How do I deal with my dad's wait on the liver transplant list?
October 15, 2010 9:49 AM   Subscribe

My dad in on the waiting list for a liver transplant. What can I do to handle the wait as sanely and gracefully as possible?

Due to a fluke of genetics, my dad needs a liver transplant. He made it onto the list at one of the most reputable transplant centers in the area, but his liver, and therefore general health, is rapidly deteriorating. To be perfectly blunt, he's dying. If he gets a new liver, none of this damage is irreparable, but it's a race against time right now. I know that patients often defy these expectations, but the doctors have estimated we have about six months.

I live pretty close to my parents, so I visit a minimum of once a week. During these visits, my main goal is to take care of as many household tasks as possible, spend quality time with my dad, make sure my mom has someone to talk to, and to play the role of the generally bright, sunny, helpful daughter. I think I do a pretty good job of helping to take care of everyone. What I don't know is how to take care of myself.

My friends, my boyfriend, my boss, and my family have all been supremely supportive and let me ramble about it whenever I want, but at this point everyone knows the situation and although it's constantly on my mind, there isn't much new to say, so lately I've just been keeping things to myself. I also can't help feeling like I'm being sort of melodramatic about all of this--he could get a transplant and be totally fine. I know that our program does have a counselor for the patient as well as for the family members involved and I plan on making use of this resource as soon as I get all the contact information. My mom is pretty anti-counseling, so it's going to be a bit awkward to have to go through her, but I think it will be worth it.

So, time for some concrete questions:

1.) Have you or a loved one been through this? How did you cope with the months of watching someone you love die painfully...maybe?

2.) Do you have ways of dealing with long term stress? I can handle being under short bursts of intense pressure--I do that at work and did that at school just fine. But I am not sure how to handle the coming months of this. Just in the past month, it has been taking a toll on me.

3.) How did you handle interactions with the outside world? I am trying to be as normal as possible, but I end up feeling like I have to be "on" all the time and it's exhausting.

Thanks so much for any advice you have, guys. I am at such a loss.
posted by chatongriffes to Health & Fitness (14 answers total) 1 user marked this as a favorite
I have a friend who, several years ago, went through exactly this -- waiting for a liver transplant for her husband who was acutely ill and getting sicker by the day. He spent many months in the ICU on life support, and it was really touch and go.

She is not even remotely a religious person, at all, but she developed a habit of going to evening services every day, at a different church every day. I think she duped some, but only out of necessity. It wasn't about a religious thing or a belief in a higher power or anything; she said "I just want to go to a place where I'm surrounded by people who think things are gonna be all right." She sat in the back and didn't participate in prayers. Then she would go to a 24 hour diner and eat bacon and eggs for dinner.

Yeah, it's an unconventional approach, but it was an unconventional situation, and it let her make it through each day. Her husband got his liver; she is still a completely areligious person.
posted by KathrynT at 10:20 AM on October 15, 2010

I went through a similar experience with my dad. I'm not entirely comfortable sharing on the open internet about it, but if you'd like to talk with me about it, feel free to send me a MeFi mail.
posted by EatenByAGrue at 10:29 AM on October 15, 2010

I haven't had this situation myself, but I've been around people who have been in a couple of similar situations.

The best advice I can give is the old "secure your own mask before helping others" adage: you can give the best care possible to others when you know that you have been good to yourself. Give yourself time and space to exercise, clear your head, eat right (with the occasional junk time to keep you sane), all that. YOU are your first priority.

Make it known, discreetly, to everyone around you who you feel would treat the information with respect. Do NOT feel bad about begging off to take care of your family or take a break for yourself. Do NOT feel bad about taking time off from a less-important family thing to be your regular self with your friends, either.

Your office may have an Employee Assistance Office that can help you deal with work/life balance questions. Check with your supervisor about FMLA issues, but check with the EAO for resources on long-term care and caring for yourself.

