We got a liver!!!!!!!!!

right before the surgery the other liver transplant surgeons came in to check on her because of the infection. one doctor did say she was septic. is having the bacteia in your blood the same thing as septic?

Mike is ok now right?

Sara

Sara, having bacteria in the blood and sepsis are the same thing.

I've never heard of steroids fighting against antibiotics. Steroids are for inflammation while antibiotics are for bacterial infections. If one antibiotic doesn't work, they will try another. She apparently had the peritonitis prior to transplant, and piercing the abdominal lining during transplant allowed the bacteria to enter the blood stream. They knew this would likely happen, which made it such a high risk surgery. However, without the transplant, she was close to death. With the transplant, she survives but has to be treated for the infection.

To protect both your mom and yourself, it's better not to visit today. Try to rest up.

Hugs,
Connie

Yes, it's where the infection came from...which caused sepsis/infection in her blood when the abdominal wall was pierced during transplant. Prior to this, it seemed to be confined to the peritoneum/abdominal lining. This is why it was such a high risk transplant. But doing nothing would ensure her death, whereas doing the transplant gave her a chance to fight it off with antibiotics and her own determination. The next 24-48 hours are going to be very crucial.

Hugs,
Connie

FANTASTIC, Sara! I would not have expected her to clear it so quickly. That is indeed miraculous.

Hugs,
Connie

You're right. People who have not been through it really cannot understand. Even post-transplant, you will find that most people think it's like any other surgery--have something taken out and sewed/stapled back up and you'll be better than ever in a couple of weeks. Nope. It's a lot of small triumphs, day by day, for a long time.

Thanks for sharing the news with us. We don't often see such good news, so we love it!

Try to get some rest, though. When she is discharged home--even beforehand with in-hospital teaching, you will have a lot to learn and make sure is done--meds, taking BP, pulse, temp, weight, blood sugar, etc. Do you have a large pill container for all the meds she will have? I have one that has room for all the meds in a day: AM, noon, PM, and night time. I set it up for a week at a time. There may be a couple of fluid Rxs, too. Stock up on hand wash and wipes. The best way to prevent further infection is by frequent hand washing, especially when preparing meals or touching her. Counters, sinks, and toilets must be kept immaculate and as germ free as possible. Even 6 mos. out from transplant, I have to remind myself that I'm immunosupressed and need to wash my hands or use sanitizer gel.

Hugs,
Connie

Sara,

You have spoken about your brother before, that he is either not well, or has some challenges emotionally.  You have been worried all along that he is in her household full time and that you live elsewhere and work full time.

You have also mentioned that your Mom's church group was ready willing and able to help out the family during these difficult post op days.

You know, of course, that in nurturning your brothers limitations/challenges/addictions (I'm not sure of the actual situation) she is enabling his behaviors.  Or perhaps he is not well enough to do better.  This is for a doctor to say.

Since you cannot be there, and since your mother is determined to house him, I think you might want to pretend he isn't there at all and round up all the help you can get from the church folks or other community services.  Perhaps visiting nurses can come a few times a week, check with your coordinator and social services at the hospital.

There are organizational jobs for you...organize her meds and appointments...that is critical as you learned in the class today. She will be on a lot of meds taken on various schedules.  That needs to be set out and a chart or alarm system created so that she can get well enough to do that herself.

Even our Connie, the bravest soldier here, couldn't take on all the caregiving tasks herself at first and had a relative with her 24/7 for 10 days or so.  Months later she is still relying on  others to clean, shop, and get her to and from her appointments.  She is exhaused all the time during her recovery.

My Mike was a long time getting the meds straight.

The church folks can check on her, maybe help with personal grooming things or her laundry.  Be sure there is someone near when she showers.  Maybe someone will need to empty her drains, Mike had his for quite a while (at least 7 days at home). 

She will have to go to appointments and blood draws often, so rides need to be arranged. Can your brother be depended upon to drive her around? If not, the church folks or some handicapped van service needs to be arranged.  It might be important for you to come to the post transplant surgery appointments so you are keeping your nose in the INSTRUCTIONS.  They seem to change meds often.

And it seemed Mike needed new Rx and new pads of one kind or another, more diabetes supplies, etc.  Who will do those pharmacy runs?  Does your local pharmacy deliver for a reasonable cost.

Can the church ladies organize meals, or can you make and freeze portions on the weekend?  At least for your Mom.  Her needs will be simple at first ,they aren't very hungry and don't want much more than jsut before transplant...still focusing on supplemental nutrition (Ensure, or Carnation Breakfasts, etc.) with protien, low sodium and fruits and veggies. 

Depending on the financial situation, it seems her personal space...bedroom, comfortable chair by TV, and bathroom need to be cleaned. That may be you on a weekend, not sure. Maybe you can hire someone for the near term. Brother can look after his own laundry, shopping, and cleaning his own spaces.

