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Author Topic: They say everything is shutting down  (Read 39786 times)
rose1999
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« Reply #175 on: January 11, 2009, 09:15:19 AM »

As long as he wants to fight then you keep fighting along with him  :grouphug;
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RichardMEL
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« Reply #176 on: January 11, 2009, 03:38:40 PM »

Roxanne I am concerned that now you are sick - most likely because you are running yourself into the ground caring for your father - being there 24/7 etc.. which is a wonderful thing and I do not want you to think I am having a go at you for being so loving and supportive.. but you'll be no help to your dad (or mom for that matter) if you push yourself so much that you become a patient also!!! You need to look after yourself as much as you need to be there for your dad. Remember while he's in hospital it's the staff's responsibility and task to give him the best level of care they can.

One thought also comes to mind, and this is difficult I know... but I must say while your dad wants to fight this is great and he should get every support with that but at some point he may just say enough is enough. When you consider the life he's leading right now which contains pain and struggle sitting in hospital etc. That's not fun for anyone. It may be that a point is reached where HE may decide this isn't the sort of life he wants. I know that thought may upset you but you should be prepared for this sort of thing and remember to support him with whatever HE decides he wants to do because it's his life and should be his choice.

Hang in there and let's hope for that miracle though that he can pull through this current struggle and get out of that hospital and back to something better!

 :grouphug; :grouphug; :grouphug;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Wattle
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« Reply #177 on: January 11, 2009, 04:24:17 PM »

 :grouphug; :grouphug;
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PKD
June 2005 Commenced PD Dialysis
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lola
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I can fly!!!

« Reply #178 on: January 11, 2009, 06:02:47 PM »

Roxanne, PLEASE take care of yourself LISTEN to me, I got strep throat dealing with my husbands crap and then everything falls apart when we are down. Even short naps are better then no sleep at all also really try to get extra vitamin c in you that seems to help me out. :grouphug; :grouphug;
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Roxanne610
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I just dont know anymore!!!

« Reply #179 on: January 11, 2009, 06:24:36 PM »

Hello Everyone,,,

Thanks Rich,,but right now I feel better,,I also think it might of been my nerves just hit me hard.  I know its the hospitals job but we wanna be here 24/7 I dont feel comfortable at home we just wanna be here..And now that I am in his room so it will be alot easier..They have a hospital bed in here for us and a lounge chair so its less stressful running back and forth to his room from the family room..  We wanna sleep here and spend as much time with him as we can..

We are faced with so many decisions that are so hard for us to make........Right now it seems that we have the pain from the perionitis in check....But he is disorientated and aggaitated we dont know if its from the creatine or ammonia levels from the liver....So tomorrow do we put him through dialysis which is going to be painful since he has a huge hematoma on his arm to alleviate the toxins and fluids to make him more comfortable and we dont even know if he will be able to finish........Then are only option after that is to take him home call hospice and thats it.................WE ARE GOING OUT OF OUR MIND WITH THIS... Are we being selfish by putting him through dialysis...

It would be a little easier if we definatly knew that the liver was failing or if this is from the kidneys...

Helpppppppppppppppppppp with some thoughts
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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
Roxanne610
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I just dont know anymore!!!

« Reply #180 on: January 11, 2009, 06:26:06 PM »

Also,,he is having some sort of pain in his right leg always raising it,,,,he hasnt had dialysis so its not cramping from that we are confused over just one more thing...

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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
jessup
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« Reply #181 on: January 11, 2009, 06:27:57 PM »

OMG
this is so sad mate
What does your Dad want to do?
 :grouphug; :grouphug;
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Roxanne610
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I just dont know anymore!!!

« Reply #182 on: January 11, 2009, 06:29:33 PM »

To describe the aggiated hes shaking his head back and forth doesnt want things on him,,and he never does that,,,just uncomfortable it seems i ask him if he has pain and he says no..this is so sad... its ripping our hearts our everyday to see this...If everyone can ask everyone on here maybe we can get some feedback..
thanks
xoxoxoo
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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
Roxanne610
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I just dont know anymore!!!