Routine is great, not only because it can help keep you on an even keel but it can help you count days while monitoring ups and downs -- or not, if you so choose. Whether you have activities on your own or things to do with your family, they serve as handholds so you can orient yourself to wherever you are.

Find those people and places where you can be comfortably alone in a crowd. In another thread about a coworker facing divorce, I talked about what I refer to as "being in someone's orbit" -- knowing that someone is nearby, even if you're not actively doing anything. Those people who will let you come over and watch TV, who will do a project in your backyard with you, who will take you to the library or bookstore and leave you in a chair but come back to check on you.

If you have a hobby, things like knit nights are perfect for this. You can sit in a corner and be okay just listening and knitting, or you can join the conversation even if you don't know anybody. And nobody expects you to actually knit :) I find Sunday afternoons very calming this way; even though I rarely talk with the ladies at my LYS (at least in that group), it's comforting to listen to other people and know that nobody expects anything from me. (Also, yarn is incredibly comforting to pet. Knitting = fantastic; you should do it.)

A tougher aspect of this:
My former mother-in-law had always had some health problems, but she suddenly developed a terrible blood pressure issue that put her in the ICU receiving last rites in the middle of the night. She was touch and go for a few days, spent 13 days in the ICU in total, but then recovered quite a bit, albeit with things like memory loss and extreme fatigue.

When you're in a situation like that, flipping between life and death so much, it's hard to know what to feel. Obviously we wanted her to live, but at what price? And when we had all spent so much time sitting and waiting and becoming known by the people at Subway and buying sweatshirts in the hospital gift shop... to go home and try to come up with some semblance of normality again was so difficult, because we had expected her to die and had willed ourselves to be strong for THAT... and not anything else.

So here we were, emotionally depleted, and she was still here and had an uncertain quality of life ahead of her, and we knew that there was a very real chance that we'd have to go through this again. (Which we did, about a year and a half later, when she finally passed away due to a fluke infection.) That's a terrible, terrible piece of guilt to live with, but we knew that we did everything we could to help her get as much as she could out of what she could do.

You need to give yourself every chance you can to let these feelings out. Write in a diary, go to the batting cages, tell your trusted friends outside of the situation, go to therapy (very, very useful right now; please go if you can), tell the internet, whatever. Do NOT let them build up. And cultivate time with different factions of your family so you can let your differing feelings come out in differing ways.

Look, this is a terrible, tough situation -- potentially solveable, but very tough. The good part is that EVERYBODY KNOWS IT. If you break down, so what? You're normal, and that's an appropriate reaction to have. So just be honest and go with what feels right to you.

posted by Madamina at 10:44 AM on October 15, 2010 [3 favorites]

Would it work if you ask your boyfriend/friends (individually?) if you can have, say, one hour a week to just bitch and moan about it as an outlet, and they will be there to help you get through it. No expectations that any solutions need to be offered or accepted; just time to let it all out so you can keep it together for another week without constantly mentioning it all the time.
posted by CathyG at 11:45 AM on October 15, 2010

I'm so sorry to hear about your dad. My father was placed on the waiting list for a heart transplant in April of 2009. He was admitted to the ICU for the duration of the wait, which was about two months. He received a donor heart and is doing great.

Waiting for the transplant was one of the most stressful times of my life. My father is not an old man (56 at the time) and we all had to get really used to the idea that he might not be with us for much longer. He'd been ill on-and-off for the last decade, and I guess I had less trouble with it than I maybe should have because I knew that for the last 10 years he'd been living on borrowed time. It helped me to have a really realistic set of expectations regarding his health. Any bit of information his doctors gave, anything I could find on the internet, any anecdotal information from friends-- I crammed my brain full of as much information as I could. Our family made a point of not sugarcoating any news, and we all knew what his odds were-- odds of living with the bad heart and for how long, odds of dying during the surgery, odds of living to one year, five years, ten years, etc. Knowing in cold hard facts what the averages were and what the "normal" outcomes were helped me more than anything else. Though it (of course) made no difference, it made me feel during that time like I had some handle on what was happening.

