Imuran and why it sucks

Things have been relatively quiet on the home front these past few months.

So what has been going on? End of junior year is fast approaching. The boy has been so busy with exams, concerts, concerts and exams some days it seems like we never even see each other. The house is a wreck, the dog slightly lonely. But, he wouldn't change it for the world. And I am just so thankful that he gets to be this busy.

We won't have any major health updates until the end of June. The liver dude has ordered more bloodwork at that point. He is so sure that the boy has this thing beat, he didn't feel like he needed to keep up the monthly sticks by the vampires. Right now it is suppose to be resting time for his liver to heal. But, see above about those concerts and exams.
He is feeling fine in the liver department, although he is sick with a cold or something like that. I'm waffling on the edge of watchful eyes and taking him to the doctor. There is no fever, and that is the turning point. Fever = ER. With a compromised immune system anything can be a problem so we are prepared with all the fun things you have to do to stay healthy. You know that stuff your momma taught you when you were younger. The liver dude even wanted him to carry Lysol wipes around in school for the desks, that was where the boy said no. He didn't want to be THAT kid. He will wash his hands, use hand sanitizer, and stay away from sickies, but wiping down each desk in school is just too much. I don't blame him.

To keep his immune system on a leash he takes 150 mg of Imuran (azathioprine) a day. Imuran basically suppresses your immune system by keeping it from producing the stuff that a "regular" person needs to fight off disease. So a cold, flu, etc is a big deal. He can be sick for longer than you and I because of these minor things. He can end up hospitalized. We can't self medicate with over the counter drugs.... look at the labels. Many of them mention liver issues as a reason not to take them. So when the boy gets a cold, it is troublesome. It freaks me the heck out, I'm not gonna lie. He coughed this weekend....and I drove him  (and me) nuts. I can't help it. Last time he had that rattling cough.... we went to the PICU. Call it PTSD, over protective, being a mom.



From the great Pappa Wikipedia....
Azathioprine is used alone or in combination with other immunosuppressive therapy to prevent rejection following organ transplantation, and to treat an array of autoimmune diseases...

I won't list the adverse effects, reading them makes my blood pressure go up. But you can read for yourself here. http://en.wikipedia.org/wiki/Azathioprine

a little lesson on breathing

And this is why i didn't set a once a week or once a month idea for posting.... It is a deadline. Deadlines in my life are not good for me. I deal with strict rules and deadlines at work... in my real life I need some freedom. So... that coupled with amazing health from the boy means I'm a slacker of massive proportions with a blog. But quickly, he is rocking this living life thing. School exams, concerts, sleeping, breathing....he is mastering them all. 


Today I have been thinking a lot of self reliance. My boy is a self reliant, independent young man. He came out of the womb that way in a lot of ways. I'm realizing more and more... he gets that from his mother. BLASTED CHILD! Some of the things that tend to irk me... I gave him! 

Because of this independence I now can see the signs that were overlooked before the "incident" those things the doctors asked in the ER that made me feel like the worst mom of the millennium.

If you feel you may be experiencing low oxygen levels be sure to ask your doctor to check your pulse oximetry reading.

Symptoms are:

•  shortness of breath/ difficulty breathing/ dyspnea

•  extreme fatigue

•  chest tightness

•  mental confusion

•  tingling fingers

•  water retention (especially feet/ ankles)

•  chronic cough

The stuff I've underlined were there at least a month before his hospital vacation. And yes, we did go to the doctor. Several times. When he was loaded into the ambulance his pulse ox was something near 50. That is HALF of normal, meaning his organs were only working on half of what they needed to survive. That is why he went downhill so fast. 


But I didn't know what I needed to know- so I didn't ask questions that I should have maybe asked. How are we as parents suppose to know everything? We can fake it... and some of us pretty well. But BS and Google can only get us so far!

My perfectly healthy teenager had no reason for me to not believe the doctor's diagnosis. He was tired, because he is a teenager and needed more sleep. He was confused in that way only a teenage boy can be. The swelling was attributed to injury, not water retention. And the fingers.... well he held on to this little ditty of info until we went out to a local university for testing a month after his hospital visit. Only then did I learn that his hands tremor, and can go numb. Again y'all, mother of the year am I! No really, the liver dude told me early on not to beat myself up and not to get mad at the doctors. Again, we didn't know what we didn't know. There was no history to tell us that he had an issue until that day. 

You never know where your endpoint is. We are blessed with whatever time we have here on Earth. Blessed to wander and wonder about what this life is for. Think about why we are here, do for others and be love and light. My boy and I have a new leash on this. For me it has driven me into action to create the life I want. For him, it has given him the will and strength to stand up and say, just watch me. He has learned to speak out for himself, yes even against his mother's wishes sometimes. However, he does it with respect and to try and share the view from his corner of the world. 

Let Go of the Worry, Not the Story

A good friend said this to me the other night while we were catching up. I was telling her that I was ready to move on and forget that all this had ever happened. You see the last blood work numbers were stellar! Got the call a few days ago. All the Angry Liver Things have fallen into normal range.

