Lost Son

Alex, I hope it is time for you to start moving back into your routine and life. Build that future you were thinking of when your Dad got sick. You walked your Dad through this, did the research, and now I hope can let him pick up and do for himself what he was unable to do....as he can, of course. I know he will have some bumps along the way, but things are doing pretty darned good.

Time to focus on you, stay in the loop...but focus on your life. Your Dad surely wants that for you! Big Hugs

Hey all! Things have been moving along well. Dad is getting into his routine and he is starting to mentally and emotionally enjoy life much more now. My Grandmother is in town and staying with him to help with daily chores and also be supportive. It has proved to be very crucial to his initial success imo. This has also allowed my mom to return to work this week.

Physically dad is still doing his best to recover and get rest. He has been sleeping A LOT. After his hospital stay he says he feels he can sleep for weeks. He stays indoors most of the day since the weather over here is BRUTAL. We like much of the country are in a terrible cold spell. So daily I am going to help do things like fuel the cars, take them to appointments, grocery shopping, take out the trash, move things around the house etc. With My mom and her issues as well I am there to pretty much do everything around the house (My soon to be fiancee jokes that it will be good practice for me...)

One thing that is amazing to me is how my dad has become very health conscience and also very positive. He is taking time to read and learn new things and in turn uses his experience to be supportive of others. I think it is great.

He is still very much underweight and doesn't seem to be adding on any mass, much of it is because he is scared to eat most things he once used to. Despite the doctors telling him it is ok, he is taking it slowly.

As for me, I am back to my routines aside from this continuing journey. I am however considering a career change now that I see how precious life is and how quickly life can change. Being miserable and stressed is no way to live.

Now if I can only win the lottery....

TM, Absolutely I will let you know what meds he is on. I will gather that info. That's what we are all here to do. Help out. I am sure the mister will one day be post tp with you as his support. It is very obvious that effort has SO much to do with it. All the research and questions helped get us to this point.

He is currently on 6 different meds with around 14 pills daily as most are two times a day. (I will breakdown when I can sort it out) keep in mind that the quantities vary from each persons needs. He already has been taken off 2 meds (equaling 4 pills daily) Eventually it won't be many to take (still months away) and we all know some are for life. But I think it is a very reasonable thing to do.

As for his diet there weren't many restrictions. The doctors said (As a rule of thumb it's always good to eat healthy. BUT, you have a new liver so EAT!) They said he can eat as usual but it would be best to get get him some high protein foods. Our doc said...."chicken, fish, eggs...repeat. Can't go wrong and that is the best"

Of course she did say there is nothing really off the table except for grapefruit and grapefruit juice (Apparently it affects one of the medications) another thing is eating well cooked meats. My dad is a medium rare kind of guy, so looks like his food will have to be well done from now on.

I lost over 25 pounds, post transplant. Food had no taste and I didn't feel hungry. It was a month before food began to have taste and finally hunger set in. I gained most of the weight back in a couple of months, partly due to my docs urging and because I could eat pizza and other fattening stuff.

As far as activity, walking is the best way to ease into it. He shouldn't do too much, until he begins to gain weight. Some people are depressed as they don't feel they're getting well quickly enough. He may need to talk to a social worker in the transplant program. I did and it helped tremendously.

Alex, my grumpy Mike turned to mush after transplant.. I think he cried almost every day. Every day he was on prednasone!! That started to get better as he was weaned from the evil pred and started feeling better. But not everyone gets better quickly. I think too it depends on how sick they are at transplant and how old they are. Mike was a pretty sick dude....at deaths door. And he was even walking with a cane for a while.

I am hoping things look up soon,

Mama Lama

65 pounds is a ton! My dad is at 62 pounds since the surgery. He just doesn't seem to be eating much. In general he was average weight I'd say. So he is certainly on the extremely thin and sickly looking side of things now as opposed to being larger and now at average.

He hadn't been eating well for years leading up to this so I know it will be hard to turn that around.

David, I am stopping in to take him out for a brief walk daily. I know he needs to exercise more. It's hard because it's so cold here right now but even a stroll around the grocery store is a huge step I think.

Alex, How is your Dad doing this week? Thinking of you both. Big Hugs

Alex.

My theory....after being hypervigilant during his illness, tp prep, and final transplant...staying awake long hours, working crazy schedules, driving a zillion miles day and night to be with him...and now he is home and still needs your attention, but basically should be okay.

How long can a person be under that super duper hyper vigilant status before they need to take a breath? I think the body and mind need a break. Remember that weekend, or week, you went away. I think to Boston.You were like a new person when you got back. Is there a chance you could take a break again (how about to somewhere warm this time) so that you can get this whole thing back into perspective.

I have been at this caregiving game a long time and need to take breaks...get someone to help and take off. I did a camping trip with girlfriends this fall, went to see my daughter in Albany over the summer for a week, etc.

I am sort of feeling like you at the moment again however.

Mike needs another surgery. You may have read my post where a hernia operation has morphed into open heart surgery!!! Crap!

