Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 It helped to refresh my memory......I could understand it so well. Again thanks! Lots of hugs and kisses to everyone. Lyncia From: abijann <no_reply > Subject: Lyncia To: livercirrhosissupport Date: Tuesday, June 9, 2009, 10:42 PM Your welcome. You probably already knew that info from my other posts and things discussed here. That is for those just starting in the group, or for anyone who wants an update. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 No, they gave me zophram and that usually works...just not this time. Lots of hugs and kisses to everyone. Lyncia From: abijann <no_reply > Subject: Lyncia To: livercirrhosissupport Date: Saturday, June 20, 2009, 4:10 PM There is a drug to help the bile flow better, known as ursodiol or just URSO... are you on that? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 I was on Ursodiol for a few months after my transplant. That's one of the drugs they give after the transplant. A male nurse I had who was so cool and funny told me the way to remember the name of the drug was with a little rhyme... " Ursodiol for the bile " . I never forgot the name of that drug after that. Penny > > There is a drug to help the bile flow better, known as ursodiol or > just URSO... > are you on that? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 A good way to remember it. Hope you are doing okay! Lots of hugs and kisses to everyone. Lyncia Subject: Re: Lyncia To: livercirrhosissupport Date: Saturday, June 20, 2009, 6:48 PM I was on Ursodiol for a few months after my transplant. That's one of the drugs they give after the transplant. A male nurse I had who was so cool and funny told me the way to remember the name of the drug was with a little rhyme... " Ursodiol for the bile " . I never forgot the name of that drug after that. Penny > > There is a drug to help the bile flow better, known as ursodiol or > just URSO... > are you on that? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2009 Report Share Posted June 23, 2009 Thanks! Do you know where I would get the Vel soap? Lots of hugs and kisses to everyone. Lyncia From: abijann <no_reply > Subject: Lyncia To: livercirrhosissupport Date: Tuesday, June 23, 2009, 1:17 PM Aveeno oatmeal that you put in your bathwater to take a bath in is what the hospitals usually recommend for dry itchy skin. Eucerin Cream is basic cream, that I use, since I knew it was very basic since when we had to make up topical creams in the pharmacy and mix medications into it...that is what we used. There is another cream that I used on my husbands back when he was so itchy...you can get it at the Walmart pharmacy...it is called Udderly Smooth Udder cream. I used to use Vel soap since we have Hard water...I now use only Ivory soap. They have the kind that has Aloe in it now. I stayed away from soaps with high fragrance like Zest, Caress, and Irish Spring and soaps that contain deodorants. Sometimes I get Dove soap, but not too often. Asking the doctor for medication like Ursodiol, and there may be others,...maybe a good idea. My home remedy is to use olive oil and just use a little bit when applying. It looks like it absorbs into the skin and it doesn't feel greasy. The egyptians used oils for their skin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Thank you! Lots of hugs and kisses to everyone. Lyncia From: abijann <no_reply > Subject: Lyncia To: livercirrhosissupport Date: Friday, June 26, 2009, 9:26 PM For a liver transplant.. .they try to see if the liver is close in size to the original. The main thing they check for, though, is that the blood type is compatible. For the kidney, it is more indepth. It is important to have the same blood type, but it is also important to check for antigens, like in the post that Bob listed about histocompatibility. They do have a procedure for the kidneys now, though, where they can flush the kidney antigens out called plasmapheresis, so that the organ can be transplanted. Medscape is a great source of information. All you have to do is sign up and you can read it all for free. Bob, I had no trouble going into and reading your link you posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 The using of the oatmeal baths, no soaps and scratching works. There is a medication for the itching.....which I have not read up on yet......Cholestyramine oral.....Anyone heard of it or used it? Lots of hugs and kisses to everyone. Lyncia From: abijann <no_reply > Subject: Lyncia To: livercirrhosissupport Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 yes i have heard of it. I think you are referring to Cholestyramine it is a Antihyperlipidemic Bile Acid Sequestrant so it lowers your cholesterol and reduces the bile salts that cause itching. But it causes constipation.  