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Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/24/2005 11:33 AM (GMT -7)   

Hello everyone and thank you for your prayers.  Larry is still in the hospital.  He has lost about 10+ lbs.  He is cranky and wanting to come home.  The Drs. did an upper GI endoscopy today.  They found a rather large verises(sp) and capped it off.  His throat is sore and swears the scope they used was the size of a large TV remote control.  I think he will be in for a few more days, don't know yet.

I want to tell everyone that is a care giver and to the patient also, how important it is to have a Medical Power of Attorney.  This does not give you the right to make decisions for that person as long as they are able, it is a back-up in case the patient is unable to make those decisions.  It also gives you (the care-giver) permission to call the hospital and get an update from the nurses station about your loved one.  You can get this form filled out and signed right in the hospital.  Just ask for Social Services to come to your room and they will take care of it right there.  Also, it is a good time to make a Living Will.  That way as the MPoA, you know that person's wishes in case the worst happens.  These forms stay in their medical records wherever they are. They will also give you a copy in case there is ever any question as to who you are. 

Since Larry was admitted on the weekend, the weekly staff did not know me, so I had to whip out my MPoA and prove I was who I said.  I wanted to get an update since Larry was quite groggy and still referring to the size of the scope they used  and was using words I'm sure he learned in the Navy.

I will be praying for all.  Thanks for listening.

Big Sister.

 


Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/25/2005 4:29 PM (GMT -7)   

Thank you Jennifer,

Larry got home from the hospital yeaterday.  He was in good spirits.  He is being agressive about eating the right foods and not drinking too many liquids.  He said that he got really good care at the VA Hospital and would recommend it to all Vets.

He looks better than he has in months and I think he feels he has some options now instead of just waiting for the monster to over take him.  We meet for a family meeting with the gastro next week.  We will learn more about a possible transplant and all the particulars.

I will be praying for all and thanks for all your prayers and hugs

Love,

-Paula


Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/25/2005 10:48 PM (GMT -7)   
Hi Jennifer,
 
It is so reasurring to know that someone is there rooting for us. thank you for that.
 
I will be praying for your friends transplant and that all goes well.
I will add hi to my prayer list and would love to know his first name.
Larry was in the Navy, on the Constellation. He was in for six years from 1972.  He was off the coast of Viet Nam for two tours.
 
I love the Hugs,
-Paula

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/25/2005 11:01 PM (GMT -7)   
Yes, we are very thankful that the VA is treating him now. He has been on SSD for about 10 years. He had a good insurance plan from his job, so was on the list at USC. Last year he fell and broke his hip. He missed his premium payment so they cancelled him. I don't have to tell you what I think about that. He was in the process of transferring his records to Mayo but when he broke his hip that all went away. Hopefully the VA can circumvent some the red tape and get him re-listed. He goes to the Gastro next week and at that time they are going to check his Meld (sp) to see exactly where he is at. I never thought I would be learning a whole new language at 57. I only had one semester of Spanish in HS and then transferred out.
Love, paula

gaylesw
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/26/2005 11:45 AM (GMT -7)   

Hi Big Sister,

I am glad to hear Larry is doing better. Best wishes on your meeting.  I have a friend with hep c - end stages. He broke his hip also 1 1/2 years ago - but they would not fix it - placed him on hospice. They told him his platlets were too low from his liver disease.  But I am wondering about it now.  How did Larry get his hip fixed? Did they question at all that it might not work because of the problems related to liver cirrhosis? Thanks

Gayle


Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/27/2005 6:23 PM (GMT -7)   
Hi Gayle,
When Larry broke his hip condition was not a serious. The parametics took him to the hospital and the Dr. was called and they did surgery. They put pins in it. However it did not heal right and one leg is shorter than the other by about 1". It casues him to limp and alot of pain.
So, I guess the hepC was the cause of that. I was not aware that that could be the problem. Wow, I love this sight ya find out more and more everyday.
Thanks for your post,
I Will be praying for your friend,
Bib Sister

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/31/2005 10:37 AM (GMT -7)   

Hi Jen,

Larry is at the Gastro today.  My Step-Dad took him.  So I will let everyone know this afternoon.

Sorry I have been re-miss in reply's.  My youngest is getting married this weekend.  So needless to say it is a little hectic at my house.

I'll be back,

-Big Sister


Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 8/31/2005 11:19 AM (GMT -7)   

It is my baby Son.  They have been engaged since Feb.

I am very happy for both of them.

Thank you for asking.

