Listing Status #2

Dustin's MELD score did increase to 23.

MELD lab results are as follows:

Sodium 138

Creatinine 1.0

Total Bilirubin 14.0

Albumin 3.5

Ammonia 28

INR 1.8

The above information is the most current. Big Bird is now #2. He is getting very anxious & nervous. This is something that has been needed and wanted for a long time, but it is also very scary, cause you never know just how you might react to any of it.

His hospital quilt is almost done. Just have to make a final decision on the back. We got one hospital gown sewn and put through the wash, gotta pull it out of the dryer and see what if any changes need to be made before making the others.

The above pic is from July 19, the day before his ERCP. It almost looks like two siblings that like each other ;-)

Update

Friday we went to San Antonio again and met with the hepatologist. He was very nice this round. He expressed concern and hope actually. This was a first since we have been going since April.

He concluded that the ERCP they did on July 20 showed that his best option at this point is transplantation. They did put a stent in, but it seems to be causing some discomfort. They also found a hernia in his abdomen. The hernia will be fixed during the transplant surgery. They redid all his blood work, and he came back with a MELD score of 23. This is a point higher than his score from a couple weeks ago. His hep is hopeful that he will be transplanted soon. He has moved up on the list but he couldn't give an official listing status. The person that was ahead of him received a transplant on Friday...so it is possible that he could be #2 or #1.

Prayer Requests.....

As if dealing with Big Bird isn't enough, we found out tonight that my Aunt Karen has some scary health issues brewing. She is in the hospital, and I know that I am at least sending positive thoughts and vibes her way. Hopefully we will know more tomorrow, told my Grandma I would call for an update. She is dutifully staying put and taking care of all the fur babies. It is times like this that I regret that I live so far away from my family....

ERCP & All That

On Friday, July 20 (Happy Birthday to me!) Big Bird had an ERCP in San Antonio. Things went ok, they found that his left half of his liver is completely scarred from cirrhosis, and there was minuscule openings on his right side of the liver. They did place a stent, but were not confidant that it would do any good (surprise there-I really don't know why some doctors just can't listen). Well, later Friday night the pain from the ERCP was so intense that we made a trip to the ER he also had an added symptom of nausea, after 6 hours, we did get to go home. Of course Big Bird was no longer in pain with thanks to morphine.

Yesterday was better, but he pain made an appearance again today. Looks like we will be heading to SA again soon. Hopefully they can see him this week, otherwise, I will have to leave Mom & Big Bird to fend for themselves as it will be hard for me to escape work for 10 days while Miss Edie is seeing the wonders of Alaska (this is where I submit mass amounts of jealousy).

New Lab Results

So Big Bird had blood work done yesterday. His nurse emailed me this morning. He has a new MELD Score of 22. He is #3 in his blood group.

Since I actually have the lovely lab results here are what they look like:

Creatinine = 1.1

Albumin = 3.2

Prothrombin time = 14.8

INR = 1.6

Bilirubin, Total = 11.3

Sodium = 140

Lots of scary numbers. His Bili actually is really good right now, surprisingly. He started having lots of joint pain yesterday, he had grown used it to I guess, cause he wasn't complaining too much this morning.

Big Bird is having some tests done on Friday, so hopefully we will know what the cirrhosis is like in his liver and how bad the scaring is. We are hoping that maybe they will be able to drain some bile as well, that would help with the itching, but who knows.

The Boys

I took this picture a couple months ago when my grandpa was in town. We were driving in downtown Austin, and all the "boys" were all looking out the window at the same time. It was too cute so I had to share.

FALSE ALARM

THIS HAS BEEN A TEST OF THE DUSTIN EMERGENCY BROADCASTING SYSTEM!

We just spoke with Big Bird's nurse coordinator and the liver didn't come through. They think it went to another hospital-so hopefully it is a good match for that recipient.

This has truly been a test on preparedness for all of us. We were able to get him a blessing this morning, and that brought comfort. We certainly now know what we need to do to prepare.

His MELD is still 19, but apparently it isn't a very long list at this hospital, so he is right on up there.

