Complications are a circle

[Yuiop]

Hi there,

Hubby only been home 4 weeks and back in to get drained again.

Low blood pressure 93/50. Low sodium, was 128 then dropped again. Taken off dueretics for 72 hrs, and back on them tomorrow. Been told if this doesn't work it will be a stent, then the transplant list.

Any advice from experience would be greatfull.

Thanks

[Hidden]

Hi Yulop

Now as Brett11 would say, where does that nick come from!

Poor you - i often feel it is the other half that it is worse for... i know my wife gets really stressed and, at times, frustrated.

I blew up like a balloon in 2015. I was in a terrible state but buried my head in sand awaiting my next clinic. Bad mistake! Hardly put my foot though door (umm thats wrong i couldnt walk so my daughter pushed me in a wheelchair - how pathetic did i feel...) and i was whisked away to a bed. Then i went into wonderful and not so wonderful deleriums for about a week. First one was, that I really thought i was in a hospital in the clouds and all the nurses were angels. Lol catch that one mr psychiatrist.

I never had a stent...i thought a stent was for heart? Does hubby have heart or liver problems?

Anyhow try not to get too worried, if he is “unlucky” and has to have a transplant it isnt unlucky as i had mine 4 weeks ago and i am already so much better, like a new person, well maybe soon 😁

All the best to you both. If you are up to it its nice when someone posts progress - thanks!

[Brett11]

TIPS can be good to stop the need for any future drainings but they can cause the hepatic encephalopathy (Or HE as we call it in the trade) to get worse. I think that is what you mean when you say stent.

Cheers,

Brett

[Yuiop in reply to Brett11]

It is what I meant to say, but I couldn't edit my post ... Omg is he ratty this morning, but hey ho, be home soon.

[Hidden in reply to Brett11]

Lol Brett. All these abbreviations do my head in and as for all the numerical data that is quoted...how come I got left out none ever ever gave me numercal data 😢

[Hidden in reply to Brett11]

And whats TIPS to those of us ignoramuses?

[kurtymac]

TIPS is good if portal pressure becomes an issue. It will get the blood flowing better and it can reduce the risk of bleedouts. The issue is blood bypasses the liver after circulating through the intestines, which then carries all sorts of bacteria, leading to Hepatic Encephalopathy. However, if the doctor says he needs the stent, then his portal pressure is probably dangerously high. It's quite common to have low blood pressure measurements when somebody has portal hypertension as the blood takes a different route through newly formed blood vessels (varices) to bypass the fibrotic or highly inflamed liver tissue. I also forgot it can be very hard on the heart, so the stent also reduces stress on the heart. 75% of blood flows through the liver with each heart beat. When the blood doesnt flow well anymore, it can cause a great deal of stress on the heart. Stent also helps with that.

[Yuiop in reply to kurtymac]

Thank you for this information. It's difficult to get answers, most of what I know is because I've been reading about it all

[Yuiop in reply to kurtymac]

Thank you for sharing your knowledge xxx

[Hidden in reply to kurtymac]

Hi

Do you man HE?

(Joke - poor one)

Whereon earth did you get all that info?

I had a thrombosis (impressed?) in my portal vein (impressed?) but never got told any of the detail youve just told us. Great stuff thanks - nowif only i could remember all that 😠

[kurtymac in reply to Hidden]

Hey Twosmiles, it's a mix between college, work experience, my own health issues and my love for research when it comes to anatomy and physiology. No problem, glad to help!

[IPCN]

Hi Yulop

Prior to transplant my husband had to have drains done every 4-6 wks and also had low sodium. There was constant tweaking of diuretics, low salt diet etc although not considered for TIPS as his HE which he initially suffered in self terminating short bouts became progressively worse and didn’t respond to treatment which meant he was continually confused and anxious which was in my opinion the worst symptom of cirrhosis . My husband has limited memories if this time although he says that for him the worst symptom was the fluid buildup oh and the itching! We did weekly bloods and the docs at Ambulatory Care in consultation with our GI consultant where he was drained as a day case patient accepted lower sodium levels of approx 123-125. We used to get really excited if levels were 128-130! It is a vicious circle and it does take over your life, my main goal became keeping him as comfortable as possible physically and positive psychologically which I admit was so so difficult at times but I would like to reassure you that there is light at the end of the tunnel. My husband was listed for transplant beginning of February 2018 and transplanted end of March 2018 , there was even 3 false alarms prior to transplant which although disappointing we found reassuring as we knew the team were trying really hard to ‘fix him’. He’s now 6 months post transplant and doing really well-no more terrible symptoms and I have my soulmate back. I hope things improve for your husband and send my love and support to you as I know how difficult it is for you at this time also. Take care, Pam x

[Yuiop in reply to IPCN]

Thank you Pam, I'm glad you reached the light at the end of the tunnel. I'm becoming drained with it all. I have a part time job, a young boxer and the hospital visits all add up to a 14 hr day. Hope our light is soon xxx

[Hidden in reply to Yuiop]

Is that a boxer dog or a child?

[Yuiop in reply to Hidden]

Haha, 3 at Christmas. Defo a dog!

[Hidden in reply to IPCN]

Hi IPCN

Great post glad things are looking up!

How do you get drained? I was in hospital loads of times with HE, furst time was in for nearly 3 weeks. But no one ever told me about draining...or did they? Now what was i saying...