HealingWell
Search Close Search
☰

my mom has ESLD, looking for help and support and a roadmap!

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/18/2009 7:53 PM (GMT 0)
Hep93,
Thanks for the suggestion. I wasn't sure how that worked. Do you if there's anyway to cut and paste from my profile to the posting site. Seems like I should already know how to do that.
2young2die
Posted 6/19/2009 3:09 PM (GMT 0)
Hello 2young2die and Gateway40 and welcome to HealingWell. To start a new thread........you see the 3 little boxes at the top of this thread........New Topic, Post Reply and Printable........just click on New topic.. a new box will come up...put in a subject and then post away.
I remember when my granddaughters asked me why their papa was always in bed and didn't play with them anymore.......it broke my heart........I explained that he was very sick and had to rest a lot........they were 2-1/2 and 4-1/2 at the time......It seemed to be enough information for them......cause after that they would always go into our bedroom and give him a big hug and kiss and climb on the bed and have a nice visit with him. I didn't stay in the room I just would check on them a little while bit.........they are now 5 and 7 and still talk about their funny papa.

Hang in there..........thoughts and prayers........
Posted 6/19/2009 10:15 PM (GMT 0)
2young2die, I'm not really sure what you are asking.  I see your profile when I click on your name.  To copy and paste your previous post to a new topic, just highlight and copy, hit New Topic and paste your previous post in there.

Posted 6/24/2009 2:03 PM (GMT 0)
Mom now on the TCU unit at the hospital - didn't want to send her out of the hospital because she is high on the list, although it has been 2 weeks since we even had a call. Doctors poking thier heads in all the time to check on her, which is nice, but I wish that I had the money to buy a liver like the Apple guy - She is covered with hives, which we cover with benadryl cream and another over the counter cream, which helps. She is so physically weak it kills me. When she wakes up, it takes about 30 minutes to calm her down and for her to realize where she is, then she is fine. I am worried she is going to be too weak for the surgery and they will pull her off the list.
Posted 6/24/2009 6:21 PM (GMT 0)

child4, I'm sorry that your mom hasn't been offered another liver yet.  What is TCU?  I know ICU and PCU, but never heard of that one.  What Apple guy are you talking about?  NOBODY can "buy" a liver...it's illegal.  Though I understand your sentiment.

Keep the faith,

Connie

Posted 6/24/2009 7:47 PM (GMT 0)
TCU - sorry Transitional Care Unit, like a rehab with OT and PT
The president and owner of Apple Computers waited 48 days after being placed on the transplant list and received a liver. Sounds like a buy to me.
Posted 6/24/2009 9:05 PM (GMT 0)
It is strictly by who is sickest.  In fact, someone on here recently had her mom offered 2 livers after only being on the list for a month (neither liver was acceptable, though.)  It also depends on which transplant center.  Some have shorter wait times than others, particularly if they will accept less than optimal livers.

Posted 6/24/2009 11:06 PM (GMT 0)
Call me cynical, I have a hard time beleiving that.  Of course, it does me no good to waste the negative energy.  Mom is totally out of it.  I am assuming that they will pull her form the list very soon. 
Posted 6/29/2009 5:36 PM (GMT 0)
Mom's kidneys continue to decline, although the doctors are trying everything that they can think of short of dyalisis (sp).  What they say is that they are bad, not getting worse, but not getting any better. She  has a couple of hours of lucididty - we say "she's back!!" and a couple of hours where she is either completely out of it, or unconsolible. It's very hard, she is such a good mom.  Even though there are 4 of us, I am exhausted and angry that I can't do more to help her, even if it just means sitting with her and watching her sleep.  The doctors tell us that yes, she is sick, but there are much sicker transplant patients....mom has been in since June 4 and we have not missed a morning with her - tomorrow might be the first.  My sisters won't let the kids see her because they think it will be too hard on them - I think that's aweful - they are in their 20's!!  The youngest is 15 and has been to see her.....Just ranting because I don't know what else to do.  Mom's heart and lungs are strong, we just need a liver!!!

Posted 6/29/2009 10:15 PM (GMT 0)

child4, I pray that your mom gets a liver soon!  However, even if she does, it will be a long and bumpy road to recovery after transplant.  You really need to conserve your strength for such a time.  You can't be expected to do more than you can reasonably do.  I would say you are a very good daughter, but you really need to remember to take care of yourself in all this.

Hugs,

Connie

Posted 6/30/2009 5:57 PM (GMT 0)

The resident - who has been with us for the entire month mom has been in the hospital and who is moving on to his next round..so sad - just called and they are bringing in the pallitiave care doctors to consult on this case.  Although I checked the hospital website and have read everything I can, I am not really sure what this means...is this just another word for hospice?  I need a clue about this.

Mom's MELD jumped to 28 since June 11....she is still active on the list, so that makes the pallitive care issue even more confusing to me.....

