A little Setback

First, my apologies for not posting an update sooner. I think the last note I added was on Tuesday, and it is now Sunday. Quite a bit has transpired over the last 4 days.

You may have heard that, as recently as Wednesday, the Drs. were actually considering the possibility that Sandy could come home by this weekend. Frankly, I was not thrilled about this. Miraculous recovery or not, she would be restricted to living on our first floor. This would require sleeping on the sofa in our back family room, which many of you know is essentially part of our kitchen. The room is surrounded by full length windows and lots and lots of bright, natural light all day long. It is also not very well insulated and the room gets cold at night. There is a lot of traffic through this side of the house, too. It’s a great place to visit, but you wouldn’t want to live there. You can probably see now why I was not thrilled with the idea. Fortunately or not, this is not an issue now.

A few major milestones were passed this week, most notably that the liver is certainly working. There is no concern about the viability of the liver at this point and the grafts seem secure. Much to her relief, Sandy was finally allowed to begin eating solid foods on Wednesday. They started her on liquids (broth and jello) and then gave her yogurt. Thankfully, Hopkins stocks the family favorite—Danon (fruit on the bottom) and her nurse searched the kitchen for peach. Sandy ate her first (peach) yogurt Wednesday morning, another (peach) at noon, another (peach) early in the afternoon….and so on. She moved to frozen yogurt by the end of the day. After not eating for a week, it tasted like ambrosia. You could see the increase in energy grow with each bite. She was beginning to feel much better, much faster.

Fast forward about twenty four hours— As you might expect, Sandy has a series of drains that allow fluids to be removed from her body. You would be amazed at just how much fluid can be pumped into your body (and how rapidly your body can expand to accommodate it!). The drains allow the fluids to escape from the body. These fluids are collected and analyzed to monitor the health of the patient. The analyses have shown that there are no infections and things look pretty darned good. Then, on Thursday, they noted an elevation in an enzyme produced by the pancreas. This is noteworthy because, in the Whipple procedure, they actually removed the head of the pancreas. The rest of the pancreas was left behind to do the things that a pancreas is supposed to do. The only way this enzyme would escape the pancreas and show up in the drainage is if there was a leak in the pancreas. So much for the solid food.

They took Sandy off of solid foods again on Thursday (no more peach yogurt for a while), and essentially forced her gastrointestinal system into dormancy. It may take a while, but it is expected that this will allow the pancreas to resolve itself. Sandy was put back on IV nourishment exclusively. They will install a new central line over the weekend so that it does not have to go through a vein in her arm. The veins in her arms have been thoroughly insulted and are not happy about having yet another needle stuck in them. So, now she sits with a big white bag (which I have nick-named “Anna Nicole”), about a gallon in volume, with “pre-digested” calories with vitamins, minerals, etc. It looks a lot like soy milk. She will be fed this way for an estimated two weeks while the pancreas heals itself. Yep, that’s two more weeks.

Imaging studies on Thursday showed a collection fo fluid around the liver that slso needed to be resolved. Late on Friday, Sandy was taken back into an OR to have a drain installed in her back to allow this fluid to drain. Not a big deal, and very simple to resolve. Once it drains in a few days, that should be the end of it.

It was a little discouraging for Sandy to hear the news about the drain and particularly the pancreas, but really, it’s not a big deal. This will allow her body significant additional time to heal before coming home. She is up and walking (some) now and should be able to climb some stairs before too long. I really think it will be better for her to be more mobile before coming home. I am sure she will appreciate the comfort of her own bed, the convenience of cable TV (and onDemand programming), and a bedroom door that shuts!

More later.

Progress is Good

Her progress is “shockingly good,” reported Dr. Cameron on Sunday. This is not to suggest that she is not without pain or discomfort, or that everything is perfect. Even with the best news, this still presents major challenges to her in getting through the day. The good news indicates that Sandy is recovering ahead of what might be called typical. She still has a mountain in front of her, but the news this far is excellent.

The quick update is that Sandy was moved from the SICU late on Sunday and is now in the transplant unit at Hopkins. Visitation is still highly restricted, and we have to take precautions that include wearing gowns and latex gloves. The gloves are purple—Ravens purple! (Reminder: NO flowers!)

