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PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 6/22/2007 10:54 AM (GMT -7)   
Hi, I haven't been posting for a while.  My husbad Lee has been in the hospital with a whole gammet of problems.  They did a lymph node biopsy thru the liver to get to the lymphs behind it.  They did this because all and i mean all of his lymph nodes are swollen.  They were testing for lymphoma, we got the results over the phone yesterday that it results were negative.  Now, I have to sit and wonder why he's feeling so poorly.  I orginally took him in due to pain in the lower abdomen, and he was unable to make a BM for 4 days, even on the lactulose.  They did a cat-scan and found he was full of BM, so they gave him anema's for days, but in that cat-scan they found that the lymphs were bigger then the last time he had one done.  So, now along with all the other symptoms...night sweats, weight loss, swelling in ankles and abdomen, lathargic, tired we now have the crapty problem.  I don't know about anyone else but I'm sick and tired of taking him to the ER, and Doctors for them to tell me "it's part of liver disease".  WHEN DO I WORRY FOR REAL? 
 
Also, I need to chat with some caregivers out there....I'm so worn down, depressed and tired...when does it get better?
 
Pati

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 6/22/2007 6:18 PM (GMT -7)   
Hi Pati, sorry your going through all this. My husband is on senna tablets to avoid the problem with bms, but your husbands problems sound a little more complex,,,,,,,,maybe time to find a new GI or hepatologist? If you are going to a smaller local hospital,they may not have the specialist to deal with his problems,,so maybe check out a bigger hospital,,,,,,,,as far as things getting better, hon, I am not sure, it hasnt for me. You have to be your own advocate when it comes to YOUR well-being, as much as your husbands, start by asking for help from friends, family, and maybe check into getting some home health care....so you can have a break and just be yourself. It is absolutely necessary to take care of yourself, or both of you will be in bad health,,,,,,,,,
Trish 
Moderator for Hepatitis Forum  
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!"
Life may not be the party we hoped for, but while we are here, we might as well dance:)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2007 10:56 PM (GMT -7)   
Pati, how are things going? You haven't posted since 06/22. I hope you have taken some of Trish's suggestions under consideration.

Please let us know how you are doing!

Hugs,
Connie

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/5/2007 10:39 PM (GMT -7)   
Hello Pati, I am a former caregiver. I can relate to how tired you must be feeling. My journey with my husband lasted for a good 3 years, He was in and out of the hospitals about 20 times the last 2 years not to mention all his doctor's visits and testing that needed to be done. It is very important for you to take care of yourself as well. Because I was too stubborn to ask his family for help, I thought that they should have offered, I developed Fibromyalgia because of all the stress and sleepless nights. Now that my caregiving days are over my Fibro is alot better. So if help is not offered....ASK for it for your own sake. Do small things that make you smile or laugh. With taking care of your husband there is really nothing to smile or laugh about. I would have my granddaughters over when I was feeling low. They would always get me smiling or laughing even if only for a little while. If I got angry I would take a walk to calm down. Or just watch the birds in our yard. I would call my sister to vent and that helped. We are all here for you . Take care...........Pink Grandma

PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 8/1/2007 11:06 AM (GMT -7)   
You know one of the things I read on here is that Liver Disease is very isolating.  Family and Friends stop coming around.  I think I've figured out why that happens.  They don't want to see the person go thru what can be a very dibilating disease.  Lee has gone thru so much.  We are on the transplant list in HUP-Hospital of University of Pennsylvania.  His Liver Dr, is (from what all other Dr's tell me) one of the best!!  His MELD score was a 18, and they are telling me it still could be a while till a transplant.  His symptoms are consitantly changing.  Right now he's experiencing Low Potassium levels from the diuretic's.  He's very weak, tired, cramping in toes, fingers, abdomen, legs.  He was supposed to go for further testing yesterday and couldn't get out of bed. 
 
Last night I was watching TV and looked over at him.  He was "buttoning" his shirt.  He didn't have a shirt on, he was buttoning the blanket like it was a shirt.  He is on lactulose and xiafan for the confusion.  But now this low potassium is also a cause of it.  The fluid in his legs and feet make his legs look like clubs, there are no curves.  I don't know when this will end, it feels like forever!!! 
 
Last month he was in the hospital for 14 days, every lymph node in his body is swollen to the point you can see them thru his skin.  They did a biopsy to test for lymphoma which came back neg.  I'm so sick and tired of hearing the doctors say this is normal for the disease.  I'm at my wits end and I know he is too.
 
just venting...Thank YOU
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