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Caregivers Sharing Thread - renewed #2

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Posted 6/7/2011 4:04 PM (GMT 0)
Since the first thread is starting page 4, I am starting a new one.
Posted 6/7/2011 8:30 PM (GMT 0)
natasha-is it today that you were taking your husband to get blood drawn? is yes, how did that go? i hope he is doing as well as he was yesterday.

Post Edited (healthynow) : 6/7/2011 2:54:46 PM (GMT-6)

Posted 6/7/2011 8:51 PM (GMT 0)
hi emma, no its tomorrow morning,i havent spoken to him or s.i.l today so im hoping no news is good news! i will see how he is when i take him in the morning for his bloods. thanks for asking emma!.
everything ok there??xxnatasha.xx
Posted 6/7/2011 8:55 PM (GMT 0)
ok today, thanks for asking natasha. have a good rest of your evening and good luck tomorrow with hubby. hope it goes well.
Posted 6/7/2011 10:39 PM (GMT 0)
My best friend's b.f. was on the transplant list.  Now he will have to start the 6 mos. requirement again, since he relapsed--and I doubt he will.  Sad.  

Natasha, is there any reason that his sister cannot take him for the blood work?  I just don't think you should be seeing him at all, except for when the boys are scheduled to see him...and really, I would just drop them off at his sister's and pick them up later.  Otherwise, you are still being codependent.

Hugs,

Connie


Posted 6/8/2011 12:47 AM (GMT 0)

Emma, I apologize profusely.  I could've sworn you posted it was my b.f.  But I had just come from seeing my S.O. in the hospital--a long trip--and I was really tired.  So sorry I misread what you said.  I have removed my posts.

Hugs,

Connie

Posted 6/8/2011 3:58 AM (GMT 0)
Connie, how is your s.o. I hope he is doing better. Keeping you in my prayers, as well as the rest of you.

Good luck tomorrow with your husband Natasha. Connie may be right, it may be hard on you to keep going to all these visits with him. Your choice though, you know your strengths better that we do.

Much love
Natalie
Posted 6/8/2011 5:22 AM (GMT 0)
Natalie, he's doing better, but had bacterial double pneumonia (meaning both lungs) and it is taking some time and lots of IV antibiotics to clear it up.

Hugs,
Connie
Posted 6/8/2011 1:57 PM (GMT 0)
Yikes, Connie!! Pray he feels better very quickly!!! Hope you are doing well with the last leg of your evaluation!

Mer
Posted 6/8/2011 2:39 PM (GMT 0)
Connie, I went through double pneumonia twice! Once when I was 5 months pregnant, and they thought they were going to have to take my baby at 24 weeks, they had the life-light helicopter at the hospital ready to fly me out, but my church came and prayed for me and within 20 minutes I was sitting up in the chair next to my bed. It was a long fight but I made it through and so did my baby, with absolutely nothing wrong with her. They told me she wouldn't be right because of my lack of O2 and how sick I was and all the meds, but boy did we prove them wrong. The 2nd time we found out that I am very allergic to dogs and that was what was causing it. So now, even though I am an animal lover, I have to stay away. I hate it, but it keeps me well for my kids and myself.

If he is a strong fighter, he will get through ok, and he has you to come home to, which will make him fight even more! I hope you are doing good and getting through all your tests ok. I am praying for you both!

Lots of love
Natalie
Posted 6/8/2011 3:07 PM (GMT 0)
Connie-me too...post removed.
Posted 6/8/2011 3:09 PM (GMT 0)
Connie-I hope that your SO makes a quick and full recovery. How much longer will he need to be in the hospital?
Posted 6/8/2011 7:07 PM (GMT 0)
Natty, it sounds like you went through a very rough time with pneumonia.  I know that must have been scary when you were pregnant.  My S.O. and I don't live together (we did some time ago, for 3 yrs.)  This has been a 16-year relationship that ebbs and flows romantically, but we have always remained very good friends--he's my best friend locally.  So I told him I would go to his place for a couple of days after he is released, if possible.  Guess that makes me a (very) temporary caregiver.  He is anxious to get home, but doesn't know when they will release him.  From my own experience in hospitals, they generally don't tell you until the day of release.

I have 4 consults, 3 immunizations, and blood work tomorrow at Mayo.  Hopefully, that will be it for awhile.  But I'm sure they will be calling me in regularly for blood work and scans, especially if I get on the waiting list for a new liver.  I also have a primary care visit scheduled for June 23nd and a mammogram on the 29th.  No rest for the weary.

