All is good

I have updated in awhile...I guess you could say that is a good thing! All is well in Big Bird's world! Medically speaking anyways. Blood work is good, health is good, liver is good!

On antoher note, I am volunteering for the MDA Lock-Up this year. I am scheduled to be arressted on November 5. Please help me raise my "bail". You can donate online here. I know it is a step away from the liver programs that are dear to my heart-but still a worthy cause.

We are still struggling with out father's cancer. He has stage IV lung cancer with mets to several areas in his body-including the brain. This is just another challange we get to deal with.

FDA Alert

My trusty Yahoo PSC group set in the latest FDA alert. It just happens to be on Rapamune. The anti-rejection medication they had switched Big Bird to back in February. Apparently it has caused issues in kidney patients that were switched from some other anti-rejection to Rapamune.

If you are taking another anti-rejection medication and your doctors want to switch you, PLEASE question them until all your concerns are answered.

You can read the full FDA alert here.

Good News....sad news

Big Bird is getting better. He seems to be responding well to the drug therapy. His blood works has shown improvement each week and the jaundice is going away. He goes back in 2 weeks for more blood work. The transplant team is hopeful that the damage caused to the liver during this rejection will repair itself, but only time will tell us.

On Friday, June 5, I got a phone call my our dad. I realize we have had a very strained relationship with him for several years. But he is still our father. He called to let me know that the doctors have diagnosed him with lung cancer. My aunt, his sister died from lung cancer just 1.5 years ago. I'm still reeling from this news. He was going to see the specialist today and is suppose to call when he has some more news to report.

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.