Oral-Local: Cholestyramine binds with bile acids in the intestine, preventing their reabsorption and producing an insoluble complex, which is excreted in the feces. * Antihyperlipidemic, Cholestyramine binds with bile acids in the intestine, causing an increase in hepatic synthesis of bile acids from cholesterol. This depletion of hepatic cholesterol increases hepatic low-density lipoprotein (LDL) receptor activity, which removes LDL cholesterol from the plasma. Cholestyramine may also increase hepatic very low–density lipoprotein (VLDL) production, thereby increasing the plasma concentration of triglycerides, especially in patients with hypertriglyceridemia. * Antipruritic (cholestasis), Reduction of serum bile acids and subsequent reduction of excess bile acids, which are deposited in dermal tissue, may lead to reduced pruritus. * Antidiarrheal (postoperative colonic bile acids), Cholestyramine binds with and removes bile acids. * Antidote (anion-exchange resin), Because it is an anion-exchange resin, cholestyramine is capable of binding negatively charged medications as well as some others, causing a decreased effect or shortened half-life. there are a list of stuff that needs to be evaluated. I know you mentioned a combination of mineral oil ...i cant locate this combination but that's not to say it does not exists ________________________________ To: livercirrhosissupport Sent: Saturday, June 27, 2009 10:19:53 PM Subject: Re: Lyncia The using of the oatmeal baths, no soaps and scratching works. There is a medication for the itching..... which I have not read up on yet......Cholestyra mine oral.....Anyone heard of it or used it? Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogroup s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 I haven't started it, it scares me. Constipation......I really need that!  Thank you. Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 do you have this medication? ________________________________ To: livercirrhosissupport Sent: Sunday, June 28, 2009 1:44:06 AM Subject: Re: Lyncia I haven't started it, it scares me. Constipation. .....I really need that!  Thank you. Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Yes. Just have not started it. You have to have it 4 times a day.....either 1 hr before or 2 hrs after any type of medication. Co codinationing this is going to take some serious timing. Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 DRUG INTERACTIONS: Cholestyramine decreases the absorption of warfarin (Coumadin), thyroid hormones (Synthroid, Levoxyl., Liotrix), digoxin (Lanoxin), And thiazide diuretics (Hydrodiuril, Oretic, Dyazide, Maxide). Therefore, these drugs should be administered 1 hour before or 4-6 hours after the administration of cholestyramine. Cholestyramine decreases the conversion of leflunomide (Arava) to its active form and reduces the absorption of vitamin A, D, E and K.  DRUG INTERACTIONS: Before you take this medication, tell your doctor of any over-the-counter or prescription drugs you take, especially of: digitoxin, digoxin, diuretics (water pills), penicillin G, phenobarbital, phenylbutazone, propranolol, thyroid, tetracycline, warfarin and other blood thinners, vitamin A, vitamin D, vitamin E. Do not start or stop any medicine without doctor or pharmacist approval. ________________________________ To: livercirrhosissupport Sent: Sunday, June 28, 2009 6:38:00 AM Subject: Re: Lyncia Yes. Just have not started it. You have to have it 4 times a day.....either 1 hr before or 2 hrs after any type of medication. Co codinationing this is going to take some serious timing. Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Thanks, . That sounds scary, but drugs are scary also. Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 It seems very hard to coordinate your medication when you first have to do it, but it's not that hard once you have the system down. That will have to be done after your transplants too. It drove me crazy at first and I didn't think I could ever do it even though they give you a chart of all your meds and when to take them. It was so overwhelming at first, but it gets easier as you go on. Penny > > From: abijann <no_reply@yahoogrou p s.com> > Subject: Lyncia > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Saturday, June 27, 2009, 9:00 PM > > I used Vel soap for years, but I cannot find it anywhere, now. I > read on the internet that they no longer make it...I don't know > if this is true or not. > > By the way, how was the Aveeno bath...did it help your itching? > Some people take oatmeal and use it for a facial mask. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Thanks Penny! This has been a overwhelming week, but I am getting organized (that makes me feel better) and gifting my nieces and nephews with family history. I am trying to simplify things so that I don't have so much to dust. haha I will be keeping my puppy......Everyone wants her. Lots of hugs and kisses to everyone. Lyncia   Subject: Re: Lyncia To: livercirrhosissupport Date: Sunday, June 28, 2009, 4:06 PM It seems very hard to coordinate your medication when you first have to do it, but it's not that hard once you have the system down. That will have to be done after your transplants too. It drove me crazy at first and I didn't think I could ever do it even though they give you a chart of all your meds and when to take them. It was so overwhelming at first, but it gets easier as you go on. Penny > > From: abijann <no_reply@yahoogrou p s.com> > Subject: Lyncia > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Saturday, June 27, 2009, 9:00 PM > > I used Vel soap for years, but I cannot find it anywhere, now. I > read on the internet that they no longer make it...I don't know > if this is true or not. > > By the way, how was the Aveeno bath...did it help your itching? > Some people take oatmeal and use it for a facial mask. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 Lyncia are you on thyroid med? i wanted you to see the the insert on interactions ________________________________ To: livercirrhosissupport Sent: Sunday, June 28, 2009 9:28:37 AM Subject: Re: Lyncia Thanks, . That sounds scary, but drugs are scary also. Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2009 Report Share Posted June 28, 2009 No I am not on throid meds. I will get the insert and read it again. Thanks Lots of hugs and kisses to everyone. Lyncia   From: abijann <no_reply@yahoogrou p s.com> Subject: Lyncia To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, June 27, 2009, 9:00 PM I used Vel soap for years, but I cannot find it anywhere, now. I read on the internet that they no longer make it...I don't know if this is true or not. By the way, how was the Aveeno bath...did it help your itching? Some people take oatmeal and use it for a facial mask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2009 Report Share Posted July 4, 2009 I will do that. Thanks! You and your knowledge are so appreciated.! Happy 4th of July! You are a sparkler! Lots of hugs and kisses to everyone. Lyncia From: abijann <no_reply > Subject: Lyncia To: livercirrhosissupport Date: Saturday, July 4, 2009, 1:54 PM I think I would discuss your problem, with disability, with your transplant doctors. I would let them know that the judge and lawyers don't understand what you are going through. I would ask them for documentation that you are on the transplant list for both organs. I would ask them if they could give you a letter to present to them explaining your symptoms and signs and the fact that your doctors consider you to be disabled. When doctors back you up, you have a much better chance. (Even if SS hired their own doctor to check you...your personal physicians know you alot better and can override this doctors evaluation of you) I think I would start printing out copies of things that show your signs and symptoms and giving them to the lawyer that you have that doesn't seem to be researching your medical conditions on his own, like he should. http://emedicine. medscape. com/article/ 186101-overview I would list every medical condition you have and every procedure or surgery you had because of it. I would give them a list of all your medications and what you have to take each one for. I would ask a friend to help you collect this material and present it to them. You can tell them that you have a friend who is willing to help you handle things you cannot handle yourself, now. Tell them if you have any of the following: Cannot sleep, sleeping different hours Trembling and having difficulty writing. Cannot eat or don't feel like eatting Having trouble getting your breath. Any pains you may have. Having trouble standing for very long List ever symptom or sign you have. Speak up...don't be afraid to tell them what you know and think. You don't have to be dishonest... tell it like it is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Lyncia: Please don't take me wrong !! Most Canadians hated the Bush administration not the average American. We watched your last election and routed for Obama more than we did our own change in Government around the same time. For me personally, I find that it's truly insulting what some of the popular off-news programs say about Canada. It's so sad that some Americans actually believe that crap is true and don't investigate further. We Canadians tend to be extremely passive and don't make a lot of noise when we feel insulted. Like by some Senator in your south that wanted a fence put up between Canada and the US. Obviously, he knows nothing about our border or he couldn't have been that stupid. I'm just one that feels that most of us don't investigate further what we're told on the news and thus accept the slant as the truth. Gloria ________________________________ To: livercirrhosissupport Sent: Sunday, July 5, 2009 6:48:17 PM Subject: Re: Jan Thank you Jan. I guess I didn't realize that the Canadians think so badly of us in the US. Or that is how it hit me today. I am waiting on my kristalose to work.....so I may just be a little touchy. Lots of hugs and kisses to everyone. Lyncia > Abijann: > > What other countries holidays might you be inquiring about ?? In Canada we > do not have a July 4th but do observe July 1st as Canada Day. Considering > our population here is much smaller than the USA we still do it up pretty > big. Then, of course, we almost feel as though we share in your July 4th > because of TV. > > As for medical care differences between us ! All we know is that it's not > safe to travel to the US without it... Our medical system would pay out the > doctors etc. there based on our system and we would personally have to foot > the bill for the balance, which we know is huge. The extra insurance to > travel there is on a sliding scale according to a person's age and probably > chance of getting sick. My son, who is 30 is driving down to California > next month and his union coverage will cover the extra - just in case. > However, I don't think I'd be travelling across the line again any day too > soon. > > Besides, now that Canadians have to have a passport even to travel from one > end of our country to the other, because the plane crosses into US airspace > - it's a little upsetting to us. We used to be able to cross over with just > our usual ID but that has been stopped as a result of the US fear of > terrorists coming from Canada. It was all absolutely proven wrong that any > terrorist used our shared borders; however, even if they did - it would have > been the US border guards that let them in - not the Canadians. > > Truthfully, when the dust settles, it likely won't even cause a ripple in > the number of Canadians that will come down for holidays. The east coasters > like to go down as far as Florida and us in the west call California or Palm > Springs etc. our winter homes. > > Gloria > > > > > ____________ _________ _________ __ > From: abijann <no_reply@yahoogrou p s.