Time to resume normal life, and certainly a time to reflect on what we need to take care of.

The Call???

This morning we received a call from UTHSA that they may have a potential donor for Big Bird. We will know more by 11AM. I am sooooooo unprepared. I should know better. Have been trying to get phone numbers so that we can hopefully get a blessing for Big Bird at least in SA.

Even if he doesn't go, he will certainly need one for comfort after today.

When we know something I will post.....

Love & Prayers to all of you!!!!

Harry Potter

We are nerdlings! I just ordered our tickets to see Harry Potter and the Order of the Phoenix on IMAX no less. So yes we will be see Harry on IMAX in 3D. That should be interesting. We are even taking Mom along for the adventure.....

I guess the appropriate thing to do this weekend (since we actually don't have a ton of commitments) is to try and have a Harry Potter movie marathon.

Go here http://www.harrypotterorderofthephoenix.com/
you can watch the trailer, they even have some fun downloads and other things for you Potter fans out there.

Birthday Success

We had a fantastic day. Lots of laughs, and lots of "child play". We got nerf guns, and well, all I can say is take cover. There are four around the house now and no one is safe-:-)

Even the puppies got in on the festivities and wore party hats- well at least some of them did. They were not to sure about it. Dusty dog did ok as long as he was able to hug next to Edie. Jasmine was just fine with her bone in her mouth. Bella was annoyed-true to herself that is. And Well we attempted Aukee-and he wouldn't have ANY of it. As soon as it went on, it came right off. Poochie was hiding in a small dark corner enjoying the yumminess of a Baconstrip bone. Suki-every the beauty queen did smashingly well.

We are in the full throws of Birthday Season. Jerry's birthday is July 5, then we have Melissa's on July 18 & mine is shortly there after. Good times. So I am sure I may be able to add another photo spread again.

enjoy the goofiness.

Happy Birthday Big Bird!

Happy Birthday Big Bird!!!!!

Big Bird's Birthday is on Sat., June 30. He will be celebrating 31 years of annoying me!
(I really should have been an only child!)

We are having a quite family celebration at home with a couple of his close friends for a BBQ and lots of visiting and catching up. The Fur Babies will get in on the act as well and celebrate along with him with some delectable treat that I will have to figure out today. I think we are expecting 12 adults and 6 fur babies....hehe

As for an update with where things stand, we are waiting to hear from UTHSA for scheduling an ERCP. They want to do this for exploratory purposes to see what is going on in is bile ducts and liver. This will be done some time in July-but who knows when-since we thought we would have heard something by now. He has been somewhat good the last few days-so that is very good.

I do want to send out prayers and well wishes to the Henshaw family from the PSC Support Group on Yahoo. Ken had his transplant and they have been through the ringer with complications, good news, worry, etc. If you can send some extra prayers to them, that would be grand!

Have a great weekend everyone...(and also Happy Birthday to Aunt Karen-her birthday is today)....

Tattle tail

Tattle Tailing...

Yes, that is what I feel like we did. We tattled tailed. We met with his regular doctor, and told him how we just didn't feel like the hep docs were on our side. That they just didn't give us the warm fuzzies. How every time we leave San Antonio, we feel hopeless, and lost. At least his doctor gives us some hope that he will get through this. He said he would talk to them, and see if he can't arrange for us to meet with one doc every time we gone from now on. We shall see....

Big Bird isn't feeling so hot. The itching got REALLY bad yesterday. They called in a script for an antihistamine and at about 5:30 this morning it knocked him out, it has helped a wee bit, but he has scratched himself raw and drawn blood in a few spots. Took him in this morning for lab work-we shall see if it reveals anything. I am not convinced that blood work tells the whole story-but again I am not a medical expert, just the one that lives with Big Bird. The fatigue is really bad, probably worse than normal-too bad he can't sleep-I get tired just looking at him.

But, my last few posts have been a bit of a downer, we haven't lost our sense of humor I assure you-it is in tack and in full use in our house. In the sick and twisted way we are, he complains he doesn't feel good, I tell him he is just fine, after all his MELD is only 19.....(again sick and twisted).

