Ascites, Paracentesis, and Mom Update

Hello All....I haven't been on in a while. I hope everyone is doing well.

My mom has now completed all of her pre-transplant workup. We are officially just waiting for a liver now. There is one person on the list before her, so it should be fairly soon.

When we first found out about all of this around Thanksgiving, my mom was in relatively, or what seemed like, good health. That has changed pretty signifcantly the alst few weeks. She just completed her 4th paracentesis yesterday. 2 weeks ago they took 9 liters and yesterday they took 8.2 liters. It seems every time they do the paracentesis, her abdomen fills back up faster. Is this normal? She has been filling up with the ascitic fluid to the point where she can hardly walk from her kitchen to bedroom without being winded (due to shortness of breath from lung compression). Will the doctors at some point recommend a treatment other than paracentesis if she keeps filling up this fast?

Also, she has been on the lactulose, but she doesn't like it so she isn't taking as much as she should. I'm not sure if that has anything to do with this next part or not, but wanted y'alls opinions. Thursday while she was at work, just sitting at her desk literally doing nothing, she said the room started to spin and did not stop for a full five minutes. She was a bit clamy and had the dry heaves but no success in actually vomiting. Her work called an ambulance and sent her to the hospital. The doctors really didn't find much. However, her white blood cell count is a bit high. They did a cat scan and found nothing. Does this sound familiar to anyone? Any ideas?

Last thing I wanted to ask is about blood type. My mom is AB-. Does this mean she can accept an A, B, or AB liver?

Thanks for your input. I hope everyone has been doing well!

Sara

Sara , Did she pass all the pretransplant evaluation ? Reason being if she didn't they may hold her back from actual transplant until she can meet all the requirements , Make sure you get the evaluation results first hand and not through word of mouth from your mom .
In my case I filled up with ascites every 3 days and they removed around those same amounts your moms been getting removed each time . The catch for me was that I hadn't at that point passed the 6 month sobriety mark ( Long story ) and my MELD was still around 16 and too low for transplant . I was filling up so fast with fluid that my Hepatologist suggested T.I.P.S surgery or I may not live to see a transplant . A flip of the coin , Risk death from fluid and complications from it while I completed my last 2 months of sobriety and physical exam or get the T.I.P.S surgery that may or may not work just to get me through the evaluation . T.I.P.S can have bad side effects with elevated ammonia levels and the surgery itself is risky for anyone who has a lowered immune system as with most liver patients . I weighed it out and chose the T.I.P.S .
I'm glad to say it worked out o.k and the fluid was gone completely in almost 2 months without any further paracentesis . However the surgery isn't permanent and on average most folks do fine for 4 years , Few have went on for 12 years or more before requiring a transplant . Once the procedure is done there is no reversing it and a transplant will be needed if it fails completely . It's been a few years since mine was done but they check it regularly to make sure the shunt is flowing properly . So far so good .
Lactulose sucks but death seems far worse , Been pretty close to it and I don't think I'm ready to go just yet ....... Yeah I'd take the lactulose for sure . Ain't sure about the blood type thing so maybe someone else will tell ya bout that .


A. Ziffle

Yes, she did pass all of the pre-transplant testing. According to my mother, she is officially on the transplant list. Apparently the list for her is shorter because of the rare blood type, and on that blood type list there is only 1 person before her.

Gosh I couldn't imagine filling up with 8-9 liters every few days. I know by looking at my mom she looks massive when she is full of fluid. I couldn't believe how fast it came back this time. Of course after this last trip to the hospital she finally admitted that she isn't taking as much lactulose as she needs to and she is also eating low sodium versus no sodium. My brother says she has been doing quite a bit of cheating on her diet. Apparently the sodium can and is contributing to her retaining fluid. I guess she just isn't taking it very seriously.

She says that at this point she is looking forward to the transplant and just wants to get this all over with.

According to the things my mom tells me, the wait list for livers at her hospital are quite low (according to their website the average is less than 1 month), which is why I assume the doctors aren't doing more to figure out the ascites and why its building up faster. It seems as though my mom isn't taking it all very seriously because she thinks it is going ot happen so quickly.

As for caregivier status....it is mainly my brother (totally worthless) and I (very busy) and some women from the church. I'm sure we will get it all handled somehow.

