SRS I'm kind of at a loss of what to do now- sick dad

Discussion in 'On Topic' started by calisteph6, Feb 20, 2008.

  1. calisteph6

    calisteph6 Active Member

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    My dad has been sick for a while...so I'm gonna summarize the situation.

    -had a kidney trasnplant at 26, he's 54 now
    -2 years went into a coma, turned out to be liver failure (probably from the rejection meds, he's not a drug/alcohol user)
    -now is trying to get on the liver/kidney transplant list at UCLA
    -is in the hospital about 4 times a year with the liver problems, which is extreme confusion/depression
    -has lost 50 lbs over this time


    Now he is in the hospital again and it's worse this time and looks like he may not leave. It has been 5 days, which is usually about the time he gets out. His confusion is better, but his kidney function is bad. He has one test left before the transplant team makes their decision on his transplant...it's an angiogram where they need to use contrast fluid, this could throw his into total kidney failure and he would need to be on dialysis...not sure of the effect on the liver. They are probably just going to end up doing the test because his liver only has a few months left as well as his kidney before he passes anyway, so the transplant is his only hope, so hopefully the test won't do too much damage. Also, he's getting a blood transfusion today because his white blood count is low.

    Problem is that now he has really lost his will to live. Before he was so excited about the transplant and talking about going back to school to be a paralegal, and fixing up his car. It breaks my heart and we've tried to talk to him and say that he's young and we need him still and my sister is only 19 and his mom lives with my parents, but he says we hate him, etc etc.

    I really don't know what to do, at all. On top of all of this, on the way to the hospital on Monday my mom flipped her car 3 times and totaled it. Luckily she is totally fine besides a few bruises, but obviously shaken up and very worried about eventually telling my dad about it.

    :hs:
     
  2. calisteph6

    calisteph6 Active Member

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    ok sorry, that was a shitty summary, but it's so complicated.
     
  3. Redbeard

    Redbeard OT Supporter

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    It sounds like he wants to live, but because hes been down this road soooooooooooo many times before its tough for him. He needs you to support him while hes goes through this even harder time. Just try to cheer him up and be on his side. Hopefully the docs will decide he does need the transplant soon.
     
  4. Lucky Penny

    Lucky Penny Mr. cut me some slack cause I don't wanna go back,

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    at your mom's house. be back later.
    Fuck Calisteph, I'm am so sorry :hug: What's the best way we can support you through this?

    pm me or aim me if you want to talk
     
  5. calisteph6

    calisteph6 Active Member

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    Thanks, but I'm really more worried about him right now. He's become really depressed/angry. He's mad at us for not letting him go home. We tell him he needs another test to get on the list and he says he doesn't care and he wants to go home and die. :hs:

    I mean, it is hard on me. I've always been really close to my dad and I just can't imagine my life without him in it, but right now I barely think of that, because I'm more worried about his mental status than my own.
     
  6. JordanClarkson

    JordanClarkson OT Supporter

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    You said he wanted to fix up his car. Maybe you can take a pic of it and bring it in for him to keep by his bedside. Getting excited about a passion and give him some motivation and drive. He's way too young to be giving up.
     
  7. Lucky Penny

    Lucky Penny Mr. cut me some slack cause I don't wanna go back,

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    I understand. :hs:

    The last time my mom was diagnosed with cancer she decided after a few weeks of treatment that she wanted to stop all treatments and just come home to die. It was the most horrifying month of my life. I was too afraid to move- I would literally laid in bed for days.. not talking to anyone, not leaving my apt, just letting the days slip by. I felt like if I even breathed too deeply I would shatter into a million little pieces. I would beg her to keep trying- telling her my brothers and I needed her, that there was so much we didn't know, how could we go on without her? It was excruciating. Just thinking about it actually became physically painful.

    I don't know if she really wanted to die or not, but after a very intense fight between her, my dad and my brothers, she started treatment again. I can't even imagine enduring that for an extended period of time the way you have. You are very strong. I'm so sorry that you and your family have to live in that pain and fear everyday. :hug:

    I never wanted to talk about it when it was happening either- I was far too worried about my mom and I couldn't bring myself to talk about it anyway. However, if you happen to change your mind, we're here to support you.
     
