Tobi = Death. WHAT???!!!

[chantelfox]

Hey everyone, ok so I was browsing through CF forums on MySpace. I
came across one that the parents of a young man made for him in his
memory. He died at age 17 due to liver failure from CF. The story
that the mom wrote about goes as followed...<br>
<br>
At age 15 the boy named Chris began hemmoraging in the car on the
way home home from a vacation. He was coughing/vomiting out ALOT of
blood. They took him to the ER and the Docs there said he was
hemmoraging due to taking way too much Ibuprofin over the past
couple weeks. They found out that he was in end- stage liver
disease and needed a liver transplant right away. Then the mom goes
on to write a message to her son's doctor that goes as followed,
but you can check it out for yourself if you prefer at:
http://www.myspace.com/chrisstaggs<br>
<br>
<br>
The mom wrote:<br>
<br>
"In his case his profound hearing loss was due to lack of
monitoring Tobi levels.<br>
On a patient with ungodly amounts of bleeding.<br>
The Tobi was absorbed into the blood stream.<br>
Causing an "overdose" of Tobi.<br>
Can we say "blood tests", monitor levels.<br>
You took enough blood work daily, it could of been
prevented!...Chris held you totally responsible for his profound
hearing loss!! You should of monitored his Tobra levels!! If it
wasn't for Dr. Nour we wouldn't of had the 2 years extra we
got.<br>
Don't you wonder if you would of only caught it earlier what Chris'
life might of been like now??"<br>
<br>
<br>
The boy died two years later, after the liver transplant. This is
such a sad story, I started tearing up when I read it. My question
is does anyone take TOBI regularly (one month on, one off) and have
their levels monitored? I don't, so should I?  Thanks all!<br>

 

[Lilith]

I'm a bit confused...was the boy doing inhaled Tobi or IV Tobi?
 Its common knowledge that IV Tobi will cause liver failure,
hearing loss, and other serious complications if the levels aren't
monitored.   But I've never heard of this happening with
inhaled Tobi.  I don't take Tobi by aerosol anymore, but it
would be interesting to know...

 

[chantelfox]

You know, I am not sure. The mom doesn't specify. I would think
that if it were the inhaled, that my docs would have mentioned
something about monitoring my levels, I HOPE! Then again his doc
didn't monitor his levels of whatever kind of Tobi he was on.

 

[Lilith]

Huh...I could be wrong, but I don't think inhaled Tobi could be
absorbed into the bloodstream, at least not enough to cause such
serious problems.  I'm betting he was doing the IV
version...<br>
<br>
This is quite a sad story.  How could his doc have been so
negligent?!  Heck, when I go on IV Tobi, I get annoyed with
how many blood samples my doc takes!  But after reading this,
I'm kind of glad he does...<br>
<br>
I suppose you could mention this to your doc, but I don't think you
have anything to worry about from the inhaled version.

 

[thelizardqueen]

Inhaled TOBI goes straight to the lungs, I don't think its absorbed into the bloodstream. TOBI IV goes straight into the blood stream, but you would think they would have been monitoring his levels. I know that TOBI inhaled can cause hearing loss, but I'm not sure about liver failure - I guess that might be one of the very rare side effects. I think Amy would probably know more on this one.

 

[IG]

Tobi (inhaled) has only been known to affect hearing (ototoxicity) and kidneys (nephrotoxicity).
As far as I know even the IV tobramycin doesn't affect the liver.
Though I know in great quantities any medication can affect any organ it would probably show up in the kidneys before the liver.

Tobramycin is an Aminoglycosides, which does pose a risk of hearing loss but there are so many drugs in the aminoglycoside group that CFers are prescribed that it doesn't necessary mean that his hearing loss was due to tobramycin. (other aminoglycosides include amikacin, gentamicin, kanamycin, neomycin, netilmicin, paromomycin, streptomycin, tobramycin and apramycin)

Quite honestly it could have been all the Ibuprofen he was taking.
I was at a point where nothing but tylenol would help the daily fevers I was having.
My doctors warned me that if I kept taking the tylenol dosage that I was that I was running the risk for liver problems.
It could have just been the Ibuprofen itself.
My boyfriend cannot take Ibuprofen. The first time he did he started upchucking blood. Come to find out it caused an ulcer.
From what I understand there is a link between liver failure and Paracetamol (acetaminophen)

"Paracetamol has a narrow therapeutic index - the therapeutic dose is close to the toxic dose. Additionally, paracetamol is contained in many preparations (both over-the-counter and prescription only medications). This means that, despite being one of the safest analgesics available at recommended doses, there is a large potential for overdose and toxicity.

