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Author Topic: Not Sure What To Do!!!!  (Read 7595 times)
willieandwinnie
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« on: May 27, 2008, 03:45:08 PM »

It's me again. Don't you guys just get sick of listening to me.  :boxing; We got Len's labs back this morning. They are wonderful, Creatinine is 0.8, BUN is 15. The doctor said he needed more potassium, borderline low and his Total Carbon Dioxide is low at 18 (how in the world do you raise that?). We are going to talk to the GP tomorrow afternoon because Len's employer (before he got sick in 2001) has a position they like him to take. Len isn't sure he can do it (his words). He is still having the terrible pain in his groin area (they did sono-gram and the kidney is fine), but if he stands for too long or is up on it all day, it really bothers him. The next problem is he's sleep, he is up about every 1 1/2 - 2 hours peeing (yeah) but it screws with his sleep so bad that he doesn't get up most morning until 9 (not so good if you need to be at work at 7). He seems to have a good day and then it's followed by 2 bad days, an example is Sunday we went to a Squadron reunion and he stood for about 4 hours outside, Monday he was exhausted and hurt all over and today he didn't feel real good. This is making me crazy. Part of him would love to go back to work but we know what are disability income is and we live on it. If he goes back to work we lose Social Security and VA and then what happens if he works a couple of weeks and is just not able to continue? This has me so worried. I have a list I am going to take tomorrow and ask our doctor. I also need to contact the trauma surgeon, GI doctor, transplant surgeon and get their options. I worry because he is on this special diet forever and he only has about half his intestines, so the kidney transplant isn't my only concern. I told him after dinner tonight that his health is my #1 priority, then our financial well being is next. Am I just going crazy or just being realistic. Help? :thx;
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paris
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« Reply #1 on: May 27, 2008, 04:59:43 PM »

You are trying to deal with so much.   :cuddle;   I know you will figure this out.   I am glad Len's labs look good.  A lot of that is because you take such good care of him.   :thumbup; How do you feel about him working? Will you worry the entire time he is gone?  Would you rather he be home with you and enjoy life together and keep SS and VA?   Lots of questions, but I am sure the two of you will come up with a solution that is best for you.  I think you two deserve a break right now.   And no, I never get sick of your posts!  In fact, I always look for your posts.!   Let us know what the doctors suggest.  I'll keep you in my prayers.
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Sluff
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« Reply #2 on: May 27, 2008, 05:26:51 PM »

It's me again. Don't you guys just get sick of listening to me.  :


Not at all.
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willieandwinnie
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« Reply #3 on: May 27, 2008, 05:49:35 PM »

paris and Sluff  :bunny: Thank you so much. I always feel so much better when I'm on IHD. paris, I will worry myself sick all day if Len goes back to work, I'll wonder if he is drinking enough, is he standing too much, walking too much, not peeing enough, not eating lunch because he has a meeting or there isn't anything he can really eat around, is he being careful in the horrible traffic we have around here (he doesn't drive but to the barbershop anymore). I'm still working on my list to take to the doctors appointment tomorrow. I think if I really had my way, I'd just like Len to stay on disability and maybe we could just enjoy ourselves some, maybe in go on a road trip once in a while if we could. I don't want to take anything away from Len, and some days he feels pretty strongly about going back to work. We came real close to buying a new house just months before he got sick. I was the one that said let's just wait a little longer. Thank God for watching out for fools and drunks, because we would be homeless now. Len would like to be able to move and keeps telling me that there is nobody that deserves a new home more then me (he is just a sweetie). Sometimes he doesn't get that he is more important to me then anything. He says I got the short end of the stick with him. Not in my heart and eyes. I hope our GP makes it a little easier for us to decide tomorrow. Len has been on a long, very trying journey and I just want him to feel good, health wise and mentally. I'm hoping to sleep on this and in the morning things will be clearer to me. As always, thank you for reading out story and helping in out decisions. I love all of you.  :cuddle;
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jbeany
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« Reply #4 on: May 27, 2008, 06:32:57 PM »

I'm not sick of hearing from you, either, sweetie!  If there's an opportunity now, there will be others later.  I wouldn't push right now though.  Sounds to me like he still needs time to recuperate!  Honestly, the man is missing multiple body parts, and he still wants to work?  More power to him - but he's allowed to rest a bit before he starts.  Tell him it's okay to focus on his health first.  If you are managing now on the money you have, then I don't think he should rush into something he's not ready for.
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Lori1851
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« Reply #5 on: May 27, 2008, 06:43:20 PM »

Maybe Len can work half days. Or even work only part time. If the employer is a good one they will do whatever to accomadate Len, at least they should ;) Geesh I dont know just my 2 cents .
Lori/Indiana
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Romona
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« Reply #6 on: May 27, 2008, 06:53:22 PM »

 :grouphug; I hope the best for the two of you. What ever is mean to be, is meant to be.
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kidney4traci
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« Reply #7 on: May 27, 2008, 08:33:20 PM »

Sorry he is hurting, that is not something to be overlooked.  Praying you find out what is going on so he gets well.  For his health and your peace of mind.   :grouphug;
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« Reply #8 on: May 27, 2008, 09:33:51 PM »

I've weighed the option a few times and I think you would be better off to keep the benefits and forget about trying to work. Health and well being is worth more than a few extra dollars.
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Roxy
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« Reply #9 on: May 28, 2008, 12:39:05 AM »

If the disability is social security disability, there is a 9month trial work period. However, I'm not sure if it depends on how close it is to when you started disability or if it is just whenever you can go back to work, since I got social security disability and then started working a few months later. Anyway, during those nine months, the amount of disability shouldn't change. Then, after the nine months if for some reason Len can't work and makes under a certain amount of money, then they will supplement it with an amount from social security disability. I'm not sure of the exact amount of money it has to be under, I think around $600. From what my social security disability person told me, it stays that way for 3 years. So for example my 9mth trial work period ends this month, however during the next three years if something happens and I make less than $600ish, then I will get a check. I don't know if i have the facts completely straight, but it's how it has worked out for me so far.  I hope Len continues to feel better  :grouphug;
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2_DallasCowboys
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« Reply #10 on: May 28, 2008, 04:58:10 AM »

Kathy,

Sounds like you have a lot of sorting out to do.  I am  glad that
Len is feeling better.  But I would be real careful about the work
thing, as you are doing OK  financially with the way your finances
are now.   If Len is getting antsy, maybe he could try volunteering
 with a good cause for rite now- he could make his own hrs and
it would help occupy him.

