What will you do with your Stimulus Check?

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Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/27/2008 9:36 PM (GMT -7)   
Lets see, the weekly trips to Houston to try to get my husband on the transplant list, parking fees, occasional food if they keep him to long, weekly trips to town to have the fluid (ascites)drained from his stomach to keep it from exploding, (here lately it has been twice weekly), try to put some money back in case they do decide he is worthy of a transplant, we have to get any dental work that needs to be done before they list him. Oh yeah, then the weekly drive to houston to take the classes they require if they find you worthy of a transplant and you live long enough to attend the 6 weeks worth of classes, before you get listed of course never coordinated to be done on the same day something else is done, even tho they classes are always 4:30 pm - whenever. Somewhere in there try to find the extra to buy the meds, right now he is doing without some each month, just cant afford it even with medicaid filling 3. He takes 7 meds ( not including supplements) to keep him alive long enough to hopefully get listed. Still dont know what else they are going to require of us, no one answers the phones lol
He made the comment today that he feels like he is due for a bad spell, hasnt had one in a couple of months. I mentioned that when he moved in here he was having a bad spell and he said no honey, that was at the upside of the bad spell. He has been getting very shaky lately out of the blue and has felt the uncontrollable urge to move, do something, anything. He feels like he is running out of time. Several times today he has just drifted off in the middle of a sentence. Since I have never been around when a bad spell starts I dont know exactly what to expect. If it is worse than what he was when he moved in omg I dont see how anything could be worse and still be alive. They have removed a total of 8700 ascites between monday and thursday last week and looking at him right now he is looking like he needs to be drained again. He has had a certain pallor/tint to his skin the last few days, more noticeable today than before almost a dusky gray/yellow if that makes sense.
I had some things in the freezer I had bought before he moved in to treat myself with when I was having a bad day but since he seemed so down I went ahead and cooked him a great dinner, thought he might eat a little more than he did, he has been eating really well up until yesterday. So for dinner I made him a nice Filet Mignon, Lobster Tails in Garlic Butter sauce, Twice Baked Cheesy Mashed taters and Steamed Broccoli and Cauliflower. The Filet was a 4 oz one( pre portioned packages). He ate 1/2 of that, a couple of bites of taters a few bites of veggies and 3 lobster tails and that was it.
He doesnt seem to be losing weight the way he was but I dont know if that is a false reading or not, we always weigh after his paracentisis but with him not having bowel movements the way he should we know he is full of it when we weigh him. Maybe we should start weighing before and after a BM lol sheeesh, I have always paid this much attention to my dogs stools, right down to color, odor, shape size and content, but that is a dog, I NEVER thought I would be concerned about what went down the commode lol
sorry, I am walking a wire here, I want a smoke so bad it isnt even funny, I dont know if he goes downhill right now if I will be able to stick with the no smoking, its tough enough being around the house all of the time when I am used to going all the time.
have a great week :)
Therese

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/27/2008 10:48 PM (GMT -7)   
Hi Therese,
You have your hands full. I'm sorry that you face the extra burden of weaning yourself from smoking while dealing with your husband's disease. Either one alone is a serious challenge. I hope that you can hang in there with the non-smoking. I spend a lot of time in a seniors' community (Sun City West, AZ) where my folks live and I see first-hand the price paid by the smokers. In any group, you can tell which people smoked the longest -- I never would have imagined how dramatic the reduction in their quality of life.
Reading what you're going through with your husband, I admire your attitude, as evidenced by the "lol"s in your post. Keep us up to date on what's going on with you. As you know, there are many caring members of the forum ready to listen and offer encouragement. I hope that things get easier and that you and your husband can spend good time together.
Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 4/28/2008 5:10 AM (GMT -7)   
Your meal sounds fabulous! I'd love to spend my rebate check on something similar, but realistically it will go to co-pays!

Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/28/2008 5:12 PM (GMT -7)   
lol cary, I had bought that stuff in one of those value box things, had the shrimp, beef, chicken, seafood, etc etc, it ended up being expensive but it was just me so I figured what the hey, spent 400 bucks on meat that would last me at least a year if not longer. Welp, we are going thru that pretty fast now since hubby thinks he has to have a slab of meat everytime he eats something. usually beef. Wont listen that he shouldnt have it.
Therese

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/28/2008 8:46 PM (GMT -7)   

Therese  I know exactly how you feel about the poop and everything.  If you cut back on the salt that may help the fluid.  It took us a long time but I think we have that down.  Don't cook with any salt and don't cook anything that is pre-made.  After you cook sprinkle about 1/4 tsp on the food.  That way you get the taste of salt and its not too much.  Anything out of a box or can is too much salt.  I know its hard but that might help.  Also the color of his skin you were talking about.  My husband has that color at least every other day for a year now.  He has to poop though because of amonia.  As far as the meds why won't the Dr. give you some free samples.  Good lord it isn't anything out of their pocket.  Doesn't that just make you furious about the 6 wk course.  If you had know he could have taken it when he was not quite so sick.  Why do they wait until the last minute to inform you. Hang in there.  It sounds like you can do this.  Keep us posted.

