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Posted 8/3/2007 1:21 AM (GMT 0)
First let me thank everyone for their kind thoughts and prayers.

I went to my GI doctor this morning and afterwards immediately headed to my parents house to cry on their shoulders and get some comfort.  I have to have a liver biopsy next Tuesday.  The doctor is pretty positive it is Primary Biliary Cirrhosis that I have and they need to do the biopsy to confirm what "stage" the disease is at.  I'm absolutely terrified at this point.  He did confirm that it is an autoimmune disease.  Whether the lupus is damaging my liver or this is a separate disease he doesn't know.  I did make him promise the sedation and he called the Director of Radiology at the hospital (the same director I work for) and he and the radiologist talked about the sedation and stuff and it has been promised that I will be out cold for the procedure which is somewhat of a relief.  It really is scary stuff we all deal with.  I talked to my boss today at work and it turns out her husband has cirrhosis of the liver caused my an autoimmune problem.  She was very sweet and told me to take the time I need next week and not to worry about work.

I also saw the ENT this afternoon about the thrush and he did a culture of my tongue so he can confirm for absolutely certainty if this is thrush I am dealing with or not.  He said with all the meds I have been on for the so called thrush it should have cleared up weeks ago.  So, now I wait for the results of that as well.

I have been crying off and on all day and feel like doing it again right now.  This is all sooooooo frustrating - all the doctors appointments, all the blood tests and other tests, all the fatigue and loss of energy and pain.  I know I am not as bad off as a lot of people here and I pray for all of us every night.  But, gosh darnit, it is just all soooo worrisome and scary and frustrating and tonight I just want to scream and cry and feel sorry for myself.  My Mom said she was going to call my twin sister and other sister and my brother tonight about the liver biopsy next week as "they have a right to know".  I told her I couldn't call and talk to each of them cause I would just go to pieces talking about it with everyone.  I am such an independent person and hate relying on anyone for anything and now with the liver involvement and the biopsy next week I am going to be totally dependent on my family for most everything for a few days.  My Mom said that everyone would want to know cause they all care about me and what is happening and my Mom also said that I have to allow people to care about me.  I am a type of person who is there for anyone when they need help or support and hate asking for it.  Mom said I have taken such good care of the rest of the family in times of sickness that it is time I let others take care of me.  Made me cry just hearing her say that.

I just want it all to GO AWAY.

So, now you are updated on where I am at in this horrible disease process.  I will try to keep you updated about what I find out.  With the sedation next week I will probably be quite out of it for a couple days. 

Posted 8/3/2007 2:17 AM (GMT 0)
Hi Diane:

First off here are some soft gentle ((((hugs)))) for you. I just wanted you to know that I'm praying for you and I wanted you to know that I'm here for you. I understand your feelings of being scared and frustrated. I remember how I felt when I was told I've got cancer.

I agree with your mom left your siblings be there for you. If you feel like you can't discuss it with them, the tell them that it's just to overwhelming for you to talk about now, but you just need them to be there for you. I wish my siblings would discuss things with me, but they are uncomfortable talking about my dying.

Know that we're here for you and remember that you're a strong, positive and wonderful young woman and you can face anything. If I can do anything at all for you please let me know.

Hugs,
Barbara
Posted 8/3/2007 2:20 AM (GMT 0)
((((((((Diane)))))))), It's so hard to hear new like this and be so far away. I wish I could be there for you. Please know I am in spirit and in prayers. Your mom sounds like a pretty wise lady and I'm so glad she is there for you as a support system when you need it the most. It's also comforting to have doctors that you know and trust around to get thru though tough things like this. I'm glad they are going to have you sedated for it. I know tuesday must feel like a year from now at this point. Trying to hang on and wait for yet more things they are doing to your body. This lousey disease is so overwhealming sometimes. I'm glad you came here and shared your fear with us. You know you have a cheering and praying section here. Please don't worry all alone. You need to continue to come here and share your feelings. It does sound like you have a lot of people there who really care about you though. That has to be a real blessing.

If there's anything I can do please let me know. Until than you will continue to be in my thoughts and prayers.

love

carol

Posted 8/3/2007 7:35 AM (GMT 0)
Diane--
I know this news is very upsetting to you but try not to get too upset until all the info is in. I strongly urge you to seek out a hepatologist rather than just a GI guy, because my GI guy was way off base, making things much worse than they were. A hepatologist deals only with diseases of the liver. I don't know if your GI guy is a hepatologist, but the type of biopsy you will be getting is different from the ones I had and is more complex and it would be good for you to have a good hepatologist doing it and looking at the biopsy slides.

