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exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/25/2008 10:13 AM (GMT -7)   
Hi Everyone  I already miss Shelly1  I have a new one for all of you and hopefully someone else has had it.  Maybe Pink Grandma can shed some light.  Jerry has had a small knot on the back of his head.  It hurt to even touch.  I could never seen anything but it hurt him to even try and move his hair around to look.  Last night he squeezed it and clear liquid came out!  A lot of clear liquid.  Now today the back of his head feels like a pickle!  The knots are everywhere and they are all very sensitive.  I googled his medication and can't see any side effects like that.  Just wondering if anyone else has had that.  He still is very sore in the ribs from his fall.  We go to Vanderbilt on Wed for a 90 day check up.  His feet are now starting to swell.  That is something he has never had.  A lot of acites but no swelling in the feet.  I have been watching for it.  It is pitting also. With a MELD of 17 I'm sure it was just a matter of time for these symptoms to surface.  He has a lot of trouble sleeping at night.  Which is new but I have read a lot of you have that.  I finally think I got his ammonia level down some.  His appetite is good now that the vomiting has stopped.  Just has trouple keeping awake in between bites.  Hope every one is have a great holiday.
 
JoAnn

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/25/2008 3:23 PM (GMT -7)   

JoAnn, did Jerry hit his head when he fell?  Any other head trauma that you can think of?  Otherwise, I just don't know.  Be sure to mention it at the Wed. appt.

Hugs,

Connie


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/25/2008 8:58 PM (GMT -7)   
Hello JoAnn, Hope everythings okay tonight. I don't know what's causing the little bumps. My husbands didn't experience any of that . Are they like blisters? Was he out in the sun for a long period of time. I know my husband would always want to go lay in the sun a lot. Especially when his ammonia levels were up. Write down all your questions for Vanderbuilt. And make sure that they take the time to answer them all.

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.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/25/2008 9:19 PM (GMT -7)   

Pink Grandma  The problem is I can't see anything I can just feel them.  But I don't think they are blisters.  I was a little concerned that it might be shingles!  But I googled  it and I don't think that is what it is.  I just don't know.  I just hate it when I can't figure things out myself.  His feet have also starting swelling.  I knew that was coming.  He has been vomit free since last Sunday and he just started vomiting again.  Absolutely no reason.  Isn't that crazy.  Thats was is so horrible about this disease.  I hate it.  I try so hard to be on top of things.  There is never a logical reason why the vomiting comes and goes.  Its so crazy!  I'm sure you know what I mean.  But I never hear anyone else complain about the vomiting.  Did your husband vomit a lot.  I need to quit complainting and just accept this horrible disease.  Also I need to get some sleep.  Thanks again for all your help.  The Forum moterator has to keep you really busy.  When do you have time for yourself?  Thanks again

 

JoAnn


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/25/2008 9:31 PM (GMT -7)   
JoAnn that is a big yes......He vomited a lot because of the lactolose. But you are right. He could go for a few days without vomiting and then it started up again. Maybe it had to do with what he ate or drank that didn't mix to well with the lactolose.

JoAnn don't be concerned about your complaining. That's what we are here for. So complain all you want. YOU ARE ENTITLED! And anyone else who has it or is dealing with this ugly disease. I know that I really didn't have anyone to talk to about it until I found HealingWell. Just to know that I wasn't alone in that horrible journey.... got me through it. So you complain all you want.

Have a good night...........
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.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/25/2008 9:46 PM (GMT -7)   
Hi JoAnn,
It's been almost 3 days since he fell in the yard. He laid there for a while, didn't he? You know TN & KY critters. It could be ant bites or chiggers. I know chiggers usually only get you around the waist or panty line, but they can get you anywhere. It could also be flea bites or seed ticks . Go out to where he fell tomorrow and look closely at the ground where he fell. You might find an ant bed close by. |If he starts to itch, that may be all it is. Hope so

Carol
 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/25/2008 9:52 PM (GMT -7)   

Hi Carol  You could be right we never even thought of that.  He fell in one of our flower beds we had dug everything out of the bed and was getting ready to plant new schrubs.  I think we still need to tell Vandy when we go on Wed.  I think I get scared any little thing will ruin his chances for a transplant.  I know its crazy.  Also he isn't washing his hair as much because its so dry anyway I'm thinking it might be clogged pores or something.  I think I'm just searching for something that is not liver related.  Who know what it could be.  I need to get some sleep.  I hope your visit from your daughter is going good.  How is Terry these days.  I hope he's good and you guys have had some quality time.  Keep in touch and have a good Monday.

 

JoAnn


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/25/2008 9:57 PM (GMT -7)   
Terry is doing better these past few days. He even went out and washed his car this am. We went to the aquariam and out to dinner with family. He crashed when we got home and is now in bed. I think I will put this story on my thresd. I can't believe how well he is doing!
 