In that conversation, she corrected me, there has been too much of a story to ever forget about it. Too much GOOD has come from this stint in the hospital and illness. A renewing of faith, a growth in the boy and me.

It reminds me of an old neighbor that I had, she survived two bouts with cancer and even had a breast removed...but didn’t tell people. I just don’t get that. She didn’t share anything and only accepted minimal help from those around her. She bottled up and just forgot that anything ever happened.

The story is what we learn from. The story makes us grow. It removes us from our comfort zone and into the realm of the unknown, which is where the most fun (and pain) comes from.

I am a bit (a lot) of an open book. I warn people and apologize for that, but sharing is what helps connect us silly humans. The boy isn’t nearly as open as me, and yet he lets that door be open just a bit more now than he ever has.

He has been brutally, jokingly honest about his sickness and hospital stay. In fact just last week he played the sick kid card! A fellow musician at school was bemoaning the loss of a solo and complaining about it not being fair. Discussions ensue amongst those in the room about auditions and how he could have tried for it, etc etc. Having enough of the excuses the boy says, If I can show up for an audition AND make it after just getting out the ICU then you have no room to talk. AND BAM. Conversation shut down. Other kid red faced, head down, walking out of the room. Other adults in a stunned silence and me cackling like a witch on Halloween. “Boy did you just play the sick kid card?” “Yep! And I am right, nobody is allowed to complain until they go in the hospital.”

It was a beautiful thing.

With “normal” numbers I feel a relief and weight off my shoulders. The worry has subsided, but the story will remain forever and always.

ALT update

As I have fallen off the wagon with posting this stuff in a timely manner... here is an update! :)

The boy has had a miraculous turn around. In November we were taking transplant. In December it was still on the table, but not still on the table for 2014. And then January came. Oh how we loved January.

The liver dude walks into the room with a piece of paper and a giant grin. On it are some magic numbers. The boy's levels are almost NORMAL! His ALT (angry liver things) is just 9 points from the normal range. So exciting! They stuck him for blood to check for anemia, scheduled more labs, which we had today but.... he has been cleared to move to every other month appointments! Did I mention I was excited?  This doesn't "cure" him. But it means he should continue to feel better and that the meds are working. 

The liver dude was very pleased and feels very comfortable with where things stand right now. We just keep swimming. 

Sometimes words fail, not often, but they do.  I cannot express the awe I have over this. I have read so much in these past five months. I come from a family.of "need to knowers" so I got it.honest. I hear stories of young ones with similar or less scary situations who have struggled and had transplants. The blessings in my boy's life are astounding. His health, his life is a walking  PSA for faith. 

Birthdays

This year is drawing to a close and mixed right into all the holiday hoopla me and the boy have birthdays.

For his this year (last month) we did something special. Well, our family friends did something special. I try very hard to claim my innocence in the whole thing. There was a quiet dinner with just him and his mom.....until the flash mob arrived. About 20 people I think showed up at the restaurant in party hats, sang happy birthday and left. You see the boy is the poster child for introverts. He doesn't like to be fussed over, he doesn't want to be in the middle of a crowd and lots of a attention. And those that care know this about him... so this is how they shared their love. With a tiny party. And then left him alone. IT WAS GREAT!

Birthdays, and regular days, have a way if getting away from us sometimes. It seems sometimes we are just moving forward waiting for bedtime and cursing at the alarm when it goes off too early. When you cant say what is a good day or bad day....each day MUST matter. If that is going to be a lazy day, then own in. If it going to be a sad day, then own that. But....the next day, MOVE forward. The sun will rise tomorrow and you will be given the gift of another day to do it all again.

Yesterday the boy's best friend came over and they took over the house with the strains of jazz music playing through their trumpets. LOVE IT! I'm reminded that three months ago we were hopefully that he would be able to play. And now he is wailing. It makes my heart.....and my head....burst. OH and the dog doesn't seem to like it too much either. She took to howling along with them. :)

Today we had another doc tor visit. Another round of test results. With hope and the thoughts of getting better, hearing it is gone, remission, moving on...Of course it had to be an adventure, because we don't do simple around here. Test results weren't ready, weren't done at all and then weren't sent over. Depending on who you talked to we got a different answer, but we do know those ALTs are even lower and another month will go by until we have to worry with anything else.
The boy is resting on his computer games. I took a nap. A nap! It is a beautiful day.

Anniversaries

As we move closer to the three month anniversary of our little vacation in the PICU, we also have another thing to celebrate. After 90 days has past the boy will have his own blood again! Because of plasma and blood transfusions he has basically been running with someone else’s blood pumping through him. Stop and think about that with me. For three months…. you have MULTIPLE people that have helped you live. I have never been able to give blood before, I was too scared. But now even though I am still freaked out by needles and the idea of it I will. I hope that you will consider a donation as well. I know fully understand the idea that it does save a life.