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, July 5, 2009 11:11:14 AM > Subject: Jan > > > > > > Welcome back. I hope things are going well with you. > I had serious computer problems, once. Didn't think I would get > back to the group at all...but here I am. Hope you got all > the kinks worked out now. Did you have to reinstall all the > things yourself? > > How have you been feeling? Anything new that you could share > with us? I think everyone is out enjoying the summer air and the > 4th of July. > > I never got into holidays that were observed by other countries... > it might be interesting. I have read things about people of > other countries who came to the USA and needed medical care and > how they think differently than us in many matters and how doctors > have to be careful when they deal with them....that was quite > interesting. > > > > > > ____________ _________ _________ _________ _________ _________ _ > Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr. com/gift/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 Gloria, Please let me tell you that some of my favorite people are from (or in) Canada. When I was able to work, I worked for one of the top four international auditing firms. I found that I was very fortunate to work with all the wonderful people from the other countries. I understand the frustrations believe. Thank you for answering me. Looking forward to more. Lots of hugs and kisses to everyone. Lyncia > Abijann: > > What other countries holidays might you be inquiring about ?? In Canada we > do not have a July 4th but do observe July 1st as Canada Day. Considering > our population here is much smaller than the USA we still do it up pretty > big. Then, of course, we almost feel as though we share in your July 4th > because of TV. > > As for medical care differences between us ! All we know is that it's not > safe to travel to the US without it... Our medical system would pay out the > doctors etc. there based on our system and we would personally have to foot > the bill for the balance, which we know is huge. The extra insurance to > travel there is on a sliding scale according to a person's age and probably > chance of getting sick. My son, who is 30 is driving down to California > next month and his union coverage will cover the extra - just in case. > However, I don't think I'd be travelling across the line again any day too > soon. > > Besides, now that Canadians have to have a passport even to travel from one > end of our country to the other, because the plane crosses into US airspace > - it's a little upsetting to us. We used to be able to cross over with just > our usual ID but that has been stopped as a result of the US fear of > terrorists coming from Canada. It was all absolutely proven wrong that any > terrorist used our shared borders; however, even if they did - it would have > been the US border guards that let them in - not the Canadians. > > Truthfully, when the dust settles, it likely won't even cause a ripple in > the number of Canadians that will come down for holidays. The east coasters > like to go down as far as Florida and us in the west call California or Palm > Springs etc. our winter homes. > > Gloria > > > > > ____________ _________ _________ __ > From: abijann <no_reply@yahoogrou p s.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Sunday, July 5, 2009 11:11:14 AM > Subject: Jan > > > > > > Welcome back. I hope things are going well with you. > I had serious computer problems, once. Didn't think I would get > back to the group at all...but here I am. Hope you got all > the kinks worked out now. Did you have to reinstall all the > things yourself? > > How have you been feeling? Anything new that you could share > with us? I think everyone is out enjoying the summer air and the > 4th of July. > > I never got into holidays that were observed by other countries... > it might be interesting. I have read things about people of > other countries who came to the USA and needed medical care and > how they think differently than us in many matters and how doctors > have to be careful when they deal with them....that was quite > interesting. > > > > > > ____________ _________ _________ _________ _________ _________ _ > Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr. com/gift/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2009 Report Share Posted July 14, 2009 Went to the liver doctor today. MELD still low .....went from 10 to 13. I walk like and old old woman.......Usually go back in 4 months but now go back to 2 months. I will have two transplants.....they won't do the kidney and liver again. I will be offline taking my son (caretaker) to New Mexico to share family information with him and to enjoy the