My signifacant other of many years has been diagnosed with ESLD.

Thanks for the reply Connie. We actually on our own have been decreasing his BP meds. First just before his weekly appt. then it has been daily. At this point he is down to 1/2 of what he had been taking. Bought a home BP monitor to keep track of it. Tonight he was at 96/58 which seems to be about his average "normal" these days. I'm not really sure if I am correct when I understand that they want to keep his pressure on the low side to help with the ascites and the gastric varices. It seems to make sense that if his blood pressure is lower that both of these complications would be better.

There are no liver doctors locally. PCP was/is supposed to be checking on that and the TIPS. From what we have been told so far is that the only place that the TIPS is done here is at the University of Michigan in Ann Arbor. It is only about a 4hr drive for us. So far David is not interested in the TIPS, but I think that is my fault because I thought that the shunt by-passed the liver and he/we were concerned about the effect on ammonia levels if the blood wasn't being filtered at all. What I understand from your post is that the blood is still going through the liver and getting filtered as much as it is now ??

Thanks for the reply Connie. Yes he did skip his BP med yesterday. BP was/is still low - 70's over 40's on the low side. We have an appt on Monday to see his PCP and get results of bloodwork and hopefully to find out what he was able to find out about TIPS. We will be talking to him about the BP issues as well. The office actually called after last weeks draining and said Dr. said he wants to stop them because of the BP. Our fear is that the other complications he has had will be back - infection and bleeding from gastric varices - and land hime in the ER/hospital again. It's all such a frustratingand scary balancing act !

Yes that is the biggest fear that I have right now and each week when we go.

of course he had liver cancer, ESLD, Hep C also...

If his BP goes any lower over the weekend, give the doctor a call to see if he should stop taking them altogether.

Hugs,

Connie

Waiting tonight ....... Go to Dr tomm for blood test results and hopefully answers to many questions. Have been keeping close eye on BP. Have cut him down to 1/4 of BP meds that Dr. prescribed. Just took BP - 88/56. Still low!

Saw on some other post that low/falling BP could be indication that body is shutting down. Scared that that is what is happening. All things considered - he seems pretty good otherwise - am I being paranoid ???

That is our plan Connie. Have a lonnnnggg list. Even bringing the BP monitor so we can show him the readings. Thanks again !

Diane & Dave

Gnet - Yes David has been having fluid drained once a week for the last couple of months. Average of around 7-8 liters per week. The radiologist performs the ultrasound to ensure safe entry of the needle/draining tube. The procedure does have significant dangers/risks ie infection and drop in blood pressure during and/or after its done. He does receive Albumin during the procedure for the blood pressure. His doctor did order the albumin but I understand this may not always be the case with other Drs. so be sure to ask his about it as it is important.

Originally the Dr. did not want to have the fluid drained regularly because of the risks involved and the fact that it is a very temporary "fix". Tried to treat with diuretics and diet. Ended up in ER though after he gained almost 10 lbs of fluid in one week and he was having shortness of breath due to the pressure and some of the fluid being in his lungs. The fluid they drained was also infected and had to be treated with IV antibiotics.

I hope this helps some.

Diane & Dave 

From what we were told it was infected due to all the pressure from the fluid pushing  normally existing bacteria from stomach, bowels etc. and into the fluid.  He has since been taking a once a week antibiotic to prevent it from recurring. This is one of those frustrating things because the weekly drainings can open him up to infection - but if he is not drained the pressure can cause one too.

Diane & Dave

Emma PS - Not a silly question at all - my first one to the Dr. as he had not been drained prior to this.

Diane & Dave

Does he have a fever?  Did the doctor see the rash yesterday?  What does it look like and where is it?  Glad to hear he was taken off BP meds.

Hugs,

Connie

I'd just keep an eye on it and if it appears to be getting worse, give the doctor a call...particularly if his BP stays low or he runs a fever.

Hugs,

Connie

Sounds like a plan, Diane!  Please keep us updated.

Hugs,

Connie