The biopsy is somewhat painful and you will need someone to help you in and out of the car when you go home, and please be careful to take somones arm and not to fall. Usually they recommend a day off work but I think three is more appropriate, spending as much time as possible sleeping lying prone so the incisions clot and heal.

PBC means that for some reason bile is backing up due to scarring of your portal ducts, but there can be many reasons for this other than cirrhosis, I think that conclusion is somewhat premature. People due get stones and lesions, and with autoimmune disease, damage can repair itself once the disease is brought under control. There is specific testing for autoimmune hepatitis and they are hopefully doing that for you though pred I believe is one of the standard treatments. Are you quite jaundiced (yellow skin, whites of eyes, yellow under tongue)?

Here is another article and it's important to read to the part about liver transplantation. Unline people with hepatitis and viral diseases, liver transplantation has been successful. Also the progression of this slowly progressing disease is slowed by drugs and by eliminating drugs that are hard on the liver. My dad is 70, has cirrhosis fairly bad among other problems due to glycogen storage disease and he is very active and seldom troubled with anything but occasional fatigue. His labs may be a mess at times, and his liver a mess, but he is very much normal and active and has had this problem for well over twenty years.

I hope you visit the hepatitis site, because those people really know what's up and I hope somehow you can get a second opinion from a good hepatologist in a research facility like Borland-Groover, where they know about the latest techniques, diets, medication trials.

I've had severl GIs telling me I have a year to live, and that has been over several years and it's because they have trouble distinguishing the AI disease from the liver disease. The biopsy will help, People do get things like stones and lesions and inflammatory problems due to medications that can mimic a worse disease. Many times fibrosis is deemed cirrhosis and it is not. Only the biopsy can tell.

I want you to have hope and not be so upset, even though this is rotten news, things can be worse. This PBC, if it is confirmed by biopsy may be mild, and at any rate you will be living with it for a long long time. Thank God they found out. Think of all the old drunks and winos that live forever to ripe old ages and totally trash their livers and have all kinds of really bad problems and they just keep plugging along, probably outliving us all. And alot can happen in medicine in twenty years.

I'm in the 14th year of my twenty years, and though I have liver problems, I'm careful with my medicine, don't drink-- except last year I had one glass of wine for the first time in over 5 years for a special occasion. And I eat what the doc says. Will I have cirrhosis? Yes. Will I have PBC? probably, maybe already do. Will I get liver cancer? 20% chance. I'm just sick of worrying about it and being upset and sad. I've seen so many people live really long with really crappy livers that I just don't take those time frames really seriously.

I don't want to minimize this, but I don't want you to be so upset, at least not yet, because you don't know and it's not good for you to add a lot of stress to the situation. I wish you had a hepatologist that had more experience with liver patients so that he could reassure you more. Liver disease drags on forever, it is slow and you can increase your odds by doing the right things and add time.

I wish so much that this was not happening to you and I can't stress how important it is to find a good hepatologist to help you with this diagnosis, given the AI disease and the possible confusion there. I'm praying that you have only inflammation at this time or maybe just fibrosis that can heal with some changes in your medication and diet and the addition of new medicines to treat the problem. I will pary for you and you are in my thoughts alot. I remember when I heard twenty years, and I was so upset at first, but I got tired of it and decided when someone gave me one year I'd be worried, now if they say that, I just look at my dad and the rest of my relatives that have it that are old as the hills and still very active and relativley healthy and I just take it with a grain of salt.

Welll (((hugs))) and hopes and prayers that somehow you are ok and things are not a tragic and gloomy as the docs are making them out to be. They should be reassuring you, there is treatment, and timeframes are long enough that new advances can be implemented by the timeyou need them. I'm so so sorry you have this and are so upset. You have every right to be. I just feel your pain so much and want so bad for you to feel better. Please take care and relax and have fun if you can. And let us know what is going on with you.

