her heart is in great shape.
They do intend to do a double lung transplant. The way the surgeon described it, was that if they did only one lung, the remaining sick one would crowd out the new healthy organ due to inflammation.

We are just returning from Seattle where Shirley had her quarterly visit with the transplant program. Her liaison physician, Dr. Griese, says to not be surprised if the wait is about a year long because in relative terms, Shirley is very healthy. This puts her down near the bottom of the list. Of course, if there isn’t someone above her with the same blood and tissue type and body size, there could always be a call just around the corner.

We also had a chance to meet Kathy Weakly, the pre-Transplant Coordinator. Shirley has had many a conversation with her on the phone over the last eight months, so it was like meeting an old friend for the first time. We got a chance to talk with her about some of the more administrative details, like where to go once we arrive in the hospital and what to bring along.

Meanwhile, back at the Ranch, we have every intention of having the annual Christmas party (first Saturday in December) and are starting a betting pool on what date we receive the call. If you want in on the pool, let me know. We’ll publish official rules in our next posting.

The oxygen travel jinx

As I’ve mentioned previously, Shirley is now on oxygen all the time. When at home, we have two large tanks of liquid oxygen and she has a long tube that allows her to move about the house. (It also makes tracking down Shirley in our rather rambling house a pretty easy task). She also has a small, portable tank that holds about 6 hours of oxygen for trips about town.

But that leaves a gap as to how to deal with trips away from home for periods longer than 6 hours. Our medical air supplier, Lincare, provided the solution in the form of a medium sized tank (about the size of a full keg of beer). This tank holds 40 pounds of liquid oxygen that allows us to travel for up to about four days. She can either run a tube directly from the tank or use it to refill the portable tank as she does at home.

For some reason, although this tank differs only in size from the tanks at home, it has been rather temperamental on our travels. Three times this summer, we’ve had the tank accidently drain while on a trip.

The first—and most dramatic happened back in June. We were staying with Shirley’s brother and sister in law in Seattle. Pete and Carolyn had recently remodeled their home on a bluff overlooking Lake Washington. They have created a very nice guest apartment in the basement, which features a ground level entrance. We had set up camp downstairs and the oxygen tank was in our bedroom. I had just filled the small tank and as I pulled it away from the transfer valve, instead of closing back up, it stayed open and started shooting pressurized liquid oxygen into the air. Immediately above the tank was a smoke detector—which couldn’t tell the difference between smoke and a dense cloud of vaporized oxygen. Not only did it immediately set off the alarm (which was of course was hardwired to an alarm company), but it froze the sensor.

As Carolyn madly attempted to shut off the sirens by punching in the alarm code, I tried to figure out how to stop the jet of oxygen. Note to self: holding a small washcloth over a jet of -193⁰C oxygen only serves to freeze-burn fingers. Moving on to Plan B, perhaps throwing water on the vent would freeze it shut…so I grabbed a handle and drug the tank into the bathroom. I then quickly filled up a small container of water and turned back around—but the tank was completely hidden in the fog of oxygen vapor. A few feeble tosses of water did nothing.

On to Plan C. At this point, we were less concerned about preserving the remaining air in the tank and more interested in just stopping the noise. So outside we went, where the tank continued to hiss and spew for another five minutes.

Fortunately, we had just filled the little tank. And Lincare is a national company with 24-hour-a-day on-call response. Within a few hours, a guy was there who refilled the tank—which slowly leaked away the next day. Lincare then delivered a loaner tank, which then spent the rest of the summer beside Pete and Carolyn’s house waiting to be reclaimed by the oxygen company.
Having learned our lessons from the first experience, when the vent got stuck open on our next trip (to visit Shirley’s cousins in Coeur d’ Alene), we just took the tank outside and found the local Lincare dealer who came by and provided us loaner equipment for the rest of our weekend.

Our last trip of the summer was for my family’s annual reunion. On our way to Fort Warden on the Olympic Peninsula, it was almost serendipitous that we spotted the Lincare dealer on our way through Port Townsend. The next day, sure enough, the valve got stuck again and caused us to need to call the Lincare folks once again. Prior to providing another loaner, the technician tried to fill our tank for us. My dad captured the rather dramatic shot shown at the top of this entry.

