Thursday, August 27, 2009

Three Rivers

A show about transplant doctors. Hmmmm. It could be amazing. Or, since it's a topic close to my heart, it could be infuriating. I'm sure we'll be tuning in to watch at least the first episode. And without a doubt, I'll be bawling ten minutes in to it.

So then what'd you do?

We went on with life. That's the only way to explain the last few months. Ben healed, he's done all his required bloodwork, doctor appointments, taking his meds, etc. Our daily thoughts shifted from the transplant and the recovery to where to vacation, who should do the dishes, where to go for dinner on Friday night. We spent most evenings in Ben's parents pool, watching Miss J grow more daring with her diving and swimming skills, and preparing to send her off to first grade. We took off to Great Wolf Lodge, Kings Island and Holiday World (despite the fact that Ben can't ride roller coasters just yet - boy that was fun keeping him off of them) and we played tons and tons of Wii games.

It's hard to express what a luxary it is to have a normal, boring day. We take so much for granted, until there's a threat of it all going away. I hate that Ben had to go through this transplant. I hate the disease that could have killed him. I hate that for a while, Miss J shut herself off to Ben. And yet, something good has to come out of this. And it did. Thankfully, amazingly, Ben is doing great. Miss J seems to have overcome most of her fear and she's so in love with her daddy. I can also say that despite statistics pointing the other way, our marriage came through the past year stonger than ever. The divorce rate for couples where one partner has a chronic illness is 75%. I'm not going to say I'm shocked by that. I've told Ben this would have all been so much easier if I didn't love him. I can see how the stress and feeling like a single parent would crumble a marriage. Especially one that already had problems. I think we're good though. Unless any of you see him out running around with someone else. In which case, my threat** of "I'll remove that new liver with a rusty spoon and my bare hands" comes in to play.

**For any of you that don't know us, please understand we have a slightly twisted sense of humor. I would never actually use a rusty spoon to remove my husband's liver. Even if he was cheating on me. That would be horrible. I'm not really like that. I am a loving, kind human being. . .
I would use a rusty knife ;)

Friday, May 1, 2009

Some amazing numbers

From the Facebook page of Ben's hospital . . . "Transplants to date, Jan 1-May 1. Heart-8, Kidney-78, Pancreas-18, Liver-39, Lung-13, Intestine-12. Total 168 to date."

It's amazing to see that 39 in the liver catagory and to know that Ben's one of those 39. Actually, all of those numbers are amazing :)

Wednesday, April 22, 2009

Can you ever have enough blogs?

I suppose I'm offically addicted to blogging now. Ben, it seems, is refusing to give me daily things to blog about on here (how dare he heal up so nicely and go on about his life ;)) so I'm starting up Suburbia 365. It's either this or start talking to the cat . . .

(Oh, and don't worry, updates will still be posted here. This blog will just be for the topics concerning Ben's transplant, PSC and liver disease - everyday life will be over on the new blog.)

Monday, April 20, 2009

And he's off!

The wound vac that is. The surgeon said that there's really nothing left for it to do in the healing process and now he will be using gauze and tape. The right side that's a tiny, tiny bit deep (like half a cm) will still have to be packed with gauze but the rest just needs an overlay. They want to see him back in 10 days when they will probably cauterize the shallow section on his chest. I'm not so sure about this part. It sounds horrid to me. (Must. Stop. Reading. Internet.) Of course, every time they see him, they mention a new plan of action. First it was a plan to staple the edges of his wound again, then the next visit they nixed that and it was a possible skin graft, then it was leaving it alone and just seeing how the wound vac healed it up and today it's cauterizing. At this point I wouldn't be shocked if the next new plan involved medical leeches and maggots. (Ben, if you're reading this, you'd better be extra nice to me or I am so suggesting leeches ;) )

That's all I've got in terms of big clinic news for the day. It's funny because we used to go in with a whole list of questions and concerns and now we can't come up with anything. I'm afraid of jinxing it but it seems that Ben's to the maintence part where the changes are slowing down and everything is leveling off. His levels are good, he feels good, his meds are working just fine, etc. Last November, it seemed like this phase was so far away and yet, 7 weeks after his transplant, here he is. If his next visit goes well, he won't have to be seen in clinic again for a month. A whole month. Just imagine. I suppose we'd better get working on some summer plans :)

Does this mini laptop make me look geeky?

