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Going to U of M tomorrow

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Posted 9/22/2008 10:17 PM (GMT 0)
 Hi all,

Well, tomorrow is the big day.  My biospsy results in May showed severe liver damage, and was told I would need a transplant within 5 years.  (I guess the Dr. has a crystal ball)

When he told me that it was like getting run over by a semi.  I was in shock for days, and very upset for months.  But I must say that after reading all the posts, especially Labunna's and her hubbies transplant I began to feel like I could handle all of this.  Everyone here has been wonderful, I don't post much, but I do read the posts several times a day.  God bless you all.

I am nervous and anxious about tomorrow, I am seeing the head of he Hepatology dept. it took months to get this appt.  I am bringing all my records and we will see what he has to say.  I assume he will want to run blood tests, and perhaps even want to schedule another biopsy, as the other Dr was puzzled on how my liver can be so damaged after 1 1/2 years.

It all seems so unreal, as right now I feel relatively ok, I have changed by eating habits, Organic only, stay away from red meat, and sugar and prosessed foods.  Even drank wheat grass for a while.

Anyway,  I can't wait until tomorrow is over.

Rhonda

Posted 9/22/2008 11:33 PM (GMT 0)

Rhonda, there is nothing to be nervous about.  They will do a lot of tests, I'm sure, and you will get answers.  Your best weapon in this fight against liver disease is knowledge.  I applaud your change in diet.  That will help a lot!

Please let us know how your appt. goes.

Hugs,

Connie

Posted 9/23/2008 2:23 PM (GMT 0)
Rhoda,

You are in good hands the U of M is known to be a great place for Heptology & transplants. I too applaud your diet, its not easy to make such a dramatic change & shows you are really tenacious. Keep us unformed.

Best,
Cary
Posted 9/23/2008 7:56 PM (GMT 0)
Thinking of you Rhonda..........hope your appointment goes well.   Keep us posted.

Thoughts and prayers.............

Posted 9/24/2008 1:47 AM (GMT 0)
Hi Rhonda, I hope your appointment went well. You will be in my prayers.
Posted 9/24/2008 5:17 AM (GMT 0)
Hi Rhonda

I hope that things go well for you and please let us know about our your results. Will keep you in my thoughts and prayers.

Lucy
Posted 9/24/2008 3:44 PM (GMT 0)

Hi all,

Went to UM yesterday.   Saw the former head of the Hepatology dept.

He reviewed my records, biopsy results, blood work results, and checked my hands and eyes and said I don't have chirosis, and does not agree with the other Dr. about needing a transplant.  He said I definately have  AIH , and he does not accept the Chronic Fatigue syndrome diagnosis over 20 years ago.  He feels it was AIH all along.

 He wants to see the actual slides from the biopsy, and wants me to try Imuran again, I had tried it before but I felt like crap, but that  could have been from being temporarily drug induced diabetic which was not under control at the time.

I am not diabetic now. Everything went back to normal with the reduction of the pred.

I am obviously very relieved, but still don't know what to think..

I have 2 totally different opinions. 

I feel ok, tired sometimes, but generally ok. I have energy, I am not yellow.

Going to get more blood drawn today, and start Imuran tomorrow, blood will be checked monthly, and Ultrasound every 6 months.

I am just numb from over the past 1 1/2 years from almost dying, as my liver was shutting down when I first got sick.  To going thru hell for over a year, then being told I need a liver, and now feeling ok, and being told I don't need al liver.  Does this make sense to anyone.... I just want to cry and its a mixture of tears of joy, to sadness...

Rhonda

Posted 9/24/2008 6:54 PM (GMT 0)
Hi Rhonda

It well may be that what they thought was chronic fatigue was AIH. From what I have read on this disease it seems to come begin somewhere in your twenties although most of us are not lucky enough to have it caught at that time, so it may be possible that they could have misdiagnosised. My doctor at Cleveland Clinic also wanted the lab there to review my slides of all the biopsy's I have done here. I personally think two sets of eyes are better than one so I believe that is a good thing for you. I know origianally when I was sent to Cleveland Clinic to my hepatologist I was told here by my gastro doc that "i was dying and that he didn't understand what was going on". When I first met my hepatologist I didn't get any of that. I think sometimes it is just the difference in what doctors are used to seeing. I know when I looked around myself in the waiting room the first time in Cleveland I realized I was not where some of those people were.
I do take imuran and can tell you that it took a month maybe two before I felt anything positive from it. Initially I felt like I had the flu achy all the time, tired (even more than I was) and I lost hair. However it takes a month or two to get into your system and start seeing improvements, but call your hepatologist if you have any problems. They should be able to tell you what is normal and what could be a dangerous reaction. Monthly blood checks on imuran are normal for the first six months at least they were for me.
I am thrilled that you don't have cirrhosis. Mine went on two long and I didnt' get quite that lucky. I think that your appointment was positive, but I do understand how all the conflicting things can really get to you.
Will keep youi in my thoughts and prayers.

Lucy
Posted 9/24/2008 11:36 PM (GMT 0)

Hi Rhonda,

I just read your posts.  Glad to hear things may be better than previously thought!  I didn't have much trouble with the imuran when I initially started.  They started my imuran only once I was stable.  I had originally started on 40mg of pred.  A week later they started 500mg of CellCept BID.  Two weeks after that, increased CellCept to 750 BID.  Only once my pred was decreased to 7.5mg (3 months later) did I start the imuran.  Since it takes 2 months to fully kick in, I piggy-backed the 2 immunosuppressants then dropped the CellCept.  I really had minimal effects from the Imuran...hair thinning was probably the worst...some minor nausea but it all went away once my body got used to it.  I was given the OK yesterday to start weaning off the pred completely so this morning was my first morning at 100mg of the Imuran.  I'll stay on that for 2 weeks to make sure I tolerate the higher dose and then drop 1mg at a time of the pred.

I'll let you know if the higher Imuran causes issues!

I think it's great that you got a second opinion!  Also, for all you AIH folks, there's a good Yahoo group out there too of only AIH affected people.  This site is fab too...don't get me wrong...it's why I still come here!

Posted 9/25/2008 9:20 AM (GMT 0)
Rhonda:
Hope you are one of those lucky persons who has been misdiagnosed. I know what you are going through as I have also been battling with the same fears for a year and a half. They tell me I am at end stage, my ammonia level fluctuates from less than 14 -165. I take lactulose for that. I have been placed on the transplant list with a MELD score of 10 . Will find out next week if anything has changed. So far I am able to adjust the lactulose myself. I have not been placed on any other medications. I wasen't even told about the diet . I learned that from reading. Plus this forum. "THANK ALL". Will pray for good results for you. june
Posted 9/25/2008 1:36 PM (GMT 0)
Hi Rhonda, That is great news. I will keep praying that you will be able to get the disease under control.
Posted 9/26/2008 4:22 AM (GMT 0)

Rhonda, it sounds like you saw a really good hepatologist, so I'd take his word over the previous doc.  It's wonderful that you have not progressed to cirrhosis!  You can get control of the AIH with no further damage, which is a blessing.

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