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Posted 8/3/2008 3:22 AM (GMT 0)
Hello Everyone

Just checking in to let you all know we are still waiting and praying.  Some good news last Wed. Jerry's son went to Vanderbilt to start the testing to donate part of his liver to his dad.  He was told it will take about two months for all the testing.  I bet that it will take longer.  His son and his wife will have several appointments.  They have to see the same counselor we did at Vandy and that concerns me.  She seem to have an agenda about alcholism so I'm just praying she doesn't put the skids on this thing.  As we found out when we were trying to get my husband on the donor list she did turn him down to be listedat first.   With a lot of prayer and persistance he was listed.  His son could not persue the live donor transplant until we were on the list.  Jerry is about the same this weeke end.  Seems to be getting a little weaker.  I'm sure he will be due for a tranfusion soon.  No vomiting for quit some time now.  I suspect that is due to him being on Neomycin every day now twice a day.  That does concern me also but at least its keeping him from being so sick.  He goes to work for a few hours each day which is so good for him.  We moved an old recliner in his office so he can take his mini naps (as I call them).  But seems to be sleeping a lot more these days. 

Plese keep Jerry in your prayers.  I hope everyone is doing good.  I guess no news is good new.  I'm getting concerned about LaBumma haven't heard from her for a while.  

JoAnn 

Posted 8/3/2008 3:29 AM (GMT 0)
Hi JoAnn, thanks for the update on Jerry. I will definitely keep him in my prayers.
I sure hope that you are wrong about it taking longer than the 2 months. Don't know much about the living liver transplant process but 2 months seems like it should be enough time to get all the testing done.

I too am worried about LaBunna. So LaBunna if you read this post please reply if you can.

Have a good evening JoAnn.........thoughts and prayers..........
Posted 8/3/2008 10:43 AM (GMT 0)
Joann

I too will keep you and your family in my thoughts and prayers. I am glad that Jerry is still able to work some. I know it makes me feel better when I have things to do and helps me keep my mind off the illness and worries for a while. I hope that the testing will not take as long as anticipated. Please keep us posted when you can.

Lucy
Posted 8/3/2008 2:10 PM (GMT 0)
Joann, You and your family are still in my prayers. I will pray that the testing goes quickly and Jerry gets his tranplant soon.

LaBunna, I hope you check in soon. You are in our thoughts and prayers.
Posted 8/3/2008 6:11 PM (GMT 0)
OK here we go again.  The itching has been brutal.  Just checking to see if anyone has a remedy I have not tried.  Vandy has him on Hydroxizine and some kind of antidepressent that they claims has helped other patients.  I don't think they do but I'm afraid to take him off them because they may help more then we realize.  He is just going crazy.  I have bought everything under the sun at the drug stores and tried.  Nothing helps for more then maybe an hour.  Some don't even do that.  Just thought maybe someone has something new or even crazy thing we will try anything.  At this point I will rub strawberries on him!  We both need some sleep.. Thank you all and LaBunna WHERE ARE YOU?

JoANN

Posted 8/3/2008 8:15 PM (GMT 0)

JoAnn, I assume you've tried hydrocortizone (Caldacort) that is available OTC, but you can also get a stronger strength by Rx.  Also, have you tried good ole calamine lotion?  Thank God, I've escaped the itchiness for the most part.  I did have some before the cancer surgery, but found that rich body lotion worked for me.  Hopefully, somebody else will have better suggestions.

I do hope that it doesn't take longer than 2 mos. for the testing to be done.

LaBunna, are you out there?

Hugs,

Connie


Posted 8/4/2008 11:48 AM (GMT 0)
Hi  (sheepishly)

 

I gave in to some very bad behaviour last week. 

 

My anger at our situation and our life took over my patience and good sense.

 

I'm sorry.  I need to tell hubbie I'm sorry.

 

I don't need to describe how angry and childish I behaved... but use your imagination.... I did.

 

It was just too much for me.  I snapped. I spent several days and night 'not speaking to anyone'.

 

Joann - hubbie has the same itching and also rashes when his legs and ankles are soooo swollen.  The Dr. gave him a cream at the hopsital that did not work.  Hubbie has found that either plain old Aloe Vera cream or Benedryl helps.  Maybe this would help Jerry?

 

PG and BF3 thanks for thinking of me.

 

I have been in a black hole.  Hopefully I am out of it now.

 

 

Posted 8/4/2008 12:29 PM (GMT 0)
LaBunna.........been there and done that. Don't beat yourself up over too much. It's normal to blow up a time or too. That's why I always say take time for your self too. You have to find time for your own sanity or you lose it.

But if your blow up was like mine you probably should apologize to your husband and family.

