He has been having phlebotomies to reduce the iron, but his liver enzymes have stayed high for over a year. He just saw a gastroenterologist, who wants him to have a liver biopsy. Apparently this is the only way to get more specific information on just what is happening in the liver.

The GI doc made it sound very minor, but looking it up, it is a little more complex than we were told. Any good advice on this? I've been going through some extreme herxing myself, and am just coming around enough to realize I need to check this out a little more.

My son is 24, just on the edge of taking responsibility for his own treatment, but still needing help in how to evaluate things. What should we look out for?

The liver biopsies at the hospital where I am were done in the radiology dept. under ultrasound guidance as an outpatient.The doctor usally orders pre procedure blood work like PT, PTT and platelet count. Since you know
the liver is very vascular the doctor wants to make sure the platelet count is not low and the coags are normal to insure good clotting post procedure.

We also took a health history prior to the procedure to check meds, surgeries, etc. Nothing to eat or drink the after 12 midnight before the procedure.

For us it depended on the patient if they wanted to be sedated for the procedure. Most chose not to. If they did we would use a little versed and morphine.

The usual vital signs and signatures before, also needs someone to drive him home.
When the patient first goes into the room they are positioned and the ultrasound tech and doctor take a look with ultrasound to see the area the doc wants to biopsy.

The prep is usually betadine. We did either one of two types-a punch biopsy(large core) which involves a larger needle type instrument or a fine needle biopsy. I think the preference is how much tissue is needed and what they are looking for.

Following the betadine prep the doctor gives some local lidocaine and then under ultrasound guidance does the biopsy. As biopsies go,the liver usually goes smoothly as it is a large organ and therefore a pretty easy target. The speciman is place in a container with a preservative and sent up to the lab with whatever instructions the GI doctort gives.

After the procedure we would monitor vital signs and assess for bleeding. A large core biopsy had to lie on their right side (kind of to compress the puncture site and prevent bleeding) for two hours. The fine neelde biopsy could sit up and just be monitored for one hour. We wouldn't let anyone eat during that time. Post care instructiions should include no heavy lifting, bending etc for a couple of days and to check with the doctor when to resume things like aspirin.

Usually post procedure the pain is tolerable. Most people just want to eat and go home! If someone has pain after we would first assess for bleeding and then if vital signs etc were ok the doctor would sometimes oreder morphine or percocet and that did the trick.

Sorry this is so wordy I am trying to give you a better picture. Also this is the procedure for where I am, but probably pretty standard.

Thanks for that description, it really helps to know what we are in for. is this something I need to worry about who does it? We were just told to call one of two hospitals and set things up.

We've already taken him in for the coagulation blood tests and a bunch of others, so that is set.

The doctor also mentioned two punctures. Sounds like this is not the usual, at least for where you work.

Thanks again! BTW, I have been to my second yoga class since my PICC was inserted. My instructor is great, helping me figure out how to adapt the poses, and it is just what I need.

If they are doing the biopsy at the hospital, I would think that an interventional radiologist is doing the procedure with the help of an ultrasound tech. You need a doctor familar with an ultrasound macheine, how to use it and has experience doing biopsies. When you call to make the appointment ask who will be doing the biopsy.

I honestly don't know why there would be two punctures, unless the GI doctor means a transjugular or transvenous liver biopsy. This is where they go through the neck vein to access the liver-one puncture through the neck and they go down through the venous system and pucnture the liver. But that is more an inpatient thing and I don't think that is what that GI doctor means.

The only other reason that I could think of is they want to biopsy two different areas of the liver. Maybe if your son has had an ultrasound and the GI doctor read the report and wants two sites done. Or he is counting the local-lidocaine-as a puncture.

Also the hospital might ask you to bring prior ulrasound films and/or reports. And where I am the blood work needs to be less then 30 days old. Make sure you have the results and that what they need is within the normal limits they accept. This saves time and aggravation in case he needs something repeated before the biopsy.

Glad your PICC is working out with yoga. I went to yoga on thursday and was actually able to do some standing postures (without falling down or getting too dizzy) for the first time in months. I think my balance has gotten better on the minocycline.

I am not responsible for any spelling or grammar mistakes now as it is around 2:30am here!

My question would be whether this is really necessary. All of these things have risks and I would want to read up on the pros and cons, maybe do a little search on pubmed.

Also, do you have a copy of the merck manual? I bought a cheap paperback version in the drugstore for under ten bucks. It is also available on-line to search for problems like this and testing procedures.

It is just that whenever anyone suggests any invasive procedure to me, I make sure it is absolutely necessary. Sometimes these docs order things without thinking too much about what is involved.

Lou, of course you are expressing my concerns exactly. They didn't do a liver biopsy when things first came up, because they thought the problem was the hemochromatosis.

However, repeated blood draws bringing his ferritin into low numbers has not kept the liver enzymes down. It has been over a year that they have been elevated. The GI guy says this is serious enough that we need to get a better idea of what is going on.

With the biopsy, they can measure how much iron is in the liver, whether there is fatty infiltration, and whether there is fibrocys(?) or worse. Since blood tests are not clearly telling us what is the cause, he feels we need to look more directly.

It is possible that the hemochromatosis is secondary, rather than primary as originally thought. In that case, we need to find out what is primary.

I wish this wasn't happening while I'm in the middle of herxing on IV, but isn't that how life goes? It seems like something we need to do, especially in a young man with no history of drug use, alcohol, toxic exposure, or any other obvious causes of these liver issues.

Lyme and the other coinfections, as far as I have been able to tell, don't cause iron storage, so it has to be more than that. I don't like it, but I think we may need to do it.

And you are not a cowardly amateur, you have some good advice about pubmed etc.

Riversinger-do you have individual instruction, or group in yoga? Let me know how it goes with your son-to biopsy or not.

