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Caregivers Sharing Thread - renewed #2

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Posted 6/11/2011 4:24 AM (GMT 0)
SadWife-will you be going to the GI doc appt with your husband? Can you nudge my memory please...remind me how old your husband is? Also, how long has he been ill with liver disease?

I hope you can go with him to the appt and that it goes better than you expect...maybe this will be the doctor visit that he realizes he needs to quit drinking.

Emma
Posted 6/11/2011 7:07 AM (GMT 0)
hi to all,
we are due to see the consultant this time, we saw a registrar last appointment who was very rude and i did not like her one bit!!. the consultant was 'on an emergency' last appointment, then we walked out and saw him on the golf course!!. we are due to see him this time and i am sitting there untill he appears!.
i will ask for a new print out of the recent bloods, they are usually ok at giving them to me, they think im doing it on principal rather than being able to understand them, (which i let you guys decipher for me)!!!!!!.

sad wife,, i hope your appointment isnt too bad. obviously we know while they continue to drink, the results will never get better, but i think all we can do is hope that they are not drastically worse.

my hubby too is getting more yellow in his eyes and cheek bones and a dark orange colour everywhere else. tremors are evident now and my sis in law says he is slowly starting to sleep more and more as he did before.
i hope all goes as well as it can for you all.
thoughts and prayers.
xxnatasha.xx
Posted 6/11/2011 10:40 PM (GMT 0)

Natasha, what is a Registrar?  Over here, that would be someone who registers someone for school.  Is it a chief resident?  Like the big doc over a patient's care?

Hugs,

Connie

Posted 6/12/2011 2:43 AM (GMT 0)
Natasha-I had the same question about the Registrar.

Emma
Posted 6/12/2011 3:20 AM (GMT 0)
Natasha, I don't think we realized how fortunate we are here until we read some of your experiences with medical care. My husband is fortunate to have 2 good Physicians and if he needs emergency medical care, we can get that pretty quick as well. I feel for you having to deal with that in addition to everything else you deal with already. And I don't blame you, I would sit there and wait too if I was you. You deserve that much!

Emma, my husband is 53. He was diagnosed by his GI Doc with cirrhosis in Aug of 2010, however, now from all I have learned I realize that he has had it much longer. Looking back, I see so many of the early symptoms that apparently were there but I just didn't know what they were. He did go to the Doctor for yearly check ups and only once did his Family Physician say that his liver enzymes were elevated a bit, but that it was nothing serious. Then all of a sudden in May of 09 on Mothers Day he got extremely ill and had to go to the ER. I just found out recently when I requested his records that the notes from that day state he had cirrhosis. So how long before that even, I don't know...
It's such a shame....he was so good looking back when we married. He has the pretty dark skin, dark hair, bright blue eyes, and the muscles, muscles, muscles.... :) Now, you would never know it....He is frail, has red spots on his eyes and skin, and his eyes look like they're sunk back in his head at times...It's more a picture of a skelaton with a big belly. And the beautiful blue eyes are now red and yellow....And that was just 14 years a go.....
Well, anyway, didn't mean to get all morbid about it, but I've seen it before, just never thought I'd be living it I guess...

Hope you all are having a good weekend and getting some much needed rest!
Posted 6/12/2011 10:05 AM (GMT 0)
hi to all,
a registrar is someone below a consultant. a consultant is like the head of a specific department and the registrar is the person one rung down from them. not sure of the equivalent in the u.s. so cannot give you the example!.
funny how different the language is??!!!.
sad wife, i believe we are living the same lives!!! everything you write im reading nodding my head like crazy, as i have exactly the same things going on with my hubby. my sister saw my hubby a couple of months back working in the garden minus a tshirt and she said the only thing she had ever seen that compared to how he looks was a picture of someone in a concentration camp from ww2. skin and bones with a protruding belly. unfortunatly he did that to himself unlike the poor souls in those times.
i hope you are all having a good week end and hope you all have a good week ahead!!!!!!!!!!!
xxnatasha.xx
Posted 6/12/2011 7:28 PM (GMT 0)

Natasha, thanks for the explanation.  I think that would be comparable to a chief resident over here.

