Thursday, August 27, 2009
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
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
(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
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 :)
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
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
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
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.
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 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 :)
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!
Monday, April 6, 2009
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 :)
Thursday, April 2, 2009
Tuesday, March 31, 2009
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
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
It's such an impossible situation, to know that while we celebrated, another family grieved . . .
Tuesday, March 24, 2009
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
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
Thursday, March 19, 2009
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 :)
Monday, March 16, 2009
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
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 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
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
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
Friday, March 6, 2009
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
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.
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
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
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.
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
"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 http://www.spiritcommunity.com/dreams
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?
Wednesday, February 25, 2009
Tuesday, February 24, 2009
Monday, February 23, 2009
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
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
Wednesday, February 11, 2009
Tuesday, February 10, 2009
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
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.
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
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
Friday, January 23, 2009
"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"?
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
Wednesday, January 21, 2009
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 :)
MELD = 3.78[Ln serum bilirubin (mg/dL)] + 11.2[Ln INR] + 9.57[Ln serum creatinine (mg/dL)] + 6.43
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 http://www.unos.org/
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
Eleven27 - our journey begins.