I live and work about an hour away from my parents, and about an hour and a half away from the hospital where he was admitted pending the transplant. When he was first admitted, I spent a LOT of time running back and forth. After a couple weeks, we all sort of realized that we couldn't keep that pace up. My grandparents, aunts, uncles, cousins, and famliy friends helped shoulder the responsibilities they could, but in the end my mom was fine taking care of everything herself. By the second week of his hospital stay, I made one trip a week. I'd spend most of the day in and around the hospital, bring dad stuff he wanted, chatting with nurses, just hanging out with him and my mom. What I had to accept (and what you might have to accept) is that there is literally nothing you can do to make this any better. No amount of activity on your part will speed the process along, or make a liver avilable, or ensure his recovery when he does get a transplant.

The best advice I can give you is just what worked for me: live your life. Go to work, go to school. Your friends and colleagues need to know what's up, so don't feel like you need to withold information. If you need to lean on them for support, lean away. Only they can say for sure if you're being melodramatic or not, and frankly, even if you were it's not like they're going to call you out on it. You need to do what makes you feel better. For me, continuing on with my life as normal was the only thing that worked. If I'd stayed away from work I think I would have gone crazy. I still went out with my friends, I still hung out in bars, I did exactly what I did before. I just made absolutely effing SURE that my cell was on me, charged, and on at all times.

My heart absolutely goes out to you and your family. I feel like this is getting a bit tl;dr, but PLEASE message me if I can help you out with anything.
posted by kella at 11:57 AM on October 15, 2010

When my dad went through a health crisis, I did a lot of the same things you describe to help myself cope. Mostly I tried to keep busy doing useful things -- finding books to read out loud to my dad in the hospital, keeping out-of-town family members informed, making sure my mom and sister still ate food and brushed their teeth and remembered to try to sleep at night. I'm more of the stoic sort, not usually comfortable leaning on anyone else in times of trouble. But during that time, one of my friends said to me, "It's ok to not be ok." That has really stuck with me. You don't have to hold it together all the time, and nobody who knows what's going on in your family will expect you to. Even though there's nothing they can do to fix the situation, the people who love you can be present while you rage against the universe or cry your heart out or even just stare blankly at a wall for an hour. If you would rather do those things by yourself, that's fine too. I remember feeling like I had to find all these strategies to help me deal with everything, but the reality is that the situation is awful. It's ok to not be ok.
posted by vytae at 12:03 PM on October 15, 2010

I am really sorry you're going through this.

1.) Have you or a loved one been through this? How did you cope with the months of watching someone you love die painfully...maybe?

Yes. When I was 29, my mom was diagnosed with cancer. I'm an only child. She died six months later.

I lived in DC and she was Baltimore - I drove back and forth a lot to help her. When I wasn't there, I watched a lot of really stupid TV and read absorbing books. I went to work. I was fortunate in that I worked at a place where a lot of people had lost people they loved, had taken care of them when they were sick, etc. (it was an organization full of gay men), and they had a depth of understanding that I'm still grateful for.

2.) Do you have ways of dealing with long term stress? I can handle being under short bursts of intense pressure--I do that at work and did that at school just fine. But I am not sure how to handle the coming months of this. Just in the past month, it has been taking a toll on me.

I punched my futon couch. Seriously. Periodically I would feel like I was losing it and I'd just whale on the couch. Exhausting, and cathartic. I also did my best to let my friends help me. I found that friends who had really specific ways of offering help were most likely to get a "Yes, please," from me, because I was too mentally exhausted to come up with stuff myself. So, for instance, friends who said "I'm doing laundry on Saturday, and I can come by and pick up whatever laundry you need done and do it," or "I want to bring you food, because you need to eat. I can bring you [dish] or pick up your favorite thing from [takeout place] - do you have a preference?" If you can be clear with people in your life what would work best for you, do that.

3.) How did you handle interactions with the outside world? I am trying to be as normal as possible, but I end up feeling like I have to be "on" all the time and it's exhausting.

