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Helping deal with the depression while waiting/praying for TP

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Posted 8/13/2014 3:46 PM (GMT 0)
Hi all,

Haven't posted in a few days and although I have a thread, I think this is a topic aside from that. Where a general question and advice on how you dealt or are dealing with the depression of a loved one over all of this. In a perfect world everyone would be positive and fight until the end, but realistically, there is many down moments for both the person and the caregivers.

This all came about because my mother called me last night very upset saying my father went from good mood to refusing to eat saying what is the point? All he is doing is waiting to die. She let him be a while, but sure enough by days end he still refused to eat still saying there is no point in even trying anything and to let him die.

Obviously this was a weak moment which is to be expected, but as a caregiver how can you motivate and get them back on board? Or if you are going or went through it, what helped?

It feels terrible because part of being listed is having a strong support team. When he feels that way, I feel we are failing him in a way. I couldn't make it there last night but I will today.

I am worried as I will be gone on business most of next week.

LS: I edited your title so more members could find your post and offer support.

Post Edited By Moderator (MamaLama) : 8/26/2014 6:48:47 PM (GMT-6)

Posted 8/13/2014 4:06 PM (GMT 0)
Ok, so what has changed? Your Dad was going to head to Iowa for an eval, and he was out of the hospital. The transplant team at Loyala was working with your on the Iowa dual listing. What happened with that? Big Hugs
Posted 8/13/2014 5:04 PM (GMT 0)
Hi Lostson,
I am sorry to hear that your dad is getting depressed. It is a difficult time for him as many things are going through his mind... Things that you, your mom and your family can't understand, no matter how supportive your family may be. He is probably worried, stressed, overwhelmed, and going through a bunch of other emotions too. What he is experiencing is natural.
I would reach out to your transplant team social worker. Speak to him/her regarding what your dad is going through. They may be able to put you in contact with a local support group or someone locallly who has been through the transplant process and can speak directly to your dad. In the meantime...continue to support your dad and maintain a positive outlook when in his presence. Continue to encourage him and motivate him... All the things you have been doing all along.
If he still refuses to eat, make sure he drinks a protein drink (ensure, glucerna, boost, etc.,.)
How are things going with having him dual listed? How far have you gotten in the process? Does he still have the Friday appt with his transplant team? Has he met the requirements for finishing up the AA classes? Please keep us posted.
Posted 8/13/2014 5:36 PM (GMT 0)
TM & WD,

He has an appointment for yet another LVP today and his follow up on Friday. He is soooo close to finishing his classes but his time in the hospital set him back and he hasn't been able to do much since being home so he is still 5 classes away. The good thing is that our TP team is aware of this and are letting him recover a bit before he goes back.

However, my fear now is that Iowa will require a whole new set of time or something more severe.
Posted 8/13/2014 6:25 PM (GMT 0)
Hi Lostson.
I read on your other thread that your dad has an appt with Iowa? I hope that with your father knowing that, it will motivate him and help him get out of the depression he is feeling.
Btw... When is your appt scheduled for? Did they give you an outline of what your visit will entail?
This is definitely some good news :-)
Posted 8/13/2014 7:35 PM (GMT 0)
The appointment is for early September (So just 2 weeks away)

I am not sure 100% of what it entails but I was told it's a 2 day process and to expect much of the same that we went through with our current place.
Posted 8/13/2014 7:47 PM (GMT 0)
That sounds great! 2 days is not bad. My mom had to go for 5 days when we dual listed her...lots of doctor appts, tests, scans, meeting with various members of the transplant team, etc.,. I assume that they are accepting most of the tests your dad had done at his current facility? Did they give you specific instructions or information to prep for the appointment? I am very very happy for your dad... Steps in the right direction!!!
Posted 8/14/2014 12:01 AM (GMT 0)
WD,

The coordinator we will be working with said she would get me all of the details/agenda tomorrow. I hope they accepted most of the tests.

I am trying not to get too excited but I can't help be very happy. My brother and sister are on board with going along for the 2 day adventure to show support. It will be nice to all be together.