Posted 6/30/2009 9:23 PM (GMT 0)

It sounds as though they are meeting to make a decision on whether she should continue to be treated or if it's hopeless and only palliative care should be given.  If they decide to no longer treat her, then she will only receive medications such as pain meds for pain.  They may treat some of her symptoms, but only in the interest of comfort rather than looking to improve her condition. 

I think that these days doctors are looking more closely at how far they will go to save a patient that perhaps doesn't have a chance of a good outcome.  This is something Obama mentioned in his health care Q&A on TV last week.

Posted 7/1/2009 2:04 AM (GMT 0)
I know you are right, even if it is what I don't want to hear.  She's such a good mom...My heart is just broken. 
Posted 7/6/2009 1:02 AM (GMT 0)
Totally wrong about the meeting!  Doctors wanted to make sure WE still wanted to keep her on the liver transplant list and keep moving forward!  I guess we were all looking pretty haggered and beat - each one of us had spent 24 hours in the hospital differnt nights with mom.  The pallitiative care dr reccomended that we ask for sitters - aids that can just give care and comfort to mom through the night so we could get rest - they did one better and actually make sure that she always has a sitter so we can get our bearings and strength.  It has ben wonderful to know that there is someone to hold her hand and calm her down - or even just get her a dring of water through the night!  And if just one of the siblings is there, its nice to know that you can walk out of the rrom to get lunch or go to the bathroom an know she is not along.

Mom was enseth.  all week, abosolutly no communication - they put and NG tube in, we were fearing the worst.  Friday - she totally came back and has been giving us all commands and demands all weekend - THANK GOD!  The doctors walked in and were amazed!  Her kidneys are still moving towards dialysis, but the doctors are willing to do it if she needs until we get a liver.

It so great that the doctors are recognizing how much she means to us and are pushing us to stay positive!!  They think she is pretty fabulous, too!

 

Posted 7/6/2009 2:14 AM (GMT 0)

That is GREAT news, child4.  And I am particularly glad that they have gotten sitters for you.  They recognized what we've been trying to tell you...that you cannot keep going like that w/o getting burned out and no good to anyone.

I hope that your mom continues to improve, or at least stabilize.

Keep us posted!

Hugs,

Connie

Posted 7/6/2009 5:36 AM (GMT 0)
Wow child4 what wonderful news. Sounds like your mom has a excellent team of doctors. Time to take a deep breath and recharge your batteries.

thoughts and prayers....
Posted 7/7/2009 1:20 AM (GMT 0)
LOVE LOVE LOVE the doctors.  HATE HATE HATE the nurses!  One today decided to skip the lactuose, you bet, we lost her to the enseph.  Now they are double dosing trying to get Mom back.  She had a para today, never hooked mom to a blood pressure cuff, she was plummeting all over the place.  Aren't these basic things?  I am not a nurse, but if the orders say every three hours, aren't they supposed to do it?  What about the cuff.  I swear they are going to kill her!  The doctors are in for quite an earful.  How amnay mistakes are not caught.  UGH!!!

 

Posted 8/7/2009 5:27 PM (GMT 0)

Just an update, sort of a weird set of fact, maybe not, I am sure you guys will let me know if this is usual or unusual!

Mom was placed in a step down unit in the hospital on July 15.  Since then, her MELD score has dropped from 32 to 28 - I think because of diaylsis.  Her liver fuctions have improved as well.  Because of insurance, she is being moved to a skilled nursing facility with in-house dialysis, basically because she no longer needs acute care.  No sign of the enseph. monster, lacktulose being give every 3 hours, and if she is even a 1/2 hour late, she does become a bit confused - doens't matter how many bowel movements, because the doctors tried to back off and could see what happend to her - the confusion comes right back, even if her ammonia level isn't very high. 

So now onto a new set of doctors nurses and care givers.  Makes me VERY nervous to make the transition.  At least this palce has some activities - bingo, crafts - as part of PT and OT so she might not be as bored.  Mom asked for her knitting, which was good, eventhough my sister had to show her how again, she seems to have gotten the hang of it. 

Mom is feeling really good.  No pain and commanding and demanding again - that's my mom!  I just am so worried.  I wish we could get a liver!!

BTW - if anyone is interested.  The Pittsburgh Post Gazette has 2 articles this week, Saturday and Monday - about live liver tranplants.  VERY insightful! 

be well. 

Posted 8/7/2009 9:46 PM (GMT 0)
Child4, It sounds like a big improvement for your mom. That's great news. You can check with the facility she is going to for the activities they have available. Then you will know. Try not to be worried about the transition. The environment will be very different from the hospital though. In the hospital the patient has alot of care and attention whereas in the new facility she won't. It is actually a positive thing because it shows that her condition has improved and she doesn't need the acute care any more. Keep us posted.
Posted 8/7/2009 11:37 PM (GMT 0)

I agree with Shelly!  It is good news about your mom.  So glad that the encephalopathy is finally under control!  You can relax a little now that you know she is doing better.

