New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/1/2006 7:11 AM (GMT -7)   
Hi everyone! In the past I have posted in the lupus forum, although not for quite a while. Right now I have the diagnosis of SLE with multiple system involvement to include lungs, refractory anemia with severe leukepenia, asthma, goiter, sjorgren's syndrome, raynauld's syndrom, damage from large previous DVT in left leg.
 
Two weeks ago my hemo/oncol. had me have a cat scan. After an appointment last week he said that he was concerned about my liver and spleen due to the results of the scan and lab tests. He is concerned about my liver and spleen. This thursday I am going for a liver/spleen scan. He told me that I have an enlareged liver and cirrosis. He strongly suggested that I see a rheumy, a teaching and research hospital with a great rheumy dept. Monday they had a cancellation, and I went. The docs are questioning my present diagnosis, and are running tons of lab work. I return for a visit in three weeks. They reccommended I stop taking minocycline (for my face break-outs) and increased my plaquenil to 400 mgs.
After doing research on my own, I have discovered that I have many symptoms of liver disease, especially hepatitis. I'm not trying to self-diagnos but I can't ignore what I've read.
 
I am very affraid at this point. I have read many of the postings here and I want to give each and every one of you a big hug. You are all so brave and patient. I hope that I will have similar grace. 
I am a mom of two, Michael who is 8 and has autism. He is in school and doing well, he such an angel with a good sense of humor. He is good in art, computers and math. My older son is in college majoring in psychology. My husband who is a rock and great support is an elementary school music teacher. He is a great care-taker of Michael and me. I like to play my harp. It's very soothing and therapuetic.
I just wanted to introduce myself and I need a good support system. I am needing help in coping with this, I am truely affraid. I also have much to learn.
I hope that you will all have a good day. Hugs to all and thank you for listening. 
                 Blessings and hugs, love, Cynthia 
 
"I have found the paradox that if I love until it hurts, then there is no more pain, only love." Blessed Mother Theresa
 
                                                          
 


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/1/2006 8:00 AM (GMT -7)   

Hi Cynthia,

Welcome and hang in there. I know it's easy to jump to conclusions but it's best on your sanity if you wait until all the scans and tests are completed. It does sound like you have alot on your plate and my heart and prayers go out to you.

There are many causes for liver problems and some are reversible. Once cirrhosis is pressent it's just a matter of controling symptoms and slowing down progression of the illness. Take comfort knowing that you are being seen by a top medical center and rheumotologist. And it's great they got you in right away; somebody is looking out for you.

We are here for you and are glad you found us. Keep us posted and join in all our threads.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/1/2006 8:33 AM (GMT -7)   
Hi Cynthia, Welcome to HW hepatitis forum.Theres not many of us here that have a lot of othe health problems Some of which occured before cirrhosis & some of us afterwards because of liver disease being the underlying cause. There are many types of liver disease caused by many different things. To find cause you need to see your hepatologist. Do you have a hepatologist yet? Sounds like you had a host of health issues before the liver disease. Make sure all you Drs. are working together with the hepatologist. What present work up are your Ruemys doing? They don't know a whole lot about liver that's not their field! You need a hepatologist for that Or at 5the very least a really good GI Specialists. Were you on a lot of meds for you other issues? A lot of meds can cause liver disease too. This is what got my liver. What other risk factors do you have for liver diseases? Don't jump the gun for type without considering all the factors for potential insults on the liver. Which diagnosis are the reumys questioning, certainly not the liver & speen I hope. If the spleen & liver are enlarged then its a given. To diagnose cirrhosis then there must be scar tissue present. These facts leave no room for error. Regardless of the cause the cirrohsis is something you need to take good care of yourself & gain knowledge of proper diet, meds Vitamin dosages etc. from a hepatologist. Only a hepatologist! You my dear already have the patience & grace. Your other disorders gave you that. I'm so glad your husband is very supportive, mine is too. It sounds like you have a nice little family there. Your 8 year old must keep you busy. Cherish them my dear. You've come to the right place for tons of guidance, support & love. We have a lot of knowledgable people here , who are very supportive & you'll find we will all be here for you. As you are a newbie to liver disease , You are a veteran to the forum & I think this will help a great deal in posting , sharing & expressing yourself. We all need help in dealing with cirrhosis honey. It's important for you to know you are not alone in this. You will also find your not alone in being scared with cirrhosis. We all are. That's why we are all able to support each other so well. Hugs to you too sweetie & please know we are all listening. Please feel free to join in any of the posts here. Supporting each other is what its all about. My thoughts & prayer are with you. I hope you have a good day to & once again welcome aboard. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/1/2006 8:37 AM (GMT -7)   
Hi Barb, while many liver diseases can be reversed cirrhosis cannot. However it can be controlled to slow or in some cases halt progression. That is why the care of a hepatologist is critical. Love & Hugs. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/1/2006 12:58 PM (GMT -7)   
Hi Valerie and Barb, Thank you for the warm welcome to the post. I hope that I can be just as supportive to everyone. I'm a good listener, I just don't know that much about liver conditions yet. The rheumies are questioning the SLE diagnosis. They say that many of my systems have auto-immune involvement. Some of the tests they're running are: compr. metab panel, cbc w/diff,sed rate, anti-nuc ab, anti-dna, ssa-ssb anti, rnp-sm anti, compl 3 and 4, vit. d(25), urinalysis, protein tests, thyroid panels and others with abreviations that I don't understand and haven't been able to look up. The rheumies have requested results from liver/spleen scan tommorrow that my hemo/oncol. ordered. It will be difficult to wait for results. I will ask the rheumies to refer me to a hepatologist at their hospital if needed. I will also switch hemo/oncol. there if I find that all of the docs aren't communicating, as I've had that problem to much in the past. This hospital has it's own lab, tests aren't sent out. So that might be a good thing to have all my docs in the same place so there aren't any discrepencies.