I know. And you don't have to be. Again, I was lucky in my workplace, because no one expected me to be emotionally "normal" all the time, but even out in the world - at the grocery store or on the metro or whatever, I eventually quit feeling like I had to be nice and stuff. It was too exhausting. I had limited reserves, and I hoarded them as best I could.

One thing I didn't have to manage was dealing with different parts of the family. My parents divorced when I was young, and my dad had died a few months before my mom was diagnosed. She was also an only child, and her parents were dead. So it was just us. And on the one hand, it was terribly isolating and hard, and on the other, I didn't have to worry about what to say/how to act around different family members.

Do the best you can. Don't beat yourself up if you behave "inappropriately" in a situation. Try to let your friends take care of you. You don't have to be a rock all the time. You might find that some of your friends go a little weird over this, if they've never had a parent be seriously ill or die. They're not bad, just freaked out. Don't worry about it too much if this happens.

Please memail me if you want to get together for drinks/coffee/food. I don't know that I can do much, but I can listen, and I've been through similar stuff. Be well.
posted by rtha at 12:24 PM on October 15, 2010 [1 favorite]

While my father was a transplant recipient (heart, July 09), I found the health issues and hospital stays were much more stressful before the decision was made to place him on the transplant list. That surgery seemed almost anticlimactic, since he was showing signs of recovery almost right away. People now have a very high survival rate from these surgeries due to the advances in anti-rejection medications and methods (although they have their own side effects).

Since Dad has been deemed suitable to go on the list, this means you (hopefully) are not going to be in this limbo for very long, if he is as serious as you say, he may be considered a priority. My dad was, he was only on the list for one month after doctors believed he had recovered from his surgeries (including 3 weeks of unconsciousness from it). He was also on a priority list as he had a artificial machine (Lvad) especially installed to prepare him for surgery.

Unfortunately, you are probably going through the worst time right now, because it's the uncertainty and waiting that is the worst.

The way I seemed to deal with it (since I lived with my married parents when this was happening) was to make sure everyone knows what is going on (was helpful at work, they were aware I would have to sometimes call in sick at the last minute after spending all night at the ER. My sister was out of town at this time, so it was me and my mom basically, can get isolating.

What was helpful was having at least one family member or friend who would occasionally come to the hospital for a visit or would invite my mom and I over for dinner or out to eat after the visit (there were times we went to the hospital daily). I'm sure eating properly is not something on your radar right now, so this is quite thoughtful thing to do.

While someone who brings over meals is doing a very thoughtful thing, I would rather have their company, since you do often feel alone.
Having someone help your mom out would also be great (straightening up house, etc.)
Since a lot of people have never been in this situation before with a relative, I think it's ok to outright ask people for favors sometimes such as picking up groceries, giving rides, etc.

3.) How did you handle interactions with the outside world? I am trying to be as normal as possible, but I end up feeling like I have to be "on" all the time and it's exhausting.

I definitely sympathize with you on this point. Nothing was worse to deal with when after coming home from the hospital when you don't know what will happen, you then have to get on the phone with all your friends and relatives. You're already exhausted and then you have to deal with people's questions. I'd recommend taking turns with your mom or having another person ferry communication at times.
I'd recommend Facebook or something like that to notify people of updates who are not your close relatives or friends, it saves time.
This can help you from having to be "on" constantly, and allow you to more easily handle times such as work when you have to remain professional and focused.
Hope this helps, hang in there!
posted by greatalleycat at 9:21 PM on October 15, 2010

Oh! Speaking of "Facebook or something like that," I can't believe nobody (including me) has mentioned CarePages or CaringBridge. They're free sites that are set up so you can share news of your loved one's health updates and have other people leave messages for you in an online guestbook. Both of them are good, but I think CarePages has a slightly more complicated wall that requires you to create an account and log in.