« Reply #183 on: January 11, 2009, 06:31:20 PM »

He is tooooooooooo disorientate to even answer us right now it will be up to my mother, brother and me....
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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
jessup
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Gemma - the tucker monster

« Reply #184 on: January 11, 2009, 06:38:32 PM »

Roxanne,  Hospice can come to the hospital as well.  If he needs to stay there, they can help him there.  If ya'll want him home, they can get him there, and take care of him at home.  They will probably have an incenter hospice, that would be much more family freindly than the hospital.  Talk to them and see what your Dad wants.  He may want to go home.  Your doing better than you think you are. 
I think that I would take nurse wratched's advice
Did you ever have conversations with you Dad about this situation if it arised?
You will know within your hearts what your Dad would want - and that is what is important.
Please stay strong
Lots of love to you all
 :grouphug; :grouphug; :grouphug;
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Sluff
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« Reply #185 on: January 11, 2009, 06:42:01 PM »

Just wondering if in your State of residence, if your dad is unable to care for himself and/or make medical decisions for himself does he have anyone who is appointed to do this for him, or does it go to his wife by default? I think a family meeting is in order here. It may be a tough decision to make but based on the extensive problems he has been having I think one must ask themselves, what quality of life will there be if recovery is possible. No one but you and your family can make this decision, I can tell you what I think, but what if I'm wrong? I know it's hard but you need to conference with the doctors on the case and come straight out and ask if they think this is the end. That is what I did for my Dad, the doctor said yes, so we increased morphine to make the transition painless. Sorry you are faced with such a difficult situation but he is trusting you and your family to make the best decision you can with the information you have.  :grouphug; :grouphug;
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okarol
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« Reply #186 on: January 11, 2009, 06:43:01 PM »

I don't know about the symptoms of the liver failure. It sounds like he has many obstacles to overcome and you had said he's very thin, which makes it difficult as he has no reserves to fall back on for energy. You can read about the symptoms of uremia here: http://www.aakp.org/aakp-library/symptoms-of-uremic-poisoning/ - it says:
As kidney failure progresses, patients often become drowsy or sleepy. They may sleep more, and it may become difficult to arouse them from sleep. The ability to think clearly or accomplish mental tasks may become impaired, memory may become imprecise and personality can change. Some patients develop muscle cramps or restless legs. A strange or burning sensation of the legs or feet is called “peripheral neuropathy.” As the kidney failure becomes worse, patients can become disoriented or confused, develop slurred speech, suffer from seizures and eventually fall into a coma. A common symptom is loss of appetite, leading to weight loss and malnutrition. Even if encouraged to eat more, patients with uremia often are unable to eat much, become depleted in proteins and develop muscle wasting.
This is a very trying time for your family. I don't know what I would do. Staying with him, holding him, hugging him and telling him he is loved is all I can think of. Please call hospice, they will send someone over right away to help you with these difficult decisions.
 :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Roxanne610
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I just dont know anymore!!!

« Reply #187 on: January 11, 2009, 07:33:25 PM »

 :'( :'( :'( :'(
We are that is why we are staying here night and day 24/7 cause we dont know what this road is going to bring us...My poor mom you dont even know,,,she has her feelings I have mine, my brother has his its all so difficult...We are waiting right now for the kidney doctor to come in thank god i just saw him on the floor its his doctor too...I think this is our answer to dialysis, he cant make his mind up on his own so tomorrow my family will have to decide weither to go through with it...

Thanks OKarol,,I just showed my mom that and he def has the symptoms soon as the dr comes in im going to mention it to him...I have my computer here so I will be back...
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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
pelagia
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« Reply #188 on: January 11, 2009, 07:40:10 PM »

Roxanne, did you cousin, the doctor, make it there?  :grouphug;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
nursewratchet
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"Either do it, or don't do it, don't try"

« Reply #189 on: January 11, 2009, 08:18:21 PM »

To describe the aggiated hes shaking his head back and forth doesnt want things on him,,and he never does that,,,just uncomfortable it seems i ask him if he has pain and he says no..this is so sad... its ripping our hearts our everyday to see this...If everyone can ask everyone on here maybe we can get some feedback..
thanks
xoxoxoo
  Roxanne, these symptoms are called "terminal restlestness".  It can be helped by some Ativan.  It is normal for what he is going through, you'll see fidgeting, restlestness, and maybe "picking" at the air, or the sheets.  Please get some Hospice.  Get some rest, you can't take care of him, if you are not taking care of yourself.  :grouphug;
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Vicki
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« Reply #190 on: January 11, 2009, 09:11:58 PM »

