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lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/2/2008 4:00 AM (GMT -7)   
rolleyes   rolleyes
     What next? I am so confusedl.  I have survived 2 years with ESLD . No symptoms other than minor swelling on my ankles. Partly from the surgery"s on ny feet,  I also have occasional pain under my right rib. (that has been on since I had my gallbladder removed over 20 years ago. I"m only taking spironolactone and lactulose. What next." They tried to kill me with the Dobutomine stress test but fortunately failed. smilewinkgrin smilewinkgrin smilewinkgrin
     I had a terrible experience. Will never have one done again . No matter what anyone says.
     Know the question? Do I suddenly just get all the ugly symptoms , or just go into a coma. I am on the transplant list. Still stable. But I am very confused about accepting someone elses liver. No one can give me a prognosis and I can only think about that green reaper who has been trying to get closer with every night mare I have had since I was a little girl. I am now      having to take meds just to get a few hours of slee. I'm so very tired of all this. I feel like Jobe ;pst om tje desert. When will got realize my shorlder can cary no more,  (Babble Babble I'M just tired. Thanks for istining.  june

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 12/2/2008 9:58 AM (GMT -7)   

Dear June,

I love your name.   I have an Aunt June whom I love and like dearly!    She turned 80 this past year and is the only living aunt I have left.   With that I just want to tell you that I appreciate the courage it must take to face each day with this disease.   My dear friend suffers many of the later symptoms, encephalopathy, etc. but she still beats me at Scrabble and keeps her sense of humor.   I do believe she shows me her best side when I see her.  Some days when we talk she is hardly verbal.   I know that she perks up when I come over.   We both are in new territory here.   I guess all of us on this forum are in many ways.   Your post touched my heart and I wanted to tell you that.   We are all a force in these writings.   For good, I hope.   Take care and keep writing.   I believe it helps to put some of these thoughts down to share with each other.  

Sincerely,

Joan

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/2/2008 11:42 AM (GMT -7)   

June, you do sound tired, and upset by your stress test experience.  I have been having terrible problems getting to sleep at a decent time.  My doctor (who has never wanted to prescribe sleeping aids) suggested melatonin (an OTC supplement.)  I thought she was nuts, but decided to try it anyway when I found the 3 mg version for $4 at Winn Dixie (Walgreen's was much more expensive.)  Amazingly, it works!  I am sleeping better than I have in a long time, though still not getting to sleep as early as I'd like.  I just forget to take the med until late.  I get engrossed online and time flies by.  Guess I'll have to set an alarm for 10 PM to take the med.  Of course, I'll probably forget why the alarm is going off!  LOL!

You really are so lucky to be stable for so long. 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/2/2008 5:02 PM (GMT -7)   
June, I am so sorry that you are still having so much trouble sleeping. I know that this is a very scary disease. My husband is now having anxiety attacks. He hasn't been able to sleep well and when he does fall asleep he wakes up afraid. Don't give up June. I am still praying.
Butterflythree
 
There is always hope!


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/3/2008 3:51 AM (GMT -7)   
Thanks Joan and Connie.
Sometimes I just neet to vent. Since family is not near by and my husband I'm sure is tired of seeing me tired. I finally took an Ambion last night so I could sleep. But I had strange dreams and woke up with a horrible head ache and an upset stomach. My husband asked me to take a tablespoon more lactulose, guess I'm in LA LA land again. Plus he said I am snooring when I sleep. So I probably have sleep aphnea to top it all off. I did try the melatonin. My husband has plenty of that , since part of our body chemistry. It didn't really work for me at the time. I might give it a try again.
Connie How are you doing. You are always around and I know you care.

Post Edited (june17) : 12/3/2008 4:23:12 AM (GMT-7)


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 12/3/2008 4:03 AM (GMT -7)   
June

I completely understand about needing to vent on occassion and I know that everyone else here does too. Dealing with the disease and all the complications gets to us all at times. I hope you are able to sleep tonight. Ambien does produce odd side effects in some people, you might talk with your doctor if the headaches continue with it. There are several other sleep meds that might work better for you. May you have pleasant dreams.

Lucy

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/3/2008 4:19 AM (GMT -7)   
Lucy I don't think it was the Ambien that gave me the headache. I think it was the dreams It was a very stressful dream . If you believe a dream can be stressfull.
You haven't mentioned how you've been. They are still checking me for Autoimmune since I have a sister who has lupus and they cant figure out how I got to this point without any type of symptoms. So they don't know how to treat me. All I've been given is the lactulose, spiranolactone, and zink sulfate.
Just wish I could go one week without seeing a doctor of some type. I thought I was free this week ,but it turned out I was due for a dental cleaning. It was OK. Next week it's off to see a new Endocrinolgist, since the one I saw last has left town. Let me know what's up with you. Curious about how they treat AIH. june

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 12/3/2008 9:25 AM (GMT -7)   
Dear June,
 
Just wanted to "second" what Connie said about melatonin.   I've taken it for years and just recently convinced my friend to start taking it since she has trouble with nights and days getting mixed up for sleep.   She's slept 4 nights in a row now.  She too was taking prescript sleep pills, but didn't like how they make her feel and now is using melatonin (3mg) instead.   Hope it works this time for you.
 