Oh Dell Mini 9, how I love thee. I had no idea that I needed the ability to play on the internet while in a waiting room. Waiting at clinic is so much more fun with this nifty little machine. I highly recommend it. And as an added bonus, I can look up all the mysterious medical conditions/treatments/ medicines as I overhear them. (Although, if I look up too many, I'll probably find myself huddled in a supply closet somewhere covering myself with antiseptic and hoping for a Lysol bomb to go off so I can make a break for the parking garage).

I'll post an update this afternoon about how Ben's clinic visit went. We're going back and forth on the possibility of the surgeon taking Ben off the wound vac. At this point, the wound is very shallow. Most of it looks like his skin was just pulled off (nice visual for breakfast time huh?) and even the deepest part is almost totally closed. I'm not sure what they'll have him do if they do take him off the vac. Gauze and tape probably. Thankgoodness we have a year's supply of that already.

Saturday, April 18, 2009

It's not you, it's me (ok, it's really you)

Dear Local Grocery Store,

Hi. How are you? How's the rest of your grocery store family doing?

First off, a congratulations is in order. You have done a wonderful job advertising your new lower produce prices. Great! I'm all for lower prices. However, it seems that you neglected to mention that those lower prices are because you are now stocking only produce that was grown while Bush was still in office. Moldy strawberries, dried out grapes and mushy tomatoes are not a value at any price. Should I wish to feed my family sub-par produce, your store will be my first stop. Oh sure, over the next coming weeks, I'll still come around a couple of times. We've been together for so many years. I'm not sure if I can quit you just yet. But I'll admit, I know in my heart, I'll just be going through the motions while I'm there. I'm afraid I'll soon find myself looking at other grocery stores the way I used to look at you. If it helps, I'll say it's not you, it's me, but we'd both know I'm lying. You let yourself go and I'm just too set in my ways to continue our relationship. Call me old fashioned but I believe that produce should at least look somewhat edible. I'm so sorry it has to end this way.

Frustrated and Fruitless

Tuesday, April 14, 2009

Back to work

After being off work for six weeks, Ben has offically went back to work. Part of getting to go back so early is due to his job. He's a graphic designer so it's not a physically demanding job. He has very limited exposure to people at work, with no exposure to the general public. He can get up any time he needs to to take meds, get some water, and using the wound vac at work isn't a problem and frankly, he likes his work. It's kind of the perfect type of job to go back to. If he was in construction, a delivery person, worked in retail or food service, etc. there's no way he'd be back at work already.

Yesterday was his first day back and when I checked on him (you know I had to check on him), he said that he wasn't tired at work like he was before the transplant. When he got home, he had some lower back pain and some pain in his incision. Nothing too bad, he didn't even take a pain pill for it and it was gone by this morning. We think it was from him leaning back too far in his desk chair. Since those stomach muscles are still healing and are very weak, even a tiny movement past his normal range can feel like he's done several sets of crunches. I sent him off with a throw pillow this morning and instructions to use it. Hopefully that will do the trick. If not, it will probably ease up in a few days as his muscles work some kinks out.

Monday, April 13, 2009


Ok folks, this post comes with lots of warnings. The following photos contain blood, open wounds, stitches, and open wounds. Did I mention open wounds? Oh yeah, and there's open wounds.

Stop reading right now if you are grossed out by this sort of thing.

You've been warned. If you're still reading then here we go . . .

This is Ben's incision after it was opened on March 16. That little section that was still closed was the part where the skin had actually healed together for the most part. They left those staples in. The rest were pulled out by two surgeons in about oh, three minutes of flurried activity. Which included one doctor saying "Oh!" when they opened the right side and a blob of pus and blood ran out. Yep, that's Ben. Bringin' sexy back ;)

Here's the top view from that same day.
Kind of looks like a shark or a bear got a hold of him doesn't it?