Love, Paula


Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/12/2005 3:48 PM (GMT -7)   

Hi Jen,

Larry was doing well until the last few days.  He is having alot of pain from the broken hip.  One of the screws is working it way out.  As it is one leg is 1 inch shorter than the other, so walking was difficult. We had an elevated shoe made, but it is too heavy for him to lift in his weakened condition. He ran out of the pain meds, so he is at the ER at the VA right now, as he is unable to stand up. He was going to be evaluated by a Ortho to see what can be done.  As you know all things take time......

He has lost about thirty lbs (water weight) and has been very good about his nuturition.  We have gotten the info concerning the Transplant and they told him he appeared to be a good candidate. So, now were are going thru the screening process.  Our biggest problem now is the support person to go Portland with him.  It will take approximately six months, for someone to be there with him before and after.  Like everyone else we all have to work.  I am depending on God to provide.

The wedding was wonderful, very sweet.  I will always remember the look on my son's face as he said his vows.  They went to Colorado on their honeymoon.

Hugs to you and God Bless

-Paula


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/13/2005 7:01 PM (GMT -7)   

Hi, Paula.

I'm so sorry to hear about your brother's hip.  The VA, as I recall, has a really good ortho / physical therapy program, so he's definitely in the right place.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Jennifer -

I don't know when your friend was at the VA, but as I understand it (from veterans and from several VA staff members), any veteran in good standing (DD214 - honorable discharge) is eligible for treatment at any VA facility. 

It may not be free treatment, but they can and will be treated.  There may be a copay involved or coordination of benefits with an insurance company, but I've never known of anyone being turned away or refused treatment.  You may want to have him contact them again.

I know the hospital here in Arizona has undergone a major process reorganization in the last year, which has improved screening, clinic assignments and follow-up care.

God Bless.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/13/2005 9:47 PM (GMT -7)   

 

   Larry is better today after some really good pain meds.  He saw two Drs. yesterday and they are evaluating him. They told him it mught be some sort of PT, but not sure yet.  He goes to the gastro on Friday, so we will wait and see.

We are blessed that his care is thru the VA.  They have such compassion for everyone that comes in.  I haven't seen that kind of caring at a hospital in along time.  We have nothing but praise for them. I would advise anyone who qualifies not to hesitate about getting treatment there.

I'll keep you posted.  How are your loved ones.  I seem to only think about Larry and no one else these days.

Love, Paula

 


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/13/2005 9:54 PM (GMT -7)   

Paula,

Great news! 

We were really happy with the treatment at the VA. In fact, we were just talking about it today.

Mark's doing well, thank you.  They've reduced the dosage on one of his anti-rejection/ immunosuppressant meds and it's done wonders for his energy and attitude.  Of course, we just gave him his weekly shot of interferon, so that pretty much takes away a lot of the energy for a couple of days.

It's all so much better than it could have been, that it's hard to complain.

God Bless.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/13/2005 10:09 PM (GMT -7)   

  Hi Jules,  Very happy to her about Mark.  God is indeed good. 

 I have my son's Spider so we took it for spin and got some ice cream. When we got home I put some eggs on to boil to make egg salad for Larry for lunch tomorrow.  MMMM ate the ice cream, put the cat out.  Came to my room to got ready for bed. Then all of sudden there was a big POP, I ran out of my room thinking Larry had fallen etc.  Nope it was the eggs exploding all over the kitchen.  They do get airborne.  Larry thought it was really funny that I had done that.  Since I am supposed to be the Care Giver, responsible one and so on.  I can still hear him laughing in his room.  Think I'll turn my TV up louder.

Enjoy and God Bless

-Paula


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/13/2005 10:18 PM (GMT -7)   
Oh, my!!  Can you hear us laughing, with you ?!
 
Just a warning - eggs have about 7 grams of protein - per egg.  (At least that was the base count I used to calculate.)  I used to let Mark have about 1 egg per day - he was limited to 40 grams total protein per day.
 
Oh, dear. Still grinning.
 
Glad Larry's feeling well enough to laugh!  It's some of the best medicine.
 
God Bless.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/14/2005 9:07 AM (GMT -7)   

  Hi Julie, 

 I am not laughing anymore, my house smells like a sewer, ok I'm still laughing.

The Doc told Larry he needed to eat more protein, his levels are down.  He told him to eat steak, eggs and so on. The other restriction is sodium.  We'll see what happens on Firday.
 
By the way Larry does not want me to cook for him anymore hehe
God Bless,
-Paula

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/15/2005 9:59 AM (GMT -7)   

Paula,

That will certainly make it a lot easier (if he ever lets you back in the kitchen  nono  ) to cook for him.  One of the things I hated the most was counting protein grams and sodium milligrams when Mark was restricted.  There's just too much of both in everything.  Even some veggies have protein grams, if I recall correctly.