This was SUCH a godsend when my aunt had breast cancer. There were always people trying to find out what they could do, what she was feeling like, how fuzzy her hair was, all that. There were also a lot of people who didn't know her at all logging in to leave messages of support because they'd heard about her from one of my other family members or similar. We ended up telling lots of hilarious stories about each others' lives and connecting more than we had in healthier times. There was a lot of "Did you SEE the pictures Matt posted on the CarePage?"

But aside from that, it's just nice to have a place to direct people. "How IS he?" "Oh, he's got his ups and downs, but he's pretty good. Just check the page." It's very reassuring for both the people updating it (and most likely dealing more directly with the patient's care) and the people reading it (many of whom may be respectfully curious but don't want to bug you). It's also great to help organize support if you need it.
posted by Madamina at 10:27 PM on October 15, 2010 [2 favorites]

Thank you so much, everyone. You have been so kind and so helpful.
posted by chatongriffes at 10:11 AM on October 16, 2010

You got a lot of good advice here so not sure what more I can offer other than some of the top things that would work for me:

Realize you dont have to be "on" all the time - it's pressure you don't need and as you know it's very draining. Just "be your mood" - those you are close to will know what its about and the others will get by, and it gives you an emotional break.

Eat well, and even if you dont feel like it, it might be a chore but it will help you overall to stay healthy. Along those lines, exercise - it helps bleed off stress, try to have a routine with it and do what works for you.

Know your Dad will want you to be happy. Have fun when you can, for you and others around you (Dad, Mom, BF, etc) - dont feel guilty for having fun, laughing, etc despite the situation - I think your Dad would be happy and get comfort knowing you can have fun and not feel like everyone around him has put fun and enjoyment on hold due to the weight of the situation. Laughing and doing things you enjoy just to enjoy them will get harder probably but I would try to savor them as they will help you emotionally and is a good break from stress that seems ever present to you I'm sure.

If you can inform yourself with as much detail about his condition and the months to come WITHOUT scaring yourself with worst case scenarios, then do so. I would learn as much as I could about the medical processes of his illness and in this case with end stage liver disease and things to expect as time goes on - for me anyway, knowledge makes things a lot less stressful just understanding what is and what can be - both good and bad - in the coming months, including the things you may go through as a family - encephalopathy, ascites, muscle wasting, tests, symptoms, the transplant itself and its process and recovery and complications. These are all things I learned and helped a lot to keep myself and those around me informed. The unknowns of ESLD and transplantation can add stress, informing yourself can help manage that uncertainty and replace it with knowledge that will help you cope.

If the transplant center has counseling, go to that as you stated, they may also have meetings with other patients as a group (and their families) that you can attend and ask questions, you'll also see others that are in this waiting game and they will have suggestions on coping also that may help you.

Since your Dad is listed, thats a big step, and if he's fairly far along which it sounds like (liver decompensated) he will be fairly high on the list and therefore a good chance that he will get a liver soon. Plan for that and it will help. Think of it like the positive visualization athletes do, it will help set your mood - make a habit of it.

I was on your dads side of this, so if you have questions, you (or he) can ask via mefi mail if you like - I can try to answer as best as I can anything you or he might have about the waiting, transplant process, and anything in between. I saw a lot of cases on the transplant floor and some were better and worse than mine, everyone used the suggestions you have gotten in this thread to help them through it, I saw it firsthand.

I wish you and your Dad and family the best

LTR 2001
posted by clanger at 11:58 PM on October 16, 2010

I want to thank everyone again for all the great advice and support. I went from being a total stressball mess to being pretty ok. You really helped me get there.

My dad got the call at 1 last night. We'll be going to the hospital in about an hour.
posted by chatongriffes at 6:12 AM on July 6, 2011 [1 favorite]

YES! You've still got a long road ahead, but this is great news!
posted by Madamina at 7:52 AM on July 6, 2011

Just ran into the surgeon in the elevator. He was still in scrubs and a hairnet, munching on a poptart. He told me Dad is fine, the liver looks great, and everything went really smoothly. All I can do is heave a huge sigh of relief.
posted by chatongriffes at 12:18 PM on July 7, 2011 [2 favorites]

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