Joan

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/3/2008 11:37 AM (GMT -7)   

June, I am doing fine.  Thanks for asking.  I have gotten a break from medical appts. and am home most of the time.  Gives me more time to devote to the forum.  It is cold here now and I can't handle the cold.  Sometimes I won't go out for 3 days at a time.  Right now, I'm waiting for transportation to go have my nails done.  My aunt in Sarasota is very ill and not expected to make it, so I'm flying down to see her on Fri.  Will be back Mon. afternoon.  I just want to say my goodbyes now, instead of at a funeral.

I do have a dermatology appt. at Mayo next week, which I've rescheduled twice.  I just want to get a skin screening.  The following week, I have a mammogram scheduled, but may change that if it's still cold.  Otherwise, I have no blood work, scans, or hepatology f/u until March.  I will know then how I'm doing for sure.

The melatonin comes in 1 mg, 3 mg, and 5 mg strength.  Do you know what you took previously?  If less than 5 mg, perhaps you need something stronger.  I got the 3 mg, as that's all that Winn Dixie had.  I have to take a Flexeril with it for it to work.

Van is here.  More later.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


itsme
Regular Member


Date Joined Mar 2007
Total Posts : 44
   Posted 12/3/2008 4:36 PM (GMT -7)   

Hi June,

I have had AIH for 2 years now.  It is treated with Prednisone and usually with another immune suppresent. (spelling ?)

I was started on 60 mg of pred, and weaned down to 5mg.  Now I am taking Imuran, and will be weaned off the pred.

I too never had any symptons untill I turned yellow, now I have severe liver damage.  It is a roller coaster ride for sure.

This is a great place to vent and ask questions.

Regards,

Rhonda

 

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/3/2008 6:42 PM (GMT -7)   
June I sure hope you get some good sleep soon. I took Ambien for over a year after my husband died. In fact I just stopped taking it about a month ago. It was the lowest dosage and it didn't seem to bother me with bad dreams or anything really. I guess I was lucky.

Let us know if you get the melatonin and how it works for you.

Have a good night.........thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 12/4/2008 4:01 AM (GMT -7)   
June

Just wanted you to know that things are going ok for right now, but certainly understand about all the doc appointments. I have a cat-scan scheduled for this coming Monday due to the pain I have been experiencing recently and frequent nose bleeds. I never experienced nose bleeds as a child but recently I can just sit here and it flows. I am keeping my fingers crossed that things have at least remained the same and not worsened. I completely understand your frustration at not knowing the cause of your problems. It took over 2 years for me to get my diagnosis of AIH as I didn't have all the markers. When I finally was referred to a wonderful Hepatologist at Cleveland Clinic (and of course more tests) he decided to try me on prednisone even without having all the indicators. In about three months my enzymes were down more than they had been in seveal years. Maybe you can ask your doctor to try it and see if it works. I also take imuran which has helped reduce the amount of pred that I take.
I hope you get some rest today and keep us posted.

Lucy

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/8/2008 4:13 AM (GMT -7)   
rolleyes  Thanks All :
For posts. I have not yet tried the melatonin again. I am going to try and stay away from sleep meds for a while. My short term memmory is ***missing***???? Just broke down and cried today, when my husband reminded me about a paper I had already read two days ago, and couldn't remember a thing about it. Only my little dog to talk to. No one else cares to hear me. Or I just don't want to burden anyone with my poor me story. All they see is what is on the outside. You all are the only ones that understand what it really feels like to know the feeling of """Yep your going to get run over by a Big Purple Truck "" " But we don't know when ? where? or who ? rolleyes rolleyes
  
    Connie , sorry about your aunt, your right though , Seeing her now is best. I'm canceling my foot app. tomorrow . I'll just wait and hope the swelling comes down a little more befor I go again. Why bother going to hear him say "Yes it is still a bit swollen , come back in two weeks for ???  I do intend to keep my app. on Tue. with the endocrinologyst , I need the paper work for the reclast infusion. My three month labs are due again in Jan. Then around April back for another check up at Mayo.
 
     Everyone!!! I have to say I surely do alot of praying these days. For everyone.
Thanks Again For Being--Here--There--or Where Ever. idea idea   june

Post Edited (june17) : 12/8/2008 4:32:23 AM (GMT-7)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/8/2008 6:40 PM (GMT -7)   
June, You take it easy. If am so glad you come here to get it all out. We all need someone to talk to and understand us. I can only imagine how scary it is living with this disease. I have seen and heard the fear in my husband. I only wish that I could take it all away. It scares me too, but I know it is a different kind of fear for me than it is for you and my husband.

I continue to pray for you.
Butterflythree
 
There is always hope!

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