Ascites

Also, he just now mentioned to me that he thinks that he is still putting on water.....did anybody else do that after tips ?? He just got drained before the procedure on Thursday.

Remind me, DV...is your husband on a transplant list? Big Hugs

Ziff, a stint clogging would be just more ascites right ? I sure hope this thing works.

Hello Angels ! It has been a long while since I have been on here. He has been pretty good post Tips. He had his Tips procedure done in July. The procedure went well. He only needed paracentesis one time one week after the procedure.

Since July it has been the HE-lactulose struggle. He looked really good and had good color to his skin.

Now, he is blowing up again with abdominal fluid. The doc's nurse practitioner looked at him and said it was fat. It's not fat and getting bigger. He has had some breathlessness laying down and I brought that up and she ignored it. We went to family doc for his sugar being 400 and metformin was ordered. Metformin is not helping but A1C is ok. So I tell family doc about breathlessness plus congestion and chest pain and he ordered an albuterol inhaler.

I'm upset because I think he is on the road to CHF from Tips. Heart issues are one of the complications listed. None of these doc's are concerned. I don't want his heart to get so overworked that it swells up because wouldn't that make transplantation a problem ? Other than these new things we are doing ok keeping warm watching it snow.

He needs to go back and see the transplant team. MRI and sonography need to be done. The first year is a critical time for observing flow rates in the TIPS or checking for obstructions. We are talking hair widths can be critical in placement and thus effecting performance of the shunt. It took about three months to start seeing a marked increase in weight gain for me.

Even though I had been on the low sodium diet for a year prior to TIPS it was still a battle at times not to grab table salt or watch for food product labels. Make sure he's adhering to the low sodium diet and getting as much exercise as possible. If Encephalopathy becomes a issue he'll need to up the dosage of Lactulose until it works. Just my thoughts but some drugs cause constipation as a side effect. Look at his prescriptions for that possibility. No poop or not regularly enough and bloating will surely occur. The other obvious effect of constipation is the lack in removal of toxins from the body.


Ziff

Thanks A Ziff and Themiz He has been seen by a hepatologist all this time. I don't like what his Dr is doing definitely.

He has been calling for three days trying to see his hep Dr with no return call as of yet. So by tomorrow we might be going to the ER to get a paracentesis since no return phone calls.

I used the link that Themiz added for me and I hope we hear back soon from them

We asked his hep Dr last visit in January if we could meet transplant team and he said no. I just don't get that at all..... I bit my tongue to control it

He saw his interventional radiology nurse practioner Feb 1st and she said his stent was still open. I pointed out that he was taking in water and breathing hard. She said he is good.

His albumen is lower 2.7 his bili total is 2.5 his Pt is 16.0sec his Inr is 1.48 ammonia is 117. These have all changed in the last month but his

Alt is 24 and Ast 36 so those two look good for him.

I just know when his albumen gets lower he always blows up with water. He is sticking to his diet well and staying off salt and now has to not eat sugar and count carbs.
i appreciate both your replies very much Thanks Angels And I hope Mama Lama and her hubs are well

I can't think of a reason why his Hepatologist would not lean to the side of caution if he has been compliant with the program. I was being seen every three months after TIPS and told to weigh myself daily to insure I was not seeing a rapid increase in weight. Some weight gain would naturaly be expected or at least in my situation. I was painfully thin boardering on malnutrition when the surgery was done. My stomach was as huge as a basketball but due to muscle wasting and lack of hunger my frame was thin. I gained weight afterwards because my hunger came back. I always felt full prior, Go figure!!!

If at any time during that three month interval I had concerns or issues appeared I was instructed to call the transplant coordinators office ASAP. You would not be over reacting to be concerned about breathing issues. A MRI and a sonagram imaging was done also in the first year every so often. If you consider how critical the positioning of the shunt is placed it's easy to understand why the would want to check it real good initially once it's been done. I have been fortunate enough to have had caring people in all depts. of UNC. They explained and demonstrated along the way as to what they were looking for and why. It's pretty neat, The human body that is. Of course I wouldn't recomend anyone go my route of learning about it but it's been educational at the least.