Climb out of that o'l black hole and do something real nice for your self. You deserve to pamper your self.

Take care.......thoughts and prayers............
Posted 8/4/2008 3:43 PM (GMT 0)

LaBunna

Been there done that!  What makes me feel bad is when I snap at him.  Its a horrible feeling.  He really seems to take it well.  Trust me I have had more then one episode like that.  You will probably have more.  We have tried the benedryl.  Sometimes it helps short term but have not tried the Aloe Vera.  I might try that-- why not I have an entire cabinet full of anti itch cream.  Might as well have that also.  Just take one day at a time.  I have found that does help some.

JoAnn

Posted 8/4/2008 7:33 PM (GMT 0)
Hey Exhausted

I will keep Jerry in my prayers. May he be approved smoothly and quidkly.

LaBunna, don't be too hard on yourself. Apologize where apologies are needed. Move on. Do as Pink Grandma says and take some time to pamper yourself.

Exhausted, I have two old fashioned remedies for itching. One is an oatmeal bath about 4 cups to a tub of water. and the other is a very soft back scrubber, used dry. The long handle will let your husband reach everywhere and it seems to aleviate the immediate overwhelming itching. As for Meds, Benedryl is my fall back, but it increases drowsiness. Also udder balm seems to coat the skin well enough to fool the body into not itching so much.
Posted 8/4/2008 10:44 PM (GMT 0)

LaBunna, it's good to have you back!  I will echo what the others have said--apologize to family and move on.  Do something nice for yourself.  It doesn't have to be expensive--a manicure, a trip to the library, or just a nice long bubble bath.

Hugs,

Connie

Posted 8/5/2008 2:45 AM (GMT 0)

Thanks everyone for all the different remedies.  I happen to have some Aloe Vera gel in my frig and tried that.  He says it did help some so getting ready to try more.  Thank the Lord!!  We need sleep.  He says he is feeling weaker.  I called the Dr. office this afternoon and wouldn't you know it the Dr. had left already.  It was 3:00.  Don't those Dr. know we need them 24 hours a day?  Its just so hard for me with no sleep, when something goes wrong to think rational.  I'll be as good as new after some sleep.  Thanks to all of you again and again.

JoAnn

Posted 8/5/2008 3:45 AM (GMT 0)
LaBunna, It is good to hear from you. I have been there before also. Sometimes I lose my patience and then later feel so guilty. Hang in there. Things will get better.

JoAnn, I will pray that you both are able to get some sleep tonight, and Jerry wakes up feeling much better.
Posted 8/5/2008 3:50 AM (GMT 0)

Thank you all.  We are still up hoping the itching will stop.  LaBunna please just try and check in occasionally.  Carol where are you now.  I'm off to bed.  I HOPE>

JoAnn

Posted 8/6/2008 11:50 AM (GMT 0)
Thanks for all of your empathy.  Yes, I feel guilty.  And yes, I also feel better.

I have apologized to hubbie.  But, with that apology, I also got the chance to say a few things that I had been wanting to say... and couldn't seem to be able to say to him. 

 

We saw his doctor yesterday.  His MELD is now 19.  His lungs are once again filling up with fluids and his abdomen and legs/ankles/feet are huge.  But, he was sent home.  He wasn't admitted (yet).  Dr. said probably next week.

 

Hubbie was really really glad to be coming home (his wounds from the last visit have just barely healed!) and the dogs went wild when we both walked back in the house.  They have figured out that when mom & dad leave together - with a suit case - dad is probably not coming back.  It was really cute and they made a big fuss over him.  (Simpletons that they are!)

 

Joann, more advice on the itching... hubbie says 'don't touch it' or 'rub it' -  (at least for him) touching or rubbing it makes it worse. 

 

Don't know if I mentioned this, but we have a new symptom.  Trembling.  He shakes and can't sign his own name  anymore.  It is just pathetic.  I've seen him try to 'hide his hands' so that people don't notice his shaking.

 

Dr. told us to just 'hang on'.  A liver will come.  (again!)  

 

 

 But, today, here we are... quiet desperation.....

Posted 8/6/2008 1:44 PM (GMT 0)
LaBunna

 Jerry has had the trembling.  So bad he can't eat.  I'm not sure if its for the same reason because your hubbie has a higher MELD score.  I always use straws now so he can have his milk with a meal.   He also has a lid for his water cup so he won't spill.  I was told that the shaking is liver flap. 

"Be patient" don't you just love that.  Another one I just love is "We see patients every day that are much worse".  In the beginning that always made me feel so SMALL.  Like I didn't care about anyone else.  Now I think to myself how would THEY feel watching the love of their life fading away to nothing.