As a side note, Lincare is now phasing out their “high pressure” tanks and replacing them with low pressure tanks. We’ve been assured that this should prevent this type of situation from happening in the future. And we really appreciate the help from all the nice folks at Lincare in Seattle, Coeur d’ Alene, Port Townsend, and of course Portland.

Saying goodbye

Early this morning, Jessie and her boyfriend, Donovan left for eleven months of foreign exchange in Tübingen, Germany. Under any circumstance, this is a tough time for a mom. For Shirley, added to the difficulty is that Jess is her only borne child (although she loves Chloe and Souang as her own), and the fact that we can’t leave the Northwest to go and visit because of her need to stay in close proximity to the hospital.

This will be a great experience for Jess. And I am grateful of the technology available to help keep her close. We’ve set up a web camera and created a Skype account so that we can have video calls over the internet. Thankfully, with the aid of the internet, it’s as easy to keep in touch with someone in Germany as it is when they are away at Western Oregon University—you just don’t get to come home for the weekends.

I know the next few weeks are going to be particularly tough. Once regular communications are established and Jess and Donovan settle into their routine, I suspect that the excitement for the kids and their overseas experience will help overcome the sadness. But for now, as they wing their way across the Atlantic, there is just sadness.

Walking the fish

While waiting for the transplant call to come, one of Shirley’s objectives is to build up as much muscle mass as possible. This is to help counteract a side effect of prednisone (an anti-rejection steroid) which eats away at muscle.

To help accomplish this, we’ve joined a 24 Hour Fitness center and Shirley is working with a personal trainer in the weight room. She is also swimming at their pool three to five times a week. Given that Shirley is currently on oxygen, this presents an interesting challenge: how does one swim laps while carting around a small portable oxygen tank? The answer is to bring along an assistant to walk beside the pool, or what our kids affectionately refer to as “walking the fish.”

While Michael Phelps and his Olympic colleagues have nothing to fear in terms of pure speed, Shirley has endurance. She needs to pause at the end of each lap to catch her breath, but she’s up to 800 yards (over half a mile) while one of the family members walks beside the pool to keep the oxygen tank close enough to reach her.

I want to throw out a big thank you to Jess, Chloe and Souang, who have all taken turns walking the fish.

The waiting ends. The waiting begins.

Today, Shirley FINALLY got the call we’ve been waiting for. The transplant review committee met today and formally approved her placement on the lung transplant list at UW Medical Center. The only remaining steps are a double-check with her insurance carrier, and a tissue type cross match test. We’ll head up to Seattle next Tuesday to take care of the cross match.

Now the type of waiting changes, for the next call may well be a life-changing event. According to the transplant team, the average wait is about 144 days. BUT, every year since they started the lung transplant program at UWMC, they have had one patient who received “the call” on the first day they were made eligible. So it could come any day.

So we will keep the posts coming as we prepare and wait. I tried to figure out some way that allows you to “subscribe” to the blog so that you are automatically notified of new entries, but if that feature exists, I can’t figure it out. [Help me out any experienced blog readers if you know how to do this.] As an alternative, I’m going to create a couple of e-mail distribution lists. One will be for those that want to be notified of each new entry, the other for those that just want to hear once Shirley actually has her surgery. Please let me know if you wish to be part of either of these lists by sending me an e-mail (gdharris77@gmail.com).

Until next time…

Greg (& Shirley)

News!

After months of waiting, the journey to get ON the transplant list appears to be nearing an end. Shirley received a call earlier today that the cardiologist has reviewed her case and had signed off. They have decided that a final, formal review by the Review Committee meeting should be done on Wednesday, but this appears to be a formality. They have asked her to come to Seattle for Type and Cross-match testing. This is definitely a good sign.

We’ll post more after we hear back from the committee.

Greg

Frustrations mount…

The days continue to tick away, yet we have no news from the transplant administrator’s about Shirley officially being listed. Based upon the last few conversations Shirley has had with the transplant coordinator, she is no longer waiting for a full committee review. Instead, it’s only the cardiologist’ review of the follow-up stress test results that needs to be signed off.

