Tuesday, March 31, 2009


We get to add another checkmark on Ben's recovery list, he's offically driving again. Well, driving at a top speed of 15 mph on his way to the Great Clips within walking distance of our house. But hey, it's driving right? The hardest part was finding a spot to put his wound vac. It's a picky little machine that has to be upright at all times, and given that it's connected to Ben with a tube and a whole lot of sticky sheeting, you want to make sure that it's someplace where it's not going to suddenly fall over and land out of reach.

All in all, a successful adventure for today. And, I'm thrilled to hand over the keys. I like to drive, really, I do. But, I also like to stare out the window at houses, architecture and the landscape and frankly, driving really gets in the way of that.

Next mission, see if Ben can get in to his tiny little Civic. That should be fun to watch ;)

Monday, March 30, 2009

Another great clinic visit

Ben's doing amazing! He bounded in to clinic this morning so fast that I told him to slow down or he'd make the other patients jealous. He's definately back to his normal self, cracking jokes, smiling, laughing, much less tired than before the transplant. And, he's eating like a teenage boy. We joke about "First Breakfast", "Second Breakfast". "First Lunch", "Second Lunch", etc. Thankfully, for the past week, he hasn't lost any more weight but he's still not gaining anything back yet. Ben was already thin to begin with but after the transplant, he was dropping weight so fast. He's down about 14 pounds from before his surgery. For now, just not losing more pounds is a major victory. We'll work on beefing him up this summer.

So the offical report is that his liver levels came down even more over the past week, his wound is looking beautiful and the surgeon is very pleased with his progress. As of today, he's officially off of the insulin, no longer even has to test his blood sugar and he's been taken off of the blood pressure medication. And he can drive again. Well, as long as he's not taking the pain meds which isn't nearly as often now.

Keep in mind that he's only 29 days post transplant. Twenty. Nine. Days. It's amazing what a fully functioning liver can do for a person. And I think Ben deserves a lot of credit too. He's worked very hard, even the months before the transplant, to try to ensure the best outcome for himself. It's definately paying off. I'm so proud of him and I can't wait to see the strides he makes this week :)

Saturday, March 28, 2009

Every Saturday

I find myself thinking about the other family that's part of Ben's story. We know the donor was 44 and that's all. Of course, knowing their age, makes me wonder about their life. Did they have children? Were they married? Did they have a job they enjoyed? Did they start their Saturday out like normal? Did they have any idea, any fleeting dream that something was about to happen? I hope that their life was filled with joy and love, with amazing friends and experiences and lots of great memories. Most of all, I hope that their family is ok. I can only imagine the pain that they've felt. As hard as the past weeks have been, it never could compare to what the other family has gone through. I hope that they have some comfort knowing that their loved one helped so many people.

It's such an impossible situation, to know that while we celebrated, another family grieved . . .

Tuesday, March 24, 2009

The connection between transplant and diabetes

I found this explination for the reason some transplant patients must be treated for diabetes after transplant and I wanted to share it with those of you that have asked. Ben was never diabetic pre-transplant (nor did he have high blood pressure, that started post transplant too) so all of this testing, and insulin use was new to us.


The good news is that even if you're suddenly diabetic after your transplant, it's often a short term thing. This is the case for Ben. While he was in the ICU, his blood sugar levels were sometimes in the 250-260 range. Up to 150 is acceptable so he was way up there. Now he's down to the 70-100 range. Yesterday his nightly dose of long acting insulin was lowered to 10 units to taper him off. He started off at 30 units, then was dropped to 20. Next week he'll go off of it completely and the following week he can stop testing all together. Of course, this is assuming that his blood sugar levels stay within the range the doctors want which all indications are that they will.

Monday, March 23, 2009

A wonderful, great, super clinic day

In four short words, "Ben is doing GREAT!" His liver levels dropped dramatically and the surgeon is very happy with them now. His theory is that there was a clot in the bile duct and when they injected the dye, it blew the clot out and the bile started flowing better. Maybe I suppose. My theory is that he just needed a few more days on his higher dose of Prograf (a immunosuppressive drug). Regardless, we'll take the good news :)

Also, they agreed that he could lower his blood pressure med dose and he's down to just 10 units of Lantus (a long acting insulin) a night with a plan to get him off of it completely next week and then if his blood sugar levels remain under 150, Ben can even stop testing four times a day. Progress, progress, progress! Of course, he's still on nine or ten other meds each day but he's working on getting off of some of those too.

