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Posted 5/4/2012 2:49 AM (GMT 0)
Emma,,thinking of you..you have so much going on still.

Today I and hubby discussed making arrangements for him to donate organs (the good ones) when he passes away (if organs are usable.) He is still firm about no transplant for him, so we are finding out what to do and who to notify right away so that his organs can be harvested timely. He said no sense in waiting til the last minute and me not being sure what to do and not getting it done quick enough to save the organs for someone else. I am not sure he can donate being Hep C. Does any one know about this?

This is a heartbreaker to talk about but we are trying to be upbeat and optimistic, yet practical. I have not heard this issue discussed in the forum, but I have only been reading the posts for about a year. Anyone have experience with this?

It gives both I and hubby a little comfort to think that parts of him could help someone else and live on. It feels a bit strange to even be writing this...part of me feels like we should be fighting for him to stay alive, instead of making these plans. The other part is trying to honor his wishes.

It's been a tough day. But ... on a positive note...we went to a Brass Quintet concert Tuesday night and although hubby was shaky he wanted to go. (He has fallen twice this week at the B & B.) He is still exhausted from the 3 hours away from the B & B. If anyone could give some feedback about the above issue, I would welcome it.
Best to all.
Angie1953
Posted 5/4/2012 11:04 AM (GMT 0)
@ Angie,

I was moved by your post.

It is wonderful that you can have end of life discussions with your hubby.  I did some poking around the net and found a CNN article that might be interresting to you and others:

http://hepatitiscresearchandnewsupdates.blogspot.com/2010/10/ten-uses-for-your-body-after-you-die.html

Cut and paste into your browser.

Other articles reported different opinions on whether Hep C tissue can be used for donation...especially in near death cases.

I read that if a person were near death, they could be given an "interim" organ from a not qute perfect donor (Hep C or very elderly donor) to tide them over until more perfect donor became available...a life saving bridge.  It is something to think about.

Wishing you both the best,

Carol

Post Edited (MamaLama) : 5/4/2012 7:28:10 AM (GMT-6)

Posted 5/4/2012 2:40 PM (GMT 0)
I don't have time to read the article right now, but I do know that a hep C patient can receive a donated liver with hep C. I had agreed to this initially; however, they decided they wouldn't do that since I have genotype 1a, the hardest to treat. I had also read somewhere along the line that things like corneas and skin could be transplanted from a hep C patient. Each center has their own criteria, as well, so I would check with the hospital on this. Ask to be connected to someone in Organ Donation.

Hugs,
Connie
Posted 5/9/2012 7:32 PM (GMT 0)
Hello everyone. Hanging in there. Trying to get into work...having a hard time as the day goes on. Mornings are good for me but after lunch I have a tough time. Dreading Mother's Day on Sunday. Feeling out of sorts and still dwelling in the land of "what-ifs". I know I need to stop that, but it is where I am for now. Just trying to take it and deal with it as it comes...don't want to try and push anything away...I know I have to experience and move through the grief as it presents itself...and that as long as I can function (code for don't go into a depression) I just need to experience the grief. That trying to suppress it or force myself to put on a happy face will only give me a false feeling of wholeness. And then sadness will jump up and bite me in the butt when I least expect it...so I just gotta go through it.

Dougie will have another banding on the 29th, and then at the end of June his 6 month doctor visit, labs, and ultrasound. I am certain as these dates draw closer my focus will shift towards being the worry wart for him...more so than usual since I am in a tender vulnerable spot right now.

I have been reading, but not posting much. Just no energy to do it. It fills me with sadness to read about the suffering and illness. But, I think of everyone everyday and send positive thoughts and prayers for healing and peace.

Emma
Posted 5/9/2012 9:40 PM (GMT 0)
Emma, it is so good to see you posting. Whether it seems like it or not, you are moving forward. I totally agree with your feeling and expressing your emotions instead of denying them. The "what ifs" are a game best not played, though, as nothing will change the outcome. It was her time and only God knows why.

That Mother's Day thing was always hard for me. I was estranged from my mother, so had no communication with her (my choice, due to her alcoholism and resulting "wet brain.") But it was a day of mourning for me, for what never was and never would be. In your case, your heart will hurt, but you can remember and celebrate all the good times and things about her. Rejoice in that.

Hugs,
Connie
Posted 5/10/2012 12:23 PM (GMT 0)
Prayers and thoughts your way Emma.... Sandia
Posted 5/11/2012 12:29 PM (GMT 0)
Emma,
Thinking of you and hope this weekend finds you doing things that bring joy to your soul.
Angie1953
Posted 5/11/2012 2:01 PM (GMT 0)
Emma,

Thinking about you again this morning.

Carol

Posted 5/14/2012 5:44 PM (GMT 0)
emma, thinking of you.
angie, you too.
lots of thoughts and prayers to all on the forum. i dont post much at the moment but you are all always in my prayers.
xxnatasha.xx
Posted 5/14/2012 5:50 PM (GMT 0)
Hey, Natasha, what's up with you? Hugs, Carol
Posted 5/14/2012 5:50 PM (GMT 0)
Natasha, very nice to see you here. How are you doing these days?