Well, that's my 2 cents this afternoon.

Thinking positive stuff for your family.  Your Mom is tough, she just had a HUGE surgery.  Try to keep the stress away from her if you can.   Can you disengage from your brother, and organize...seems like he is a sad case...but nothing he is doing is different from what you've come to expect.  

Hugs,

Carol

 

Post Edited (MamaLama) : 5/8/2012 1:48:05 PM (GMT-6)

sara you have described my sister to a tee! I feel for you! I can tell you with my sister anything that takes away from her being the center of attention, know matter what it is, makes her pissed. Ignore your brother, you and your mom will be better off.

It is so nice to hear good news. I am so happy your mom's infection is gone. May things just keep getting for you both!!

Well the saga continues........

My mom is right back to enabling my brother. I have sacrificed my work and my family to be there for her and she is right back to where she was. she is not holding him accountable for anything. he is spending her money or garbage. he isn't staying 'hygenic' for her health. he only sanitizes his hands when i tell him too, but now he has decided that i bought bad hand sanitizer because it is too runny and he spilled it on himself. he slept in my moms recliner last night and when she woke up and went to the living room this morning there were food crumbs scattered everywhere. apparently he enjoyed a pop tart all over the house last night. she apparently lectured him about it and then let him leave for what appears to be an imaginary job interview at 7 am. When I got to her house at 7:45 am I cleaned up his mess.

When he got back tot he house he had cigarette smoke all over him and my mom told him to go change. He never changed. He instead sprayed himself down with a can of lysol. unbelievable. she still didn't make him change. he then went over to her to help her lean back in the recliner which means he had his face and chest all up in her face. she told him to go change again and he did not. He instead decided to pick up his little electric cigarette and start smoking it in the house, which he says is fine because it only releases 'water vapor'. frustrating.

he also apparently decided that my hair was looking dry so while he was sanitizing his hands he decided to run them down my ponytail commenting on how dry my hair looks. Gee maybe that is because I have been running around like a mad man and not taking care of my hair.

he still has yet to clean his bedroom and sanitize his bathroom. he was unable to unload the dishwasher. He was unable to take out the trash. He is unable to shower. All by his choice of course, and my mom does not enforce anything.

my mom on the other hand is already starting to eat like garbage, which is what caused her fatty liver disease in the first place. she is sucking on jolly ranchers, drinking rootbeer, and asking us for asiago bagels with cream cheese (which my brother will go to the store and buy for her because he enables her too). she only watches her diet when i harp on her. she has made very little attempt to man up and learn/confidently handle her blood sugars and insulin because of course I wrote all the steps down and I can help her with it.

After about 11am this morning I just couldn't take it any more. I had to get out of there before I snapped on them. It's like watching them enable each other all day and I can't handle it. I told her that I had to leave and if she wanted to step up and handle this situation with my brother I would come back, but that I could not stand to sit there and watch this any longer.

sorry for the vent.........I just don't know what to do about this. i am so sad that she is handling her recovery like this. if she isn't going to make every attempt to get her life in order, take care of her liver, and move forward in life then why the heck did she even accept this liver???????

Sara

Maybe someone needs to speak to her transplant coordinator.

Sara, I agree that you should call her transplant coordinator to let her know what is going on. In trying to avoid the PT, she is trying to go back to "business as usual" and not be bothered by any outside sources (including you) who may require her to do things to get stronger and be involved in getting and staying healthy. If she continues to do what she's always done, it may be time for you to extricate yourself from the family dynamic. Difficult to do, but you can't expect much from someone who doesn't want to change. You only get yourself upset.

Hugs,
Connie

Thanks everyone. At this point we are apparently not speaking. I guess she can handle it all herself.

Oh wait, she just texted me. She wants the info for the carpet guy so he can finish the floor. A little background....when her apartment flooded, the wood floors were damaged. When she got the call for the liver I had to scramble to have the floor torn up and relaid for her so she could come home to a sterile house. Cost me $400 to carpet a stupid hallway. The flooring guy told us that we had to go to Lowe's to buy a t-strip for one area. Apparently if I don't do it, no one will, so now she wants the carpet guy to come back. Super. I told her to have my brother fix it.

I am going to see my therpaist on Tuesday. I made an appointment yesterday.

I just texted her back telling her that until she is ready to take healthy steps and change her life that I don't think I can be a part of her life. I am just so angry with her for all of this. How dare she accept this liver and then go right back to who and what she was. She owes her donor more than that. She owes the person on the list that got bypassed for her more than that. If I was the donor family and I found out that this is how she is treating her recovery I'd be heartbroken.........but maybe i am being dramatic.

This is so not how I expected this to turn out.

Sara

That is what I plan to do David. Thank you.

Sara