Now here is his wound on April 11, after having the wound vac on for almost a month. AMAZING right? The right side is almost entirely closed. It's just about a quarter of an inch deep in the deepest part. The skin on the very outside edge started closing up about week before this picture was taken.

This part is taking longer to close even though it was never as deep as the right side. Every time I unwrap his dressing it looks like the entire wound has been shrunk. Slowly the edges are creeping together. You can kind of make out the purplish, grainy new skin along the edges.

So there you go, in the spirit of sharing, that's what a liver transplant incision looks like if you have to go the open wound/ wound vac route. Honestly, it's not that bad to look at in person. The vac keeps it dry, and there's no smell. And it once it starts healing, it goes fast. I wish they would have just put him on one to begin with. I'm sure the insurance company has some hand in not wanting them to be used. I can only imagine the cost vs. going the staple route.

Wednesday, April 8, 2009


Waiting for tests to be scheduled
Waiting for for the doctor
Waiting for results
Waiting for prescriptions to be filled
Waiting for websites to load, looking for answers
Waiting for the lab to draw blood
Waiting for more tests
Waiting for coordinators to get back to you with answers
Waiting for listing
Waiting for THE call
Waiting for the team to arrive with the organs
Waiting for surgery to start
Waiting for news that he's made it through surgery
Waiting for tubes to come out and pain meds to kick in
Waiting for the doctors to make their rounds
Waiting for him to wake up for a bit
Waiting for a smile, a flicker of "my Ben" to pass over his face
Waiting for the next minutes, the next hours to pass, holding my breath
Waiting for a time where I feel he's coming back
Waiting for healing
Waiting for fewer meds, days without seeing him in pain
Waiting for the hospital release
Waiting for clinic days
Waiting for blood work and vitals
Waiting for surgeons
Waiting for what comes next
Waiting to start life again

It's been eight months since Ben started the testing process for PSC. We've waited so many hours, for so many things. It's nice to be on this side of things. To start feeling like there will be less waiting in the coming months. It's time for the three of us to start doing for a while. I suppose this is the point where we officially announce that we are moving on with amazing, wonderful life. That we're jumping back in with energy and smiles. We've got plans. Trips to take, memories to make, traditions to start. We've all been changed by the course of this journey, so here we go, we're more than ready :)

This wound brought to you by . . .

Ben had a fabulous idea at lunch today. He will now be entertaining offers for naming rights to his wound. It's a rather tricky shape so there are some logo limitations. We're thinking something along the lines of the Nike logo or a Mercedes logo. He's open to ideas, however, it'll probably be a hard sell coming from any "lady product" companies. But if the money's right . . .

Since tatoos are a big no-no after transplant, all text will have to be in the form of henna. And please, no "As Seen on TV" products. Although Mighty Putty might be perfect.

Next week he'll be taking endorsement offers for medical gauze, wound vacs and pain killers. Ka-ching!

The Wii just gets cooler

After having the Wii for several months, Ben finally figured out the password for our wireless router and we now have the Wii connected to our network. Our time wasting choices just doubled! Now we can play games with other Wii families, download old Nintendo games (got Super Mario Brothers 3 and Bases Loaded last night) and we can browse the internet on the tv. So cool!!! The old games are super cheap, SMB3 was just $5, and there's lots to pick from. I can already tell that Ben's going to have a whole slew of childhood favorites downloaded before long. I wonder what "Miss J" will think of these old school video games. I'm guessing she won't be impressed ;)

Monday, April 6, 2009

This week's clinic update - more good stuff!

Ben is now down to clinic every other week! I can't believe it will be two whole weeks without a doctor appointment. He does have to have to go in next Monday for blood work but that's no big deal at all. The surgeon is very happy that his levels continue to come down, and his Bilirubin is down to 1.9, from a high of 18 in November. He's now down to just four prescription meds on a daily basis along with some vitamins and we just started week six post transplant. He's just speeding right along.