AND, I am primary care giver for my younger sister who lives 5 miles away from me. She has frontal lobe dementia and is failing quickly. I am in the process of getting the DMV to pull her drivers license (she gets lost every day and has to be rescued...I am driving her in her car most everywhere ) and have interviewed a nursing service to come in 3 afternoons a week to help with meds, errands, and companionship. Because I am about broken. With Mike going in the hospital Sunday for however long it takes to get him out...like TP....5-10 days depending on how things go. I hope we'll be home for Christmas, but who knows. Her shrink even volunteered to come and visit one afternoon next week. Thankfully.

I am not sleeping well and feel like I am getting SICK. If I were sick, I couldn't do all this. Which would be bad...maybe my body is saying I actually CAN'T do all this alone and better get that nurse's aid organized! OR ELSE.

I checked my sisters meds this morning and it looks like she took both her morning and evening meds today already. The fridge had milk dated 11/17, 2 slices of cheese, 4 eggs, and mayonnaise. PERIOD. The freezer was totally empty but for freezer packs you would use for a picnic. Yesterday I tried to take her shopping and she said she had plenty on hand. I invited her to Olive Garden for supper and she came and ate. If I had not, I fear she would have skipped supper, or forgotten supper (again? She has lost 20 lbs in 2 months). Oh my.

So, I totally understand where you are. It is the holidays and it is hard to care about making any kind of fuss. I put up a tree here and at my sisters (just a little one) and have like 6 gifts bought. Period. I can't get into it. I sent the kids a check and mailed some cards....period. Oh, and bought Mike new PJ.s I heard that he cant raise his arms at first so he needs button front pajamas.

I am sure that you are tired..it is hard to keep up with your work too. And where are things with the girlfriend? Did you get/stay engaged? Is she understanding with all this? Are you asking for help from your sibs with the errands and taking Dad places? How is Mom holding up?

Mike says he hated feeling useless. Bit by bit, he took back pieces of his life. Are there jobs Mom can give him to do that will make him feel appreciated...in the moments he is feeling stronger? Are you using the Ensure to make sure he gets some nutrition? Is Mom getting some breaks....out shopping with the girls? Getting a mani--pedi (hey there is a good holiday present.) Is she able to work?

I am so sorry this is so very hard.

After Mike didn't die I remember saying I was glad he lived, but I had prepared myself so much for his dying, that I sort of wondered what was I was going to do next??? Crazy talk, I know, but an honest feeling.

Hugs to you, don't be a stranger, your feelings are so real, and raw...thank you for sharing them. I hope days are brighter soon...and it is a dark time of year, seasonal affective disorder and all, and COLD, etc etc. By February everyone north of Jacksonville will be DONE with winter. You are not alone there.

Carol

You went through a big build up, then the transplant and now things are back to hum drum life. Things were bad, but you were amped up. Now it's recovery time and there's nothing exciting about this. That's a good thing.

It is very hard to deal with the aftermath, after all I had fought so hard for and her getting her transplant...I was a bit lost. And I did what I normally do. Bounce back and do THINGS. He will be a while getting back up and about and he wants to now that he is ALIVE again. Being at the stage of death he was...we talk about it rather a bit. Being dead, knowing you are, and then not. It's a bit of a shock.

My wife was so very deathly ill that it has been a year since diagnoses of hepatic renal failure. She got a new liver April 3rd. Her kidneys, well...she will more than likely need a kidney about 7-10 years down the road. And yano what? NO BIG DEAL.

She is still recovering, probably will never fully recover. Got to remember that they saw you in half, remove the largest organ and replace it with someone else's. And you were at total dead stage when they did it.

You never heal, the muscles are held together with fishing line. Forever. And the meds take it out of you too. The meds are hell on kidneys, for one.

I guess what I mean to say is there will be lots of naps and lots of tears and lots of emotion. And it is all good because they are still here, with us :)

Just take it day by day, as you have learned what I have. There are MUCH more important things in life. I just enjoy every day I have with her. As there would have been no more days, but we do have them now!!

Once he gets a bit of stamina, you might suggest he do what my wife has been doing. Volunteer places. She is learning her stamina level and getting out of the house this way, and helping others!

Oh, we would have a donor. That would not be a problem. Prograf is hell on kidneys. But needed, so we all just deal. They just want to drag hers out as LONG as possible, since a transplant would start being hit with the Prograf. It is much easier to live with the kidney deal, they say 10% function is 'livable.' Unlike a liver! Merry Christmas to your dad, LS. This will be the first of many, and every holiday, birthday, anything of the like has become 1st's for us again ;)

Your dad already received the best gift of his life...

Hi all,

Wanted to chime in and let you all know of any bumps along the road. Yesterday my dad started complaining of sharp stomach (Lower abdominal) pain. It seems to be at the pit of his stomach and at time on the right side. He was in constant pain and was hunched over as he walked and was in bed most of the time due to it.

Today it is not any better, except the fact that it will subside a bit at times. We called the TP coordinator and she said he could take a few tylenol and see if it helps. Otherwise to go see his primary.

One thing to note is that he had been taking urosidol and stopped the day before the pain. Not sure if it is related (TP Coordinator said probably not) but wanted to mention it. I have been reading up and saw that gallbladder problems could be the cause...

I am not sure but will keep you guys posted. Hope it's nothing but if it continues tomorrow I will have him go see his doctor.