I also feel that we have another life line (Assuming all goes well) I think we all look at how my dad barely gets through the day now and wonder how he could possibly last to a MELD of 35+

I hope a miracle is in our cards!
Posted 8/14/2014 12:54 AM (GMT 0)

Worried daughter2 said...
That sounds great! 2 days is not bad. My mom had to go for 5 days when we dual listed her...lots of doctor appts, tests, scans, meeting with various members of the transplant team, etc.,.

[email protected] is your Mom doing? I would really love to hear an update? Everything more or less, back to some normalcy for your family? Big Hugs
Posted 8/14/2014 1:05 AM (GMT 0)
Alex, Your Dad has dealt with some depression from your posts recently. We have our days around here, as well. Both of us. It would not be normal to have all positive days with such illness. I would be depressed too, if I was sitting on a transplant list feeling like junk. Does Dad take meds for depression? Oh, and I wondered if HE is part of his struggle? That really makes for some nastiness and negative emotions.

I am glad he is getting dual listed. Too high of MELD where he is located. Honestly, I think he will be really close to the top of the list if he is accepted at Iowa. But I am thinking they likely will require the 6 months documented AA, as well. I wish that was behind him. If he is already on the list, is this AA portion for continued sobriety help, or ??? I have not heard of this before. He is well past 6 months, correct? Hang in there Alex, it is getting closer. Big Hugs
Posted 8/14/2014 1:41 AM (GMT 0)
Well I was pretty blunt with Mike... I just told him wasn't over until it was over.. and I was pretty tough with him.. he laid around in bed. I came home one day and told him to get his rear out of bed and get moving... and this was not typical for me... he laughed and said darn girl.. it helped..
Posted 8/14/2014 2:39 AM (GMT 0)
Alex, I Had fought with those emotions for over a year. Highs and bottomless lows. Wondering if it's all worth it. Wondering if all the struggle is for naught. I was hurting and my family was hurting just watching me fade away. Like being trapped in a nightmare with no chance of waking. I'd presume this is what's going on in his head. HE can and does add fuel to this fire. If your just conscious enough of your surroundings you see and here things that aren't truly there. Your mind wants to hear positives but your thoughts, If you dwell on them will twist positives into negatives. All he has at this moment is lots of time to think. Not such a good thing.

Hard to see the forest for the trees. Only good thing about those times was being able to sit here now and reflect on the things I learned from all that thinking I did. Sometimes you have to walk through hell to get to heaven. Makes the days we have left here all the sweeter once you find your way to decent health again. My worst bad day before this disease looked trivial. There are no bad days, I'm alive. In the end that's all I asked for anyhow, Not in the hospital clinging to a thread alive, but really alive.

Alex, I'd suppose we all go through those motions when the cards are stacked so high against us. He's gonna have to soak in the pain and anguish. It'll make a great man a even better one when this is over. He shouild be taking some form of light anxiety meds but that's solely dependent on how well his organs are plugging along. Can't afford to damaged the stuff he has left, Ya know. It's tough buddy. The best thing you can really do is keep him preoccupied in other thoughts. Idle time physically or mentally is his worst enemy.
Posted 8/14/2014 2:46 AM (GMT 0)
TM, he is not taking meds for depression. In fact he hides his emotions. I too hope he is at the top of the list. He has now been sober for 13 months. But of course he is still not fully through his AA classes. It is amazing how they do work though. He will often say how he wishes he knew back then what he does now.

When I told him about Iowa today, he did seem to change a bit to the positive. I too am a bit tough and tell him to do his part to make it. To do all he can and not give up. Sometimes tough love works better on people!
Posted 8/14/2014 1:30 PM (GMT 0)
I agree with TheMiz...your dad will probably be at the top of the list at Iowa...since you mentioned they transplant with meld of 22 and your dad is higher than this ( I couldn't find where u indicated his last meld). Your dad just may be going there for the evaluation and then coming home with a new liver ;-)
Glad the news of your trip to Iowa is making your dad change a bit (in a positive way).
Posted 8/14/2014 7:28 PM (GMT 0)
He is currently listed at 25. I've noticed the definite downtrend on his health. He is much much more on the thin side. He is bruised all over. I'd say his arms are more purple than his actual skin tone.

His days consist of eating in bed. He doesn't get up much but he makes it a point to at least walk a bit even if he gets exhausted.
Posted 8/14/2014 9:09 PM (GMT 0)
Hi Lostson,

Did u hear back from the Iowa coordinator w your dad's schedule?
I forgot to ask what blood type is he?