 

JoAnn


Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/28/2008 10:46 PM (GMT -7)   
talk about waiting til the last moment............ Finally got a call back from the coordinator, she said we still had some labs and the transplant psyc to see and that is all we needed before listing, I asked her what kind of labs, in the last 30 days he has had14 vials the first time and 17 vials of blood the second time, she said they needed to test him to make sure he doesnt have HepC ?????? OMFG I liked to have went thru the roof when she said that, I kept my calm tho and asked her what do you mean?? She said "well we need to make sure he doesnt have HepC, that wasnt part of the diagnosis, to make sure it was just cirrhosis. " I was like....... ummmm, ya'll are the ones that told US he had HepC!!! And now you say you dont know??? Our Internal Medicine Dr said he had hep, We werent sure what kind so ya'll did a panel and said he had hep C and NOW you are saying you dont KNOW if he has hepC or not???? Well, she then replied, "oh sorry, I was looking at the wrong thing. We need to check and see what his viral load is." she then said that she needed to make an appointment for the labs and that he still needed to see the psyc and gave me the number to schedule the appointment. I called the psych to make the appointment and the assistant, Connie, said " I let everyone know that the Dr is booked thru the end of June and it will be at least JULY before you can get in for an appointment." I LOST IT! I was in walmart, trying to get groceries for 2 different households separated and loaded on the conveyor belt, write down numbers, having been shopping with an ammonia ladened muddled thinking man that is a control freak from the word go for 3 hours in a packed walmart where everyone is panicking about increasing prices...........Havnt had a smoke and craving one intensely, thinking we only had 1 small hurdle to get over, and that would be accomplished in a week or so..... Only to have this person tell me it will be MID JULY!!!!! before we can even talk with someone. I started on a barely controlled rant, I didnt want ALL of walmart to hear my tirade, I explained that we were trying to get him on the list... etc etc... She asked who his coordinator was and I told her, she said that the coordinator should have told him to make an appointment for the psych eval before they ever started the physical evaluation!! That they knew the Dr was booked almost 2 months out!. By this time I was in tears...... Frustration doesnt even begin to describe my feelings at that moment, then hubby ran into my heel with the darn electric buggy, me still trying to talk coherently and rationally... I just about blew my last cork....The psych asst was very patient and understanding. She asked his MELD, I told her, she asked if they were the last stop in the quest for the listing, I told her yes, explained about the hernia and the ascites build up and the urgency.... that I doubted he would be alive in July to even get listed....She told me to call back tomorrow, she will talk with the Dr and either call me back or I am to call her in the afternoon and see if she can overbook the Dr.
Back to the so called "Coordinator" I asked her couldnt we have the labs done here since we go to the hospital every thursday without fail?? She can fax or call the orders up here and there would be no prob........ She said No, They might have to send out labs or something and she would just rather we get them done down there. I was like so You expect us to drive 87 miles, eating gas at current prices, another 12 bucks for parking and 87 miles back, so that you can draw 4 tubes of blood that can be done here at this hospital just as easily and a whole lot sooner...... Do ya'll need the money for those tubes of blood and testing as bad as we need it to survive and have gas to get down there when needed?????
She is going to schedule his labs for whatever day we have to go see psych.
There never has been a mention of Bk having the interferon treatments. Actually, the only thing the "Coordinator" has discussed with us was when she handed us the packet of papers to fill out then walked out of the room, not telling us what to do with the papers or where to go after that.....
Hubby has said all along DO Not rock the Boat....... SORRY!!! When someone is not doing their job properly, and someone elses life depends on this persons actions....... its time to rock something.
Sorry for the rant, thanks for listening........ Again :)
Therese
OH! btw, ran into a friend I used to work with...... he is going down the same path.... hep c.. blood transfusion years ago.... I emailed him and told him and his wife to come here.... His dr told him.... he had Hep C, He cannot get a transplant, I spent the next 20 minutes standing in the lunchmeat section at walmart telling him dr's, numbers, things to watch for etc.... His family dr didnt give him any meds.......... gave him no hope whatsoever..... and he asked bk what he does to help with the depression he has been fighting...... he had a heart attack last year and has diabetes, insulin dependent.. lost his license to drive trucks or even the school bus.....
The way I figure it, I may be fighting the walls right now.... but at least I can give him and his wife some do's and dont's about getting pushed to the side :) I also gave him my husbands Dr's number, if it wouldnt have been for this Dr I honestly think my hub would be dead by now, this dr actually cares.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/28/2008 11:17 PM (GMT -7)   

Wow, that is really unbelievable!  I don't blame you one bit for ranting or "rocking the boat!"  I cannot believe that these types of things happen.  Thank God for Mayo, where everyone has access to a patient's records instantly and know what has and hasn't been done, and everything can be done there.  And now they have the new hospital on the campus, so I don't even have to go to a hospital other than Mayo.  I am, indeed, very fortunate.

Prayers for your continued courage, my dear.

Hugs,

Connie

ETA:  Oh, yes...about the $300 rebate I'll be getting:  $100 towards my Sept. trip to NYC; $100 deposited to savings; $100 towards a credit card balance payoff.  ;)

Post Edited (hep93) : 4/29/2008 12:20:16 AM (GMT-6)

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