My symptoms are extreme joint pain, back pain, muscle pain and weakness, dark yellow urine, bad leg swelling especially in the left one where I had a bad dvt, I can't sleep, extreme dehydration, concentration and memory problems, diahrea and constipatin, double hiatal hernia, cognitive difficulty - it takes me forever to say anything or write anything. During my exam yesterday, I just about went through the roof when they were palpatating my liver. I have other things going on, but I can't remember them at the moment. I have been and still am on a lot of medications. the worst being plaquenil and iron-dextran infusions (5 hours long every 2 1/2 to 3 months) I have bone marrow dysfunction, iron def. anemia( down in the 6's sometimes, blood transfusion 5 times the previous year, and 3 about 3 years ago) It would take to long to mention the other meds I am taking and have taken. I haven't had any alcohol in a year as it reacts with medication and before that maybe a glass of wine once a month. I don't really like the taste of alcohol. I'm not going to self diagnos, but the hemo/oncol has told me last week that my liver is enlarged and that I have cirrosis. My spleen is also involved and it's sore too.

It's all so complicated with so many tests and docs. I'll just take one day at a time. I will be sooo relieved to know exactly what is what. It's the not knowing that is so difficult. Thank you all again for the welcome and support, love Cynthia (I am really tired so I'm going to rest for awhile) The road goes both ways...I will try to be a good supporter too.
                 Blessings and hugs, love, Cynthia 
 
"I have found the paradox that if I love until it hurts, then there is no more pain, only love." Blessed Mother Theresa
 
                                                          
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/1/2006 1:24 PM (GMT -7)   
Hi Cinthia, Often the liver will very badly mess up blood tests really bad. I will explain this after I have a rest. I'm too tired right now to go into detail. I'm sure you will be very supportive too. You sound like a very caring person. Being a good listener is very important here. Can't give or recieve support without that quality. Sounds to me like you are settling right in here & that is very importatant. I think we are as lucky to have to have you here with us based on realizing the road goes both ways. hugs. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/1/2006 2:53 PM (GMT -7)   
Hi Cynthia. As I mentioned Liver Disease can give many false positive tests for auto imune diseases for example I have had my ANA count as high as 180 which indicates lupus but it was determined by my hepatologist that my DNA something or rather did not confirm this. My tests also indicated I had RA but follow up tests denied this fact as well. As it turned out my liver was producing the false readings. However ther is no misdiagnosing cirrhosis.Please use extreme cautions with meds from here on in so as not to cause rapid progression. You do definately need a hepatologist ASAP. There are a few things you can start to do now. Do not take Herbal remadies without making absolutely sure it is one of the rare safe ones. No Green Tea for starters. What else if anything do you take? Do take milk thistle. Drinking 2 cups of coffee a day as this can help prevent liver cancer. Cut back on sodium & B3. do take all the rest of your B vitamins. B3 & Vitamin A are toxic to the liver so should be reduced. Cutting back on sodium will reduce swelling. It's not a matter if you need a hepatologist. You DO need a hepatologist. Only a hepatologist is fully qualified to moniter & put you on proper diet meds etc you need. Also you will need to be monitered by one. This is very important. You can go downhill & progress pretty quickly without one. As I said before there are many causes for liver disease & as it advances cirrhosis. The spleen is involved with cirrhosis & can cause problems. Also you need a hepatologist to watch you for liver failure & complications due to cirrhosis, & encephalopathy. Your reumy cannot do this nor should they assume they can tend to your liver. Your hepatologist will also determine what meds & dosages are correct & safe for you. If he is a good one. I hope this helps you some . My thoughts & prayers are with you.Have you taken part in the other posts here yet? Please join in all the conversations.
Take care. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/1/2006 9:38 PM (GMT -7)   
Hi, Cynthia, and welcome! I am sorry you have so much to deal with health-wise. You are not alone, that's for sure. I agree wholeheartedly with Lerie that you should be seen by a hepatologist. Do you know if they ran a test for hep B and C?
Extra iron is not good for hep C, but it looks like you need it. This would be something a hepatologist could decide on in your particular case.