One of the things the surgeon will be discussing with Ben at his next appointment is if he needs to continue on the VAC or if he can stop using it. I know Ben's tired of carting the machine around everywhere (it's in a black bag which we lovingly call his "murse" = man purse) and the tape really bothers his skin. Just imagine peeling a layer of skin off of your entire mid section every two or three days, he says that's what it feels like, and I can vouch, that's what it sounds like. After seeing the results though, I can understand why so many doctors recommend this machine. It really does an amazing job.

So that's all the news for today. I hope everyone has a great week :)

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 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.

Friday, February 27, 2009

Dream a Little Dream

For the past month or so, I've been dreaming about massive, deadly tornados. A lot. Usually I'm watching through a window or in a review mirror. I'm never in the path, but I can see it, feel it coming. So anyway, I guessed it was a symbol. Me feeling like my life was spinning out of control or something. Looked it up today and someone give me a gold star, cause I was right.

"A tornado is a violent storm in nature, and it may represent violent emotional storms in your dreams. If you have reoccurring tornado dreams consider the emotional changes in your life and also the amount of anger and rage that you may be currently experiencing. Tornadoes could also represent disruptions and upsets in your immediate environment and specific or current issues that may be overwhelming."

Quoted from

Now, I really don't feel like I have any anger or rage at the moment. Honestly, it'd take too much energy to muster up rage. I'd much rather use that energy for something productive like blogging or carting around my crazy heavy camera, maybe even for a load of laundry if I'm feeling domestic. But rage, naw. The rest of it rings pretty true though. We've definately been through a lot of emotional changes and come on, the part about "disruptions and upsets in your immediate environment". Oh yeah, got that one BIG time.

So maybe there's something to this whole dream symbol thing. What are you guys dreaming about?

Cutting your medical bills

Ben found this link on another blog. It's worth a read even if you have insurance.

Wednesday, February 25, 2009

She's so grown up

"Time stands still best in moments that look suspiciously like ordinary life."
-Brian Andreas

I'm so thankful that I get to record these moments of ordinary life. It's where all the true beauty is found :)
(Oh, could she look any more like Dakota Fanning in that last picture?)

Tuesday, February 24, 2009

We are surrounded by beauty

and some times we just need to take a moment to look around for it.

Monday, February 23, 2009

And a quiet week it was . . .

I was so afraid we'd jinxed it by talking about how great it was going to be with nothing to do last week but nope, it was a boring week after all. Thank goodness :)

So since I stayed away from all things blog related, I guess I'll do an update. Ben's next appointment is Wednesday for a CT scan. One of the requirements on the UNOS listing is a CT scan every three months along with bloodwork at set times too (depending on your MELD score). His last scan was at the end of November so it's now time for another one. I'd love to explain in all technical jargon what they're looking for in the scan but when I asked Ben last night his reply was "I don't know. Last time they just came and got me at 11 at night. I didn't ask." Do you see me rolling my eyes right now? Yeah, that was helpful there buddy. This is why I tag along to all of his appointments now.

The only other thing going on is the changes in his meds. The doctor lowered his Immuran and put him on Vitamin A and Zinc. The Vitamin A helps his immune system while the Zinc helps the body absorb the Vitamin A. Plus it makes Ben's coat shiny and his eyes bright. Oh wait, that's the Alpo . . . For the Immuran, the doctor cut out one dose a day so he's down to just two pills of that daily. His white blood cell count is low (so low the lab tagged the results) so hopefully a little less Immuran will help the white blood cell level come back up. I guess we'll have to wait for the next round of bloodwork to see if all this fiddling with his meds helps.

That's it for now :)

Tuesday, February 17, 2009

A week without news

It's been quiet around here. Thank goodness. This is Ben's first week without any bloodwork, doctor appointments, dental work, tests, etc. in at least a month or so. Dare we hope for a "normal" week? It's almost too good to be true. Work, school, watching tv, dishes, laundry, playing the wii and cooking. It seems so wonderful to *only* think about those things.