Single doses above 10 grams, chronic doses over 6 grams per day, or chronic doses over 4 grams per day in patients with conditions which may increase susceptibility to paracetamol toxicity (alcoholism, isoniazid use, prolonged fasting), can potentially cause major hepatotoxicity (damage to the liver)"

The way she writes it, and the way I read it, I make the assumption that Tobi is the one causing both the hearing loss and the liver failure.
It's not. Tobi does cause hearing loss yes, I've strongly pushed this before as it is so important.
But from everything I read it does NOT cause liver damage.

 

[chantelfox]

I do know that I have been warned that even the inhaled Tobi
can hurt your liver. I do not know the extent to which it does. It
might be over long periods of time. It would make sense that it can
get  into your bloodstream, if oxygen you inhale gets into
your bloodstream and ( forgive me..this was my BF's example)
smoking pot gets into your bloodstream; that's how you get high
from it and why they can take a blood test to tell if you have used
it.<br>
<br>
I only posted this, because I just wanted to make sure that I
wasn't missing something since my docs never mention anything about
checking my Liver/Tobi levels. Thanks for all the input so far!

 

[LisaV]

No matter what you're taking and no matter how (inhaled, oral, or IV), if it can effect your liver, please make sure your docs are monitoring your liver enzyme levels, etc.

My husband died of liver failure (amon other things) and doc said his liver looked really nasty

 

[IG]

'Though I know in great quantities any medication can affect any organ it would probably show up in the kidneys before the liver.'
I'm not saying it doesn't happen, obviously but through everything I've looked through online kidney failure and hearing loss (I would know) seem to be the things associated from Tobi the most. I find very few correlations between liver and tobi (or tobramycin) when searching online.

When searching for tobramycin liver the first link <a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6624739&dopt=Abstract">http://www.ncbi.nlm.nih.gov/en...=6624739&dopt=Abstract</a> 'Antibiotic penetration in liver infection: a case of tobramycin failure responsive to moxalactam.'

When searching for tobi liver the first link <a target=_blank class=ftalternatingbarlinklarge href="http://www.walgreenshealth.com/whc/spharm/jsp/sp_hcare_cf.jsp">http://www.walgreenshealth.com...rm/jsp/sp_hcare_cf.jsp</a> 'In some patients, the bile ducts, which transport bile from the liver to the intestines, become blocked. This can result in permanent liver damage.'

Also when you go to the tobi prescribing information (<a target=_blank class=ftalternatingbarlinklarge href="http://www.abouttobi.com/prescribing/TOBI_US_PI(40-1013-F).pdf)">http://www.abouttobi.com/presc..._US_PI(40-1013-F).pdf)</a> it mentions both the risk for hearing loss and nephrotoxicity.
I guess really what I'm suggesting here is to do your own research. There are a ton of places that you can check on the internet. Worse comes to worse check with your doc.

 

[Purplelungz]

Anything inhaled will go into your bloodstream. Its not just injected into it. We breath because we need oxygen to get into our blood...thats what the lungs do. So anything you inhale medication will get into your blood stream, just probably not as strong as iv form. I just had to point this out because just reading it seems like some people dont realize that it does wind up in the blood stream (some not all).

To the original topic. I have no idea. I do know some cf people have problems with their livers more than others. It might be he had a weaker liver and the tobi affected it more so than it should have especially if he wasnt being watched carefully. I know a few friends with liver problems and they have more blood monitoring than other people just to stay in the "safe zones". If the doctors didnt have any idea he was having liver problems they wouldnt have done extra monitoring.....now this is with inhaled tobi...if the liver problems were caused by iv tobra and they didnt monitor at all then the doctors need to be slapped (at the very least-being nice here) because it should be common knowledge to check iv drug levels of any kind. Regardless of if there was knowledge of liver problems before.