And remember, please have someone help you out of the car and hold their arm until they get you into bed so that you don't fall. I fell after one of my liver biopsies and I fell right on the biopsy site, the edge of the stair smacked it and it was not good. And you give your family a gift by letting them care for you, you are letting them "be family" to you and that is important to them and I'm sure it makes them feel good. Because this autoimmune condition can be genetic, your family members should know about it as well. Its ok to be upset, its just hard for me to hear because i just want to make you well somehow and I can't. Please take care. My thoughts are with you.
http://www.merck.com/mmpe/print/sec03/ch026/ch026c.html
Posted 8/3/2007 2:30 PM (GMT 0)
Diane, I can't tell you how sorry I am that you are going through this and I'm sure it's all very scary. Your mom sounds wonderful and I'm so glad she is there for you and offered to tell your siblings so you don't have to. You will be in my thoughts and prayers. I really hope that whatever they find from the biopsy that it is treatable. Don't ever hesitate to post what you are feeling or going through - we're here for you through all of this. I'll be on vacation when you have your biopsy done, but when I get back, I'll check to see how things went and what the docs found. Try to take good care of yourself and let your family take care of you too. Love and hugs
Posted 8/3/2007 4:00 PM (GMT 0)
((((Diane))))

I hate to hear that you're going through such a tough time and want you to know that I'm also on your cheerleading squad. Your mother sounds like an angel and I'm sure you know how lucky you are to have her. She has given you some wonderful advice.

You may remember that my hubby was very ill earlier this year. He's a man who gives and gives and then gives some more. He's the one everyone can count on if they have any kind of problem, physical or otherwise. But while he was ill he had a great deal of difficulty receiving help. He even felt guilty letting me drive him to and from work. A wise friend told him one day that it's as important to be able to receive as it is to give. My hubby teared up at that, and from then on he allowed us to give him the gift of giving back.

Let your family help you. And know that we're here for you and praying for you. Hang in there Sheryl.

Love,

Pat
Posted 8/3/2007 9:04 PM (GMT 0)

Well I talked to the Radiology department today that will be doing my biopsy and am freaking out more now as the sedation will not be quite as deep sedation as I had the last time.  I have called my GI doc for a script for some Ativan that I can take prior to the actual procedure to hopefully get my anxiety under control.  They called today to get all the pretesting questions answered and told me I will be getting Versed and Fentanyl but not as much as I usually get for procedures.  Hopefully, the GI doc will let me have the Ativan as well.  I've been crying off and on all day today and many times wanted to pick up the phone and call my Mom but didn't want to "burden" her.  I knew I could some here and tell everyone I'm scared to death and very anxious about this now that I know I will not be knocked out completely.  I took a Xanax and a Lunesta at 3:30 this afternoon (usually take at about 9:00 at night) but am hoping by the time I get done working at 4:30 it will kick in (thankfully I work from home and my bed is 5 feet from where I work) and I sleep the afternoon and evening away and keep my mind sleeping instead of high anxiety and crying.  I know I shouldn't have done this but the only way I know how to cope with the stress and anxiety is by sleeping.  I made a comment to my Mom about just sleeping through the next 4 days until the test and she said you can't do that.  I'm gonna try as much as possible to do that very thing.  It seems all I want to do is lay in bed anyway.  This is all very "emotionally" exhausting.

When I read your posts I was crying because of all the compassion and caring and thinking about me that you are all doing.  If I didn't have you all to confide in I don't know what I would do.  I know, I should talk to my family, but they are worried enough already and I don't want to burden them with my constant crying.  Thanks soo much for being here for me.  I can't express in words how much the comfort you are providing means to me.

Posted 8/3/2007 11:26 PM (GMT 0)
Diane,

Your post made me sad. I'm a mom to grown kids and if I thought my daughter was going through the pain you're in but wouldn't call me to unload, I think I might wonder what I had done wrong. That's what we mothers are here for Diane. I can't speak for your mom, but my kids are grown and knowing every now and then that they still need me like they did when they were little makes my heart swell up. And there's something about being a mom - we have this intrinsic need to nurture and my money's on it that your mom would want to be able to nurture you right now.

Call her Diane.

Hey girl, we're here for you too and I'm glad you know that, but we can't put our arms around you and hold you like she can.

Here's a (((((hug))))) from someone else's mom. Keep your chin up.
Posted 8/4/2007 12:49 AM (GMT 0)
Hi Diane:

Honey I just read your post and I wanted you to know, you're a strong woman and you're gonna be able to handle this. We're here for you and we understand. Do like Pat suggested and call your Mom let her be there for you. I understand the feeling that we're a "burden" to our families. You know what though, WE'RE NOT BURDENS TO THEM, they love us and feel helpless cause they can't do anything.

Honey you know my situation, I understand your anxiety. Please, please be careful mixing your meds together like that. I'd hate for anything to happen to you. I know this seems glib in saying trying listening to music and doing deep breathing. I understand that you've got anxiety and are stressed out. My daughter whose only 14 suffers from anxiety disorder and we do not treat her with medication. I've found that doing aromatherapy, relaxation music and deep breathing helps her a lot.

