The wait continues, but there is progress to report

It has been two weeks since Sandy was listed on the organ transplant list (and since the fire drill that night!). The wait continues, but there is progress to report. The escalation in her bilirubin level is remarkable. As you may have seen before, it causes discomfort, jaundice and itching all over. Her skin is yellow, and her eyes are more janudiced than ever before. They look like pee and I think she's a little embarrassed by it. Frankly, she's miserable right now...and there is nothing we can do about it. Sandy did not notice that I woke up last night to see her scratching for more than an hour straight. I am sure she continued, but I finally fell back to sleep. Every time I woke up, she was scratching...sometimes while awake, sometimes while she slept. Of course, the girls and I scratch her back every night, usually while watching something like American Idol or My Name Is Earl and The Office (both destined to be among the great comedies of all time). Last night it was while watching a Warren Miller DVD-- compliments of Warren & crew with the message of "Stay Strong Sandy!" Our scratching her back never makes the itching go away, but it does seem to comfort her a bit and allow her to relax a little more.

The blood results from yesterday confirmed what we already knew--her bilirubin level continues to escalate. I was hoping that it would fall somewhere between 8-9, which would move her up on the waiting list. To add some perspective, when Sandy was first listed her bilirubin level was 5.5 and this gave her a MELD score of 12. A jump to 8-9 would bump her up to about a 15, a much better position on the list. The blood results came back today and her bilirubin level is a staggering 17, the highest it has ever been. Seven-teeeeeeeeeen! In the infamous words of the late great Harry Carrey, Holy Cow! Her MELD score will be adjusted today, and I'll let you know where we stand.

Have a great weekend!

After the Fire Drill

Just a quick follow up to the fire drill we had last week:

Dr. Maley called Sandy on Friday and offered a few more details. The liver that was offered was deemed unacceptable because of the patient's health (yes, I see the irony and humor in this). Actually, the patient was an obese male and the liver, upon biopsy, was too fatty.

We also learned that the liver had been offered to some other recipients on the list first. Those patients also passed on the offer, and that is how it came to be offered to Sandy. This confirms that she is not first on the list, but it did show us a bit about how the queue is processed. It is also encouraging to know that they feel comfortable being particular about the liver they transplant into Sandy. We'd like it to be as healthy as possible, too!

An interesting side note is the fact that this liver was thrown away. The statistics about the shortage of organs are staggering, and 10-20 percent of the people on organ transplant lists die each year waiting for an organ. I should add some links to this blog so that you can read more, and perhaps you will consider signing the back of your drivers license.

Back to our fire drill-- Apparently, our experience is not uncommon. We can be called at any time, and Sandy may be ordered to the hospital only to be sent home without the surgery. So, the wait continues. We'll trust that this is going to happen, that she'll get a good organ, and we'll be ready to move when called.

Day One on the List

Wow—what a night! If you have not already read the entries from yesterday, you should probably read those first.

Hopkins confirmed around dinner time yesterday that Sandy had been listed with UNOS. They would contact us tomorrow (which is now today—Friday) to confirm her MELD score, where she sits on the list, and to communicate instructions. These are the type of instructions that tell you to stay close to home, what to do when they call, what to expect in the process, and so on.

A little after 11pm last night, the phone rang. It was Julie, the transplant coordinator at Hopkins saying, “Dr. Maley asked me to call you and tell you that we have a liver for Sandy.” She went on to describe what would happen over the next several hours. Dr. Maley would drive to Pennsylvania to inspect the patient and the liver and decide whether to accept it. Julie told us that she would call us back as soon as she heard back from him. That could be as early as 2am or even a few hours beyond that. “These ER situations can sometimes drag on,” she said matter-of-factly.

So there we were. Two minutes earlier we had both been nearly asleep…and now we weren’t. Who has ever heard of someone being on a waiting list for only five hours? We never considered that this could happen so quickly. You know intellectually that it can happen, but you don't let yourself think that it will happen.

We could only sit and wait for the next call. Sandy was able to use this time to pack a small bag and we both thought a bit about the other things you need to deal with. We watched Conan O'Brien for the first time in a long time. For those of you thinking, “this sounds like when you’re ready to deliver a baby,” it is exactly like that. Your mind races, you wonder about who to call in the middle of the night to stay with the kids, who will make their lunches for school, have we paid all the bills that are due in the next few weeks, and so on. Ironically, Sandy and I talked about these issues at around 8:30 last night and resolved to make a plan over the weekend to address all of these things. Funny how things work out.

Neither of us got much sleep until the phone rang again at 3:50am. It was Julie again, but this time she said that Dr. Maley had inspected and rejected the candidate liver.

Now we could go back to sleep. Fire drill over.

This exercise offered some interesting information. First, it confirmed that Sandy is the highest recipient on the list in the region with AB blood type. Next, the proffered liver was from an outside region (Pennsylvania is in a separate region), which would suggest that they have no AB recipients on their list at this time. AB is the rarest blood type and those with this type are universal recipients. That is, they can accept livers from any other blood type, making a match much more likely. That should all bode well for Sandy as new candidates come up.

Stay tuned. Same Bat-channel.

Great News!

Great news! We were able to get through some hurdles over the last week, which concluded with an appeals hearing with our insurance company late yesterday. We prevailed in the hearing, and Aetna has approved benefits that will allow her to be listed right away.

Hopkins confirmed this morning that Sandy will be listed by the end of the day today, pending results from blood that was drawn today. The results of those labs will be used to determine her MELD score, which establishes her place on the waiting list. That trip to Hopkins was only a minor inconvenience today since Sandy was able to time it well enough to meet up with Katie at Samo’s for lunch! It’s in Greektown in Baltimore-- if you haven’t had it, you’re missing something great.

The Pool: If you want in on the pool, drop $20 cash (per one hour window that you select) off at our house with a note picking the time you think Sandy will be transplanted. I am also accepting Ravens playoff tickets in lieu of cash.

For the record, I am joking about the pool...but not the playoff tickets.

Seriously though, we should get details about her MELD score and place on the list in the next day or so. We have no way of predicting how quickly this may happen...you'll know when we know. There are still a few steps to get through before the transplant can happen, but this is one more victory.

PS- don't forget, tomorrow is Purple Friday in Baltimore!

Tennis, anyone?

Last week, Sandy played tennis for the first time in a very long time! She reported that she was not as quick as she remembers being, that her shot was a bit rusty, but that her partners were very tolerant and she did pretty well, overall. I don’t think “pretty well” sums it up. The fact that she played tennis at all is incredible and we’re all very proud of her. I am sure it was Andy or Mary Beth or one of the other tennis ladies that called her that morning…many thanks for calling!

As I write this, Hopkins is executing administrative efforts to list Sandy with UNOS. UNOS stands for “United Network for Organ Sharing” and is the listing authority for organ transplantation in the United States (www.unos.org). This is the critical step in getting her closer to the solution we seek. It is scary and exciting all at the same time. I keep telling myself, one step at a time.

We had a great visit in Bay Harbor with my parents over the holidays. The weather was not very cooperative (rain killed all the snow that they had up there before we arrived). However, the girls and I were able to ski at Nubb’s Nob and the conditions were pretty good for man made snow. Anabel, another friend of Haley’s that visits her grandparents in Bay Harbor, came along to ski with us that day. Anabel and Haley ended their day in the lodge with hot chocolate and gelato. Hannah and her grandfather and I closed the lifts down!