mountains near Angel Fire. Thanks be to God for he creates our tomorrows Love, Lyncia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Does anyone know if there are any med's they can give to help with the fatigue level? It has been bad for some time now, but last couple of months are just ridiculous...really having a major affect on my quality of life...am going to get blood work, and an endoscope next month...and see my liver doc in Nov....guess I should reside myself to this is the way it is, and is going to be except likely worse as this beast progresses...just had to vent some...thanks Dave ________________________________ From: abijann <no_reply > To: livercirrhosissupport Sent: Saturday, July 18, 2009 9:16:30 PM Subject: Lyncia Need update on how you are doing and that wonderful grandbaby of yours. How much does she weigh now? Any pictures updates? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Dave: Personally the only thing I can offer is understanding. The fatigue has been the most crippling part of this battle with the dragon. Mine has already had the profound affect on the quality of my life and was the hardest thing to swallow. It was also the hardest thing to try to explain to those around me. Add that to my realization that I was stuffing my feelings of anger and I realized that I needed some help to finally get to the acceptance level. I got that help in the form of a couple of sessions of counselling plus a couple of my meetings of AA. It was such a release to finally accept that I will not feel guilty for that that I can not control. When I was getting the help from the North Island Liver Society nurses, leading up to my first treatment, I understood that especially the shot of Interferon might cause extreme fatigue at least for a day or two. So, I chose to take that shot on a Friday night and planned not to get dressed or do anything for the weekend. What I was not truly prepared for, was that the treatment didn't work and the crippling fatigue didn't really lift very much. Now that I am doing a 2nd round of TX as a guinea pig - I never know from one weekend to the other what it will be like. However, some days during the week I can actually put in a good 4 - 6 hours work without a nap and others, the brain fog etc. is just too intense and not only can't I concentrate; but, I need to go for a nap. I just figure that my whole system has been triggered for a huge fight for it's very life so who wouldn't get tired?? Therefore, if what my system needs is for me go to bed and let it fight, then that's what I'm going to do. My husband has pretty much gotten used to this after 5 yrs now and so we definitely don't make hard and fast plans for me to go anywhere on weekends (he still could if he wanted) and we are both home bodies in the evening now anyway - so it doesn't much affect him. Gloria ________________________________ Does anyone know if there are any med's they can give to help with the fatigue level? It has been bad for some time now, but last couple of months are just ridiculous.. .really having a major affect on my quality of life...am going to get blood work, and an endoscope next month...and see my liver doc in Nov....guess I should reside myself to this is the way it is, and is going to be except likely worse as this beast progresses.. .just had to vent some...thanks Dave ____________ _________ _________ __ From: abijann <no_reply@yahoogroup s.com> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Saturday, July 18, 2009 9:16:30 PM Subject: Lyncia Need update on how you are doing and that wonderful grandbaby of yours. How much does she weigh now? Any pictures updates? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 Lyncia, glad you had a safe and happy trip and that your grandbaby is doing well. I know you must be frustrated beyond words about the S.S.!!! I would first find an atty. who will take your case and then tell the current one to get lost! I had an atty. when I got my SSI but he literally did nothing really except to send away for medical records even leaving me to go pick some up the day before my hearing. He uttered maybe about 10 words in court. My medical records are what spoke for themselves so maybe your atty. hasn't been diligent enough in gathering all those. I wish you the best~~~Debbie > > > > Subject: Re: Lyncia > To: livercirrhosissupport > Date: Sunday, July 19, 2009, 4:23 PM > > > > > > > Dave: > > Personally the only thing I can offer is understanding. The fatigue has been the most crippling part of this battle with the dragon. Mine has already had the profound affect on the quality of my life and was the hardest thing to swallow. It was also the hardest thing to try to explain to those around me. > > Add that to my realization that I was stuffing my feelings of anger and I realized that I needed some help to finally get to the acceptance level. I got that help in the form of a couple of sessions of counselling plus a couple of my meetings of AA. It was such a release to finally accept that I will not feel guilty for that that I can not control. > > When I was getting the help from the North Island Liver Society nurses, leading up to my first treatment, I understood that especially the shot of Interferon might cause extreme fatigue at least for a day or two. So, I chose to take that shot on a Friday night and planned not to get dressed