The thinness that you see is the loss of muscle mass. Liver disease eats away at the muscle. You may also notice that his face looks a bit drawn especially near his cheeks. The bruising is probably due to the low platelets. Do you know what his platelet count was on his last blood draw?

How's his bilirubin level? I remember you had mentioned in the past that it was high. Does he look jaundice?

That's good he gets out and goes for walk... Exercise is important!

Post Edited (Worried daughter2) : 8/14/2014 3:12:04 PM (GMT-6)

Posted 8/14/2014 10:02 PM (GMT 0)
WD,

Yes I heard back and we have the schedule set up. I am already making hotel and transportation arrangements for the stay. It's very exciting yet scary at the same time. Hope all goes well during his eval. He is much worse during this one than when his first one 8 months ago. He does look jaundice and his bilirubin levels are at around 7.4. His blood type is O.

Ziff,

It sure is a reality check and even for me a caretaker, I think back at things that I thought were the end of the world or thought caused me sadness and it was nothing to this scenario. Knowing its a race against the clock and need luck on our side. That's it...there is no alternative. We know what is the only hope and that makes for a ton of stress. But I bet if all turns out well...I'd imagine his outlook on life will be much different. I know mines will.
Posted 8/14/2014 10:25 PM (GMT 0)
LS,

Did you find out what the average transplant MELD score and wait time is for your dads blood type? I read that 22 is average, but is brought up by more rare blood types. I saw alot of people having them done at like 19 or 20 when I was checking out the transplant stats.

 

Looks like 17 currently blood type O on the list in Iowa. I do not know MELDs of current people on the list, but only 1 was less than 30 days wait, 3 had less than 90 days wait, 4 were 1 to 2 years 5 were more than 2 years.

I would assume anyone over 2 years just still has a low MELD to not put them ahead of someone. I am hoping for less than 3 months for your pops.

I really hope it goes well for you there!! Just remember, your a Hawkeye fan for life if you get a transplant there. KIRK FERENTZ!

Posted 8/14/2014 11:40 PM (GMT 0)
I would for sure become a Hawkeye fan for EVER! I hope it happens. Where did you find those stats? I tried looking that type of information up with no success. It would be interesting to see the numbers at Loyola. It's great to know. So If I am understanding right, those over 2 years is probably because their MELDs are low? I thought perhaps there just wasn't any available livers for transplant.

When asked I was told the average MELD is between 22-25 not necessarily for blood type O but overall.
Posted 8/15/2014 12:21 AM (GMT 0)
I "think" that blood type O can only receive from a blood type O donor. But I am not sure about that. I read that patients with O blood type wait longer on average, and patients with B, A & AB blood type wait a shorter period of time. Again, I am not sure if that's accurate. You ask the coordinator when you meet with him/her.
I would definitely ask the coordinator the questions directly as any information on websites is only updated every few weeks.
Posted 8/15/2014 12:46 AM (GMT 0)
You can be placed on list at MELD of 15 or 16 depending on facility. But if someone hovers around 16 for a long period of time others could jump in front. The blood type thing is right I think to, but wait times did not seem to long.
Posted 8/15/2014 12:51 AM (GMT 0)
The blood type is correct. That is one of the things that came up in discussion last visit.

Syxx where did you see the stats? Also, I didn't forget to ask about the BMI requirements if any. Any other questions you want me to jot down?

17 is much shorter than here. Where he was one of 435 or so....Wow
Posted 8/15/2014 1:08 AM (GMT 0)
Unos stats. I will send you link if someone else does not before tomorrow.
Posted 8/15/2014 2:12 AM (GMT 0)
Sean, I found it. Thanks this is interesting information.
Posted 8/15/2014 2:58 AM (GMT 0)
LS, Don't stress about the blood types....it sort of works out...fewer folks have other types than O...so there are fewer requests and fewer donors. Once you do all you can do about listing and testing and preparing, the rest is up to the gods (as you know HIM/HER/THEM). Some don't make it along the way, and that is sad.....but your Dad and your family is doing everything possible to help this toward a positive outcome!!!

Hugs,

Mama Lama
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