 

[JazzysMom]

Even if Tobi does have the same toxic affects as Tobra my doctors do annual liver workup along with my other annual blood tests. I also get the peak/troth (sp?) when on IV tobra so either way I am kept an eye on. I dont see how the levels could get so bad causing such a terrible affect so quickly using either unless the doctor was just completely neglegent.

 

[IG]

After taking the time to read the myspace site and the original post again I think these excerpts from the myspace site should be posted to clarify things (especially to those that haven't read through the myspace site).

"They told us they believed the hemorrhaging was most likely caused by taking to many Ibuprofen over the last couple of weeks.
It made us feel like crap thinking we had possibly caused this problem.
Needless to say we were in the ICU unit that night.
They were nice to allow both of us to stay in there with Chris.
Chris thought he was going to die that night. We called all of the relatives and let him talk to them.
It ended up being a horrifying night in Amarillo.
It didn't help that there were major thunderstorms that night.
Chris continued hemorrhaging throughout the night.
The following morning they decided to medi-flight Chris and Mom to OKC.
Dad had to drive home, We are sure there was some more 100+ mph driving. Plus he had to drive through the storms.
It was Chris' first and only plane ride.
He loved it. Mom was terrified flying in a small 4 seater with one side for the stretcher, flying through major thunderstorms going into Oklahoma.
We landed at Wiley Post Airport and were transported to Integris Baptist Hospital, PICU.
I remember walking through the doors leading to the PICU and seeing my son James, my grandfather and Herb Hull.
Later that evening we learned that Chris was in end-stage liver disease (<b>due to CF</b>) and he would need a Liver to live.
The following 16 days were filled with numerous tests, surgeries, blood transfusions and a lot of prayer.
We were lucky enough to be able to sleep in Chris' ICU room. Which was a great thing but also put us close to a lot of other families tragedies. We witnessed a lot of death."

Later on when she's talking about his hearing problems:

"It was just sad to watch!
In his case his profound hearing loss was due to lack of monitoring Tobi levels.
On a patient with ungodly amounts of bleeding.
The Tobi was absorbed into the blood stream.
Causing an "overdose" of Tobi.
Can we say "blood tests", monitor levels.
You took enough blood work daily, it could of been prevented!"

Later on berating the doctor:
"As Chris said "He messed up big time!" "Why did he miss my liver failure?"
A question I still would liked answered.
Chris held you totally responsible for his profound hearing loss!! You should of monitored his Tobra levels!!
If it wasn't for Dr. Nour we wouldn't of had the 2 years extra we got.
Don't you wonder if you would of only caught it earlier what Chris' life might of been like now?? If you don't think about it, you NEED to!
Your not God but you played a major part in Chris' "earlier than should of been" death!!!"

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chantelfox</b></i>

Hey everyone, ok so I was browsing through CF forums on MySpace. I
came across one that the parents of a young man made for him in his
memory. He died at age 17 due to liver failure from CF. The story
that the mom wrote about goes as followed...



At age 15 the boy named Chris began hemmoraging in the car on the
way home home from a vacation. He was coughing/vomiting out ALOT of
blood. They took him to the ER and the Docs there said he was
hemmoraging due to taking way too much Ibuprofin over the past
couple weeks. They found out that he was in end- stage liver
disease and needed a liver transplant right away. Then the mom goes
on to write a message to her son's doctor that goes as followed,
but you can check it out for yourself if you prefer at:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.myspace.com/chrisstaggs
">http://www.myspace.com/chrisstaggs
</a>




The mom wrote:



"In his case his profound hearing loss was due to lack of
monitoring Tobi levels.

On a patient with ungodly amounts of bleeding.

The Tobi was absorbed into the blood stream.

Causing an "overdose" of Tobi.

Can we say "blood tests", monitor levels.

You took enough blood work daily, it could of been
prevented!...Chris held you totally responsible for his profound
hearing loss!! You should of monitored his Tobra levels!! If it
wasn't for Dr. Nour we wouldn't of had the 2 years extra we
got.