I took the girls down to her room first thing yesterday morning. That was Monday, and Sandy was not expecting them at all. I went in first—to make sure the nurses weren’t doing anything funky with her—and then made the excuse that I left a bag outside the room in order to leave. The girls then came in and surprised her. Hannah and Haley thought it would be funny to do the “Purple Cobras” salute from Dodgeball. I swear, I did not teach them that! There is no question that Sandy was very glad to see them and grateful that they came. I think the nights in the hospital get a little lonely, and the girls really helped her spirits.

I won’t drag you down into the bowels (pun intended) of her medical progress, but will tell you that there are signs that this liver is starting to work. That is a mighty big milestone!

Here’s a funny story…our friend Elizabeth was in Nordstrom’s on Saturday. There was another woman who was talking on her cell phone near the jewelry counter. Elizabeth heard bits and pieces and heard that this woman’s friend was also in the hospital...at Johns Hopkins…and just had a liver transplant…and a Whipple…and she’s doing great…and they just removed her breathing tube that morning…That’s right-- she was talking about Sandy!

Yet another reason that they call it Smalltimore.

Post Op.

“Only a handful of people in the world have ever had a surgery this big,” remarked Dr. Cameron, during our post-op debrief.

Wow. You know this is a huge procedure, but that adds some perspective. This conversation took place shortly after Sandy was wheeled out of the OR and down the hall to the Surgical ICU, or SICU. During the rest of the conversation, Dr. Cameron told us about how the procedure went, and that he is happy with both the quality of the liver and how well it grafted. He confirmed that they found no evidence of cancer in any of the surrounding areas, including the lymph nodes. All of the things that had been removed—the old organ, billiary tree and the head of the pancreas—would be studied carefully by pathologists in the coming week. He also cautioned us that it is not uncommon for transplant patients to have to go back in the OR for any number of reasons. The liver is highly vascular and bleeding is not uncommon. Sometimes, particularly in the early days following transplantation, that requires additional surgery.

The next thing we are looking for is for the implanted liver to start functioning. This can take a few days. It started making bile shortly after being implanted, which is a good sign. We need it to do more than that, of course.

To our relief, his general tone was that the procedure was successful, that Sandy seemed to tolerate it well, and that both he and Dr. Malley expect Sandy’s recovery to go well.

The process in the SICU is to clean up the patient and get her settled before letting any family in the room. That took about two hours, at which point Beth and I were able to go in.

We had seen her very briefly as they wheeled her from the OR to SICU. She was barely visible under all the covers, but her head was obvious, with a breathing tube in her mouth and various other appliances and infrastructure around her. The crack up was that her tongue was actually sticking slightly out of her mouth, much like Riley used to do as a puppy. The thing that struck me immediately was that her color was already improved. If you saw her in the couple of weeks before surgery, you were keenly aware of the jaundice—she was about the color of a sweet potato, but maybe a little more yellow than orange. Now, she still had some jaundice, but was otherwise colorless. Maybe a little opaque!

There is an attendant in the SICU waiting room that was kind enough to call the nurses periodically to check on how Sandy was getting settled. Only about an hour after surgery, she reported that Sandy was awake. That’s preposterous, we all thought. We were told to expect that she would be unconscious for the entire day, possibly two. Then, about two hours after surgery, we were told that she was situated in her SICU room and we could go in (read: the nurses could now handle us).

Sandy’s parents, Gerry and Bob, had just decided to leave for home. Actually, it’s our neighbor’s home. The thought was that Sandy would not be awake, and only two family members were allowed in at a time. Graciously, they volunteered for Beth and me to be the two. I should confess that earlier, when the nurse explained that only two people could see her, I turned to them and said, “I guess that would be me plus one of you three.” Always the smart-ass.

To our surprise, she really was awake. She was awake and actually somewhat alert, if only for short periods. She was barely recognizable—but understood what was going on around her.

“Do you know that you got the transplant?” I asked her. She nodded. Remember, that was her biggest fear.

“Do you know that there was no cancer in the lymph nodes?” She nodded almost vigorously, and her eyes burst wide open when she did it. She could not communicate other than to affirm her understanding. Her eyes told me that she was grateful.

The machinery around her was spectacular. A ventilator on one side, and racks upon racks of those electronics that administer medicine. There were bags of fluids, antibiotics and other drugs, including her first doses in what will be a lifetime of anti-rejection drugs. What a spectacular sight, but I was glad that we were there.