Please keep us informed of your situation and updated on the outcome of your tests, and how you are doing in general.

Connie

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/2/2006 4:39 AM (GMT -7)   
Welcome Cynthia! I can assure you that the people on the hepatitis forum are wonderful caring people. Every time I read answers to my posts I am greatful to the friends I have made here. I am a Music teacher like your husband. I teach part time in a high school in Sydney, Australia. I play piano as my first instrument but have dabbled in a few others, not the harp though. It is such a beautiful instrument. It must give you so much pleasure. Hang in there and good luck with the results.
Marg

donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 3/2/2006 7:06 PM (GMT -7)   

Welcome Cynthia,

 

Just wanted to Welcome you to this forum. My husband Tony has Hep & Cirrhosis. You have found a wonderfull place for help, love, chat, friends and to share. I have learned alot from my wonderfull circle of friends.

My husband was diagnosed in 2001. He is stable right now, but it has been a roller coaster ride.

He has finally decided to take disabiltiy as of last week. He has been needing to do this a couple of years ago.

You keep coming back, we are here for each other.

Love & Hugs..

My prayers are with you!

donajean

 

 

 

 

 

 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/2/2006 7:49 PM (GMT -7)   

Hello Cynthia,

Welcome! I am my husbands caretaker, he has endstage cirrhosis,HepC, and liver cancer. We are currently going through, the task of getting a transplant. It sounds as if you have already been on a roller coaster with your other diagnosis. I know it is a difficult time for you as well as your family. I also have a son named Michael who is 9 years old. I have 2 daughters also, one graduate from college last year, the other one is going for her teaching degree now. I have a 5 year old grandaughter also.You will learn a lot from our post, chats, as well as having a good support system.  I look forward to hearing from you!!!  We really do care! My Prayers are with you!!! HUGS!

Teresa


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/3/2006 6:43 AM (GMT -7)   
Thank you and God bless you all! Valerie I have taken notes on things that you have said. I will get in to see a hepatologist asap. I hope that everyone will have a good day. Please say "hello" to Gene and Tony and I pray that they will have a good day.
                 Blessings and hugs, love, Cynthia 
 
"I have found the paradox that if I love until it hurts, then there is no more pain, only love." Blessed Mother Theresa
 
                                                          
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/3/2006 9:10 AM (GMT -7)   
Hi Cynthia, any information you need just ask better to be safe than sorry. We are all very happy to help. Especially if it can help slow down progression & help you suffer less than you need to. Teresa's husband Mark is on the transplant list finnally. So please remember everyone in you prayers . Teresa & Mark also have a young son living with having a dad living with cirrhosis so Teresa may be able to help you in that department as you have young children to. Perhaps she'll share how they deal with it. Every one here can help you. Remember you & your husband are not alone in this anymore. My thoughts & prayers are with you. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/4/2006 6:14 AM (GMT -7)   
I will pray for Mark that he will soon receive the transplant. I have already begun praying for everyone on this forum. Thank you for thinking of my husband, Paul. He is a blessing and has been stretched to the max these days. My Michael, is an angel. He does not have alot of autistic symptoms. He is very understanding, emphathetic, and smart. He has a great sense of humor and is good at computors, math and art. He stays close to me when I'm having bad spells and says "love mom" alot. He is doing well in second grade with an aide and our school has a wonderful autistic support teacher. He recieves occupational therapy and speech services. His classroom teacher has a background in special education. It is a blessing to know that Michael is taken care of at school, all the teachers watch out for him, and that he is recieving the services he needs. There is alot to be said about early intervention. I could use Theresa's advice, Michael is very aware of my situation. My older son Matthew is in his 4th yr. at college majoring in psychology. I try to keep his worrying at a minimum. That is I don't tell him everything.