  8. AtoorayasGrl

    AtoorayasGrl New Member

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    You can't give up on your dad and you absolutely have to stay strong. Yeah I know I may sound like the typical person, but unfortunately I've been down that road with dealing with a sick parent. My mom was very sick. She had scleroderma, where basically it's an auto immune disease that affects your internal organs and your body starts to slowly shut down. Last year starting in March all the way through August she went into the hospital 5 times. (Had open heart surgery, had a stent inserted, went through multiple x rays, angiograms, was hooked up to a ventilator for 2 weeks, etc.) She fought with my dad and me screaming that she doesn't want to take her medications, that she's sick and tired of all this shit and that she just wants to die. Everytime she went into the hospital, no one could do anything for her so she got sick of it all. She kicked the doctors and nurses out of her room, refused treatment, etc. How did I deal with all of this? I don't know... I didn't give up though. As much as I wanted to lash out on her and call her a selfish person I didn't. I tried my very hardest to stay strong, to be by her bedside and talk to her even though she was unconcious encouraging her to hold on. Give your dad a reason to live. Tell him your future plans or what you guys could do together when he gets out. Bring him some stuff from home..pictures of his car, of his family, etc. Take breaks...walk out of his room and take a deep breath if he's being really hard to deal with. Think of what you would want people to do if you were in his shoes. You need to also prepare yourself for the worse. Well you can't actually prepare, but still, I think you know what I mean. I'm saying this from experience because unfortunately my mom didn't make it through. At least I know that she isn't suffering anymore and that's the only thing that will keep me going. This is the best advice that I can personally give you. If you have any questions about anything let me know and please keep us updated.
     
  9. Stilgar1973

    Stilgar1973 New Member

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    The only thing I have to say is don't tell your Dad about the car accident unless you are forced into it.
    Your Dad has enough problems right now.

    If the insurance company needs his signature then you tell him. When he comes home from the hospital then you tell him.
    But for the exact moment.
    Leave it be.

    Good luck. Be strong.
     
  10. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    No it wasn't shitty at all.

    I'm so sorry that you and you're family are going through this right now. :hug:

    I know, first hand, the frustration that comes from having a loved one that has lost their will to live. My dad went through a time like this yet he lived for 2 more years!! See my dad found my brother, after my brother had committed suicide (pistol to the head). It broke my dad emotionally and he just couldn't go on. He didn't want to....life was too difficult.....yet he lived for 2 more years.

    I had to watch him go from being a normal, healthy man to someone who I couldn't even have a conversation with. It was awful and I felt so powerless to help. I literally didn't know what to say or do to snap him out of the funk he was in. It was so hard to not just rage at him.

    If I had it to do over again, I would be much more pro-active in helping him deal with stuff. I would take get him doing some things like mild exercise. I would also add humor....a LOT MORE humor. I'd prolly take him on easy walks or even riding bikes. I would rent really funny movies that he used to like and just watch them when we're together. I'd play more music he liked in the house. I'd tell him more.....that I love him and that I'm here for him.

    Sadly tho, I can't do those things because less than 2 years after my bro died, my dad died. That's been 21 years ago and now, I'm much more assertive with those I care about. I did the best I could at the time but I now know, I could have done so much more. I just wanted God to fix him...I also didn't realize how depressed he was. I mean I kinda knew but I didn't accept it. I really just thought he would get better. If I had any idea that it might lead to his death, I would have done soo much more.

    I don't know if that helps or not but hang in there and I'll keep you and your family in my prayers. :hug:
     
  11. calisteph6

    calisteph6 Active Member

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    update:

    he's a lot better mentally now. He wants the transplant, wants to live, tells me he loves me when I leave and is generally in a way better mood.

    they're doing the last test on Monday probably. Obviously it's good that we're moving forward, but now I'm so scared that he won't pass or something and I'm just worrying about stupid things, like even if he does pass what if something happens during the transplant.

    Uh...he's been sick for so long, but when he was stable, but terminal, I could just put it in the back of my mind. Now it's good because we were being proactive about fixing the problems, but obviously all the procedures are very dangerous.
     