The last great news was that the surgeon feels that Ben's wound is healing well and the wound vac is doing exactly what it needs to be doing. The very best thing of all though is that Ben is no longer a twice a week clinic patient :) He's down to once a week. Don't get me wrong, clinic is a wonderful thing. However, it truely is the only thing you manage to accomplish on those days. No eating or drinking after midnight, then up at 5:45 a.m., to the hospital lab by 7 a.m., then wait around for a while until you're called in to the clinic for vitals and then everyone goes to eat breakfast and take meds and then it's back to the clinic waiting area by 9:30 a.m. where the patients are called in a few at a time to see the surgeons so your wait could be 10 minutes, or it could be an hour and a half. For instance, today we got done at noon, so five hours in the hospital. That's a lot to ask of a healthy person, let alone someone that's been through a transplant.

So, all in all, it was a great day, full of great news. That is, until you get us started about the insurance and their blatent lies about one of Ben's meds. In the interest of my blood pressure ;), I'll leave that story for another day. Just watch out if you use Caremark/CVS. They will lie, provide false information and generally give you the run-a-round to avoid filling expensive prescriptions. We'll see if they redeem themselves over the next 24 hours.

Friday, March 20, 2009

Gimme a N - O - T - H - I - N - G

Well today was very uneventful (yahoo). No narrowing in the bile ducts (YAHOO!), so no catheter (another YAHOO!!!) and no overnight stay (one more big YAHOO!!!!). They did biopsy four sections of his liver and bile duct so we'll have to wait for that to come back and I'm guessing that on Monday, they'll do some tweeking to his meds, but for now, everything seems to be just fine :)

Thursday, March 19, 2009

And he's going back in the hospital . . . .

Today at clinic the doctors decided that they didn't like his liver levels so they've scheduled him for a PTC (Percutaneous Transhepatic Cholangiography) and a liver biopsy. There's a chance that he's developed a narrowing in his bile duct (probably where they connected the new duct) and it's causing the bile to back up in to the liver. The "fix" is to place a catheter between his ribs on his side and use it as an entry point for placing stents in the coming months to enlarge the opening. They can also drain off bile with the catheter.

After the procedure, they'll admit him, we're assuming just for a day (good grief, please let it be for just a day) and then it's back on the road to recovery. If there is a narrowing, it can be corrected with stents so at this point, it looks like whatever they find is fixable. Ben will just have to get used to having a catheter on his side for a few months, I can't imagine that it is any worse than the huge, gaping wound on his belly. So, let's all hope that there are no other complications to be found and tomorrow is an utterly boring day otherwise.

OH! And the other news, is that Ben's infection is gone and in the words of one of the surgeons, his wound looks "red and beefy". One battle down, a few more to go :)

Oops, forgot to tell you all that he came home

Ben got to come home on Tuesday evening. It took forever to get the home wound vac and then we had to wait another hour for the wound nurse to come over and disconnect him from the hospital vac and hook him up to the home vac. The important thing though is that the vac and the antibiotics seem to be doing their job and his infection is clearing up. Lots of steps in the right direction :)

Monday, March 16, 2009

Looks like another night in the hospital

As of 9:30 tonight, Ben's still at the hospital. They originally said he would be released today but, he can't leave without a home wound vac (check out http://en.wikipedia.org/wiki/Vacuum_assisted_closure_wound_therapy for all kinds of interesting info about the process) so it looks like it won't be until tomorrow morning that they can get a unit there and we can get our "do and don't" instructions.

After sitting around and waiting all morning, there was a lot of progress made this afternoon. They removed most of his staples to allow the wound to close from the inside out and I'm now able to boast that I have seen the insides of my husband and have the pictures (of course) to prove it. I'll spare you the rest of the details and again, no photos, but I'll just say Ben probably weighs 5 pounds less with all the gunk that poured out of him today. And, he even got some fat trimmed out of him because the wound nurse said it was in her way. How do you like that? A new liver and a tummy tuck all in one. And even though he's basically vacuum sealed for freshness, he's still feeling well enough to get up and do his hallway laps. My husband ROCKS :)

So, we're keeping this in perspective. One tiny set back in the grand scheme of things. And most importantly, it was all caught early and with the wound vac, his incision should heal about 50% faster. Why they don't just put one on to begin with is beyond me.

