We learned a new phrase....

So, Big Bird calls me, Monday morning at work, home nurse called clinic, she wasn't comfortable with his symptoms of the Vancomycin treatment. So clinic said-you need to come (wtf??? I so was not prepared for an impromptu trip to SA). But, what does Big Bird do on this 2 hour car ride??? SLEEP...butthead is all I can say!

They run the normal myriad of blood work, chest xray. blah blah blah..... And why yes, that is a lovely shade of YELLOW he is sporting. They say it will stay for 6 months to a year and his bili will go up and down this whole time. Yesterday, his bili was at 17. I asked about the LFT, AST etc., but we all got distracted. She did however say there was some minor improvement.

His lovely pic line for the Vancomycin treatments he has to get at home. Hopefully when we go back to clinic on Friday (yes, for the second time this week) they will take the pic line out. That is gonna make for come completely grotesque and awesome pictures.

It stings a wee bit when they change the dressings. He took it like a trooper. Of course, I encouraged them to go ahead and be mean. ....but they like him there?

Yeah...we were not admitted yesterday! We were very happy. It seems it's a crap shoot whether he gets admitted every time he goes these days. They did say, that this was probably an unnecessary visit, but when it comes to "Mystery" boy, they are being overly cautious.

So, the new phrase you ask, well it is DUCTOPENIC REJECTION. He has chronic rejection, but the rejection is starting/stemming from his bile ducts. I found an article here you can go and read if your interested.

So until next time, this was a day in the life of Big Bird.... I leave you with this bumper sticker as sighted on the way to clinic! It just struck me as funny since I keep asking Heavenly Father why he thinks I have the strength to go through all this on to of dealing with my poor Aukee baby.

And the answer is????.....

Yesterday we got the biopsy results back- Chronic Rejection.

Isn't that a delightful diagnosis to be given???

So, I hop over to the web and find this definition on medscape.com:

"Compared with other vasculzrized organ grafts, chronic liver allograft rejection is uncommon, most likely due to the unique immunologic properties of the liver allograft, the regenerative capacity of the liver, and better recognition and control of acute rejection. The incidence is approximately 1 % to 3%."

Whole article can be found here.


Are you kidding me, 1-3% chance of getting this. Lets hit the home run in rareness yet again...the rare liver disease wasn't enough...let's get more ambiguous with rejection.

The plan is to treat him out patient with immunosuppresent cocktail and hope the rejection will reverse or correct itself. This can take 6 months to 1 year.

I have no idea where this road will lead. I really had thought this journey was over.

So, the plan is to get Big Bird out of hawk and treat at home. At least he has his own place ;-)

Back to square one!

After 6 Thymogobulin treatments, we are back to square one. He is not responding to treatments. They readmitted him on Monday, May 11. Another biopsy was had yesterday and we are awaiting the results.

After some blood cultures, an infection was found in his port line. So, they removed the port line and have been dispuring large amounts of IV antibiotics to clear up the infection.

Where o' where do we go from here???

I just pray that they are able to reverse the rejection.

One the road to recovery?

On Sunday, Big Bird was released. After a second liver biopsy, it was determined that he was in full blown liver rejection.

We believe the rejection started with a UC flare two weeks ago. Anyone who has any knowledge of UC or any type of IBS will understand that when you have an active flare, things tend to go right through you. So, this is what we think may have happened to his anti-rejection medication.

The rejection was diagnosed on Friday morning. They immediately started him on IV steroids and Thymogobulin. His bili got up to 18, and his liver numbers were steadily climbing. Migraines were also an issue along with nausea. By Saturday, we started to see some improvement in liver numbers. Sundays' blood tests had his bili down to 14-so after his 4-hour Thymogobulin drip he was discharged. He has to go back to clinic on Tuesday, more blood tests and another 4-hour Thymogobulin drip. They may even repeat the IV drip Thursday and Monday depending on blood work.

There was some liver damage, but since the liver is a remarkable organ, they are hopeful that with turning the rejection around that it will self correct.

So, we keep are fingers crossed that we are indeed on the road to recovery.

Back in the hospital.

Well, we brought Big Bird back out. He is keeping Big Bird company on this hospital stint.

Oh yes, now he has this rash (no clues as to why) on his back, upper chest, upper arms.

Neck, and hair line as well.




The lovely yellow hue has returned. Sporting a bili reading of 17. Yeah.. we are back to pre-transplant numbers.

Isn't it a grand shade?

They repeated the MRI last night, and today was told there appears to be a little fluid, but everything looks normal. WTF???? Are you kidding me???

The did a liver biopsy this morning. So we shall see. They say he is a mystery. The blood works says something is wrong, yet the both MRI's and the first liver biopsy say different. Negative for all Hepatitis strains. ARG!!!!!!

Too Good To Be True!

After 16 months post transplant. Great lab work (with a minor exception for the toll Prograf takes on the kidneys)...Big Bird is once again-yellow.

Friday things just turned. It is amazing how quickly they turned. He was at his GI on Thursday for a routine follow up-all was well. Friday afternoon, onset of vomitting and jaundice. Admitted overnight-pumped with steriods and released.

Now, here is it Tuesday, his bili is up to 9. They are admiting him in San Antonio in the transplant hospital. They are currently rounding up the transplant team. They plan to run tests and do a liver biopsy.

So we wait........

Moving On

I know it has been some time since I posted.