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/30/2008 9:58 AM (GMT -7)   
JoAnn, hi honey. I hope by now Jerry has seen the Dr and you have resolved the issue with Jerry's head. The symptoms you described are unusual to say the least. Please let us know what the Dr has said OK? I would elaborate more but by now you probably already have the answers.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/30/2008 8:38 PM (GMT -7)   

Hi Shelly so glad to have you back.  Well, Tuesday we saw two Dr.  Gi First then he made an appt immediatley and sent us to a Dermatologist.  By the time we saw the GI I had it figured out but was hoping I was wrong.  He has Shingles.  Yep, full blown.  By the time we got to the Dermatologist the blisters were dripping down the back of his neck.  By the time we got home that late afternoon it had spread to his cheek, ear, chin, under the chin and chest.  Both Dr. were puzzled by the pattern.  He did not want a Dermatologist to give him any pain meds for fear she wasn't familiar with liver disease and it could harm his liver more.  That was Tues.  We had an appt on Wed at Vanderbilt.  I'm here to tell you by that time he had no problems taking pain meds.  He has never complained only once did he say his head felt like it was falling off.  Today he had to be drained because he was in a lot of pain from fluid.  He made it 4 weeks this time.  But they only got 3.7 liters which isn't much for him.  Seems his bowels were in the way so its likely he has at least 3 more liters in there.  He has perked up some today even have being drained.  The Dr. called from Vanderbilt to check on him.  They don't usually react much because they see really sick people but they really felt bad for him.  So that is the update on Jerry.  I'm sure you read my post about him falling.  On the positive side we spent two weeks at our house at the beach.  That was wonderful.  I pray that you pain will weaken and your memories of your brother will make your heart feel better.

JoAnn


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/31/2008 11:33 AM (GMT -7)   
JoAnn, I read your post and I feel so sorry for him. I wondered if it might be shingles when you said it was leaking fluid. Shingles are so painful and to have them on the head and face must be pure torture for him. Shingles follow a nerve pathway so it was the pathway of his face and head (normally just one side-I have never seen it any other way). It is far more common to see them on the chest, abdomen, or back. I think anyone who has seen shingles or had them will feel for Jerry right now. The darn virus lays dormant for years then rears its ugly head!!!!!!!!! The concern for Jerry is that his immune system is already compromised and it will be more difficult for him to fight the virus. That is probably why the Vandi Dr called to check on him. They are concerned about how this will affect him. He may complain of any number of descriptions of the pain and it affects everyone differently. It can vary in ranges from itching and dull aches to extreme pains that shoot thru his face and head. These are typical descriptions with any number of other complaints. It will be difficult for him to get any relief from it either-thats the hardest to deal with for you both I think. It will probably affect his eating and sleeping too. Once they complain of pain it's about 3-4 days before they get the rash that goes along with it. The rash can last up to abot 10-12 days. Then the rash turns into scabs that last for 2-3 weeks. That is the normal course of the virus. PLEASE PLEASE PLEASE tell Jerry not to scratch the area. I know it itches like the devil but there can be other complications if he does. Especially with the rash on his face. If it is near his eyes and he scratches them it could scar his eye and cause blindness or vision loss. Did they put him on an antiviral medication? Anti itch cream or pill? If you see the rash spreading or he developes a high fever then take him in right away.Keep us posted and GOD Bless.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/31/2008 11:55 AM (GMT -7)   

Hi Shelly   Yes the Dr. has him on Valtrex 1GM three times daily for 7 days.  They told us at Vandy it would be a slow start but its a very good drug.  Also 100 g clobetasol propionate Foam .5%.  What ever that means.  Cost of $360.00 but I think it caused it to scab sooner.  Still some oozing but he is so out of it today I don't think he would know if it itched or not.  I have really poured the lactalose down him thinking he could have an ammonia problem but now I think its just a combo of everything his poor body has to deal with.  I almost took him to the hospital just because I am having a hard time trying not to panic.  He can barely talk or walk.  No fever, good appatite.  No brain fog I think just weak.  So we are still here just waiting it out.  I just made him a smoothie with Soy Protein.  I just can't get him to stay awake long enough to drink it.  He lives on fresh fruit that has been frozen.  I think its just refreshing to him.  No new shingles since Wed.  I see that as a good sign.  As crazy as I'm feeling I think I need some of his lactalose!  I think if we can get through the weekend he will be home free.  That is until something else starts up.  I'm concerned about his weight because he's living on fresh fruit but one battle at a time.  Thanks so much for the info in the middle of your grief.

JoAnn


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/31/2008 1:50 PM (GMT -7)   
JoAnn, did you read my post on Megace? It works really well to increase the appetite and it sounds like Jerry could benefit from that. Just a thought.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/31/2008 8:25 PM (GMT -7)   
JoAnn,
What an awful thing for Jerry to be going through. Now you see why I don't like to give people any advice. I don't know anything. I've never known anyone that had shingles, but I googled it to learn more about it. How horrible he must be feeling now. How are you holding up?

Carol
 


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 5/31/2008 11:56 PM (GMT -7)   
Hi JoAnn,

How are you doing? It must be so trying. It seems a good sign that you're writing about panic instead of simply panicking. I don't really have anything to say other than to let you know I'm thinking of you and Jerry. Your love and dedication are obvious.

Tell Jerry that I think that he's totally spoiled! Love, dedication and smoothies -- what a cushy gig he has. Settling aside the liver disease, the shingles, and all of their associated pains, aggravations and critical problems. Other than those few things, it's like a resort vacation. You should be charging him double for the fresh fruit in the smoothies.

I trust that you know that I know - so I hope my flip comments don't offend. Give my best to Jerry.

Be well, John

PS - I think that we should design a 'caregiver's pennant'. A flag that proclaims, "Caregivers Rock!".
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/1/2008 8:46 AM (GMT -7)   

John   I'm not offended in the least.  I enjoy your posts.  Actually I look forward to them.  I still think you should write.  No improvement with Jerry.  I just got up.  He's having some trouble with his stomach also his hernia keeps popping out.  It took us a couple of hours to get it in last night.  He is so kind he gets up when he is restless to let me sleep.  Thanks again for all your support.

 

JoAnn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2008 7:38 PM (GMT -7)   
Aww, JoAnn, so sorry to hear of Jerry's shingles.  My daughter gets them, so I know how awful they are.  Stress seems to be a big trigger.
 
Know that I am thinking of you both.
 
Hugs,
Connie
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