Saturday, March 14, 2009

Do they have a Dyson for that?

This morning (well, yesterday morning now I suppose) I unwrapped Ben's dressing and his incision infection looked like it was getting worse. Not wanting to risk waiting until clinic on Monday, I called the coordinator and we were told to bring Ben in to the ER just to check it out. The doctor agreed that it wasn't clearing up on it's own and Ben was put on a wound vac. Basically they fill the wound with a dense foam, put another layer of foam on top, tape it all off and attach it to a machine that creates a vacuum. This pulls all the fluid out and usually it makes the wound heal faster. Since this is something a little more complicated, he had to be admitted to the hospital until they can get our insurance to approve a home vac and arrange for a home healthcare nurse to come out and set it all up. Sadly we aren't allowed to change the dressings for this on our own, the nurse will come back out to do that. Just imagine how upset I am at not getting to pull the foam out of his wound and put new foam in *ewww, ewww, ewww*

They also started Ben on an antibiotic and they're monitoring his vitals. Right now the infection is still localized so it's nothing to be too worked up about but it's definately something that needed taking care of and it probably would have gotten worse over the weekend. It seems that we caught it early so let's all hope that it clears up fast. If it also makes the wound heal faster, all the better.

And of course I had to snap a picture of Ben's lovely vacuum sealed belly. The black stuff is the outer foam and the tube runs from an open spot in his wound to the machine that collects the gunk. I'll spare you the "before" picture ;)

Friday, March 13, 2009

I'm amazed

At how Ben is progressing. I know he gets frustrated the he's not back to 100% already but he's come so far from the morning after transplant.

I walked in to his ICU room on Monday morning and he was in the bed, tubes all over the place, in both arms, up his nose, down his throat, a port in his neck with six lines running out of it, not to mention the tubes covered by his blankets. Monitors were beeping and there was that awful sound of the breathing machine. His eye lashes were still caked with stuff from taping them shut during surgery, he had iodine spots left on him, and the Ben I know and love was no where to be found in that room. The ultrasound tech was doing a scan on him, searching for signs of another blood clot in the new liver. If one was found, he'd have to be taken back down to surgery and opened back up. As she was doing the scan, I found one clear spot on his hand and wrapped my finger around one of his. I did our "I love you" squeeze and got nothing back. His hands were twitching, a side effect of all of the meds they were pumping him full of and he was gagging on the breathing tube. I don't know how I held it together standing there. I've never been so sad and so scared and felt so lost and helpless in my life. There was nothing I could do to protect him from this and nothing I could do to protect "J" if he didn't live through this. We have to believe that things will work out and people will recover but I'm all too aware that not everyone's story ends happily.

So thankfully, that morning was the worst. Ben would argue with that point I'm sure. He'd say "no, the days full of so much pain were the worst." But he didn't see what I saw. And so now, when I look at him snuggled up on the couch while I'm washing the billions of dishes that he and "J" have used in the past 24 hours I'm so thrilled. He's alive. He's here. He came back from an incredible journey. And at this moment, I have everything I need.

Thursday, March 12, 2009

To Love, Honor, and Pack . . .

Ben's wound with gauze that is. Funny, I don't recall that being part of our vows but none-the-less, that's my new twice daily task. It seems that I was correct (I love being right ;) ) yesterday when I called Ben's transplant coordinator because I thought his wound might be getting infected. And yippy, skippy, I got to watch the surgeon squeeze pus out of his incision this morning at his first clinic visit. Ahhhh, life is so full of glamour around here lately. You're jealous aren't you? Don't worry though. I'll be selling tickets tomorrow for anyone that wants to come over and poke your finger in the two spots the surgeon opened up this morning. I'm thinking $50 a pop (or poke as the case may be).