There's lots I want to post about. Plenty of medical tidbits to share and explain but for the rest of this week, I think I'm staying away from the blog. Maybe we'll even get to be bored this week. Now that really does seem too good to be true :)

For now, just a little reminder that we all need roots to grow . . .

Saturday, February 14, 2009

It's not just Valentines Day

It's also the 10th Annual National Donor Day. To learn more about the day and about organ and marrow donation, visit

Wednesday, February 11, 2009

Tuesday, February 10, 2009


Just to prove that Ben's entire life is now based on expecting the unexpected, he is now without a bile duct stent for the first time in four months. Yesterday was ERCP #4, which sadly, did not come with a "buy three get one free" offer (I'm still holding out hope for a $1.00 coupon for the next one though). According to the doctor, his left bile duct has been opened enough for the bile to flow and average size gallstones to pass without getting caught. His right bile duct is almost completely closed which Ben knew from his first ERCP so no stents or ballooning for that one.

So, it still seems amazing that we didn't come home with any new news yesterday. No new issues, no complications, just a routine procedure. It feels like nothing has been routine so far. I'm still holding my breath, waiting for something to come of this. Will his biopsy show something new? Will his bile duct close back up? Will he get another stone lodged in there and get another infection? This was all just too simple this time.

Friday, January 30, 2009

As long as there's ice cream.

Any one that's met our daughter knows that the girl is a problem solver. At five, she can work out a solution to what ever might need fixing. It often involves buying a replacement at Target (where, at three, she thought we should buy a new house from). Anyway, she has a deep concern about this whole transplant thing. Often it centers on Ben having to stay in the hospital, or me staying there, or even his incision or pain level. But lately, the big concern has been on the status of ice cream in the hospital cafeteria. See, when Ben was in Methodist hospital, Grandma and Grandpa would take their sweet granddaughter down to the cafeteria every evening while I visited with Ben. One night, it was discovered that they had ice cream. And chocolate sauce. And so, for the next few nights, ice cream was the treat of choice, and frankly some nights it was probably dinner.

The other important thing you need to know is that during his stay, we also watched the people mover that runs between Methodist and the other hospitals. Having stayed in Disney World, to a five year old, the people mover is the next best thing to the Monorail and surely must be just as fun.

So, now that you have the back story, here's how the conversations go . . .

Daughter: "Daddy, do they have ice cream in that hos-ti-pit-al where you're going for your liver transplant?"

Ben: "I'm not sure, maybe."

Daughter: "Well, if they don't, that's ok. I'm just going to have grandpa take me over to that other hos-ti-pit-al to get ice cream. We'll ride the Monorail over."

Ben: "Oh, um, okey."

Daughter: "Cause that ice cream was so good! Yum-meeeee! And then we'll ride the Monorail back to your hos-ti-pit-al."

*"hos-ti-pit-al": The incorrect pronunciation of "hospital" by a five year old. And it sounds pretty darn cute when you hear it.

See, our girl is a problem solver and, as long as there's ice cream somewhere close by, it's all good.

22 . . . 17 . . . .15 . . . .

As of early this afternoon, Ben is on the transplant list. He got the call from his transplant coordinator at 3:20pm and he's set up the whole list of contact phone numbers and which order they'll call which number and they'll be sending a pager too. It should be interesting to see the pile of phones and a pager next to our bed every night.

As for all the medical stuff, his levels actually improved some of the past three weeks so he now has a MELD score of 15, he was at 17 in early January (with an all time personal best of 22 in the hospital at the end of November). And two of his tumor markers came back ok, there's just one that the doctor has to review but the coordinator said that it looks like nothing (hopefully it's just the one that can be elevated by gallstones). Fortunately, if there is a problem, at least it's been caught very, very, very early. I don't think either one of us is too worried about it at this point but it'll be nice to be assured that it really is truely fine.