The rheumatologist told the boy in the PICU that until the new year he couldn’t do any testing. He said, “I’m testing somebody’s blood for a disease...but most of it isn’t yours.” I wasn’t in the room at that point. I missed a doctor visit! Not sure how I feel about that, but the boy remembers better than I do what some of the doctors said. I’m blessed to have him.

But that statement had a major impact on the boy. He didn’t quite know what to think about the fact that there could be 8 different people’s blood in him. I don’t think he has come to grips with that yet, I know it is on his mind because he reminds me. Oh… and now that there is a diagnosis and things are improving with the meds we don’t need to go to any other specialists. YEAH for less co-pays!

We also learned that the boy has what is called hyper mobility.  Think double jointed, but a little weirder. What makes it different? Well it is in his hips and shoulders. For anyone who has ever seen him wrap his arm around his head and hold his own chin all freakishly…. NOW we know how he can do that.  Does it hurt? Nope. He has his own built in parlor trick. Long term, sure he could get some aches and pains from it. AIH causes the same aches and pains. So… damned if you don’t, damned if you do.

ALT - Angry Liver Things

What is ALT?

From WebMD….

An alanine aminotransferase (ALT) test measures the amount of this enzyme in the blood. ALT is found mainly in the liver, but also in smaller amounts in the kidneys, heart , muscles, and pancreas . ALT was formerly called serum glutamic pyruvic transaminase (SGPT).

ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.

The ALT test is often done along with other tests that check for liver damage, including aspartate aminotransferase (AST), alkaline phosphatase, lactate dehydrogenase (LDH), and bilirubin. Both ALT and AST levels are reliable tests for liver damage.

Makes perfect sense right?!?!

Yeah I thought the same thing. So what does all that mean for those of us without all the letters after our names? It means if this number is too high your liver is sick. The longer that number stays up the more damage that is potentially being done. Which leads to more scary things like long term issues, transplants and on and on and on. So I remember it by my own acronym - ALT Angry Liver Things.

With the last blood work we found out that the boy’s numbers have dropped drastically in one month! HURRAY! He is at 144 now… and the goal is to get it under 40. Or "normal". This is one time we are shooting for something normal around here!

Colored ribbons

When I say my boy is one in a million… I’m not too far off. In reading all that I can find online and trying to connect with others, it has been frustrating.

The numbers are this:
less than 200,00 in the US
1-9 in 1,000,000
Less than .5%
And since 75% of those affected are female, the boy is truly, 1(or three) in a million.

In a world full of support groups and colored ribbons it is tough to feel like in some ways you are forging a road less travelled. I am always one of an adventure, so I am trying to just go with that. This is just another BIG adventure that God has placed in our lives. And don’t think for one minute that God doesn’t know what he is doing. This is a story for the boy to share in his future. A story of overcoming, and beating the pants off of something. A story of faith and determination. As I go on in my musings, I will explain the other trials he has faced. The scars that people can’t see. There is a plan for him. A big huge ginormous one. And I am lucky that he calls me Mom.

Oh and, please, feel free to prove me wrong. If you know more than I do I ask that you come and walk beside me and give me help, advice and a colored ribbon.

edit: thanks to my nerdiness and one of my dear friends....
There is a ribbon! Purple and yellow. And May is AIH awareness month.

And then there was a diagnosis

Sometimes in life we fragile humans get to a place where we just have to say, I'm done! 

I have been there for about two weeks. I have given all my extra strength to my boy so he would have a full bucket. But I have been running dangerously low.

Then the liver dude called. I have been a ball of nerves on the verge of either throwing up or crying all day waiting for him to call back. I NEED him to call. NOW. I need to hear that we have something to go on. I need...I need. I need a nap.

After my second call to the office, saying I know I know but I'm a mom you have to forgive me.....he called me back. Maybe I was a little more crazy psycho when I called then I thought I was. But he called....so I got my way :)

There is a peace in labels. We can fight all we want but there can be comfort in knowing we are a part of something. A peace in saying I belong to something. Even if what that is sucks. 

My boy has been labeled. A diagnosis is complete. He is living with autoimmune hepatitis.

Now for some medical reference from across the interwebs.....

~~~Autoimmune Hepatitis, affects less than 200,000 people in the US population.

~~~About 70 percent of those with autoimmune hepatitis are female.

~~~The immune system mistakes a person's own cells as invaders and attacks them

~~~A person cannot catch the disease from someone else.

So where does that leave things? He is a special young man. Even more than I ever knew. God thinks he is so special he is getting blessed with this as well. And even though it sucks... it is a blessing. Have I mentioned yet that it sucks?

There is a peace in knowing what he is up against, what he will be facing in life. It sucks. And I wish I could take it away.....but now he knows, now we know and we start to fully move forward. Tomorrow he will have blood drawn again. Thursday we follow up and the next phase begins. So far.... he will be treated with daily medications. It may be for the rest of his life, it will probably be for the rest of his life. Once numbers get level it will be relative smooth sailing. The transplant list will wait, I hope that it will go away totally and I will never have to think of it again. And the itemized bill from the hospital showed up today. 

Oh and Wednesday is my dear boy's birthday. That is going to be an evening to remember of its own.....