Hi all - I'm new

[Damon]

Hi folks,

This is a great forum. Hopefully I can chat and meet people in a similar situation to myself and my partner.

I am the carer (although it's hard to say who is caring for who here) of my partner who has cirrhosis (maybe end stage but definitely not compensated). He has had two major hemorrhages, one needing 12 transfusions) and is now on betablockers and is moving towards being put on the transplant list. The final kicker for his liver was a 6 month treatment of interferon which has to be one of the worse ideas the medical profession has had. It dealt the last blow to an already damaged organ.

His doctor seems awful (there are a lot of thoses around apparently) and we think she has forgotten to increase his dose of Sumial (propranolololololol) as it says for hypertension the dose could be up to 300mg daily and she has had him on 20mg for a month or so. Before he was on Solgol at 100mg but the company seems to have gone bust out here in the Canary Isles, Spain. If anyone has any ideas on that it would be great but I realise it is a technical question.

I'm trying to get my head around all the questions I should ask at the next appointment (Feb 12th) as my partner is a bit passive when it comes to doctors and it looks like I am going to have to be pushy.

Recently his condition has deteriorated with swollen ankles, and belly, low platelets, and a yellowy tint to him. It took me a few weeks of panic attacks over Christmas and New Yr before I accepted he was (and was going to be) very ill before he gets better. I am still terrified, but it is a bit easier now I'm being proactive.

So that's it really. he is Spanish, I am British and so I'm finding info about the British system and translating it or finding the Spanish equivalent. He has joined a Spanish forum too but as I say, isn't all that pushy and may not get a lot out.

I'm off to explore this forum. When I know what questions to ask, I'll pop them in the appropriate thread.

Damon

[pete c]

   Hello Damon

           I just want to send out a big ol hepper welcome to you and your partner,please ask away for truely there is a wealth of info here.  This i know for my self. All any of us can do is take it a day at a time .there is a chat tonight at 7:30 pm stop in and meet some of the folks here and ask away. Hang tough

                                                                         Pete

 Ps that chat is EST

[beingbecky]

Damon,

Welcome to the group. There is a lot of knowledge floating around this site, so keep posting and someone will share there experiences with you. Your partner is very lucky to have  pro active support.

Again, Welcome. Keep coming back.

Becky

[willy]

Nice to meet you Damon.  I would also encourage you to use the board search engine.  It can help you find specific topics here.

I agree that you have to be very pro-active in researching.  With his staging there are many more issues and complications, interactions, and things to monitor.

I also agree that as the staging increases the importance of having the best doctor helps.  You can shop the area, whoever you find would also need to be tied in with an excellent facility; not all hospitals are equal.

I'm sorry that your partner turned out to be a non-responder to TX.  I still understand the decision to attempt TX.  With advanced staging is is certainly more problematic and has greater risks coupled with lower success rates.  I'm sorry that it didn't work out.

Nice to meet you and I hope that you find/ get some useful information here.

best,
willy

[KatNyerHAT]

Welcome, Damon,

Very nice to meet you!  It looks like you're already doing your homework and seeking what's best for your partner.  He's very fortunate to have you in his corner.  I'm definitely a tx whimp and really don't think I could handle another round myself.  As Willy said, not all hopsital or physicians are equal.  Hopefully, you can be pointed in the right direction with connections in Spain.  Have you tried some of the other forums in the UK? They may know more what's available worldwide.

Good luck to you both and hope to hear more from you!

Hugs,
Kat

[skydiverbill]

welcome and hope to see you in chat soon

[Lee]

Welcome Damon to the family here...you will find much understanding, insight and help here...all you need to do is reach out as you have.  Please know you are not alone, we are all here to help...as we all know what you are experiencing on one level or another.

Blessings,

Lee

[debugz]

Damon-sounds like you two are really going through hell.  I am so very sorry.  Welcome to our world here.  You will find answers, support and love. My prayers are with you both.  diana

[DougV]

Damon,

I'm joining with the others to wish you a warm welcome.

I've been a caregiver of someone with end stage cirrhosis, through hospice to the end, and I have cirrhosis, so I do have a perspective from both angles.  If I can help in anyway whatsoever, please don't hesitate to ask.

And welcome again.

Doug