 :grouphug; from us to your family.
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cris
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Nanay, superwoman, super dooper, best mother

« Reply #191 on: January 11, 2009, 09:21:17 PM »

Rox, all of the symptoms you said, we had it with Nanay. We thought it's the end, even the doctors, but with prayers we did overcome. I am not trying to give you false hope. Please whatever will be, keep faith and trust that GOD will show you the way. No remorse, you'eve given yourself, all of you the unselfish love, that's what is important.
love,
cris
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there is no greater love than this: "that a man lays down his life for his friend"
jessup
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Gemma - the tucker monster

« Reply #192 on: January 12, 2009, 01:10:23 AM »

I am so thinking of your dad
and you and your mum and bro
 :grouphug; :grouphug; :grouphug; :grouphug;
lots of love and prayers girl friend
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breezysummerday
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« Reply #193 on: January 12, 2009, 01:18:44 AM »




                                                                    :grouphug;    :grouphug;    :grouphug;
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« Reply #194 on: January 12, 2009, 01:22:13 AM »

Wish I could say something funny to make you laugh  just for a little bit, but don't feel this would a good time. I wish you had better doctors for your father so they could get him on the right pathwithout having to suffer so many setbacks.

Like...... bad memory moment who said this earlier here, you need (and your mother and brother) to get some rest (even though I'm not the best one to give advise on rest- insomnia).Switch around who stays with your father and have them use the phone if something arises. Stay at a hotel nearby if you can. A hospital is no place for rest for anyone. Plus not to mention the ability to catch something. You can't be with your father if your sick and that would not benefit him either with pneumonia he has (if I remember correctly reading that here).

Hope he get's better nd that you et some rest.
« Last Edit: January 12, 2009, 01:45:25 AM by Chris » Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
RichardMEL
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« Reply #195 on: January 12, 2009, 01:42:11 AM »

Very good idea Chris. I totally agree. Quite apart from getting a break from the hospital environment and hopefully better sleep it's important (I think, anyway) to have a timeout for your emotional well being to recharge the mental batteries  I know it seems like the last thing you'd want to do when all you are doing is worrying about dad and mom etc but I think it's important to have that time out.. relax if possible.. do something for yourself... like get a massage or even go to a movie or meal with a friend. i know that seems so trivial and how can you go out and "enjoy" yourself while your dad is suffering but trust me a few hours away will do the world for your emotional as well as physucal well being (plus getting some good food might really help. Take turns so your mom can get a timeout also. This is not abandoning your dad or that you don't care - far from it - it's looking after yourselves as much as him. I am sure your father would want that too...

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Roxanne610
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I just dont know anymore!!!

« Reply #196 on: January 12, 2009, 12:26:23 PM »

He passed away early this morning at 4:43 am...it is too painful to talk right now im in shock and beyond hurt...
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My DAD:
Cirrohsis at 32 from Hepatitis C,,,,50 Liver Failure from Hep C, 52 Liver Transplant, 2000 Lymphoma from Anti Rejection Meds treated and has been fine. 
Present:  Kidney failure from Meds for the liver transplant
Hepatitis C is very very active which is damaging the liver they are worried that he may need a liver transplant to, but until he is strong enough to get the liver biopsy.  And now he is hit with blood infection that he caught in the hospital ( i feel from nurses being not gentle enough with him)....
Started Dialysis Nov 08...Just waiting to see what the miserable Hep C disease is doing to our liver before we can even think about a kidney transplant!!!! :(

Roxanne  :(
My prayers and thoughts are with everyone!!!
paul.karen
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« Reply #197 on: January 12, 2009, 12:28:24 PM »

Oh Roxanne i am SO Sorry to read this.  :grouphug; :cuddle;

Yet another angle has moved to heaven.

P&K

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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
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lola
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I can fly!!!

« Reply #198 on: January 12, 2009, 12:32:36 PM »

 :grouphug; :grouphug; :grouphug;
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okarol
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« Reply #199 on: January 12, 2009, 12:39:39 PM »


Rox, you took good care of him, you did all you could do. Sending you deepest sympathy.  :grouphug;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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