Grace

I've been doing yoga for over twenty years. My main study was Iyengar. I love the precision that good Iyengar instructors focus on. I used to be pretty advanced in my practice. Used to be...

I had to stop everything and back up when I had an automobile accident almost ten years ago. That is when I discovered restorative yoga. My first instructor was very good at individualizing her instruction. She's now famous in the yoga DVD world.

Currently I'm taking a group class in restorative yoga with a new instructor. I wouldn't mind having individual instruction, but a class is less expensive. I have enough background that I can do many adjustments to poses myself.

I have found, though, that chronic illness has changed my body, and also changed my ability to perceive it. Having somebody correct my poses is so helpful.

I also love the class atmosphere. We had twentty five people up early on a Sunday for restorative class. Almost too many for the room! Instead of promoting it, we have now made a pact to keep it a secret.

Until I had my PICC inserted, I was thinking I might be able to start a gentle yoga class, one step down from beginners. However, I think I will wait a while on that. Between limitation in arm movements, and the herxes I am getting, I don't think it's time to add a challenge.

What kind of class are you in? I'm still having to do any standing poses holding a wall or chair. That is a big step when you can keep your balance. Congratulations!

I was so inspired when you and Annie talked about the retreats at Kripalu. I'm adding that to my goals for 2005. Maybe not at Kripalu, but there are retreats out here on the west coast as well.

I've even dreamed about training someday as an instructor for the health challenged. Yoga has been one of the things that has kept me going thru everything, and I would love to share that around.

My current teacher thinks if we could get outr political leaders to do one restorative pose a day, it would change the world. From what it does for me, I can believe it.

My Mom had a liver biopsy, but not for lyme.

It was done for the purpose of determining if she had cancer; which it was colon to liver.

Mom came to our house afterwards and was crying really bad. She had the procedure & was alone taking herself to this, etc.

Mom was NEVER one to cry, but she stated this was a total shock to the entire body. I'm sure she was NOT put out.

So off hand I'd recommend being put under. But Grace knows more about that then I do.

I see the biopsy is enough that I would never let him go alone. If anything, he thinks I mother him too much. But it sounds like someone would need to be with in just in case.

Riversinger,
I do Hatha yoga. I am a relative newbie compared to you. I have been doing yoga since November 2001. I also belong to a group class and I know what you mean about keeping it a secret. My class is held in a senoir center so lots of room. About 10-12 people in the class. My instructor used to have her class in gym on Sat. am and always during deep relaxation some guy would drop a big weight on the floor above us!

I also think yoga has keep me going when nothing else could. For me it opened up a whole new way of thinking and caring about the world and people. I try to use earth friendly cleaning products and cosmetics. And I try to be vegetaritan.

If someone cuts me off in the car or whatever I find myself taking deep breaths and letting it go. It really does work most of the time.

I think that is awesome that you want to help others and train to be an insructor to help the health challenged. It is a good goal. And at Kripalu they say they would like all the world leaders to come spend some time there.

There have been quite a few times I have gone to yoga and was only able to do easy pose and some very gentle postures. But that is what is so great, it is not like a competition if you need to rest it is ok. I did attend one yoga class at the gym I belong to, it was not good. It was more like an exercise class, no spirituality or breathwork.

Good luck with your son's biopsy,yes he needs you there. I hope you can find out some answers about what is causing his liver disease. It is much easier to have a plan of action when you know what you are dealing with.

At the time of her biopsy, she kept most of this private, so I didn't even know it was happening until it was over since we both worked full-time.

After that, I was at ever cancer appt. she had.

I talked to him on the phone and he said that they shot him in the middle of the stomach with a novacaine type drug, put a stint or something that looked like it in his stomach,

and then went in with another tool and two took pieces off his liver. He said the most painful part was the cutting of the liver, but that it just felt like he had been punched in the stomach when they did it.

I am sure that they used a camera type instrument of some sort to guide what they were doing, but he does not recall. I think he was too anxious having the procedure done to really pay too too much attention.

They had him sit in the waiting room for 2 hours afterwards to make sure that he was ok.

he went out to eat dinner tonight and is doing fine. He said his stomach doesnt even hurt, and he left with a bandaid on.

Im sure there are different ways to do liver biopsies ( I think, I dunno) but he said it was not all that bad.

That was great! A perspective from the patient's side. Thanks for taking the time to let me know. I have to call tomorrow and see if he has set his appt yet. We'll see how it goes.

I hate to say this but it was the most painful precedure I've ever had done and swore I'd never have it done again. Like someone else said it felt like someone punched me in the stomach.

About 2 years ago I needed another one and they put me to sleep. That's the only way I would have it done. The dr wanted to get a good look at my liver anyway so this was the only way he could.

He even took a picture of it and gave it to me.LOL It was done like a gallbladder surgery with 2 or 3 small incisions. I went home the same day. It is harder to get over than the other way.

The only reason I'm telling you this is because some don't know that they can put you to sleep to do this. I'm also not sure if all drs will or not. Best of luck to your son.

I'd rather have the feedback, even when it isn't good news. That way it can all be taken into account when the decision is made.

I'm sure there are all kinds of reasons why it might be harder for one person than another. The doctor's skill, what is going on with the patient, the equipment available, and probably just plain luck.

I'm sorry it was so hard for you. My son is old enough, he'll make the decision about what he wants, but he needs to know what could happen.

Was your doctor able to tell anything useful from doing the biopsy?

The one I had done a couple of years ago showed I have autoimmune hepatitis. I just had my enzymes checked and they were lower than they have been in years.

I have to really be careful about taking any kind of meds. I've had to stop several because they caused problems.

I hope you get some answers from your son's biopsy and that they are good. I was so scared when I had my first one but it showed nothing so that was a relief.