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Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 6/19/2009 8:23 AM (GMT -7)   
Hello all, First of all I want to apologize for not being about to post as much as I would like.

Most of you know that I now have to commute 2 hours a day plus do my 8 hour shift.....when I get home in the evening I am just burnt out.

One week ago my youngest brother who is only 57 came down from Washington State to live.
Now this brother has been diagnosed with Hep C and Emphysema for a number of years. The trip landed him in the hospital with pneumonia.........He is in ICU and is currently on a respirator. They found out that he also has......MSRA in his lungs and Aspergillas fungus in the lungs also....They put him on the respirator with his permission so that he didn't have to struggle to breath and could rest and fight the infections........he has been on the respirator since Sunday and it doesn't look like he will be getting off of it anytime soon unless they can get the infections under control.

If he survives this crisis........it looks like I will be care taking again.....I have 4 brothers and a sister here in California but I think that it's going to fall on me to take care of him. I have an appointment with the social worker today to find out what help I can get for him. Please keep him and me in your prayers as.

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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/19/2009 10:02 AM (GMT -7)   

PG, I'm so sorry to hear about your brother's illness.  I pray that he can overcome the infections and get off the respirator.  I personally don't see how you can take on caregiving right now. 

Hugs and prayers,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 6/19/2009 12:41 PM (GMT -7)   
Quick update. Just returned from the hospital and the hospital social worker was a farce. No help at all. But some of the other hospital workers helped some. What I need to do is first get power of attorney to access his medical records and act in his behalf........Going to be difficult as it is the social worker that needs to get the ball rolling........and she didn't even volunteer that bit of information......She gave me a booklet with a lot of assisted living places........in other cities! She was totally useless. But at least she made me mad........red hot mad.......to get things done! All I can say........people get out of my way and watch your toes cause I'll enjoy stomping on a few.

Connie, I agree that for me it would be next to impossible for me to take care of him....giving my working 1hour away from home..I am going to be looking into other options......like assisted living and/or home health services......If anyone has any ideas at all........I'm all ears........or rather eyes..

I'm off again.........wish me luck........and thank you for your thoughts and prayers.....

Thoughts and prayers back at all of you........
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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/19/2009 3:11 PM (GMT -7)   

PG, so much depends on his status when/if he is discharged.  If he's still on a respiratory or needs 24-hour nursing care, he can get into a NH.  The doctor would have to do the referral.  I suggest you contact some assisted living places, nursing homes, and home health care to see what they offer and what he qualifies for.  But it's rather difficult to make a decision until you see if his condition improves.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/19/2009 10:13 PM (GMT -7)   
Connie, what I am trying to find out is what programs or services that he will be eligible for in our area...for when he gets out of the hospital.......I know it's a big WHEN, that he may not make it but I have got to act like he is going to make it through this.. for his sake and my sanity... I want to know what his options are so that if he does get out of the hospital we can have some kind of plan in place ....whether is a nursing home, assisted living or home healthcare ....what ever the state of his health demands. I'm a planner.........he's a fly by the seat of his pants person. I know the it will all be a waste of time if he doesn't make it but I can not just sit and do nothing....it drives me crazy just worrying....I have to do something constructive. But it really won't be a waste........I can share my experience with others trying to wade through the system.

Yes I am going to go around to some assisted living facilities and check them out......and also some nursing homes. One of my brothers is coming into town tomorrow morning.......I am going to meet him at the hospital and hopefully he can help me some. I am also expecting a call back from our county information health officer.....but I am not going to be patient .......if I don't hear from them by Monday, I'll keep calling them until they get tired of hearing my voice.

I am always preaching to our members to get educated as possible about liver disease.......well I am getting educated as possible about what I need to know to help make my brother's transition from the hospital what ever living arrangements that he may need... as smoothly as possible. At least I am going to try.....

Thanks for being here..........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.


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 6/20/2009 5:22 AM (GMT -7)   

Hi PG,  I am so sorry you are going through this, you are truly an inspiration.  I will include you and your family in my prayers.  Take care.  Toolost 

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/20/2009 5:32 AM (GMT -7)   

PG, I agree it's best to do something constructive.  Worrying is a big waste of energy.  Do be aware, though, that it will be easier to get him in a place if the doctor recommends it and it's done as a direct admit from the hospital.  In other words, don't have him discharged to you and then try to place him somewhere.  In fact, I think a NH would require a doctor's orders.  When I worked for doctors, if a patient was at home and needed to go into a NH, we would have them go to the ER for a direct admit to the hospital and then discharge them to a NH.

My thoughts and prayers are with you and your brother.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/20/2009 9:37 PM (GMT -7)   
Well my brother is still on the ventilator but I am being told that his lungs are slightly better today. The antibiotics are working. Because of all the different tubes going in him they have to sedate him and restrain his hands. If the sedation starts to wear off he becomes very agitated and tries to pull them out. But they need him to be somewhat coherent to judge how he is doing. It has been a tough balancing act for them.