I don't know if I've been tested for hep b and c., but I am going to ask. I also don't if a complete liver panel has been done. Thursday, I had my first liver and spleen scan done. The results are pending. ((((hugs)))to everyone.
                 Blessings and hugs, love, Cynthia 
 
"I have found the paradox that if I love until it hurts, then there is no more pain, only love." Blessed Mother Theresa
 
                                                          
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/4/2006 8:59 AM (GMT -7)   
Hi Cynthia , Your son is Michael? Your not going to believe this so is teresa's son nameed Michael. I have spoken with him 7 he is a sweatheart. Kids certainly do sense when mommy or daddy is having a bad day. I will pray for paul too. My hubby Bruce is my caregiver & he is a saint. We must never forget the spouse , children or other family members. For they go thru even more than the patients & this disease is so terrifying especially for the children. I'm glad to hear your Michael has such a good teacher. That will go along way. Hugs. My thoughts & prayers are with you & your family always. later...
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/4/2006 2:21 PM (GMT -7)   
Cynthia, please let us know the outcome of the scans. Be sure to ask about testing for hep B and C, and also a liver panel.

I had a grandson, Michael, who died 3 years ago at the age of 24, from cancer. ):

Connie

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/7/2006 8:21 AM (GMT -7)   

Hello Cynthia,

I do appreciate your prayers for Mark!! We sure picked out a nice strong name for our son's. My Michael is an angel also, he was truly GOD SENT!! I have had to be very honest with Michael, he is very intelligent and knows when things are not good. He has seen the encephalopathy, that Mark gets and lets me know it. He has really missed his dad, not being able to hunt and play ball with him. He was even trying to separate from Mark, like ignoring his dad and asking his dad to leave his room, because he was making him nervous. He was having anxiety attacks after we would return from the doctor visits in Memphis. The last one I took him with us, he was answering questions for his dad and feeling like a part of the decision process, it did seem to ease his mind. He hasn't had an anxiety attack since the last appointment. Michael has started to open up to his dad more lately. Children do need to know what is happening, it is hard for them to cope with the unknown just as it is for us. The counselors are seeing Michael on schedule a few times a week at the school, he is maintaining his honor roll status. I am a firm believer in giving children the facts, but not all the details.

Valerie has been such a blessing to me, she knows so much about cirrhosis. I keep on educating myself, because it is really a very complex disease. I can not express the importance of a good Hepatologist. It has meant the world to Marks stability. The first part of January, the other doctors were not sure that Mark was going to make it. I now feel they are wrong and they were just over their heads in a disease that absolutely warrants a Hepatologist.

Let us know how you are doing, because we really do care!!

HUGS and PRAYERS to YOU and YOUR FAMILY!!!

Teresa


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/7/2006 8:45 AM (GMT -7)   
Hi Teresa,Thankyou for your kind words, You too have been such a blessing to me,& you also have educated yourself very well & are very knowledgable also. I see you ask your hepatologist a lot of questions & really stay on top of things. Mark is very lucky to have you. Michael is a very brave young man & I'm glad he is now doing better since being a part of things. My heart breaks for all dealing with cirrhosis & all that comes with it,the patients,caregivers & especially the spouses & children for this truly is a family disease. It is the utmost importance to take care of ourselves to slow the progression of this disease down. Regardless of cause.My hat goes off to all the caregivers & children. My thoughts & prayers are with you all. HUGS. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 11:05 PM (GMT -7)
There are a total of 2,733,365 posts in 301,110 threads.
View Active Threads


Who's Online
This forum has 151249 registered members. Please welcome our newest member, John's Mom.
208 Guest(s), 11 Registered Member(s) are currently online.  Details
MDNative, bluelyme, 0311, msOuchie, Hungrydude, roisin86, ChickNorris, Mokes, John's Mom, (Seashell), julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer