At home in heaven

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NC
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 12/10/2008 2:31 PM (GMT -7)   
Hi,

I am new to this forum, but after experiencing what I have gone through with my dear, sweet wife over the last 4 month's, I started looking around and found this forum. I am so overwhelmed to read all of the post and know that there are others that have been through this.

My wife was not only my whole life, but the best mother to our 10 year old son, and best wife that anyone could ever hope to have. about 4 months ago, she started experiencing fever, chills, and a great deal of abdominal swelling from fluid. Her physician immediately sent her to the hospital for a battery of tests. Everything pointed to Cirrhosis. The digestive specialist did several more tests, drained fluid on a few occasions, prescribed diuretics, and completed an endoscopy to check for portal hypertension.

She had to get a liver biopsy Trans jugular, as her blood would not clot properly. The radiologist stated when he was finished that her liver was 1/2 the size of a normal liver, and would only say that indicated some scarring. When we met with the GI doc he suggested referral to a Liver Transplant Specialist. Te exact cause was pointing towards Fatty Liver Disease, and developing to NASH. Her MELD was 19. In his words she "may not need a transplant for years" but should get the specialists opinion.

She never had the chance. She suddenly took a turn for the worse, developed fever, chills, diarrhea, and trouble breathing. As her condition worsened, I rushed her to the emergency room where her GI docs were on call, as they were not available for an appointment that day. As she struggled in great pain(here kidneys had begun shutting down)there for 5 hours the ED docs could not get her BP to stabilize, as they tried to insert a central IV line through her neck, her heart stopped and she slipped away.

All I know is that this was a terrible way for anyone to go. She never deserved to go through the suffering that she endured for so long. God may have spared her worse times with this terrible disease, and I know that she is now at home in heaven and will never know pain and suffering again.

My son and I are doing our best to keep going, but I can hardly believe that this pain and empiness will ever get any better.

God bless you all, and my prayers are with you.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/10/2008 7:42 PM (GMT -7)   
Hello NC, please accept my sincere condolences on your beloved wife's passing. And yes it is a terrible way to die. But you're right she's not suffering anymore and in a much better place.

And I know it is hard right now but it will get easier. Just take it one day at a time. I am living proof......time is a great healer......

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.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 12/11/2008 11:45 AM (GMT -7)   
Dear NC,
 
My heart goes out to you and your son, I am going through this with my husband who is currently on the transplant list so I know how horrible this disease is.  I pray everyday that he will get a new liver but also worry everyday that he might not make it. 
 
 
Judith
 
 
 

scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/11/2008 12:12 PM (GMT -7)   
NC,
 
I am VERY to sorry to hear this and my prayers go out to you as well.  That is a very young time to die (I assume she was in her mid 40s) and not even get a chance to get better.  I am very very sorry for your loss. cry
Dave

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/11/2008 3:02 PM (GMT -7)   

NC, I also want to offer my sincere condolences.  I know how hard it must be for you and your son now.  Just take it day to day, and remember the good times.

Most liver patients (I am one), have this disease for many years and the symptoms and suffering go on for many months and sometimes years.  I hope you will take comfort in the fact that your wife went fairly quickly and is now at peace.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Mrs.O
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/12/2008 7:00 PM (GMT -7)   

NC,

I'm sorry for you and your family.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 12/12/2008 9:05 PM (GMT -7)   
NC,

I am so sorry for your loss. I will pray for strength for you and your son during this difficult time. My husband is also on the transplant list, and I, too wonder if he will make it that far. Please take comfort in knowing that she is at peace, and no longer in pain or suffering.

Prayers to your family.....

Mer

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/13/2008 6:28 PM (GMT -7)   
NC, I too am so sorry to hear about your wife. I will be praying for you and your son.
Butterflythree
 
There is always hope!


cdietz19
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 12/15/2008 10:06 PM (GMT -7)   
NC-

I am so sorry to hear of your loss. It sounds like you lost a very caring woman, wife, and mother. As someone else mentioned, this is a cruel disease and it may be a blessing that she didn't suffer a great deal. Either way, it is a tremendous loss and you have my prayers.

autumnrain
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/17/2008 9:57 PM (GMT -7)   
NC it sadden me to read what you went through, I have had to take my sister to ER past week twice and I see her fading and they are not doing alot to keep her comfortable. It truly makes me sick and I am sorry for your son and your loss.

NC
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 12/18/2008 11:14 PM (GMT -7)   
autumnrain said...
NC it sadden me to read what you went through, I have had to take my sister to ER past week twice and I see her fading and they are not doing alot to keep her comfortable. It truly makes me sick and I am sorry for your son and your loss.