Hugs,

Connie

Posted 6/8/2011 8:02 PM (GMT 0)
hi to all!, i did take hubby for his bloods this morning which went okay. he was a little confused but not as bad as the other day.
connie, i see your point about still being codependant but now im away from the situation as it was at home, i like to take him for his scheduled appointments as it gives me chance to see for myself how he is doing and speak with him about things i cant bring up in front of the children. he is my husband and i love him, i just dont like what he is doing to himself. now i have some distance i find i can deal with these aspects in a calmer way.
thats all my news untill the specialist next week. i am a little anxious about this one, i must admit.
i hope all goes well with the last stretch of your eval connie and that your friend recovers quickly from his illness. my mum had the same thing just after her mastectomy a few years back and its a horrid thing to have.
thoughts and prayers to you all,,,,
xxnatasha.xx
Posted 6/8/2011 8:14 PM (GMT 0)
forgot to ask,,,,, hubby has a kind of film, going across his right eye, covering the pupil and iris could it be to do with the liver disease? or is it a seperate matter?,, all thoughts appreciated.
xxnatasha.xx
Posted 6/8/2011 9:44 PM (GMT 0)

Natasha, as long as it doesn't stress you out to be around him and you remember to take care of yourself, you will be okay.  What kind of specialist is he going to see?  A GI doc or hepatologist?

As for the eye, it sounds like a different issue to me.  I wonder if it could be a cataract?

Hugs,

Connie

Posted 6/8/2011 10:12 PM (GMT 0)
Connie-I was thinking cataract too...the film Natasha mentioned. But her husband isn't even forty yet. That seemed too young!
Posted 6/8/2011 10:42 PM (GMT 0)
Oh yes Connie, very scary, but we came through. I bugged the docs til they told me when I was going home. They gave me a expectant day of release and left each time on that day.

Natasha, I am glad it went well. I am hoping it continues for you. Keeping your distance is probably the best, maybe it will make him see what he is missing and he will straighten up. The film may be a cataract, but he is young. Maybe he should go see an eye doctor.

Natalie
Posted 6/9/2011 3:44 PM (GMT 0)
Bump...

Hope everyone is having a nice day...
Posted 6/9/2011 5:43 PM (GMT 0)
Same here!
Posted 6/9/2011 9:10 PM (GMT 0)
hi all!!, it is a gastroenterologist that we see, is that good??
had my sis in law calling me tonight, it would seem hubby on a downward slope again at the moment, he is started sleeping for longer periods again and 'the smell' is back, very strongly this time. confusion getting more frequent and belly started to swell a little. legs keep giving out and they also have some swelling. not good news but this might be beneficial for the specialist to see next week and maybe see how ill he has become in six months.
i am going to get an early night so i shall bid you all farewell for now, ,,,, i hope you are all doing ok today.
xxnatasha.xx

p.s; sadwife,,, how is your hubby doing??
Posted 6/10/2011 4:35 AM (GMT 0)
Natasha, a gastroenterologist (GI doc) is better than a GP, but not as good as a hepatologist. However, given that he won't stop drinking, a hepatologist would not want to waste his time on him. What kind of specialist is he seeing next week? Your SIL could try increasing his diuretics to see if that helps with the swelling. My hepatologist has allowed me to increase or decrease the amount I take, depending on my self-assessment of edema. I don't have ascites at this time, but when I did I was on high doses of Lasix and Aldactone.

Hugs,
Connie
Posted 6/10/2011 9:22 PM (GMT 0)
Natasha,

I believe our equivalent in the UK of a heptalogist is the consultant of the grastroenterology team.  Their Registrar is the next doctor down who you may see but they should be able to give you all the information you need.

Don't forget when you go next week to ask to see the blood results and make a note of them for comparison.

Val

Posted 6/10/2011 10:11 PM (GMT 0)

She could ask for printed copies...if she has the Medical Advocacy or Power of Attorney.  Maybe they would give them without having those...over there...but here in the states the HIPAA law prevents them from doing that.  The patient must request them (or a doctor or gov't agency, if a release of information form is signed by the patient.)

Hugs,

Connie

Posted 6/11/2011 4:05 AM (GMT 0)
Natasha,
The first Doctor my husband saw after his family Physician was also a gastroenterologist. We do not have a hepatologist in our area. We see him about every 6-8 months. Usually he has us come in for Hubby's lab work and u/s of liver the week before the appt, then we come back the next week for the results. In fact our next appt is this upcoming Tuesday. We will get the results of his u/s and lab then. I know that the results will be worse. The radiologist came in while they were ultrasounding him and stated that he thought he should be drained as the fluid was very apparent on the ultrasound. But, we will not know for sure until we see the Doctor. But unfortunately when they are still drinking, there's not much they're going to do. The same story, different verse. They tell him to stop, his labs are worse, and if he doesn't quit he's going to die. I know the Doctors get tired and frusterated with patients such as my husband because they want to help him, but can't unless he's willing to help himself first. And that's totally understandable..
I sincerely hope that you will get better results with your husbands visits and maybe he'll surprise you and see the light.
Good Luck and I hope it goes well for you!
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