Hugs,

Connie

Posted 6/13/2011 9:42 PM (GMT 0)
bump
Posted 6/13/2011 11:30 PM (GMT 0)
Sorry ladies I apologize ,meant to go on David's thread it's a little more sensitive there and we can discuss our medical male problems. Once again sorry ladies I hope you're all enjoying yourselves.
Mick
Posted 6/14/2011 12:15 PM (GMT 0)
Mick, What was the name of the male thread again? Was it the "Testosterone and the Restless", or was it

"As the ego turns"? Oops sorry, I guess I forgot......... :) Don't forget to discuss what you're going to wear to your next appointment, you know that's a must! smilewinkgrin

Posted 6/14/2011 1:07 PM (GMT 0)
Mick wears leather and lace, with some olive oil for lubrication.
Posted 6/14/2011 1:23 PM (GMT 0)
Somehow that picture is not real appealing...... :) Especially if he's wearing pink.... shakehead
Posted 6/15/2011 12:12 AM (GMT 0)
Pink is reserved for Friday's.
Posted 6/15/2011 2:10 AM (GMT 0)
SadWife-was today the day that your husband had his GI appt?  Just wanted to check in with you and see how things went.

Emma

Posted 6/15/2011 9:21 AM (GMT 0)
Hello Emma ,
Thankyou for the thankyou and I bet you have a beautiful smile !
Mick
Posted 6/15/2011 10:20 PM (GMT 0)
Bump.....
Posted 6/16/2011 1:46 PM (GMT 0)
hi to all, hope you are all doing well.
went to the specialist appointment today with hubby. the specialist sat with his hands behind his head leaned back in his chair and said, (actual quote),,,, "two weeks alcohol free is not enough for me to treat you. i will not give you any further diagnosis or testing unless you come to me with 6 months documented sobriety. you alcoholics need people to discover a miracle pill to stop you doing this to yourselves, this would save the n.h.s. millions of pounds a year and i could treat people who are actually ill. if you fall off the wagon before your next appointment in october, do not bother coming.". hubby then asked for a print out of his bloods to which the specialist replies, "you dont need them, they will not make you better".
at this point i walked out.. i was still reeling from finding out my husband has not touched drink in two weeks!!!!. he showed me a letter from the g.p. stating this to be true, from breath tests and blood tests that i did not know he was having!!!!!!.
that is where we are at here, you are darned if you do and darned if you dont.
this is the longest i have ever known my hubby to go without alcohol. its not a done deal, i know that, but this is a big step in the right direction. we were told he could have some scans and an endoscopy to check for varices if he were to show willing just so that we could have an actual dignosis. i dont recall either of us ever being told that he had to be six moths dry for diagnosis??? for a transplant, yes, but diagnosis???????.
im so tired i couldnt even shout at the arrogant man. hubby however is determined now to stay dry so hopefully he will.xxnatasha.xx
Posted 6/16/2011 2:15 PM (GMT 0)
What the doctor said is known as "tough love." If this lecture helps keep your husband from drinking, then it will have been well worth the mental trauma from the doctors observations.
Posted 6/16/2011 2:39 PM (GMT 0)
i understand the tough love approach but at the end of the day, he is a proffessional who should have delivered his sermon in a proffessional way, not in an arrogant and vicious manner. fact of the matter is, the symptoms my husband has from this disease can be treated and he is refusing to do that. hubby is a long way from being dry but for the first time EVER, he is making an attempt to get on the right track and while he dosent need a round of applause for making that decision, medically, he should at least be able to know what is wrong and how much damage he has done and exactly what he is up against??
Posted 6/16/2011 4:14 PM (GMT 0)
My pcp is as blunt, if not more so than your husbands doctor. I appreciate the direct answers from him, even when they're not what I want to hear. He's honest, doesn't sugar coat things and his advice has helped me get through 10 years of liver disease, a cerebral hemorrhage and a transplant. Don't hold my hand, just tell me the truth. I'm willing to bet that once your husband goes 6 months sober, the doc will be more than happy to take care of him. That is the point, right.
Posted 6/16/2011 4:52 PM (GMT 0)
Facts yes, rude no. My husbands GI Doc and Family Physician's are both very direct and to the point. They also state facts and put it very very bluntly, but they are not rude. There are 2 different kinds of Doctors in this world. The kind that do their job and treat their patients any old way they want to. Then there are the true professionals that manage to do the same thing, but in a professional way. There IS a difference and I have seen it first hand working with them. There is no point in someone being unprofessional and making others feel that they are not as important as they are. Natasha, while I agree that it is necessary for them to be strightforward and truthful with you both, it should be done in a professional manner at all times. DON'T ever let them talk to you like you don't deserve the same respect that they expect! Your situation is bad in that you do not get the same care we do here and that is sad for you. You are in a bad situation and I feel for you....