Next is another doctor appointment next Wednesday. They'll be deciding what to do about his current stent that's in his bile duct. Without a doubt, his MELD score would be higher without it in there. Of course, it's also likely that Ben would not be doing so well without it. Ben's a pro at the ERCP by now though, this will be his forth in five months or so. Maybe they have a "buy three get your next one free"?

So that's all the news we've got for now. We hope everyone has a great weekend!

Wednesday, January 28, 2009

He's approved!

Ben is offically approved for transplant by the transplant committee!!!

His doctor is requesting one more round of blood work Friday morning before he goes on the list (as soon as the blood work results come back), which includes testing for tumor markers. Let's all cross our fingers and hope real hard that those tests come back negative. A transplant seems like a walk in the park compared to cancer.

Tuesday, January 27, 2009


Come on and ring already.

Holding my breath

Today's the day Ben's case is being presented. I keep staring at the phone, willing his coordinator to call. It's going to be a long day . . .

Friday, January 23, 2009

Really, really bad tv

I love bad reality tv. "Real Housewives of the OC," "Tori and Dean", "Flipping Out", even "Bad Girls Club" if no one else is home to catch me. Bring on the drama and craziness. But even my very high tolerence level for rediculous drama didn't prepare me for what we found last night on TLC. Drumroll please . . . . .

"Saw for Hire" A show about a tree service company. Are those crickets I hear? But see, you would be wrong. This is no boring show. No sir. After I was able to stop my laughing fit over the very dramatic opening, I heard the show's tagline "protecing your children, you and your home from the deadliest vegetation on the planet -- trees." Deadliest. Vegetation. On. The. Planet! Who knew! Here all along, I've been worried about the boogie man lurking about when all along I should have been keeping my eyes on that 10 foot pear tree in the front yard. But the very best part, the absolutely gem of the show, is that they do their interviews while sitting in a $5.98 metal lawn chair straight from the lawn and garden department. Ben's favorite part of course was that the owner's last name was Nosak. Pronounced just like you think ;)

I've made up my mind, forget the whole small business owner thing, I'm working on a reality show of my own. How about "Camera for Hire"? Or maybe "the Liver Insider"?

The pressure of the next few days

If what Ben's transplant coordinator said is true, this will be Ben's last weekend not on "THE LIST". I feel like we should make the most of it. Once he's on the list, every thing will be just a bit different. No more walking out of the house without a cell phone teathered to you, no more letting the answering machine (oh yeah, we still have an answering machine - we're old school like that) pick up when we're eating dinner, we'll have a bag packed that will go with us everywhere we go from now on, and every morning we'll wake up knowing that there's a chance that this day could be the big day.

Of course there's also the aspects that I'm not going to dwell on. The reality of the risks involved. That's really where the pressure comes in. To completely and absolutely enjoy these next few days, that's my wish.

Thursday, January 22, 2009

We've got financial backing

This letter showed up last Friday. Do you see that bold sentence? "The patient meets generally accepted guidelines for a medically necessary liver transplant and he is appropriate for listing with UNOS." It's like even the insurance company is saying "yep, even we can tell that your liver is screwed buddy." It's funny how when you get in to this process, you get excited to get letters telling you that your loved one is sick because that's progress towards something. It's the days with no movement forward where everyone starts to get stir crazy.

I find it very funny that they haven't approved a hospital stay along with the transplant approval. You'd kind of think the two would go hand in hand. Drive through transplant anyone? Sorry there big guy, looks like this has to be done as an outpatient. Knowing Ben he'd be ok with that. Anything to get home sooner and back to his big screen tv and comfy couch.

Wednesday, January 21, 2009

More Cowbell!

Lisa are you reading this? Cause this still cracks me up so I'm going to share the cowbell story.

Towards the end of November, Ben had a fever and was in a lot of pain. (This is not the part that cracks me up just so we're all clear on that.) We knew he had gallstones and the surgery for removing his gallbladder had been scheduled and was coming up in just a few days. One morning before leaving for work (cause Ben NEVER misses work, he could cut an arm off and he'd probably still show up at work), he wrote on our wipeoff board, "I have a fever and the only prescription is more cowbell." For those of you that haven't seen the Will Ferrel/Christopher Walken Cowbell skit on SNL, find it. It's soooo worth watching again, and again.