HE in my case has been somewhat mild but nevertheless it's always present. Waiting to sneak up on me. Prevention is the best way to go. Take the lactulose stuff even if you don't feel you need it. The taste of it never has grown on me. Nor the results (The trots, The restroom waddle or what ever you prefer). Alot of this is a learning curve for each person individually. Go with your gut feeling if you feel somethings wrong. You are your only advocate.


Ziff

So sorry to see this happening to you. Is he at all capable of watching himself? I had to, myself. Is someone caring enough to watch him in your family? Maybe a old friend? You have to have some time for you, less you'll be just as sick as he is.
I wish I could say it's rare for this subject to come up. It does regularly. You aren't the only person out there or in this forum with this problem. Maybe some of the caregivers will chime in soon and share their thought's.



Ziff

Sorry you are dealing with this, many here have. It is the most difficult thing to watch someone you love become someone you do not know, especially when they are there some of the time. My wife doesn't remember a lot pre-transplant. She went downhill so fast, and so...impressively that I had time to myself. Too much, in fact. I ended up working 2 jobs to keep all in order. She spent almost 5 solid months in the hospital.

I cannot stress enough getting in with a proper transplant team. The whole team. When things get bad, especially with HE, at least a night in the hospital is needed to clear the ammonia. You just can't deal with it at home.

If you are getting brushed off and he is able to be listed, I hate to say it...but have you considered moving to a place you CAN get a good team? I am not sure, don't remember where you are located, but I know a lot of issues in this country right now revolve around health care, or severe lack of it, depending on the state you live in. I know people who have moved just to get healthcare.

This is one of those situations where it only takes a moment for everything to tumble down, and fast. I have watched it and never thought for a moment that it could happen so fast.

I hope your docs are listening, but if not, get thee the heck away from them and find a team that actually sees ahead, instead of just maintaining and treating it like it is nothing.

I hear a lot of this going on in your posts and it hurts, as there where several docs in my wife's care who were of this bent. I immediately went to the head's of whatever floor/care she was in and got that nipped in the bud.

Sometimes you have to be that squeaky wheel, there were many days I was sure those docs/nurses would have been happy if I was one of those who did not care, but as I watched people die left and right in the time I spent with her at the hospital, alone, uncared for...I just got louder and more adamant. It helped that I am a chef so fed them goodies OFTEN, lol.

We are at 2 years post transplant, after me having head nurses tell me over and over 'This is it, she might last the day' to docs telling me they would never transplant her, she wouldn't make it to that magic 6 month mark, to docs straight out saying she just needs to accept, and I needed to accept, her pending demise.

There is always hope, but sometimes you have to make it happen. The question I would have for you, is if you are up to the challenge. It is a mighty endeavor, very mighty indeed.

Your whole life has changed, his whole future has changed, but it does not need to be for the worse.

There are no easy fixes or answers for HE. Lactulose is horribly sweet tasting and it takes large quantities at times for it to be effective. Holding the nose doesn't work. You may try and putting it in his beverages or something to dilute it. If hell has water fountains, Surely they flow freely with lactulose. Carol (Mod) told her husband he has a choice. Orally at home or rectally in hospital. It must be taken else he'll go crazy. It can lead to coma if untreated. Xifaxan is great but it works in the lower intestines cleansing fragments of toxins left over from the lactulose. One is no good without the other for HE.
Relationship strains are inevitable with HE. It kills the desire of any love one to be put through the trials of it. Take him to ER or have him admitted via police/ambulance if it gets violent. He ain't in his right mind. I was never violent but have a talent for cutting to the bone with words. My wife suffered greatly and hardly a day goes by I don't feel ashamed of how I was. For me it was almost feeling out of body at times. Watching myself uncontrollably going down hill. Struggling to put a small sentence together or yet to make that sentence mean something. Hard as I try it was if I had no control or helpless to stop what was wrong. Pride still exist even if your off your rocker. Lashing out made short conversation and less room to look like a dullard. Hope you can get him straightened out.


Ziff