Autumnrain,

I can really understand what you are going through. When I took my wife to the ER on her last day, the docs didn't do much at all to comfort her. She was in such pain, they always ask the patient to rate their pain on a scale from 1-10, she kept saying it was a 10. My wife was the strongest person I ever knew, she never complained about pain, in fact she never classified her pain as a "10" during child birth. What really saddens me most of all is that the ER Docs for the most part didn't seem to care, another day at the office. I know that she was fading before we got to the ER, and there may have been nothing that they could have done... But a little honesty and compassion would have gone a long way. Thank you for your warm thoughts, Please know that you and your sister are in my prayers.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/19/2008 1:46 PM (GMT -7)   

NC, I'm so sorry that your wife did not receive comfort care at the time she needed it most.  I think I would write a letter to the Chairman of the Board of the hospital, expressing just what you said here.  Maybe it will help the next person who comes through their ER in the last stages.

How are you and your son doing now?  I'm sure the holidays will be very difficult for you guys.  Just know that our thoughts and prayers are with you.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


windhover
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 12/19/2008 6:47 PM (GMT -7)   
Im  so sorry  im just  starting  this  with my wife. shes older but  i could  be  like  you soon... Im  from NC also....Morehead City.....If  we  can  help  pleade  ask  we  arent  far......Wayne/Cindy

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 12/19/2008 10:46 PM (GMT -7)   
My heart is breaking as I hear these emotional accounts. You are all in my thoughts and prayers. I'm so sorry for those of you who have lost your loved ones to this horrible disease. May God bless each one of you and give you strength to carry on.

End Stage Liver Disease, regardless of its origin, will challenge patients and caregivers to the depths of their souls. My husband is currently in the hospital for the 2nd time in two months (first time for 3 weeks). I almost lost him last month. I will not, under any circumstances, give up on his recovery.

As a caregiver, my husband constantly looks to me for reassurance. I will not let him down regardless of cost. I am his rock. I will not let him see how scared I am. It has been two days since I've gotten any sleep. I have been scouring the Internet for information. It would frighten you to know how little many doctors know of your disease.

The most important advice I can give anyone going through this hell is to learn all that you can and challenge these doctors to do the same. Realize that there are no stupid questions. Demand answers and never go to an appointment alone. Bring a "show of force". Let the doctor know how important you are to your loved ones. Don't be afraid to put the doctor on the spot. Ask them when you can expect to see improvement in your condition. Ask them what other options are available. Do not let them intimidate you! Consider what you have to lose.

May God bless you and keep you. Good luck to all.

Penny

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/24/2008 5:09 AM (GMT -7)   
Dear NC:

I am so very sorry for your lossl How is you son taking it. Keep an eye on him , just in case he needs counseling. You too may need it for a while. Although being on this forum is sort of counsling.

I do have to say she is in a much better place. You wouldn't have wanted to see her teteriorate.
Like so many people do. It is a terrable burden on the caregiver. And you wouldn't have wanted
you son to see her die slowly never knowing when or how. She is certainly in a better place and
God willing our spirits will meat. I am told I am at the end stages ESLD w/chirrosis. But since I dont have all the typical symptoms they dont know how long I have. I am told that the type of disease I have can take you in 48 hours or 5 years (that was two years ago) I am so sick of seeing Dr. for nothing every single week I have an apointment of some sort. MY poor husband is taking a toll. He has to go with me to all ,my appointments because one of the symptoms I have is encepalopathy. I lose almost all my short term memmoru . Which is really frustratomg to everyone. Mostly my husband because he is with me all the time watching me like a little kid .listening to my same stories over and over again because I foget what I just sadid . Tomorrow I shall wake upnot know what day it is and will have forgotten what I wore tonight so I have to read it . For the first time. What a life, I am so sick of it Every time I have a procedure that involves anethesia I hope they give me enough to put me to sleep forever.

This disease is overwhelming. ((Sorry to sound so glum but this was not my retirement plan))

Yes your wife is in a beautiful place , full of joy, and everything she wants shes in the best of the best

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/24/2008 6:55 AM (GMT -7)   
June, Hang in there. I can only imagine what you are going through. Try not to let this get you down. I know that is easier said than done. I wish there was something I could say to make you feel better. My husband has also been feeling down more lately. This disease just takes so much away from a person. I continue to pray for you. Don't give up on that transplant.
Butterflythree
 
There is always hope!


Mrs.O
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 12/26/2008 10:16 PM (GMT -7)   

I saw that I posted here on the 12th.  Yesterday, Christmas Day, my husband died. 

We finally had an appointment at MCV in Richmond last Friday, and were finally getting an appointment set for January for the evaluation for a liver transplant.  The doctor told us if he were put on the transplant list, his condition was so severe that he'd be moved to the top of the list.  We were so happy!  Happy that it was finally going to happen, but I was upset that they didn't do the evaluation when he was there in Oct.