Hugs,
Connie
Posted 5/14/2012 7:30 PM (GMT 0)
thanks natasha. hanging in there. i am not posting much at the moment either.

i hope that you and your boys are well.

best,
emma
Posted 5/15/2012 2:29 PM (GMT 0)
Natasha,
Good to hear from you. Yesterday was tough. Was our anniversary, but hubby is so out of it, he really didn't remember...or care. But I and my Mom went to the B & B and had fudge sundaes with him in the afternoon and he wanted to go out to the grocery store and buy a jar of pickles.
So I went back to B & B about 8:00 PM and we went on a "pickle date" to buy a jar of pickles. Was only a 15 minute trip, but he enjoyed it. I have to admit...I cried on the way home once by myself. Feels really lonely sometimes when he is mentally so "gone". But...I am lucky to have somewhere that takes care of him. So many caregivers are doing it all themselves.

Natasha...think often of you and your kids...and Emma, hope you are able to find some things to enjoy. Nice day here today and plan to go mow the yard, and work with the ponies. Best to all.
Angie1953
Posted 5/15/2012 4:34 PM (GMT 0)
Angie,

I am sorry for your rough day, I know what those are like. It is good to have the animals to take care of. I know what to do for them, although another of my little babies died yesterday. She had her head in the water dish and must have gotten sat on by one of the other birds. Turkeys aren't really that bright. I moved the waterer up a little higher so that that can still reach it but not fall in (hopefully )  Enjoy your good weather and the smell of the cut grass (no offense to anyone with allergies )

Headed back to the Dr today ( the one I don't like  ) because although he was doing fine with the IV fluids, now that he is just drinking them, he can't seem to pee. Trying to balance the good fluids with the bad ones is not easy. I think the spironolactone and lasix may have contributed to the dehydration, but if he doesn't take them it will be worse I think.

Lahey moved our appt from June 22 to June 7. Can't get there quick enough. Oncologist on Friday. Somehow I have to find a way to spend time at work, so we can stay insured. Now I think I have a sinus infection. He got a pneumonia vaccine, but I hope I don't give him this. Crap

Marie

Posted 5/15/2012 4:48 PM (GMT 0)
Marie,

The life of a caregiver is hectic and emotional.

You say you need to spend time at work to keep up the insurance.

AND you need to get enough rest to stay well....as now you have a sinus infection on top of everything else. 

Sending rest and relaxation to you via the Internet...

And hug,

Carol

Posted 5/15/2012 5:11 PM (GMT 0)
Thanks Carol,

Well, I will get over that, won't I? It just makes you feel crummy. I slept like the dead last night, even though he was coughing quite a bit. Normally that keeps me awake worrying that he can't get a good breath. But not last night - I didn't hear a thing. I plan to do the same tonight. The house looks like a bomb went off in it after all the wedding visitors and commotion, but I just don't have the energy to care. Craig said he would tidy up! Ha ha, that is the funniest thing I ever heard. He doesn't have enough energy to set down his glass. I have to take it out of his hand. What a sweetie. I hope he will be more comfortable  tonight.

I don't usually get sick, but I think I am a little run down. And my daughter has bronchitis. We were texting each other from different ER's on Sunday night. She is feeling better, but I must have kissed her too much on Saturday, LOL. It was worth it!

Thanks for the good wishes.

Marie

Posted 5/16/2012 12:32 PM (GMT 0)
Me again,

We went back to his GP yesterday, as he has stopped urinating, he did while in the hospital, but he was on an IV the whole time. So now, he is still a bit dehydrated, so the Dr told him to stop taking the diuretics. He is having an ultrasound this morning to see how much of the swollen abdomen is really fluid. Oncologist on Friday. The CT scan shows that he has a tumor pressing on the upper left lung ( causing some of the breathing and coughing ) and one on his larynx which is wreaking havoc with his voice. 

So for the moment, the only meds he is taking is the Ativan for anxiety and to help sleep and he is going to try Megace to see if it will give him an appetite. On Friday, I guess we will talk with the oncologist about some palliative care. It is possible that he could have some radiation if they can isolate the tumors causing the problem. Chemo is out of the question and he wouldn't do it anyway. Which I completely understand.

The GP kind of poo-poohed the idea of going to Lahey, as I knew he would. Craig says I hurt his feelings by suggesting he might need a liver specialist. He (the doctor ) said we could do all of that treatment without going all the way down there. I think we will go anyway. A second opinion can't hurt and I am sure that Lahey can suggest a palliative care plan as well.

Wow, I typed all of that out without crying. At least I have a cold so I have an excuse for my red eyes and runny nose at work today.   

Peace, Marie

Posted 5/16/2012 1:04 PM (GMT 0)
Go to Lahey.
Posted 5/16/2012 1:10 PM (GMT 0)
: )

Thanks David!  June 7th, they moved it from the 22nd and said to keep calling if we don't hear from them. If they get a cancellation we will go sooner.

 

Posted 5/16/2012 5:02 PM (GMT 0)
Marie,

The patients who have strong family support do pretty well here.

Sounds like if it were up to you, you would have climbed Mt Everest without oxygen to get him the care he needs.