But, that's enough of "Infection Chat" because the really big news is that "J" lost her first tooth last night. Technically, I pulled it out but it was barely hanging in there anyway. So the Tooth Fairy has been alerted and tonight she'll be delivering some cash, a bottle of anti-cavity mouthwash and two new shiney Batman toothbrushes (yes, "J" is a girl however she's so not in to the whole Princess thing). Around here the Tooth Fairy makes a pretty big deal out of the first tooth. The goodies lessen with the rest of the teeth though. Wouldn't want to encourage her to be pulling out teeth just to make some cash.

So that's the news for today. Thanks everyone for dropping by to see how life's going around here :)

Tuesday, March 10, 2009

A belated welcome home

Ben was allowed to come home from the hospital on Sunday. We were packing him up just one week and one hour after they made the first incision for his transplant. Pretty amazing huh?

He's doing really well except for he's in an ton of pain. One look at his wound and you can tell why he's hurting so much. Infact, it's so stomach turning to look at, I'm not even posting a picture of it. Just trust me, it's a funky mess right now.

So for those of you that like little tidbits of info, here's some interesting facts;

*Ben's taking 30+ pills a day right now, plus daily long lasting insulin and occasionally fast acting insulin based on meal time blood sugar tests.

*He has to avoid outside visitors for now. Since he's still healing, he has a higher risk of catching something plus it would be miserable to catch a cold right now. If anyone wants to e-mail a message to him, you can do so to "eleven272008 at gmail dot com".

*Ben is almost flesh color again vs. the lovely yellow glow that jaundice gives you. I had no idea how jaundice he was all along. Honestly, I've never seen his forearms the color that they are now.

*Twice a week he has to show up for liver clinic at 7 a.m. at the hospital. This should only be for a few weeks, then he'll go once a week for a while, then once every other week, once a month, etc. depending on how he's progressing.

*He can't go barefoot outside or garden without gloves for the rest of his life. And no changing the litter box.

*He has to eat a ton of protein every day to help heal his incision. This is testing my cooking skills since I'm a 20 year vegetarian. I'm still a little shocked that I managed to fix him a cheeseburger that he said was good. The things we do for love :)

*Ben's post transplant hospital stay was 7 days. The norm is 8-10 days. Go Ben!

*The only thing we know about the donor was that they were 44 years old. No idea if they were male or female, what area they were in, or how they passed away. At some point, we can write a letter to the family. I don't think we're ready to do that just yet. It's an incredibly emotional process and I want to wait until the right time. I'm not sure if they'd be ready to read a letter just yet either.

So that's the update for now. I'm so far past tired and Ben is too but at the same time, we are so very thankful. It's hard to complain too much when not everyone gets to come home so fast or does so well post transplant. Once Ben's pain level is better (which it seems to be improving over the past 12 hours), it will be interesting to see the changes and improvements that come along each day. It's amazing to witness the healing that we are capable of. It's like watching a miracle.

Sunday, March 8, 2009


"Sitting there in your pajamas and all the time in the world and if I could keep any moment, it would be this: watching you and holding my breath with the wonder of it all."
-Brian Andreas

I love you Ben

Friday, March 6, 2009

Take a guess

So who wants to guess how many times I'll ask Ben "are you ok?" the first day he's home? I'm calling 7,837 (I know that technically I should not place an entry in my own game however, since I made it up, I get to play.)

The winner gets a . . . well, frankly you get nothing. But come on, sometimes isn't it just about playing and not winning?

On a related note, we keep getting different estimates of release dates. The latest being Tues. or Wed. next week. I'll just wait until he's in the car and we're half way home and then I'll worry about when they're sending him home. Anyway, that means you have plenty of time to come up with your guesses ;)

Thursday, March 5, 2009

Just a little update

He had a wonderful day today! They took out a bunch of his lines and he was able to sit in a chair twice. It totally wore him out but at least he was worn out from physically doing something vs. being worn out from meds. Also he got to have a lovely dinner of Jello and crackers. After not eating for five days, it probably tasted wonderful.

Now they're talking about letting him come home either this weekend or Monday. I'm so far past happy right now. Giddy, thrilled, joyful, etc. don't even come close to summing it up.

Is it real?