I picked him up at dialysis on Wednesday, and we ended up having to stay for 2 hours, hoping his blood pressure would at least get up to 80, so we could leave.  I had to take him to the van in the wheel chair, but when we got home, he walked into the house on his own steam.  He went to bed, didn't watch tv, just tried to sleep. about 7pm, he asked for the oxygen, and about an hour later said it wasn't helping, so I called the ambulance.  We got to the ER and they were pouring everything in him to get his blood pressure up.  One time I saw it was 46-14.  His sugar was dropping, which had never been a problem before.  He started breaking out in a rash that so rapidly turned into a dark purple raised rash that was all over his abdomen and wrapped around his back.  A surgeon was called down to check to see if maybe it was MRSA.  He was in the ER for about 4 hours as they were trying to get him stable enough to send to ICU.  His heart stopped!  It took them 12 minutes to get a heartbeat again, and they put him on a ventilator and sent him to ICU.  I counted 9 bags of meds they were putting into him.  His pupils were fixed and dilated. They told me it was "touch and go and it didn't look good."  They expected his heart to stop again, and it did at about 9:15am.  We were told in November to NOT sign a DNR, because he may get sick enough to be on a respirator to get him to a transplant.  When they were trying again to get his heart beating, I quickly talked to 4 doctors, and they all agreed that he wouldn't get a transplant.  I had them stop the compressions.  The doctors told me I did the right thing. I'm now second guessing my decision.  Maybe by some miracle he would have come back, or maybe I'm just being selfish and wanting my husband back. I would have been happy to take care of him till the day I died.  I can't help feeling like I've let him down.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/27/2008 7:31 AM (GMT -7)   
((((Mrs. O)))), I am so sorry for your loss. Please do not second quess your actions now..........You did everything you could. I truely believe that everything happens for a reason. Only God knows what that reason is. I know how much you are hurting right now. I was in your shoes in April of 2007. Just take it one day at a time.
When you are able please come back.......this forum saved my sanity in my darkest hours.......Lot's of 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.

Post Edited (Pink Grandma) : 1/1/2009 12:40:09 AM (GMT-7)


itsme
Regular Member


Date Joined Mar 2007
Total Posts : 44
   Posted 12/27/2008 10:33 AM (GMT -7)   

Mrs O

Please don't second guess your actions. You did what was best.

My mom had to make the same decision with her step mother years ago, and one of the doctors at the time told her never to second guess her  decision, he  said it in a rather profound way, I wish I could remember the exact words to comfort you.

My thoughts and prayers are with  you.

Rhonda

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/27/2008 4:18 PM (GMT -7)   

{{{{{{{{{{Mrs. O.}}}}}}}}  I am so sorry to hear of your loss.  In no way did you let your husband down.  I know you loved him and got him the care he needed, even if the transplant wasn't to be.

It's especially difficult to lose someone you love right before the holidays.  You will be in my thoughts and prayers. 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/27/2008 5:28 PM (GMT -7)   
Rebecca, Please believe that you did everything possible for your husband, and don't second guess yourself. I am so sorry for all that you have been through. Your husband is in a better place now and will never have to deal with this terrible disease again. Take care of yourself. I can only imagine the pain you are going through. I will be praying for you.
Butterflythree
 
There is always hope!


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/29/2008 2:47 AM (GMT -7)   
Mrs. O,
So very sorry to hear of your loss. I can not imagine what you have been through, Now it is time to focus on taking care of yourself. He is in good hands now. We were only ment to be here but for a moment. Prayers june

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 12/29/2008 6:21 PM (GMT -7)   
Mrs. O,

I am so sorry for your loss.....do please focus on taking care of yourself. I can only imagine what you are going through right now. But, I do pray that you will find comfort in knowing your husband is not suffering any longer!!

My prayers are with you

Mer

NC
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 12/29/2008 11:28 PM (GMT -7)   

{{{{Mrs. O}}} I am so sorry to hear of your loss on Christmas day.  This sounds so similar to what my wife had experienced.  She never had a chance to be evaluated for a transplant.  I think of all of the hardship she would have gone through hearing that she was on a transplant waiting list, waiting and wondering when and if she would have a transplant, going through all of the test and ER visits.  I would have walked through fire to even have a 1% chance of saving her, but I know that she had given all of her strength already.

I can't say that I know how you feel, because everyone is different.  I can only say that my son and I miss her so bad and hurt so much.  We must take comfort in knowing that our better halves are at peace and have received their reward in heaven.  I know that our lifetime can be a long time to go on without them, but just think eternity is neverending, that is how long we will be together when we are one day reuninted.  Live for Christ and keep our eyes on that final reward.


NC
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 12/29/2008 11:33 PM (GMT -7)   
June,

I know you are fighting hard. Never give up! I told my wife that she was strong and could beat this. God had other plans in her case. Never feel that you are a burden in any way to your husband, my wife said that at times...I would have given my life for hers... Cherish every second. I pray for you that you are one of the success stories.
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