His path may be difficult.

My prayers to both of you as you travel together.

Maybe Lahey will have a better protocol to consider.

Hugs,

Carol
Posted 5/16/2012 5:52 PM (GMT 0)
Thanks Carol.

I just spoke with my husband on the phone, he had an ultrasound this morning. The tech was pretty open with him and showed him where the fluid was, he said that they would probably drain 40 pounds of fluid from his belly!!!!!! My God, if that is true he will come out weighing 130 lbs. : (  This is a guy who was a lean, muscular 6 ft 185 lb fellow from his 20's until last year when he finished the chemo and radiation.

 He also said that sometimes the patients come back in 6 months to do it again, sometimes in a week. I guess we will just have to see.

I am a little scared of the risk of bleeding, but he is so miserable, maybe it is worth it to feel better. I wish that appointment were sooner. I would rather have them attempt it than Dana Farber. Well, one day at a time.


Keep the faith,

Marie

BTW - do any of you have any experience with Megace, it is an appetite stimulant?

Posted 5/18/2012 7:42 PM (GMT 0)
Hi, Marie. Is he currently urinating okay or does he have a catheter? I know he will feel much better after the draining.

So glad that you got a sooner appt. with Lahey. As for the GP's reaction: No doctor worth his salt would object to a 2nd opinion. In fact, they often suggest it themselves or provide MD names if you mention wanting a 2nd opinion. I think I would change to a different GP.

Hugs,
Connie
Posted 5/19/2012 12:52 AM (GMT 0)
Hi Connie,

I have felt that way about this doctor for a while, but my husband seems to like him. He didn't actually object, but I think he doesn't see the necessity to go all that way when the care can be done more locally. It doesn't matter we are going to go to Lahey anyway.

In the meantime, I am a little concerned. He is off of the diuretics and his belly is getting harder, at least it seems so to me. He is urinating now, so I am sure that was just the dehydration. He was supposed to see his oncologist today but there was an emergency, so now he is scheduled for the paracentisis on Monday, and then immediately following, he will see the oncologist. It will be done in the hospital, but I am concerned about his blood pressure when they do it. And bleeding.

I am hopeful that he will be more comfortable, but so nervous that he isn't healthy enough to do it. Do you think that as long as he is in the hospital that they will be able to control any complications that might arise? I won't hold you to it, but I think you have had this procedure before?

BTW, how are you doing? Did you get any rest? I know it is easier to rest at home than in the hospital, for sure.

Peace,

Marie
Posted 5/19/2012 6:04 PM (GMT 0)
Well, I am so pissed off at the nursing home yet again....and myself. I let my guard down just a bit and felt like they were doing a good job taking care of hubby, BUT found out yesterday, they charted, "NO BM for 6 days" ...and they did NOTHING different to fix it. (he is taking miralax and lactalose regularly, but that wasn't working, I guess)

Yesterday when I went to visit he was swelled up and very emotionally troubled and after spending some time talking to him to find out why he was depressed, he kept saying, "we have to fix this" and he didn't make much sense until he said "they aren't taking care of my medical needs, I haven't pooped for 6 days." I thought he probably was just confused and didn't recall pooping,...but decided to have them run out the medical charting...and sure enough...they were charting that he hadn't pooped for 6 days. What the Hell?

I immediately went to the new Administrator, who was previously the Director of Nursing, who was promoted last week. I showed her the charting and she confirmed that SOMEONE should have done something...NO KIDDING!! I packed some of hubby's things and brought him home and had the staff package up his meds. Told them he was visiting home for awhile (with the weekend coming the Director of Nursing was not working, nor adminstrator) I called his Doc, who is out Fri, Sat and Sun, so he is home and we (he and I) are working on getting him to poop. Lots of lactalose, lots of milk shakes and smoothies, feet propped up to help the edema in his ankles (which Nursing Home never even noticed). I know that this nursing home has a dismal record, so I shouldn't be surprised. Perhaps this is why no one else seems to keep their ESLD relatives in a NH...anyway doesn't seem like it.

I feel so guilty that I didn't keep more on top of the NH staff over the last 10 days. My Mom (85 yrs old) came back from AZ 10 days ago and was staying with me, so I was distracted. But that is not an excuse. I know better !! Just going to kick myself this one time and then do better.

Thinking of you Marie...hope the weekend goes smoothly for you and husband.
Angie1953
Angie1953
Posted 5/19/2012 6:12 PM (GMT 0)
Oh, Angie, this is not good news. Why on earth do we have to keep such a close eye on our loved ones...in NH or Hospital? They have increased the patient to staff ratios so much that they can't really look after things so well I think. I cant believe no one cares. I think they just can't do more with less infinately. At Mike's hospital they announced there were going to be thousands of layoffs but health care would not be impacted...how is that...no cleaners, no a/c repair persons, no laundry service staff, just doctors changing the bedpans???? HAH.

I'm sorry this is happening (again) Angie.

Let us know if you get him stable again to have him return.

I guess you DO have to keep an eye on them all the time.

He doesn't seem to be unhappy there. How is it that he didn't call you about this if he was able to articulate it to you?

Hugs,

Carol
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