Sara,
I agree with A Ziffle that one with ESLD oftentimes doesn't understand what Dr. says, and thinks Dr. says what they want him to have said. Unless another person hears it too, I wouldn't trust her understanding of what Dr. said. My hubby with ESLD can't recall what Dr. said 10 minutes later, but certainly has an opinion about what Dr. said. (Totally offbase of what Dr. said)
Anyway, I do hope that she is 2nd on list and gets a liver soon. Thinking of you.
Angie1953

Sara, I'm curious to know what transplant center she is going to that has only a month long wait for a liver. I had mine at Mayo, which is supposed to have the shortest wait list in the nation, 2-3 mos.

I agree with what the others have said regarding correct information.

Hugs,
Connie

No, the 27 days would be after she gets on the waiting list. I know of people who have gone to Florida Hospital, but I don't think they do as many transplants as Mayo or Tampa General. This is really great news for your mom that there won't be a long wait.

Hugs,
Connie

Sara, I just saw your post.

The blood type thing is a double edged sword. Yes, it is rare. But there isn't a huge call for them either. My Mike is O pos, so lots of donors and lots need livers. So I think, in the end, it works out how it is supposed to work out.

One of our members has AB in Australia, and he has been #1 on his list for a while. But I don't think folks are as generous with organ donation as we are here.

I pray that your Mother holds on until her time.

The one good thing about how upset she is -- is this: they pretty much have amnesia about this whole pre transplant time, once they get really loopy with the ammonia and other symptoms. Mike doesn't remember that folks came from all ove rthe US, basically to say goodbye, the year before his transplant and to this day he says they didn't come, that I am making it up.

That is no excuse for ignoring her in the ER, but she likely won't recall after a while.

So sad. But the fact that there is a chance that something can be done....that there is such a thing as organ donation that give many people a second chance...well that is hard to wrap you head around sometimes.

I had about given up hope, and I know Mike had too.

And here he is, almost 11 months post transplant enjoying his life, his children and grandchildren.

Praying hard for you.

Carol

Thanks guys. I was wondering if it might be good for her to talk to a hospital counselor while she is there. Do they offer that kind of support for situations like this? She has always been one to hide emotions and then fall apart when she is alone. I tried to get her to open up a bit yesterday but she doesn't like to get emotional in front of me. She seems to let it all out better in front of my brother, but he is useless in helping her work through all of this.

I'm really struggling with what to do with him too. I know I have vented about him in the past, but I'm really about to hit my boiling point with him. When he called me yesterday at 4:30pm to tell me they were back at the hospital, he mumbled and dragged on with 'uummmsss' and 'uuhhhssss' until i was finally like ok seriously why are you calling? He finally tells me they are at the hospital. I asked him why they didn't call me sooner and this was his answer.........they didn'want to upset my 3 year old son ..................uh, what?????? makes no freaking sense. apparently my mom was not feeling well enough to come to my house Saturday for a little family St. Patricks Day party that my little guy was all excited about, but her and my brother came on out anyhow. I'm not sure how this has anything to do with why he didn't tell me they were at the hospital.

so, apparently my mother has been unable to get up and manage for herself since saturday so my brother has been tending to her. I asked both of them why they didn't react sooner to the fact that she literally could not get out of bed to get a drink. this is a seriously weak person who needs medical help. how did neither of them recognize this? i already know the answer....he is spaced out and isn't in his right mind, but what can i do about it? my mother does not trust him to read off her credit card number over the phone because he cannot speak clearly, so I have to call her insurance company, sort out her payment issues, go to her house and get her credit card number, and call back and pay it for her........yet my brother drives her 30 miles each way to the hospital and takes care of her at home? so she trusts him to care for her life but not her car insurance? huh??????

sorry i'm just venting......it is stressful for me to have to deal with her health and his inability at the same time.

yes she is confused and having memory problems, and yes she is on lactulose. she has been in the hospital all week, and when she is there they seem to be able to regulate her meds and get her mind clear again. she is supposed to go home tomorrow.

her MELD is back up to a 20 now. it had dipped down to a 16 for a while. her sodium is still low but they have not told her why. they are just treating it with meds. i'm assuming they are figuring that her kidneys will right themselves post-transplant.

thanks for the prayers.