Know that you come here anytime and we'll be here for you. Everything is going to be fine, and I know you're thinking, "well what if it's really bad news," you'll be able to handle whatever comes. I've been given some really poor predictions for my life, and I thought my world stopped moving. I've found though, that with the help of friends and family, my world is still moving. I know that I may slip at times accepting whats happening with me, but I ultimately will be able to handle it to the very end.

Just some gentle hugs (((hugs))) for you and know I'm praying for you to be strong.

Love,
Barb
Posted 8/4/2007 3:59 AM (GMT 0)
Diane, I'm sending you more ((((hugs)))). I wish you didn't have to go through this. I know that several of the moms here have already told you something similar, but speaking as a mom, I would never consider it a burden for one of my kids to come to me if they were in crisis, no matter how bad it was. I would want them to be able to come to me about anything. Even though your mom is worried about you I can almost guarantee that she wants to be there for you through all of this. Sometimes no matter how old you are, there are times in life when you just want your mom and yours sounds like she'll be there for you. We're here for you too and there is no way you could ever be a burden to us. I hope you do talk to your doc(s) about the meds and maybe they can adjust things for you over the next few days to help with your anxiety until you have your biopsy. You'll be in my thoughts and I'll pray that the biopsy goes as well as it can go and that you'll be as comfortable as possible. Hang in there - we're here for you. Love and hugs
Posted 8/4/2007 5:31 AM (GMT 0)
Diane, please try not to get too worried yet. There's plenty of time for that after they get these tests done and you don't want your AI disease to get worse. You know you need to be relaxed for these procedures so that they do a good job, and right now, you don't know how bad it really is. Is your doc a hepatologist? This is important, there is a big difference between a gi doc who treats people with liver disease and a true hepatologist that specializes in the liver. I hopw that your docs are reassuring you as they should be and I want to reassure you that often with liver problems they are not as bad as they may seem at first and the liver does heal all the time, if you are young, this is to your benefit. I'm sorry you have to go through all this and will be wishing the best for you. If I could take away your worry and pain and illness, I would. All I can say is I've been living with problems for a long time now and it just drags out for a long long long long time with very mild symptoms most of the time. I hope this calms you down some. Stress is the worst thing. And as for your family, they need to be there to reassure you and comfort you during this scary time and it is good if you would be genereous enough to allow them to do this for you, it will help you and your family understand what is happening with you and help you get some of the stress out, but don't keep on stressing, it's not a death sentence, and the more upset you get you can work yourself into a real depression or anxiety problem. Your fear and bummed out feeling is totally understandable, just don't let it take over permanently. You need to be able to communicate with your docs and that's hard if you are really upset. You can get through this and you will get used to the fact that unfortunately it is just one more thing you will have to live with, but likely for a long long long time. Take care and best wishes and good thoughts your way. Please keep us updated.
Posted 8/6/2007 3:44 AM (GMT 0)
Diane, My thoughts and prayers are with you! Please take extra good care of yourself!
Posted 8/6/2007 8:11 PM (GMT 0)
Diane, kind of emotional about this and worried for you. I am glad they are taking good care of you and looking into the cause. Your Mom sounds like great person and you should let someone take care of you from time to time. It is only fair :) Not good with that stuff either ruins the bravado I got going on. Rather be the healer not the healee, but we all have to take turns I guess. Please let us know how you make out. Until then it sounds like you are in good hands. I'm praying for the best for you - Hugs - Kristin
Posted 8/7/2007 12:48 AM (GMT 0)
(((((((Diane)))))))))), My thoughts and prayers will be with you tomorrow. I hope you can find some peace of mind. I know you are afraid but you have a wonderful family and a huge support system. That is half of the battle. When you are up to talking please let us know how everything goes. Hang in there
praying and sending good vibes your way
love
carol
Posted 8/10/2007 12:45 PM (GMT 0)
Hi Diane!

I saw your post and had to reply (even though it is a tad old and I guess by now, you've had your biopsy). 

I too had one of those too and I was scared - more afraid than I'd been for anything I'd gone through at that point... I was up early that day and freaking out completely.  I too took something but there was a delay at the hospital and by the time they actually got to me, the drug was wearing off... figures eh?  Then the woman gets me all pumped up and she did a practice run!!! OMG, I was ready to kill... anyway, I got through it and I got through the hepatitus and I'm fine on that front now....

How did it go?

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