 I know what you mean about the wounds healing from the last hospital appt.  I think my hubbie has done a reverse from yours.  He was in the hospital all last year just about every other week.  He now manages to stay out sometimes for a month to six weeks. 

 Also about the itching.  I know what your hubbie means about not touching it.  I think that is why Jerry does better during the day.  The distractions help.  But during the night it wakes him up.  I know I will lay there and wait.  He will start jerking and scratching in his sleep.  Then everything goes crazy.  The Aloe Vera didn't work.  He just got up and dressed to go out and get the paper (his daily exercise) while putting his shoes on he fell asleep in the chair.  Isn't that pitiful. 

 An idea Jerry came up with yesterday.  We called the Dr. to have a blood test because he is getting so weak.  I have tryed to get Jerry to alert me before he gets so bad.  He told me over the week end he was feeling weaker.  We had blood work done yesterday and asked the lab to send us a copy of the results.  His hematocrit is 25.  Now we know before the Dr. has even called us.  So we can be prepared to spent a good 12 hrs at the hospital for a tranfusion.  Since we have not heard from the Dr. yet today it will probably be tomorrow.  He has an appt to be drained also tomorrow.  Not sure how they are going to do that.  I hope they don't put him in the hospital.  My daughter is coming in from Seattle on Friday.  We are so excited to see her and the kids.  I'm glad you two got to come home but don't you just rest easier sometimes when your hubbie is in the hospital.  You know they are taking care of him.  How often to you see your liver specialist.  We only go every 90 days.  In between the Gastro does everything.  I was just curious. 

 I hope you two have a decent day.

I will be thinking of you.

JoAnn 

Posted 8/6/2008 11:34 PM (GMT 0)
Joann

We see the hep Dr. every two weeks.

And if there is a problem.... we see him right then.  He always takes us in.

He tells his staff "OVERBOOK" AND GET HIM IN!

I am very confident and very happy with our hep doctor.  He is actually a professor of hepatology.  He teaches at Rush University Hospital where we go.

Take care and get sleep.

 

You cannot function without it, as we ALL know.  I've come to the point of doing what ever it takes to be able to sleep.  I'll have a glass of wine before bed.  I'll take a lorazipam.  I pray to all the saints and angles and our Lord and our Virgin Mother... What ever!

I just need to be able to sleep so I can cope the next day.

My mental problem last week was directly related to sleep deprivation.

 

Take it easy girl, think about something pleasant, (in the future or in the past), and let yourself relax and go 'sleepy', like the little girl you once were.

 

Love and compassion,

 

 

Posted 8/6/2008 11:56 PM (GMT 0)
EXHAUSTED
KEEP ON THE COORDINATOR WHO SETS UP THE TESTS FOR YOUR SON,IT SHOULD ONLY TAKE A MONTH AT MOST WE FOUND OUT IN 3 WEEKS. YOU CAN DOUBLE OR EVEN TRIPLE SOME TEST SUCH AS BW XRAYS CAT SCANS ETC MAKE THEM LISTEN TO YOU!!
DID U GET MY EMAIL TAKE CARE JOELENE
Posted 8/7/2008 1:38 AM (GMT 0)

Candlelight

No I did not get your e-mail please try again.  Jerry's son is not discussing much at all with his dad.  I think he is afraid his dad will try and talk him out of it.  Jerry is really unsure of the whole thing. But Justin is determined to do this.  Also all the testing is done at Vanderbilt and it is a three hour drive from where we live.  Please try and e-mail again.  Thank you so much.

LaBunna

I am exactly the same way you are about sleep.  If I don't get it I can not hardly stand any pressure.  I lose all my patience, everything.  Also its hard for me to sleep because Jerry keeps waking me up to scratch him.  The poor guy is going crazy.  We have a lot of faith in our liver Dr. .  His personality leaves a lot to be desired but personality doesn't do the surgery.  I think he is good.  He is also very well educated so that says a lot to me.  The surgeon is top notch.  I had him checked out.  I'm afraid to take anything because I might not wake up.  I'm so exhausted when I do go to sleep I go in to a coma. Remember that one time he got up and went outside.  He fell and couldn't get up and couldn't reach me on the phone.  He gets up some days and lets me sleep so I am getting some.  I should try the wine.  I bet that really does help.  It won't make me comotose that is, unless I drink the entire bottle which doesn't sound like a bad idea at this point.  Also Jerry had blood work yesterday and his Hct is 25.  No call from the Dr. office today.  His regular nurse is on vacation and I think the fil-in nurse dropped the ball.  You can bet I will be calling EARLY in the morning.  I know from experience if his blood is low for too long the amonia goes up and then everything goes haywire!!  I will be in touch and keep you updated.

JoAnn

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