For what it's worth!!

Hang in there!

 

Posted 6/16/2011 6:37 PM (GMT 0)
thank you s.w. that is completely how it was!! i am not a stupid person, nor am i oversensitive but this guy was just rude.
the specialist we had a year ago was very to the point, no messing but also explained what was going on and wanted to also find out himself.
i am aware of the cost to the n.h.s. and the fact that this was self inflicted but the start of hubby giving up is happening so where was the harm in letting us know exactly what damage has been done and what he might recover from and what he might not??. he really was a nasty piece of work and the arrogance came off him in waves.
he looked so far down his nose at us that im suprised he could still see.
he asked me why we were not living together at the moment and i told him hubby needed to fight his demons alone and the man turned to me and said, "sorry i asked, im not a therapist ya know" sarcasm dripping off the words was almost palpable. horrid nasty rude man.
that was no tough love.
if i were to see him at bupa (private healthcare here) i expect he would be begging my hubby to admit himself,,,,,,,, £400.00 per night before treatment.
he thinks hes an advocate for his cause, whatever may be relevant that day.
n.h.s. ,,,, send them home,,,, private,,,,,, keep them in!!!!!!!!
Posted 6/16/2011 7:03 PM (GMT 0)
natasha-so sorry that this doctor was so rude. it would have been nice if he had been more encouraging to your husband. two weeks is a good start.
Posted 6/16/2011 7:58 PM (GMT 0)
Mike's GI doc, the one before he got to the Hepatologist in Miami was/is as rude.  Five seconds, in and out...once he learned HOW Mike acquired Hep C and that he was still drinking.  See you in 3 months.  Period.

They did prescribe the lactulose and lasix and those maintenance drugs and said to come to the ER if he was bleeding from his varices.

Once he went to the ER and the GI doc said, "Why did you bother to come here?"  Talk about RUDE.  Mike had 104 temp and the blood culture showed he had peritonitis. The GI doc refused to write his admission, but the ER attending wrote it herself.  He was too near death to release.  After a week of IV antibiotics he went home and we got a friendly doc to write a referral to the transplant center in Miami.

Those guys were cool at first.  The Hep told him that he would be gone in 3 months if he continued to drink. Put his hand on Mike's knee.  Looked straight into his eye.  Man to man.  I'm sure he'd seen some sad cases in his day, but when Mike was alcohol free 2 months, then 3 months, then 4 months they started his transplant evauation. He went in hospital there 3 more times for renal failure and everyone was delightful.  So long as he was making the right effort.  Effort was the thing that changed attitudes.

When we met the head of the transplant program, he was quite candid. They only have so many livers, and can only save so many folks...so they don't want to waste a lister on someone who is going to start drinking again.   He asked Mike to tell him why he was not going to drink any more. and he promised they'd pull the plug on his after care the second he started drinking again!

Well, he got his liver May 1st.  But the wait from September to May was really really hard.  I didn't think he would make it. But he did.  Clean living is everything! For sure.

Good luck.

Carol 

Posted 6/16/2011 9:02 PM (GMT 0)
I hope everyone here took note of the above post. If you won't help yourself, why should they?
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