Don't you wonder if you would of only caught it earlier what Chris'
life might of been like now??"





The boy died two years later, after the liver transplant. This is
such a sad story, I started tearing up when I read it. My question
is does anyone take TOBI regularly (one month on, one off) and have
their levels monitored? I don't, so should I?  Thanks all!</end quote></div>



#1 did you all know that the #1 reason for livery failure is Tylenol? It's a fact. Many, many, many medications cause liver issues.

#2 You MUST talk to you doctor about interactions of Over The Counter (OTC) meds that you take. Ibprofin can affect the liver, and so can TOBI. Hence, liver issues.

#3 Side effects DO happen. Antibiotics and painkillers aren't water, people. It's scary, but it's true. There are many side effects of meds. Get to know them. Talk to you doc. Know what signs to look for.

 

[julie]

Re-reading it, the mom did specify. Second to last sentence says, "You should of monitored his Tobra levels".

Tobra is short for Tobramyacin in the IV form.

TOBI is short for Tobramyacin in the nebulized form

There is a difference. It all has a lot to do with the IB proufen use too. Too much IB proufen can cause a bleed out very easily as it thins the blood. The combination of an OD of that plus non-monitored Tobra (IV) could easily kill someone.

 

[chantelfox]

Oh, yeah. That makes sense. I thought she meant maybe inhaled
Tobramyacin, because I couldn't for the life of me understand how
his Doc neglected to monitor IV Tobramyacin and I saw
"Tobra" in one part and "Tobi" in another. I
thought they were to same, just different nicknames:<br>
<br>
"In his case his profound hearing loss was due to lack of
monitoring Tobi levels.<br>
On a patient with ungodly amounts of bleeding.<br>
The Tobi was absorbed into the blood stream.<br>
Causing an "overdose" of Tobi."<br>
<br>
and ..<br>
<br>
"You should of monitored his Tobra levels".<br>
<br>
I sure hope that she did mean IV Tobramyacin.  <br>
<br>

 

[julie]

Pretty sure that's what she meant, especially with the Ib proufen combined with it. Maybe she'll edit her blog. When I was first reading what you post I started freaking out, "gotta call the doc, get him to Monitor mark's tobi levels...." but then I remembered that with IV Tobra they monitor it (or at least they SHOULD!).

I'm sure her blog has freaked more than just us out. Maybe she'll fix it to be the right med.... oh well. Thanks for sharing anyways, it's always good to read things that make us check out our own medications (in this case my husbands) and make sure everything is being done to monitor/avoid side effects.

 

[princessjdc]

I know when I was on the iv tobramycin, the doc always done blood work once a week to monitor the levels on Tobi, because of that I cant take tobi in the iv form anymore, because it started to affect my liver, I believe, but I do inhale Tobi 28 on and 28off, and my doc always asks me if I ever get ringing in my ears, which I do on a occassion but not all the time, just once in a blue moon. They usually do blood work and xrays once a year, but I havent had it done this year yet, not even sure if they done it last year either. I dont think the doc is concernced about it seeing as Im doing really well right now. I should ask him about it.

 

[becca23]

When I was pregnant with my second child, my doctors prescribed TOBI, and the did do level to see how much actually crossed into the blood stream. The amount was very minimal, I do not acutually remember the number but I know the doc where not concerned with them.

 

[NoExcuses]

Let's get things clear.

TOBI is nothing other that inhaled medication.

Tobra or Tobramycin is IV.

I've seen several posts where it seems like people have these confused and for clarity's sake, let's make sure we're all using the same terminology to refer to the same drugs.

 

[Ender]

I think here the case was that Kris had a lot of lung bleeding, and the Tobi got into his bloodstream because of it. I don't think relatively healthy cfers have much to worry about, but an occasional check probably would be good. Kris sounded pretty sick though regarldless...

And ya, Tobra is IV form, tobi is made specifically for inhalation. However, they can use Tobra for inhalation as well. The only thing is that they can't use as high a concentration of antibiotic, and it does contain preservatives, so it can be irritating. My hospital supplies tobra, but it doesn't cover TOBI. The cost difference is amazing....

Kiel