This gets you to about lunchtime on Friday... Her progress since then has been terrific- I'll try to get some updates posted quickly, so please keep checking back.

One More Drill and then THE REAL DEAL

Fire Drill #2

Well, what a week this has been. I have been slow to update the blog since our second fire drill on Monday. That’s right—a second fire drill. This one got a lot closer than the first one. Naturally, I was in Tampa on business when Sandy got the call. Beth (Sandy’s sister) was in town to stay with Sandy in my absence and was able to drive her down to Hopkins. They admitted Sandy at about 3pm, with plans to roll her in the OR at 7:30pm. Those hours were spent sucking every last drop of blood from her arms, and wheeling her around the hospital for chest xrays and other such events. And a lot of time just sitting around. I made it back on a flight and was able to connect with her in the room at about 7pm. The waiting continued for several more hours until the surgeons finally rejected that liver. It was disappointing, but not totally unexpected. These things happen. One of them will pan out.

Enough about this one—it seems a lot less interesting after the events that started yesterday (Wednesday) and that continue as I write this in the wee hours of Thursday morning.


The Real Deal

On Tuesday night, Hannah declared during dinner, “Tomorrow is Valentine’s Day and I predict that Mommy is going to get her new liver tomorrow!” From the mouths of babes.

The call came, this time at about 11am. It was no coincidence, I was sure, that it happened while the East coast was being hammered with a blizzard, freezing rain and snow. Baltimore was under a sheet of ice over a few inches of new snow. That is nothing like the 18” that my hometown Chicago (poor Bears) and other parts of the Midwest were enjoying, but we had plenty of freezing rain, iced up roads, and downed power lines to make it interesting. As morbid as it sounds, the weather was working in our favor.

Sandy and I arrived at Hopkins a little before 1pm, almost nonchalant in our expectation that this too would be a fire drill. Beth left to go back to Ohio on Wednesday morning, so she was not with us. Of course, she had only made it about 70 miles west of Baltimore when Sandy called to tell her that we were on our way back down to Hopkins. I am sure she was torn—continue driving home to be with her own family (who had their own Valentine’s Day plans, complete with “Red Dinner”), or turn around and head back to Baltimore to be with her sister. Turning around would almost certainly end with her driving back to Ohio after another long and unfruitful day spent at Hopkins. The weight of considering what it would be like to be at home if this one did work out was enough to compel her to turn the car around. So there Beth and I sat with Sandy all afternoon and well into the evening. None of us was convinced that this would end any differently than Monday had.

I already said this was the real deal. You must have figured out from this that she got the liver. Not exactly—Sandy is in surgery even as I write this. It is 3:17am Thursday as I strike these keys and these hours have not passed without event.

Nurses came in to transport Sandy to the pre-op area just a little before 10pm on Wednesday. That’s right—American Idol was not over, but Sandy sucked it up and went anyway. Somehow, it just seemed inappropriate to ask them to allow us ten more minutes to see how it ended. The nurses indicated at this time that the liver was good and had been accepted by the surgical team. GAME ON.

We had known well in advance that getting her into the OR with an acceptable liver was one big part of the equation. Another part is for Sandy to pass the evaluation on the table. This evaluation includes sampling of nearby lymph nodes and other areas to rule out any spread of the cancer. A positive lymph node would kill this deal and the liver would pass to the next candidate. They anesthetized her at about 10:15pm and began the procedure at 11:43pm. At about 2:00am, a surgical nurse called to tell me that they had completed the step of gathering all the samples they would need and that they would call me back shortly with the results. Fifteen minutes later, she called again and told us that the doctors were satisfied with what they saw and would proceed with the transplant. That’s the news we were looking for. NOW WE’RE REALLY IN THE GAME.

I don’t mind admitting to you that my greatest fear in this process has been that I would be faced with the painful obligation of telling Sandy and the girls that the doctors could not perform the transplant because the lymph nodes were positive. This was also Sandy’s greatest fear, the fear of supreme disappointment and the despair that would result. At about 2:15 this morning, I knew that none of us would be faced with that disappointment. Thankfully, that moment would not come.
Just a few minutes before 5:00am, the surgical nurse called again. This time, her progress report told us that they had finished removing Sandy’s diseased liver.

The next few hours were spent implanting the new liver. A second procedure, called a Whipple, was also required to resect some area outside of the biliary tree and near the pancreas. The head of the pancreas was actually removed and the surrounding structure was reconstructed. Yes, that’s two major GI surgeries back to back.