Hugs,

Connie

Posted 8/17/2009 2:14 PM (GMT 0)
Liver call number 6 on friday - actually all the way to the OR - then the liver was found to be too drug and alcohol damaged after the biopsy. One step futher than we ever been on the previous calls, but it wiped my mom out for the rest of the weekend. I think she was just so so dissapointed. We are very ready for this...I think!!!
Posted 8/22/2009 3:40 AM (GMT 0)

Child 4  Do you feel like you have witnessed a mircle!!  My husband got his new liver on 8/3,  We just got home today and I'm exhausted but feel so lucky.  We only received two calls prior to the good one.  Jerry has some horrible days in the hospital but he made it and I am so thankful.  Hang in there and I hope your mother is improving.

JoAnn

Posted 8/22/2009 11:02 AM (GMT 0)
Joann-

I do think I have witnessed a miracle!  I did start a new thread on our new liver, and I hav been readinf yours.  Tell me how old is Jerry?

 

Posted 8/22/2009 4:28 PM (GMT 0)
C4

Jerry is doing OK  I don't think we are out of the woods yet.  His legs started swelling Thurs evening and they haven't stopped.  From the knees on down.  They are huge today and they hurt to touch.  We are taking his temp every hour so far so good.  I'm getting concerned.  Everything I have read says thinks will go good for a few days and then maybe back step some.  So I'm trying to be positive. Before he got his liver the itching was horrible.  The first thing he noticed after the transplant was no itching!!!  He has now started to itch again!!!  So I'm thinking something is going on.  I will put him in the car and drive back to Vanderbilt if I have to.  I don't want to take him to a local hospital because they don't do liver transplants.  There is no specialist so I don't want anyone else messing with him.  Its close to a 3 hr drive but I don't care. 

Jerry was off the ventilator 14 hrs after the surgery ended.  He is 60 yrs old and non smoker.  I'm not sure if that was a factor.  He came out of surgery (6 hrs) at 10;00 PM Monday and was up walking in ICU on Wed morning.  That afternoon they moved him to a room.  From that time on I had to start learning his MEDS and cleaning the incision (49 staples). Trust me I counted.  He had three drains in and they took 2 out.  They just removed the 3rd drain on Thurs. Also the staples.  He was in the hospital from 8/3 to 8/13.  He did have a bile duc leak they went in and plugged (so to speak) on Monday the 10th. Probably enough infor for you for now.  I hope your mother is doing well.  I'm so surprised they did a transplant for her because of her age.  That is just so awesome.  Hang in there if you have any questions let me know.  My e-mail address is listed.

JoAnn

Posted 8/24/2009 1:00 AM (GMT 0)
exhausted -

I am not sure how to find the e-mail on the site, so I will just type here! 

The doctors told us that age was not a factor, truly MELD score - and I was quite skepital, especially after the Steve Jobs apple computer guy got his so quickly.  In fact, the donor was the same age as mom - the doctors said a 74 yo man with a 30 yo liver! 

We were called at 5p.m. on wednesday, the dr came in and asked mom if she wanted a new liver and she said "yes, please!"  went to the OR about 10 pm. and were told at 12:10 a.m. that the liver was good.  Strangely enough, 7th call on mom's 77th day in the hospital! 

Dr came to us at 1:30 to tell us the "lines" were in and they were about to start and that we would not see anyone until the liver was in. (I asked him if everyone was rested and ready because, after all, that was my mom they were operating on!!) At 7:30 a.m. he came and said the liver was in, and prodcung bile, but that mom abdomen was filled with blood - we knew she had to be bleeding, her pressure was so low - and that her MELD before the operation was 35 - we get the new scores on Thursday - we didn't kow!!  He said that is they would not have done the surgery - she would have been gone before the week was out!  9 a.m the nurse came and introduced himself and said the surgeons would turn mom over to him and he would get her all cleaned up and we could see her.  At 1:30 on Thrsday - we saw mom - hooked up, swollen, but I never thought she looked more beautiful!  They told us to go away, that they did not want to see us for 24 hours, that they would call - and they did about every 4 hours to tell us she was okay.  We saw her Friday - less tubes and machines, and everything was good.  Saturday, they lowered the sedation, and she was responding to us - kicked the covers off and wiggled her toes.  I asked if she wanted me to rub her feet and she nodded yes, I told her I don't even rub my own and she winked  Of course I rubbed her feet!!!

Today - a little more alert - drs will try to take the breathing tube the whole way out tomorrow. 

The drs keep saying we have a long way to go - they are talking a month in ICU - we told them we have nothing but time. 

We live in Pgh - the new casino opened - my mom is a big gambler - we told the surgeon before they went in that we wanted to take her there as soon as possible - he told us that before she was sedated that he told her and the team - let's get her better, she needs to gamble!!

We know we are not out of the woods, but I feel so very good about this.  I used to want the phone to ring to tell us that there was a liver - now I don't want it to ring because I know that she is okay!  One of us sibling call about every 4 hours when we cant be at ICU - the nurses laugh, answer a million questions and promise to take care of her!!  I can't ask for anything else!

 

✚ New Topic ✚ Reply
123