Big Bird, has moved on. Yeah!! He moved into his own apartment in January. He went back to work on a part-time basis in February. SSDI is working with him to ease him back into the working world.

So, needless to say, ALL IS WELL!!!!

Big Bird is 15 months post transplant this month. Other than some minor elevated kidney numbers everything is working well.

8 Months Post

Yesterday Big Bird was 8 months post transplant. Liver results are in, and he is doing P-E-R-F-E-C-T!! He has truly been blessed!!

Thank you to everyone who has and continues to keep him in your prayers.

Big Bird is in school now, and doing ok. He is taking a Business Management degree course, so anyone who knows him well, knows that written communication (verbal could be questioned) is NOT his strong suite, but luckily he has a cousin who is very patient with him and has been a great tutor for him.

I will have to get some recent pictures up of him. We still have not written to the donor family. Though this is close to our hearts. We talk about doing this frequently, but the words just seem to fail us. But we will continue to push through until we can most express the gratitude and love we have for this family.

Difference

I thought I would do some comparison for the eye....

This is Big Bird, June 30, 2007. Jaundice, 187lbs of skin & bones. Sick....he wasn't even sure he wanted people over for his birthday.....

This is Big Bird, June 30, 2008 (well actually it was June 28.. but really you get the gist!) NORMAL color, his baby blues are back, no jaundice to be found! 218+lbs of healthy weight! (he is after all 6'10") His face is full and round, not that sunken sick look of a year ago.

So, yes, I would say, Big Bird you had one of the BEST birthdays you could have ever imagined!

And just for giggles.....

Here is the cake his friends got him for his birthday bash with his friends...

Happy Birthday!

Happy Birthday Big Bird. You are now a whooping 32 years old! And 6 months post transplant.

???????

I am tired! I am ready to stop being the sister and the primary caregiver. I am ready to give up! I am ready to have my own life!

Six months post transplant, he is doing remarkable well medically speaking. But now....now I am tired of the fights! Here is the latest...

Big Bird: "Saturday night my friends are throwing me a birthday party at Grahm's, do you wanna go?"

Me: "No...why are your friends throwing you a party in a bar? Why are 30 & 40 year olds still hanging on to the bar scene?"

Big Bird: "They are my friends, I don't say anything about your friends"


Am I the only one who questions the intelligence/intentions/friendship of "friends" who throw a birthday party in a BAR for a liver transplant recipient?????

Of course this is my rant...so I won't post it here....I'm just beyond patience level anymore these days.....sigh............

Stand Up to Cancer

The networks news anchors are coming together and launing a new fight on Cancer. In honor of my Aunt Karen-I donated and launched a "star" in her memory. You can learn more of this initive here.

Idaho bound!

I am a total gluten for punishment. Being sentenced to two weeks on a road trip with the crazed lunacy of roid raged person!! Please pray for Big Bird's well being, other wise he could find himself left on the side of the road in stinky New Mexico never to be heard from again... Otherwise, it is some Grandpa visit time!!!

Dear Aunt Karen

Early this morning our dear Aunt Karen lost her battle with lung cancer.

Life

Life happens. Big Bird gets his transplant. He is doing, as he doctor puts it last visit "spectacular".

Now, my Aunt Karen has stage 4 Lung Cancer. She is a fighter! It breaks my heart. I just pray that she is kept in comfort while she goes through this.

Happy St. Patrick's Day!

Myspace Layouts

And A Very HAPPY BIRTHDAY to Grandma!!!!!

3 Months

Big Bird is 3 months post transplant. He is doing VERY well. Tomorrow he will start to wein off of the one of his anti-rejection medicines.



I can't believe it is already 3 months. The change has been immense. He is gaining a little bit of weight (oh how he desperately needs it).



We will be out and about all weekend-so I will get some recent pics and post them next week!

Looking, well normal

People are often amazed at how much Big Bird's appearance has changed over the last couple months. Most of the jaundice has disappeared. The yellowness in his eyes is mostly gone (just a wee bit in the corners of his eyes). His face is filling out-the sunken skeletal look-no more!

He almost looks HUMAN! No, if only he would act human and I wouldn't want to kill him for his obnoxious antics on a regular basis (but I suppose that is me just being a sibling).

He is 2.5 months post transplant. All is going perfectly. He even managed to not catch the flu bug Melissa & I both got plagued with for nearly 3 weeks.

All is well

Tomorrow marks a 2 month milestone. Two months ago tomorrow Big Bird received his liver transplant. He is doing very well. He doesn't look skeletol anymore. He actually has some roundness to his face. He belly has healed nicely. Each day is a day of progress. He still has days were he is easily exhausted, but for the most part-he is doing well.

We talked this weekend about preparing to write a letter to the donor family. This is a difficult thing to do. How do you thank someone for something that goes beyond measure? It is something we feel we need to do, just trying to compose the right words and the appropriate tone has been hard. We are truly greatful.

I will get some pics posted soon of the scar and of Big Bird.

Normal Labs

For the first time in years!!!!! Dustin has normal labs. It is amazing what the last few weeks have brought us.

Dustin goes to two week appointments now. So no more clinic until February 1. He has been to very blessed in this whole situation.

His skin color is normal, his eyes are normal, his labs are normal (too bad he isn't normal-hehe). This has been such a blessing. Tomorrow he will venture in to a public setting for the first time (aside from doctor visits)-he will be going to church-everyone is very excited.