Spleen problems

Natalie, let the doctors make the decisions...or at least the doctors and Mark.  Don't take this on.  You already are dealing with more than is comfortable.

Liver patients often have enlarged spleens--how large varies.  Mine is somewhat enlarged, but has never bothered me.  If it is removed, yes, she would be more susceptible to infection so precautions would need to be taken:  Perhaps a mask for her if she is around sick people, and freqent hand washing and use of Purell hand sanitizer for all of you.

Don't let this newest blip on the radar stress you out.

Hugs,

Connie

Connie,

I am letting them figure it out. I am just going to wait and see what he says today. She goes at 4:45, and I guess Mark will fill me in. I am not going to add this to my stress load. If they do remove it, I will just take extra precautions like you said, and figure out how to manage keeping the house a little cleaner. It is difficult when there are at times as many as 8 people here. Between us, 5 kids are going to be sick quite often, so we will have to find a way to manage that. But I am taking the backseat, until I have to take the front.

Natasha, you are right, Connie does give wonderful advice. I know that the enlarged spleen is part of liver disease, it is just that everything with her is hitting almost all at once. Or at least the symptoms of it. This roller coaster ride isnt so fun! I am glad to see that your husband has quit drinking! I will pray that he continues down this path and hopefully he will get a little better in time.

Things around here can go from being quite calm to hectic. Whether it is from her being sick, in a bad mood or the kids just not getting along. His 15 year old and my 6 year old like to fight a lot! You would think that the 15 yr old would be a little more mature in the matter, but oh well. We are now making schedules for t.v., computer and game time. That way no one can argue about it, that seems to get Anna going pretty bad. We are also going to sit down with the kids and Anna separately and have talks about the way things need to be around here.

I know that it would probably be best for everyone involved, including Anna if she were to be in a nursing home, but he refuses. He made a promise to her when she first got sick that he wouldnt put her there and does not want to break it. He didnt realize then, that she would get this bad. He says he doesnt stand up to her like I think he should because he wasnt raised like that. Well, neither was I, but there is only so much I am willing to deal with. He knows where I stand and Im not going to change.

Sorry to ramble on, but it gets it out. Hope everyone has a good day

Natalie

connie, i apologise for saying you are always right, its just in my case, the things you have told me and taught me, always have been right. i thank you for that.
i hope the eval is still going well and that you arent suffering too much.
xxnatasha.xx

Connie, we set it for July 2nd. However we havent told her, because it seems she likes to get sick or act up right before something important. If you get my meaning. Also, you may not always be right, but any advice you have given me, has always been right or appropriate. Also, very much appreciated.

David, I agree completely. I feel like if she was in a home, they would make sure she took her medicine and she wouldnt have a chance to dump it down the sink. I have caught her a few times, she is sneaky, she waits until I turn to put the Lactulose bottle back on the shelf and does it. So now, I bring it to her and stand over her to make sure she takes it. I also think she is putting herself at risk because she wont bathe! The doctors have told her any infection at this point can kill her, and I often remind her. After us getting tired of smelling her we made her take a bath. Of course I wash her while she sits on a shower chair and I found the whole underside of her belly raw and blistered. That is where the smell was coming from. She had a skin infection from refusing to take a bath and wearing depends. It makes her sweat and stay moist under there, add the body heat and bam, good place for bacteria to grow. When I try to tell him this stuff, he says he knows but gets upset. So, I dont say a word about it anymore, he knows if the behavior continues and he doesnt do something about it, I wont take care of her anymore, and he will at that point have no choice.

I will get some of that and try it. Anything at this point to try is better than nothing. :)

Thanks Shellshocked, it is hard, but we manage. I know it is hard when you are dealing with the HE. We went through about 4 months of every other week she had a really bad spell. We woke up to find her in a coma twice. It was very scary, but we managed. Through adjusting her medicine, with and without the doctors, we have had a good couple of months. At least when it comes to encephalopathy. A lot of other problems have arised since then, but that is to be expected. She is in the very end stages of the disease. We now treat the symptoms, not the disease.