I'll have to send you some 'Oust' - it's supposed to eliminate odors from the air.  tongue

God Bless.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/15/2005 10:20 AM (GMT -7)   

Julie,

Thanks for the Oust suggestion.  I'll have to pick some up.

The Drs. are having a conferance with the Mayo today about Larry's hip options. The previous surgery pins have come loose and there is bone maass that obstucted the healing.  A hip replacement was suggested, but they don't know if he is strong enough to make it thru the surgery. So we wait......

Thanks for being there,

Love You & God Bless

-Paula

 


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/15/2005 10:31 AM (GMT -7)   
Paula,
 
I'll say a prayer.
 
I have to believe that God didn't bring you this far to stop now.
 
One day at a time is all we can do.
 
Love you, too. And God Bless.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/15/2005 10:38 AM (GMT -7)   

Julie,

I also believe that. I know that the Lord has a plan that all things work together for His glory.  He is El Roi, The All Seeing God.  We only have to trust Him.

Love

-Paula


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/15/2005 3:47 PM (GMT -7)   
Paula, I just wanted to mention that I've had bilateral hip replacements while having chronic, active hep C, and it was never suggested to me that the hep C might cause problems with healing or anything else. My hip replacements were the result of destruction from osteonecrosis, also known as avascular or aseptic necrosis. The bone basically dies. There are several causes for this, and then there are some where cause is unknown. At any rate, the surgeries did wipe me out more than the average person, because of the hep C. A hip replacement may be the only option for your brother, but it is definitely a very major surgery and recovery time is lengthy.

I do want to suggest that he try inserts for his shoe. I ended up with the right leg one-half inch longer than the left, so I put a half-inch lift in my left shoe. The ones I use are removable and come in 3/8 inch layers. The layers can be peeled apart, and also stacked to the height needed. These are leather and rubber--very well made and not expensive. They are made by a company in FL:

Fitfeet Enterprises, 1-877-HEELIFT or www.fitfeet.com

The lifts are called Adjust-A-Lifts and come in sm., med., and large. I wear a 6 1/2 woman's shoe and take a small. The customer service with this company is great!

Without these, I have bad lumbar pain. The only down side is that I have to wear closed shoes, such as sneakers. I'd really like to wear some pretty sandals, but can't.

Prayers for your brother.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/15/2005 4:08 PM (GMT -7)   

Thank you so much for your information and response.

We just heard back from the eval team and they said they would have to do bone grafs and a replacement. His hip is basically fractured again.  They also told him he would not be able to have this surgery until he had a liver transplant. He cannot put any weight on his leg at all right now he is using a walker with wheels. He is in extreme pain, only the drugs make his pain bearable at all. He is pretty depressed at the moment.

We want to check into getting a scooter.  Does anyone know if the VA, Medicare or who we could go to to get one? How we go about getting one?

I feel so sad for him.  I can't even imagine the agony he is in.

I will pray for you as I can tell you have been thru alot.  God bles and thanks again for your support.

Love, Paula


Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/15/2005 4:18 PM (GMT -7)   

Thank you Jennifer,  I will certainly check that out tonight. I'm headed for home, it's been one of those days.

Love & Hugs,

-Paula


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/15/2005 4:20 PM (GMT -7)   
Paula,
 
I would ask his doctors about it.  (I don't think that they'll do the scooter, but you can definitely get a wheelchair.)
 
Then, once they have entered the order into the computer, you just go down to OT/RT and pick it up. At least that's what we did with Mark's wheelchair; it took maybe a week.  The hospital called us when it was ready to pick up.
 
Or - we've got a wheelchair, support bars for the toilet, a pull-bar for the shower, and a shower chair - that you can have.  We don't need them, we just don't have anywhere to store them, so they're still set-up.
 
Let me know.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

Big sister
Regular Member


Date Joined Aug 2005
Total Posts : 30
   Posted 9/15/2005 7:15 PM (GMT -7)   

Julie you and Mark are such Angels. 

 What would we have done without you and Healingwell.  I will talk to Larry and see what he decides.  I think we are gonna try the scooter store just to check if Medicare will cover the cost, but I know the shower bars and chair would be wonderful.

God Double Bless you both.
Love, Paula

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 9/15/2005 7:41 PM (GMT -7)   
Paula,
 
You just let us know what you need.  It'll all be here, I promise.  (I'm too lazy to move it!  ;-O  )
 
God has blessed me, with lots of new friends and a wonderful new family.
DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.
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