Newbie

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. 

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....

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.

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....

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

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

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....

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...

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