We had to take a Transplant Education Class last week, one of the things it says, you can't have Grapefruit, or Pepper after transplant. But the most disturbing, you can't allow your pets to sleep with you after transplant. Good luck explaining that one to my dogs-whom all believe he is a giant pillow to maul and snuggle in the afternoon. I will let him explain it to their pouty little faces, he can have 4 puppy heads staring at him in wonder as to why, WHY they can't maul and snuggle. Yeah, that is gonna work out well...

Scream

Do you ever want to SCREAM??????

I know we do. For those that have never had the opportunity to encounter a transplant situation, count your blessings. It has to be one of the scariest, most frustrating, infuriating, agonizing, helpless waiting you will ever encounter.

We had a follow up appointment yesterday with the hepatologist. Hoping for some insight into new symptoms, waiting time, MELD reconfiguration blah blah blah. No real explanation for the feet swelling, no real explanation for the "burning sensation" his skin gets when he sweats, no explanation for the increased liver pains and back pains. Instead we get sent home with a pat on the back, your MELD is still 19, everything looks good we will see you in 3 months. Oh my the way your MRCP last month was inconclusive, but we think we want to go ahead and do an ERCP (obviously there is no way his current doctor could be correct in the fact that and ERCP is not an option for him).

I don't know about you, but it is really frustrating when all you feel like is a statistic, a number. Which essentially you are when waiting for a transplant. We worked, prayed so hard that he would make it to be listed, we finally made it then, it seems that every time we visit the hep doctors we get sucker punched, and any hopes that he will actually be transplanted are dashed. We were told yesterday that they will prolong transplantation as long as possible, especially since his liver was still functioning. They do offer exception points, but again, he isn't a candidate because his MELD is only 19, and his protein production is within an acceptable range. His bili is down 14.2, but they do show him as having a vitamin A & E deficiency, so they prescribed some vitamins for him.

The thing with being listed, you HAVE to do what ever the Transplant Hospital/team wants you to do. They wanted to schedule the ERCP yesterday, but I told them I would rather wait until they spoke with his doctor since he knew Big Bird's case and has been caring for him for the last decade. This hospital was suppose to be highly recommended, but I will tell you their hep doctors haven't been the greatest doctors I have ever encountered. They are suppose to be the "liver specialist" and yet, whenever we meet with them, we always feel hopeless, and that he will truly be lucky to get a transplant. We really leave there feeling like there is no hope, that transplant is a possibility but to not get our hopes up. We leave there feeling like a statistic, a number. A means of money making, because those doctors certainly lack some sort of human connection, a means of reassuring a patient and their loved ones that all is not lost. This particular doctor yesterday went as far as to tell us that transplant was not a "cure" for PSC, but rather a short reprieve, that more than likely in about 10 years he would likely experience recurrence and again be a transplant candidate. How about that loveliness, we haven't even got through this round, and we feel like we are being told to prepare for it again in 10 years.

After visits like this, you wonder (aside from the fact that he physically just can't handle it) why isn't he just going out and enjoying life to the fullest? Never mind his doctor has basically banned him from open water, no lakes, no rivers, no oceans-too many uncontrolled germs. But as far as the transplant hospital is concerned he is "fine". I beg to differ, I see him almost fall from dizzy spells. I see him want to crawl up in a fetal position almost in tears cause he is scared to death of dying, I see the fear in his eyes when his temp crawls up to a fever, then relief, cause it doesn't quite hit 100. I see the fear in his eyes every time he grasps his side, because the liver pains and back pains have increased. This is what I live with everyday, and then have to be sucker punched by a doctor who doesn't have the compassion to listen to a patient when he tells him, I don't care what my MELD is, I know my body and something isn't right, then be told OK, we will see you in 3 months.

This is our world, our frustrations, for whatever reason, the path we were set on. I don't understand it, but I have to believe Heavenly Father has put us on this path for a reason.....

elephant man

Elephant Man has made an appearance.

Well not really, but boy do I like to tease Big Bird! New Symptom-swollen ankles and legs, with the added finesse of pain and tightness. Good times! LOL. Suddenly Tuesday afternoon, Big Birds ankles and legs swelled up. Now this wouldn't be so noticeable if he were not such a bean pole. But none the less it is. Put a call into the doctor, they said to keep the feet elevated, and he did all night long.

This afternoon took Big Bird in for an ultrasound on his legs-they wanted to rule out blood clots-and they did. NO blood clots found (thank goodness). But the mystery remains why all of the sudden? He does not have high blood pressure, his heart is in tip top shape-so we chalk it up to the stinky liver disease-PSC. It is after all a side affect.

He also had his routine blood work done last Friday (May 25, 2007) they got the blood work back and his MELD score jumped to 28 since his last blood draw April 30, 2007. So they want another draw, we are waiting to hear from the transplant hospital for orders. After they do this, and his MELD is the same, he will be bumped up the list to #3 in his blood class. WOW now that is a scary thought!

LISTED

Listed!!!

After years of waiting and wishing. It is finally here! Big Bird is LISTED!!!!! He has a current MELD score of 20. He is 6th on the waiting list for his blood type (A+).

It is bitter sweet. You wait and wait for this, then it comes, you take a deep breathe, and then WAIT. So many people die waiting for an organ transplant, but so many people live because they get the gift of life. Bitter Sweet!

So, for my non humorous post today, I encourage everyone to consider being an organ donor. You never know who or how many lives you could save, by simply donating your organs. Talk to your family about-pray about it. For more information on organ donating you can visit http://www.organdonor.gov/.

One more test

The Last of the evaluation process!!!!!


OK, so on Monday April 30, Big Bird gets to go in for an MRCP & blood work. This is the last of his evaluation tests before listing. Woo Hoo! We are getting closer. He has been feeling a little wonky this week. Side pains, chills & hot flashes (if I didn't know better I would scream menopause-hehehe). Just something else to watch. Found out that his RX plan doesn't want to pay for URSO-to expensive go figure. Talked to his doc about that, so he is gonna try and go without for a couple weeks and see how he reacts, if not guess we will begin the pleading process again from Axacan for assistance.

The lactulose doesn't seem to be doing anything for the loopiness (or if you want the medical terminology-encephalopathy). The Tourette's (no he doesn't really have Tourerret's just something we can say that explains the bizarre things that spew from his mouth), and the "picking" is still there. So he is upping that to 4x a day.

But on a fun note, for us gamers in the house....Yes all three of us, Big Bird, cousin & me all play the addictive game of World of Warcraft. Silly we know, but it is our "family time". For those who play will know, Darkmoon Faire is coming to town this weekend, http://entertainment.upperdeck.com/wow/en/ , so we will be exploring the Card game version of WOW. They also have RL quests, so we will be able to take some goofy pics around town. And since we are guild leaders we think we need to participate in this silliness. You can learn about our guild at www.kktwow.net, Knights of Kirin Tor, we play on the Farstriders server.


Other than that all seems to be well-considering in our household. I will be needing to get in touch with our Bishop from Church so that we have some contacts in San Antonio-I have been putting that off until we were closer to having him listed. We will have to have someone that can come and give Blessings when he is in the hospital in San Antonio.

Laugh

Laugh!!!!!
Laugh out loud!

So, we had a comment today (Thanks Buck!) I just had to laugh. I totally forgot to mention the pee test.

This was SOOOOOO gross! First you have to pee in a wonderful orange jug for a full 24 hours. They tell you to store your pee in the fridge or on ice. Could someone please tell me who would be sick enough to store your pee in the fridge in which you keep your food & drinks. That is gross.

We made the Big Bird keep his on ice in an ice chest, kept in the bathtub with the curtain drawn. It just grosses you out to think about it being there.

But let me remind you that you have to do the TWICE. One week apart. They want to make sure your kidneys are functioning. Nothing like coke colored pee to warm the gag reflux!

This is why you must always remember to LAUGH!!!!! We have a twisted sense of humor in our house, but you have to when you are going through something like this. You have to remember to laugh, cause sometimes it just gets to be too much. Faith, love & laughter are the things you have to hold onto.

One week of evals...

A week of evaluations entails.....

If you have every been sick enough to garner a week worth of intensive testing to see if you qualify to be put on the UNOS list for an ogran-then you know what that is like. If you are not, here is what a week worths of testing is schedule is like

Tuesday, March 27, 2007
8:00AM Dental Consult-Please report to the hospital 3o minutes early. Also, you are given a perscription for 4 horse pills to prevent infection for the 2 hours of x-rays and poking and prodding they will do to clear your mouth for any possible infections that may be looming.

1:00PM, CT Scan-please starve yourself! Nothing to eat or drink for 4 hours prior to the CT Scan.

2:30PM Clinic Appointment-Here we met with a less than personable Hep doc. He just didn't give me the warm fuzzies. One would think if you are there under going testing, you would think the doc would acknowledge you are sick-but instead leaves you feeling he would rather treat the disease (as if we haven't been doing that for the last 6 years).

4:40PM-FINALLY We get to go home (well hotel anyways) Exhausting and we are only on Day 1!

Wednesday, March 28, 2007.

7:00AM, EKG & ECHO-Have to be there 30 mins early (yeah cause 7 am isn't early enough-heck the sun isnt' even shinning yet!)
8:15AM Stress Test-yeah so they pumped him full of chemicals to stress his heart. Left a most lovely taste of metallic in his mouth. This test lasted until noon.

Mom & I sneak away and let him sleep for a couple hours. His lack of naps is not a happy scenario.

Thursday, March 29, 2007

9:15AM-Admissions-I still don't get what the purpose of this was, we got there showed them the letter, and they told us to just wait.

10:00AM-PFT's-His lungs are healthy-unfortunately he appears to not be using the full function of his lungs due to the enlargement of his liver. This is common in Liver Disease. Which does help explain the shortness of breath and dizziness.

11:00AM-Chest X-Ray-well they actually went ahead and did that when they did the CT Scan.
Woo Hoo we are done a wee bit early. Too bad it is raining cats & dogs so that really just doesn't leave us many options. We went and had lunch-then headed back to the hotel. Where we all napped. I really can't believe how exhausting all this is on everyone!

Friday, March 30, 2007

9:45AM-Cardiologist-Clear bill of health! His heart is healthy & normal. He has free cardio clearance for surgery-wooohooo

1:00PM-Nurse Clinic Appointment-well since they failed to administer the TB test, we cancelled this appt.

2:30PM-Social Work-We met with a social worker at the hospital. She talked to us about transplant patients. What to expect. About after care and medications that patients are on etc. She was impressed by his support-and was happy to see us there and him through this week.

His nurse coordinator-which is a super sweet lady-hopes to have the rest of his files & tests together to present his case to the transplant board this month.

If all goes well, by end of April he should be listed. They are putting him with a MELD score of 19.

We made it San Antonio

We made it to San Antonio........

We met with the Transplant Surgeon yesterday. They are going to evaluate Big Bird for Transplant. His nurse coordinater will be calling us within the next couple weeks to schedule the evaluation. This will take 3-4 days. Out-patient basis. He has a perliminary MELD score of 21 (based on blood work from December), but after being in the hospital and pumped full of IV antibiotics, his MELD dropped to an 18 based on the blood work done Friday morning-but they do acknowledge that the score lowered because of the antibiotics-fun stuff.....After all the evals and all is done, we are looking at possible listing for transplant in April or May....

The surgeon was very optimistic-which was assuring for both Big Bird and my mother. But there is a chance he could get really sick while waiting. Ah fun....But we will keep our fingers crossed, and keep the prayers going.

Just wanted to post an update that the appointment went well and we are on our way to what we have waited years for!!!!!!!

Home

HOME!!!!!!

Big Bird was released from the hospital around 7pm tonight. He is home, resting and preparing. We meet with the Transplant Surgeon tomorrow morning for a consult. I will post when we get home......