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.)

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.

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.

Signed,
Frustrated and Fruitless

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.

wound

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.
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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.

Waiting

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 ;)

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 :)

A good explination of primary sclerosing cholangitis

http://www.mayoclinic.org/primary-sclerosing-cholangitis/

Lots of good information.