or do anything for the weekend. What I was not truly prepared for, was that the treatment didn't work and the crippling fatigue didn't really lift very much. Now that I am doing a 2nd round of TX as a guinea pig - I never know from one weekend to the other what it will be like. However, some days during the week I can actually put in a good 4 - 6 hours work without a nap and others, the brain fog etc. is just too intense and not only can't I concentrate; but, I need to go for a nap. > > I just figure that my whole system has been triggered for a huge fight for it's very life so who wouldn't get tired?? Therefore, if what my system needs is for me go to bed and let it fight, then that's what I'm going to do. > > My husband has pretty much gotten used to this after 5 yrs now and so we definitely don't make hard and fast plans for me to go anywhere on weekends (he still could if he wanted) and we are both home bodies in the evening now anyway - so it doesn't much affect him. > > Gloria > > ____________ _________ _________ __ > > Does anyone know if there are any med's they can give to help with the fatigue level? It has been bad for some time now, but last couple of months are just ridiculous.. .really having a major affect on my quality of life...am going to get blood work, and an endoscope next month...and see my liver doc in Nov....guess I should reside myself to this is the way it is, and is going to be except likely worse as this beast progresses.. .just had to vent some...thanks > Dave > > ____________ _________ _________ __ > From: abijann <no_reply@yahoogrou p s.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Saturday, July 18, 2009 9:16:30 PM > Subject: Lyncia > > Need update on how you are doing and that wonderful grandbaby of yours. > How much does she weigh now? Any pictures updates? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2009 Report Share Posted July 21, 2009 Debbie & Lyncia- I had the same kind of lawyer, He handles everything. My case was supposed to go to a hearing,but it never happened. My lawyer got it approved before the hearing date. I never had to say anything after my initial application, which was denied. Then I got my lawyer who specialized in SSD cases. He was a Godsend! Love,Jill We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. > > > From: Gloria <gadamscan@. ..> > Subject: Re: Lyncia > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Sunday, July 19, 2009, 4:23 PM > > > > > > > Dave: > > Personally the only thing I can offer is understanding. The fatigue has been the most crippling part of this battle with the dragon. Mine has already had the profound affect on the quality of my life and was the hardest thing to swallow. It was also the hardest thing to try to explain to those around me. > > Add that to my realization that I was stuffing my feelings of anger and I realized that I needed some help to finally get to the acceptance level. I got that help in the form of a couple of sessions of counselling plus a couple of my meetings of AA. It was such a release to finally accept that I will not feel guilty for that that I can not control. > > When I was getting the help from the North Island Liver Society nurses, leading up to my first treatment, I understood that especially the shot of Interferon might cause extreme fatigue at least for a day or two. So, I chose to take that shot on a Friday night and planned not to get dressed or do anything for the weekend. What I was not truly prepared for, was that the treatment didn't work and the crippling fatigue didn't really lift very much. Now that I am doing a 2nd round of TX as a guinea pig - I never know from one weekend to the other what it will be like. However, some days during the week I can actually put in a good 4 - 6 hours work without a nap and others, the brain fog etc. is just too intense and not only can't I concentrate; but, I need to go for a nap. > > I just figure that my whole system has been triggered for a huge fight for it's very life so who wouldn't get tired?? Therefore, if what my system needs is for me go to bed and let it fight, then that's what I'm going to do. > > My husband has pretty much gotten used to this after 5 yrs now and so we definitely don't make hard and fast plans for me to go anywhere on weekends (he still could if he wanted) and we are both home bodies in the evening now anyway - so it doesn't much affect him. > > Gloria > > ____________ _________ _________ __ > > Does anyone know if there are any med's they can give to help with the fatigue level? It has been bad for some time now, but last couple of months are just ridiculous.. .really having a major affect on my quality of life...am going to get blood work, and an endoscope next month...and see my liver doc in Nov....guess I should reside myself to this is the way it is, and is going to be except likely worse as this beast progresses.. .just had to vent some...thanks > Dave > > ____________ _________ _________ __ > From: abijann <no_reply@yahoogrou p s.com> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Saturday, July 18, 2009 9:16:30 PM > Subject: Lyncia > > Need update on how you are doing and that wonderful grandbaby of yours. > How much does she weigh now? Any pictures updates? > > Quote Link to comment Share on other sites More sharing options...
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