Every morning, I wake up and for just a few seconds, my mind thinks of all the "normal" stuff. Is it a school day? Is Ben in the shower or already downstairs making his lunch? What do I need at the grocery store? And then, it hits me. Ben had a transplant. He's not home. Life paused at 3:00 on Saturday afternoon. He's in a hospital bed, in the Transplant ICU. He's in pain, he has a port in his neck, and his belly looks like something out of Nightmare Before Christmas. But, he is amazingly, wonderfully alive. It seems like a dream. This was too fast, too easy, where's the catch? So far, he's sailed through the complications that've come up. The biggest being blood clot in his new liver during surgery, and an allergic reaction to the Thymo (a chemo drug to destroy his immune system). His blood pressure was high but it's responding to the blood pressure med they put him on. His pain level came down late last night, a blood transfusion seems to have helped his hemoglobin level (not sure about the spelling there but frankly it's 6:41 in the morning and I don't care), he's being given Magnesium and Insulin and the doctors seems satisfied with how that's progressing.

I guess I'm just waiting. Holding my breath so I don't get blindsided by something. I can't wait until he's given the all clear and we can bring him home.

When he's next to me again, I'll breathe . . .

Wednesday, March 4, 2009

Surgery part 2

Ben's fascia closing was done today and it went well. This is by far the most painful part of the transplant process. Just imagine, having your abdominal muscles cut open and then two days later, being cut back open, and then having the muscles pulled back together and sewn up. It makes me wince just typing it out.

Ben says that the pain is a 9 on a scale of 1-10 but I imagine that without the pain med, it would be a 15. Hopefully the pain will subside a bit in the coming hours and he can get some much needed rest.

Also he's been having some hallucinations as a side effect of all of the new meds they're pumping him full of. We knew it would happen but I'm sure it's still bugging Ben to be going though it. Especially since most of the hallucinations are of people he doesn't know being in his room. We've heard that some patients get really paranoid as a result of the all the meds. Hopefully Ben will get to skip over that side effect.

Other than that though, he's doing pretty well :)

Tuesday, March 3, 2009

30 Days

That's how long Ben was on the liver transplant list. WAS on the list. Because on Saturday, February 28, at 3:00 p.m. his cell phone rang and our entire world changed . . .

We had been warned that often you're called in once or twice before it really is a match. We had prepared for the call to come in the middle of the night, or while Ben was at work, but instead it came while we were all together, on a day where everyone was off work, just a few hours after we'd been goofing off with the camera, taking silly family portraits, on a day where Ben had said that he was feeling great and had lots of energy. It came just days after I had paid all the bills ahead, done extra grocery shopping and cleaned the house. It came on a day where despite having 50 shirts to pick from, Ben had decided to wear his lucky Ft. Myers t-shirt, the shirt that had become his uniform for medical procedure and testing days.

I'll post the rest of the story over the next few days. For now, here's some pictures. They tell the story better then I could anyway.

Ben and our sweet girl in the ER. Ben was about to have blood drawn, a chest x-ray, an EKG and vitals taken.

Waiting in the pre-transplant area. Ben had the entire place to himself. Which was fine since he ended being in there until around noon on Sunday.

Yeah, that'd be Ben's belly there. Hmmmm, liver disease or pregnancy? I never did get to make him that "Does this liver make me look fat?" t-shirt.

One of the nurses was nice enough to take some pictures during the transplant for us. It gets a little gory for these next few. You've been warned . . .

That would be a huge chunk of Ben laying open there. You can see the new liver in place. Take a few seconds to look at how smooth and red it is.

And now, to understand how truely sick Ben was, here's his liver. This image will be a constant reminder of why Ben decided to go through this painful process. When I first saw this, I was amazed, and still am. He was still working full-time, still playing with our daughter, still helping out around the house, still so very much himself.

And finally, the most beautiful scar in the world. It will always be a reminder of the amazing gift Ben was given by a family that will never know him, a family that in their most painful days, made an incredible choice. I wish that I could tell them that their gift will not be wasted. That they gave a wife her husband back, a daughter her daddy back, a brother his sibling back, and to an incredible set of parents, their son back.

So that's it for now. Ben's back off to surgery in the morning to close up his muscle layer. I'll update more when he gets through this next stage.