The follow-up test that was ordered was completed in early July. But as has become the theme of this saga, the CD with the test results was not sent to the Medical School by the staff of the Oregon Clinic. Two weeks after the testing, Shirley learned that the results hadn’t been forwarded to Seattle. She then went down and picked up the disk and shipped it herself via next day air.

And one might assume that next day shipment would put something in the hands of the recipient the next day—but this isn’t the case when shipping to a big university. It made it to the campus mail room, but took another couple of days to reach the transplant program office.

From there, the disk was delivered to the cardiologist’s office. But when the cardiologist went looking for it, no one could find it. Apparently a temp took possession of the disk when it was transferred, and no one has seen it since. Now Shirley is trying to find out if another disk needs to be sent up or if the missing disk has been found. It’s vacation season and we’re having troubles getting people to return calls.

This was not the first time test results didn’t make it to Seattle in a timely fashion. Previously, a whole battery of tests results were never shipped up (after over two months) and Shirley had to scramble and run over and pick up copies to hand-deliver when we went up to Seattle in June.

Who knew there would be so much waiting just to get ON the waiting list.

Until next time,
Greg

Waiting and waiting and waiting…

We knew that once on the transplant list, we’d have to be patient and wait for a suitable donor to come along. What we weren’t prepared for was the wait just to get on the list. It’s now early August and Shirley still isn’t officially on the list.

We made our first trip to Seattle to be introduced to the transplant program in February. While there, they did a variety of tests and took 17 vials of blood for a battery of tests. They also gave Shirley a full page list of additional tests to be done back in Portland. The last of these were completed in April. But due to some mix-ups, some of the test results were not forwarded to the transplant program for a couple of months.

Finally, in June, we want back up for another visit. This was our Orientation session and included meetings with all sorts of people. I’ll devote another entry to describing this visit in greater detail.

Coming out of this visit, we were given the strong indication that Shirley’s case would be reviewed in the next week or so and she’d officially “on the list”. Alas, a week later, we learned that the team’s cardiologist had a concern about a small side artery on her heart. They wanted to do another test before placing her in the program. The test was completed—and yet again, the test results had trouble making it up to Seattle. Once they finally made it up, the issue was put to rest.

Then, the next weekly review committee meeting was cancelled due to vacations, and that takes us to the present. Each Wednesday (committee review day) brings the anxiety of wondering whether her case will be heard. Every piece of evidence suggests this step is just a formality—the head of the transplant program called Shirley’s pulmonologist and said she was an excellent candidate. We just can’t seem to get over this last hurdle.

Two more days until the next Wednesday. Maybe this is the week.

Introduction

Greetings friends and family—

Since so many of you have heard and asked about Shirley’s impending lung transplant, we decided to create this blog as a means of keeping everyone informed. This is our first attempt at writing a blog, so this is a bit of an experiment.

As you know, an organ transplant is not something that is scheduled. At some point, we’ll just receive a call—in the middle of the night, out shopping, during a dinner party, while playing bunko, wherever/whenever (like at 6 am, much to Shirley's chagrin). And when it comes, we make a mad dash to Seattle. But we have no idea when that call will come. It could happen next week, or not for a couple of years.

Once the surgery does take place, this forum will be my means of keeping everyone updated on Shirley’s progress and rehabilitation. The blog will be updated daily with news of her progress. In the mean time, we’ll use it to provide some background information. We’ll post regular news as we receive it, but will also provide some detail on her disease, the transplant program, preparing Shirley's body for transplant, organ donation and whatever topics come to mind.

We hope that this becomes an interactive medium. Please share your comments and questions.

I am writing this with Shirley’s full approval. She is more than willing to share her story and answer questions. Shirley will contribute her own postings from time to time as well. While initially created to update our family and friends, if you feel the information provided would be useful to others you know, please feel free to pass along word of this blog. If the information we share can help encourage people to become organ donors or provide support to others awaiting transplants, then we feel blessed to be able to share.

That’s all for now.
Greg (& Shirley)