When I got up there this morning he was relaxed .........This evening he was very agitated......if looks could kill I would have fallen dead. He wants all those tubes out. He could understand what I was telling him and shake his head up and down or left to right to answer my questions. So that is a good thing. They may take out the respirator and the feeding tube tomorrow if things go okay tonight and his test results are improved.

The nursing staff did tell me that the doctor would make what ever recommendations that my brother needed.

Well I am off to bed...........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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/21/2009 8:47 PM (GMT -7)   

PG, I am really glad to hear that the antibiotics are working and that your brother is improving.  I have personally experienced a ventilator and "all those tubes" and when I was conscious I tried to get out of bed.  You never heard so many alarms going off and nurses running.  I think it is a natural response to want those foreign objects out.  It's not comfortable.  Anyway, let's hope that he can be weaned from the respirator and also get the feeding tube out.  Please keep us posted.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/24/2009 4:48 PM (GMT -7)   
My brother got the ventilator out Monday. He was doing really well. Then........early the next morning they found out his right lung collapsed. So now they are treating that with another tube but it goes directly into his lung from his side. He's doing okay.......one step forward 2 steps back. Gotta go to the hospital..........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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2009 5:03 PM (GMT -7)   

PG, that's a chest tube and common in such situations.  It's great that he's off the ventilator, as the longer one is on one the harder it is to get off. 

Prayers for his continued recovery.

Hugs for you,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/27/2009 7:04 PM (GMT -7)   
Well he still has his chest tube in. But he is alert and talking. But when he talks his oxygen level goes down..........and he is on a high level of oxygen. So I keep telling him to just relax and breathe deep. But of course he won't listen to me. So if he is sleeping when I get there I won't wake him. I'll just watch him for a while and then talk to his nurse and doctor. Even though he tells me to wake him up I won't and then he gets mad at me for letting him sleep.

They haven't let him eat and he does have an appetite. That's good and bad.........he still can't eat ........maybe tomorrow.............he saw one of the tie strings on the floor and ask me if was it food. He thought it may have been a noodle............I felt so bad...........

Because of his lung issues........they haven't even addressed his Hepatitis C and his liver . Hopefully they will get his lungs in better shape soon so that they can check his liver out.

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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/27/2009 8:35 PM (GMT -7)   
The poor thing must be starving!  I hope he's well enough to eat soon.  They've always had issues with my oxygen levels, too.  I finally told them I was a 2-pack a day smoker for 40 years and my O2 sats are never going to be above 97.  THEN they take me off oxygen and discharge me.  Not that the two cases are the same, but is your brother a smoker or was he?  That can make a difference.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 6/28/2009 5:14 PM (GMT -7)   
PG

I am so sorry to hear that your brother is having so many health issues right now. My thoughts and prayers go out to you and your brother.

Lucy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/28/2009 10:19 PM (GMT -7)   
Thank you Lucy and Connie, may brother can use all the prayers that he can get. I could use some too.....This is exhausting.

And yes Connie, my brother was a smoker.....He tried and tried over the years and couldn't give it up for long. He only quit about a week before he was hospitalized.......I think that he was just having such a time of just trying to breathe that he didn't even think to smoke. So now it's been about weeks. I did tell him that I would kick his butt if he even tried to pick up another cigarette.

There was some good news finally today. They are talking about taking out the chest tube tomorrow. And they finally gave him some food. It was just Jello, sherbert, cereal and soup but it seems to satisfy him. He said that he was stuffed when I got there, and couldn't eat any more. turn turn

He's oxygen levels are still low .........

Thoughts and prayers to all........
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.


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 6/29/2009 4:18 AM (GMT -7)   

I'm in Ohio and each state may be different.  One thing about power of attorney.  There is a medical power of attorney and one where you can handle there financial needs or other matters.  I have power of attorney for my father so I can handle his banking, bill paying or discussing his insurance needs etc.  My sister and I both have medical power of attorney for medical decisions incase one of us are not available during an emergency.  As far as going into a nursing home or assisted living.  Being discharged straight from a hospital has it's benefits as far as medicaid or medicare picking up the bills.  Something about if they go home first the first 30 days are your responsibility.  I worked as a home health aide and a doctors request was necessary, then a nurse with home health would come in to evaluate the clients care needs and determine which if any social services were available as far as payment, in home needs (shower chair, wheel chair, changing shower for handicap accessibility and so on), visiting nurses or the like. 

My husband has hep c and lives a normal life such as working full time, golfing etc.  He has yearly blood work done and watches his diet, doesn't drink excessively, doesn't take meds which could injure is liver.  We know that eventually things could change but we don't let this stop us from living now other than taking the usual precautions so family members won't get infected.

Good Luck and realize there if help out there.  I had an excellent case worker at our state Job & Family Services dept that helped me out when my mother needed to be placed in a nursing home and again at the time of her death.