It is now 10am, and Dr. Malley just came out to talk with us. The transplant team is working on closing her up and will take her to the Surgical ICU. Sandy will be kept unconscious for at least another day (possibly two) and then transferred to the transplant unit for recovery. The original expectation was that she would be there for perhaps a week, maybe longer. I am told that only immediate family can visit on the transplant unit.

This should bring you up to speed for now. I’ll post more as things develop. You have all been incredibly gracious through this and we appreciate all the love and support you have shown Sandy and our family. We’re going to need you now, too.

I should note that Sandy cannot accept flowers now or in the future. They will not be allowed on the floor of the transplant unit and she will not be allowed to have them at home, either. Fungus-bacteria-goopy stuff on flowers and in the soil is bad…

Stay tuned.

A Few Updates From This Week

Sandy became just too miserable—itching, jaundice, sleeplessness, and accelerating discomfort everywhere made it necessary to address the stents. She was a real champ in holding out as long as she did, but we decided to swap them out to try to give her some relief.

Replacing the stents is a double edged sword. On one hand, it restores flow so that the bilirubin level can go down, which in turn reduces the itching and other discomforts. On the other hand, this reduction in bilirubin also reduces her MELD score, which in turn lowers her position on the transplant list. To mitigate this, we scheduled a new blood draw immediately preceding the stent replacement. This gave new blood results with the highest possible levels. The new results can be used to determine her MELD score and placement on the list for thirty days.

The procedure was done on Tuesday (2/6/07) and Drs. Kalloo and Bascaglia were able to deploy two (2) 12cm stents that seemed to restore flow in the ducts. They observed what may have been a mild infection during the procedure, which seemed to progress immediately on Wednesday and Thursday. Sandy’s temperature did rise, but not all that dramatically. She seemed to spiral downhill rapidly on Wednesday and Thursday, losing nearly all energy and developing severe nausea. The Drs. prescribed oral antibiotics to address the infection, of course, and we can already see the difference, barely 24 hours later.

You may be interested to know what her MELD score is now. When first listed about a month ago, her bilirubin was at a mere 5.2 and her MELD score was 13. For reference, the normal range for bilirubin is 0.1-1.2. When updated two weeks later, her bilirubin had soared to 16.9, resulting in a MELD score of 17. The new blood results from Tuesday revealed bili at 27.5, and resulted in an adjustment of her MELD to 19. This is very, very encouraging!

I should probably note that it is the progression of PSC, and not the advancement of cancer cells, that is causing the progression of problems that the stents are meant to address. We still believe that the cancer has been eradicated from the lymph nodes and the primary tumors on the bile ducts remain at bay.

In other news, I spoke with Dr. Malley today. Dr. Malley is the head of transplantation at Hopkins and is responsible for leading Sandy’s care at this point. He remarked that he is surprised that the wait has gone this long, and he is encouraged by her new MELD score. With her blood type (AB), a score of 19 would seem to invite offers from all over the country. So, we’re optimistic that this could still go very quickly.

“Trust Allah, but tie your camel.”

There is an old Persian proverb—a favorite of mine—that says, “Trust Allah, but tie your camel.” So, though we are all optimistic about her chances of getting a suitable cadaver liver soon, we’re pushing the issue of live donation, as well. Sandy’s sister, Beth, has remained steadfast in her offer to donate a portion of her liver. Beth will be visiting Sandy for a few days next week and Hopkins will attempt to conduct the evaluations while she is here. At least this way we will know where we stand with Beth as a potential donor and will presumably have that available as a fully qualified option. It just does not seem to make sense to ignore this option if Beth is a suitable donor.

Keep the STAY STRONG SANDY items coming!

Organ Donation

I found some interesting data on the UNOS web site that I thought I would share with you:

From January – November 2006

Waiting List Candidates 95,029

Transplants 26,689
Donors 13,577


I should note that this is for all organ types and is not specific to livers. Some quick math will tell you that a mere 13,577 donors cannot meet the needs of 95,029 patients.

I don’t know how to relate this to liver transplants, but I am sure the data is out there somewhere. I’ll poke around and see what I can find to share with you.

You can learn more about UNOS and organ transplantation in the US by visiting http://www.unos.org/ . There is more information available at that link explaining the numbers above, as well.

Become an organ donor!