Anyway, a week later, Ben was in the hospital because that pain was not gallstones but rather a nasty bile duct infection. My sister came over to listen to me freat and worry and basically keep me from losing my mind that day and she saw the cowbell comment on the wipeoff board. A few days later, guess what shows up in the mail box? Yep! A real genuine cowbell! Just for Ben! Lisa went to the Tractor Supply store and bought it. And our nasty little secret? Our daughter knows nothing about this cowbell. Because the noise level she would make with it would shatter a brick wall.

And our lesson today boys and girls is that we all need more cowbell in our lives. Go out there, make someone laugh. It truely is the best medicine :)

The magic number

The MELD score that is. For those of you that haven't listened to us drone on and on about MELD scores, MELD stands for "Model for End Stage Liver Disease". End Stage. Yep, that's a fun phrase. No good comes from End Stage anything. Unless it's End Stage Mortgage Payment or End Stage Lice Treatment maybe. Now, if you're really in to math, and want to google a bunch of things, here's the formula for calculating a MELD score

MELD = 3.78[Ln serum bilirubin (mg/dL)] + 11.2[Ln INR] + 9.57[Ln serum creatinine (mg/dL)] + 6.43

Fun right?

Sorry, back on topic. When we first heard this lovely MELD phrase, Ben's score was 8. That was in mid November. When he was in the hospital a week and a half later, it was hovering between 20-22. Way to go Ben! That'll get you on the transplant list for sure! (And oh how one of his doctors was pushing to get him evaluated for transplant while he was at that high number.) Now with Ben's latest labs, he's calculated that he's down to 17. Absolutely still in the transplant range. But, it just goes to show how often the numbers can change. And as they change, the patient moves in and out of catagories on the UNOS list (United Network for Organ Sharing). You can see the UNOS listings for your region or state by visiting their site

The really interesting part in all of this is that two people with the same MELD scores can be functioning at totally different levels. I've read some stories with people having a MELD score of 11 or 12 and they're very sick. Fortunately, even at 17, Ben is still working full time, still chasing our sweet girl around and still making me crazy. I'm so thankful that as sick as he is on paper, we still get a lot of normal life. My goal is to help him stay at this quality of life up until the day of his transplant. I know that having a great support system will help so much in this goal. And I know that Ben deserves a lot of credit for never having let any of this get him down. (If you're reading this, you're my hero Ben :) )

Tuesday, January 20, 2009

Check it off!

Check mark another part of the evaluation process off the list. Today we attended Ben's required transplant education class. That leaves only his remaining dental work (easy fillings) to be done and you know what happens then? Yep, he's free and clear to be listed. One of his transplant coordinators taught the class - she's so sweet and yes, we're claiming her as one of "his", goodness knows, we need all the good people we can get behind us. (It's like we've got our own little expensive version of the Verizon Network.) We got to chat with her a bit after class. She said that she would be presenting his case to the transplant team next Tuesday and then she would call to let us know when he's been put on the list. I can't believe it's here already. As of today, it's only been 103 days since Ben's PSC diagnosis. On the other hand, it's been 15 years since his Autoimmune Hepatitis diagnosis so we've known for a long time this day would come, it just takes a while to get used to "someday" turning in to "this year".

The story behind the name

Eleven27 otherwise known as November 27, 2008, (which also happened to be Thanksgiving Day). The day we were sitting on Ben's hospital bed and were officially informed that Ben would be having a liver transplant much, much sooner than any of us had thought. It was a morning of tears, fear and worry, one of those moments in your life where time seems to stop and everything gets quiet and still. I can remember exactly where everyone was in Ben's tiny portion of the Progressive Care Unit, the smell of the hospital linens, the sound of the doctor's voice as he changed our lives. And then thankfully, the words of the nurse that brought us back to reality as she explained things from a human perspective and calmed our fears.

Eleven27 - our journey begins.