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/29/2009 7:32 AM (GMT -7)   
bsjagular, you are certainly correct about the NH, etc.  However, as far as your husband, if he has chronic active hep C like me, he should not drink AT ALL!  Also, he should try treatment.  I wasn't able to do the original interferon treatment and just went on with my life for 12 yrs., and then was diagnosed with liver cancer which is a possible complication of untreated hep C.  I just don't want newbies here to get the impression that hep C is no big deal and they can basically ignore it.  Of course, if he only tests positive for hep C (was exposed to it but his immune system kicked it out), then he doesn't need treatment, but nevertheless should not drink.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/30/2009 10:32 PM (GMT -7)   
Great news........they removed the chest tube,catheter, and IV and moved him to the progressive care ward last evening. He had a tray of real food for dinner.....he couldn't eat much but he ate as much as he could. Tonight he looked even better.......the respirtory nurse came and gave him his treatments while I was there.......3 different ones.......And I could tell there was an improvement in his breathing afterwards. smilewinkgrin They are suppose to get him up tomorrow and start his rehabilitation. yeah yeah

Thank you all for your thoughts and prayers.........they are working........
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.


moonroe
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 7/1/2009 4:05 AM (GMT -7)   
PG,I am so sorry about your brother and all you are having to go through. In NC we have resources for seniors and legal aid.I was able to get medical power of attorney through legal aid and they came right to the house. Try resources for seniors .They might have a program to send someone to your house to take care of him when he gets out of the hospital.Hope this helps. Moonroe

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2009 12:26 PM (GMT -7)   

PG, it's proof that prayer works and miracles do happen!  Once he gets up and starts walking, he will get stronger day by day.  Also, his lungs should improve.

Keep us updated!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/5/2009 10:31 PM (GMT -7)   
Well he went back to ICU the next afternoon. They finally ran tests for his liver.......which showed that he has cirrhosis too. I asked them what stage? The doctor said stage B. She said there's A,B & C and I said that I was under the impression that they were 1,2,3,4. Why is there 2 different sets of stages? No wonder everyone gets confused.
They are now actively treating his liver disease along with everything else. Anyways.......he had 2 and 1/2 litres drained from his abdomen today. He's on Aldactone and Lasix. The were giving him some albumin (Connie pleaseadd this one to the list if I spelled it wrong) in his IV. His ammonia levels are okay so far.

He did look better tonight though. Was more alert and less cranky.

I did get the power of attorney and the advanced directives done.

He told my sister and I to keep praying for him.........(He's so scared.) I told him he had people praying for him that he didn't even know. I told him about HealingWell. He said to tell all of you thank you for your prayers...........and I thank you for your prayers.

Thoughts and prayers for all of us.........
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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/6/2009 3:18 PM (GMT -7)   

Well, at least he's still off the ventilator and doing okay.  You spelled albumin correctly.  I don't know about the staging.  I've never been told what stage of cirrhosis I have, and really don't think it's important.  If you have it, you have it.  Some cancers go by Class and Stage.  So I suppose cirrhosis could be similar.  There's nothing in the Palmer book about this that I can find.

My prayers are with your brother for his recovery.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 7/6/2009 3:35 PM (GMT -7)   
PG, I was so sorry to read about your brother becoming so ill. I guess my biggest concern is about you becoming a caregiver for the second time. I know how hard it is and I know what you went thru before. My heart is aching for you my friend. I also noted that where you live they stage it differently. I called a friend of mine and he says that it is called ABC on the west coast. I don't know why though. It just seems like it becomes more confusing every day. Anyway, I love ya and wish you strength. Call if you want to.
 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."

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/10/2009 7:48 AM (GMT -7)   
First of all, thanks for all your thoughts and prayers.

They are transferring my brother to a convalescent hospital today. I am extremely worried that he won't get the help that he needs to improve enough to be able to walk again and have some sort of independence.

I have to talk with MediCal today and find out exactly what they are covering for his recovery. I believe that they told the hospital to get him out that they couldn't pay anymore.......because I don't think that he is even well enough to be in a convalescent hospital. They will not drain his belly again..........their excuse is that they need him to recover from everything else that has happened to him in the last 3 weeks..........He is so bloated it's very difficult for him to breath.

Shelly , I would like to talk to you........but I can not find your phone number again...sorry.....can you email it to me.... I promise this time to get it put in my address book.

Wish me luck and please say a few extra prayers for my brother today please.......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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/10/2009 9:53 AM (GMT -7)   
PG, hopefully he will get some good PT at the convalescent facility.  That is probably what he needs more than anything right now.  However, I would keep a close eye on his health problems.  From what I know and have experienced personally, nursing homes and convalescent/rehab facilities
have ONE doctor...the medical director...to whom everything is reported.  He may come around a couple of times a week to personally see the patients, or once a month--depending on what the state regulations are.  He is definitely not there all the time.  So if something should arise that needs his attention, you need to make sure that it's conveyed to him and that he sees your brother or takes necessary steps to address the problem.
 
I have been in step-down units and rehab facilities several times with my various surgeries, and never really felt well enough to be discharged from the hospital at the time.  But you have to trust the doctors to know what they are doing.  Remember, they are very lawsuit-nervous these days and certainly don't want to have a patient suddenly "go bad" because they've been discharged from hospital care too soon.  But also continue to take as active a role as you can in observing your brother and reporting anything that you think needs attention.
 
I hope he will be on the way to recovery soon.
 
Hugs,
Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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