I know it is hard. I kind of got thrown into this, with the knowledge of liver disease. When I heard of it, I always thought it was just due to drinking too much, but have now learned and continue to learn. Take one step at a time, day by day. It is a roller coaster ride, and it is tough, but you found a group of knowledgeable people who actually care.

Take care and anytime you need to talk, I am here, along with many others

Natalie

Shellshocked , Seen your concerns about Xifaxin in another thread . I found myself weighing out the expense options between Medicare D with the donut hole scenario and getting the Xifaxan direct from Salix through patient assistance program . It's had me in a jam for awhile now but I still haven't picked up a part D yet . I get Xifaxin at no cost in 90 day supplies from Salix but when I sign on to part D I will be responsible for a co-pay and then within months be stuck with paying full price when I reach the medicare cap . The lactulose , Lexapro are the only other behind the counter meds I take and the cost for those is tolerable ( My doc gives me Sample packs of Lexapro on occasion also ) . Problem is that the transplant team requires I pick a part D plan before transplant so they know my prescription cost will have some coverage once the transplant is done . If you think Xifaxin is expensive wait till you see a copy of what he may have to take potentially afterwards . I feel your frustration on this meds thing .


A. Ziffle

Thank you, A. Ziffle - I am definitely going to contact Salix. That is some much needed light in my little tunnel. What a great idea.

I feel like if we can get the HE under better control everything will be better, I gave him a double dose this morning with breakfast, and will continue the double doses throughout the day. We have our first GI/Hepatologist appointment tomorrow morning. I am scared and also somewhat relieved, just spoke to our home health care nurse who thinks I need an aid here for a little while every day so I can get things done - like the Medicaid, and SSD.

My step brother goes through the companies that makes his medicine also. He saves a lot of money he doesnt have since he is uninsured. He goes through a clinic here and they assist him. It is really worth looking into.

If you dig hard enough you can find resources that will help , I have never been without a job or even used unemployment through my career and trying to figure some of the mess out with assistance has proven to be as challenging as the disease itself . It boggles my mind how other people who have never held a job , paid taxes , FICA or for that matter illegally enter this country can easily receive these benefits . Oh well , I aint gonna go there but it does chap my hide .



A. Ziffle

Medicare has a program to help you decide what Part D plan is best for you on
its website. You have to enter where you live, what drugs you take and their daily dosages, and you can sort the results by cost. Too many of them do not cover Xifaxan without an exception being made, and I did not want to have to go thru another bureaucratic hassle. So, I only picked plans to consider that covered Xifaxan. to that, I added the names of the post transplant drugs, and their usual daily dosages which the social worker gave me. It is my understanding the immunosuppressant drugs prescribed for transplants are covered by Part B because I will still have medicare when I am transplanted. I am only 49 and have had my liver disease most of my life. I got a Medicare supplement for disabled individuals which pays the copays and coinsurance for Medicare Part B Medicare does not cover.

Susie

Here's the link to pharmaceutical companies giving help with certain drugs:

http://www.top5plus5.com/Indigent%20Drug%20Programs.html

Re: Post transplant meds, I have both Medicare (A and B) and Medicaid Medically Needy.  I also have Part D.  Mayo told me I would need a specialty pharmaceutical company that would keep the post-transplant drugs in stock and also would bill Medicare and Medicaid.  They also would have to deliver a month's supply of meds to the hospital and be willing to deliver to my home.  I found one such pharmacy in Jacksonville.  There were others on the list that were mail order.  My Part D will only pay for insulin and supplies should they be needed, antibiotics such as Bactrim, and BP meds and other things that I am already taking.  I pay $2.50 for a generic Rx and about $6.95 for a brand name.  Fortunately, right now I'm taking only generics.

Hugs,

Connie