  12. Lucky Penny

    Lucky Penny Mr. cut me some slack cause I don't wanna go back,

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    Thanks for the update! I'm glad to hear your father is doing better :big grin: Keep us updated as new news comes in and try to take care of yourself too :hs:
     
  13. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    Yeah I'm also glad for the update and will continue to keep you and your family in my prayers. Hang in there. :hug:
     
  14. calisteph6

    calisteph6 Active Member

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    So my grandpa went in a few weeks ago for surgery on his bladder and yesterday at his follow-up appointment the doctor confirmed he has prostate cancer.

    seriously... I don't think it's possible for a family to have more bad luck this week. :hs:
     
  15. Bleed

    Bleed New Member

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    :hug:

    there really isnt anything we can say at this point. it's just one of those things that you have to deal with. the similar feeling that everyone has is that you want to take some of the pain...as you feel guilty that they have to go through this alone. it will get better over time, but during this time, just focus on being there for them. when people go through stuff like this they tend to become really isolated and want to be left alone. the truth is that this is when they need support...even if they act like they dont want it, they need it badly!

    good luck to you!
     
  16. calisteph6

    calisteph6 Active Member

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    update:

    He had his angiogram (heart test) and it came out pretty good except I guess one side of his heart doesn't pump as hard as they would like. I'm really crossing my fingers that this doesn't exclude him from getting on the transplant list. Still no word on the effect on his kidneys or whether he'll need dialysis.

    He was super upbeat for a few days and now he's back down in the dumps. He cries a lot and says he doesn't know how much longer he can take being in the hospital. I just try to hug him and say the DRs are trying to take care of him and then I ask him what he's going to do when he gets out.
     
  17. calisteph6

    calisteph6 Active Member

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    update:

    the heart test excluded him from being able to get a transplant.

    I'm kinda just in shock right about now.

    :hs:
     
  18. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    I'm certain that this means more to him than he could ever express to you. He's lucky to have a loving daughter like you to help him. We should all be so lucky.

    I'm sorry to hear that his test excludes him from the transplant list. :hug:

    I'm not sure if this will help but one never knows. A while back I found a doctor that has scientifically been able to prove the reversal of heart disease. His research spans decades and he has documented many success stories. Here's one of his books....I hope it helps.
    http://www.amazon.com/Ornishs-Progr...d_bbs_2?ie=UTF8&s=books&qid=1204594067&sr=8-2
     
  19. calisteph6

    calisteph6 Active Member

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    Thanks for the rec...he's going to the cardiologist soon to see if anything can be fixed to make hims eligible. The book doesn't look like it really applies to him, b/c his arteries are clear and cholesterol is low...it's to do with an irregular heartbeat and the way his blood pumps. :hs:
     
  20. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    Oh ok...well perhaps you're right. It might not be the best book. However, you can prolly find it at the library for free, if you're interested.

    I hope your dad feels better soon.
     
  21. calisteph6

    calisteph6 Active Member

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    aww so update time

    my mom had gotten that news from the UCLA transplant lady, who is "miss doom and gloom." When she got the written statement from them, it said he was denied because of his cardiac status that could be corrected with diarisis (sp), which means he has fluid around his heart and he needs either water pills or dialysis, which is VERY correctable.

    Not nearly as bad as the woman made it out to be to my mom. And although I know my mom to be a drama queen, I've also meet the woman, and she is a downer.

    So my dad has an appt with his primary and his kidney MD early next week, do onward!! And his spirits are much better with this news!
     
  22. Coottie

    Coottie BOOMER......SOONER OT Supporter

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    That's AWESOME!! I'm really happy for you and your family.

    Thanks for the update.
     
  23. calisteph6

    calisteph6 Active Member

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    UPDATE:

    my dad got on the transplant list!! Now he just has to get financial approval before he's officially on the list and then as soon as all his numbers line up he'll get a transplant!!

    yay!
     
  24. Kafka

    Kafka New Member

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    lol cool
     
  25. althepirate

    althepirate Talk nerdy to me.

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