Anne
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Lori1851
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« Reply #11 on: May 28, 2008, 05:16:37 AM »

Roxy,
I think you are right. IF Dustin would like to go too work they do not penalize you. You can make so much money and still get your benefits. Its called "The ticket to work program". You can read all about it on the website.
Lori/Indiana
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willieandwinnie
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« Reply #12 on: May 28, 2008, 08:27:24 AM »

Just an update. I didn't sleep much last night, worrying, but Len made the decision for me this morning. He woke up with severe stomach pain, wouldn't eat breakfast and took a pain pill, hasn't taken one of those since January the 13th. I asked him about calling our doctor to move his appointment up and he said no. Now I am going to make some other phone calls to his other doctor's and get the ball rolling to keep his Social Security Disability and his Veteran Benefits. Wish me luck. I also need to contact all the folks that are trying to get him to come back to work and tell them to back off. Won't be a real pleasant day around here but I do what I have to do and I'm not in this to win a popularity contest. Thanks for listening to me and I'll post after Len's doctor's appointment.  :thx;
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lola
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« Reply #13 on: May 28, 2008, 08:33:42 AM »

W&W hang in there we are behind you 100% :grouphug;
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rose1999
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« Reply #14 on: May 28, 2008, 08:58:17 AM »

W&W hang in there we are behind you 100% :grouphug;

Too right we are!! :grouphug;
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paris
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« Reply #15 on: May 28, 2008, 09:41:12 AM »

I think you are very wise.  I know Len wants to work, but realistically, he needs to be home with you.  You two need to beable to enjoy his good days and he needs to be in his own environment on his bad days.  Sounds like you have lots of phone calls to make today.  Let us know how they all go.     Don't forget to take a moment for yourself while you are doing all of this :grouphug;
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xtrememoosetrax
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« Reply #16 on: May 28, 2008, 10:37:05 AM »

I think you are very wise. I know Len wants to work, but realistically, he needs to be home with you. You two need to beable to enjoy his good days and he needs to be in his own environment on his bad days. Sounds like you have lots of phone calls to make today. Let us know how they all go. Don't forget to take a moment for yourself while you are doing all of this :grouphug;
Well said, Paris. Hang in there, w&w.  :cuddle; :grouphug;
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monrein
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« Reply #17 on: May 28, 2008, 12:21:12 PM »

Thinking of you both W&W, and hoping that you'll get things sorted.  I too never get tired of hearing from you and always enjoy your posts.  I know it's hard on Len thinking about not working but I certainly understand your point about wanting to spend energy in a different way if you can manage it financially.  Good luck Kathy and Len.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
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Second trx doing great so far...all lab values in normal ranges
Lori1851
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This is me Lori , Dustin's mom

« Reply #18 on: May 28, 2008, 02:12:08 PM »

Sounds like the decision was made for you when hubby woke up in pain. Life is too short stay on disability and enjoy yourselves!

Lori/Indiana
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willieandwinnie
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« Reply #19 on: May 28, 2008, 06:07:48 PM »

I had to call the rescue squad this afternoon to come get Len. He was suppose to see our GP, but when I called and told him Len systoms he said to call 911 and he'd come to the hospital. I just got home and put Len to bed, he is pretty drugged up. Our GP gave Len the choice of being admitted or coming home. They did a CATSCAN with dye and his intensines are okay (no blockages). He has gallstones and gastroparesis. They did complete labs and they all came back fine. Our GP, Dr. Gill came in and talked to us, he asked about stress.......... No shit, is just what I said. I told him about Len's job offer and he said, ABSOLUTELY NO, POSITIVELY NO, what would Len do if he was in Texas, Indy or Florida and had one of these attacks? I think the stress left Len's mind at that moment. Dr. Gill said that he would fill out any necessary paperwork and that Len should just stay focused on a day to day basis. Thank God for Dr. Gill. I, on the other hand have had about enough stress for one day. I called all the people involved with this job stuff and tried to explain the situation and they wanted to talk about maybe in September, I just flat out told them NO. There were a couple that did seem to understand and that made me feel better. I told Len that I had called all of them and he actually seemed relieved and then when Dr. Gill flat said No, that really helped. So in the next couple of months I guess there will be a battle with SS and the Veterans Administration, all I can say is bring them on, I'll be ready. I better go see how my guy is doing. The dogs were so happy to see him, they had a fit when the rescue squad came. Poor babies. Thank you all for your thoughts and prayers.  :cuddle;
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glitter
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« Reply #20 on: May 28, 2008, 06:29:45 PM »

Glad he got some little bit of help...seems like your figuring out what to do. I wish I could say you'll have an easy time with SS, but too many people here have had such issues. I had a good, quick response from them.... so hopefully it will go as easy for you.  :grouphug;
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« Reply #21 on: May 28, 2008, 06:35:59 PM »

What an awful day you've both had.  It sure puts the work issue to bed however and quite clearly too.  I'm glad you're home. :cuddle; :grouphug; :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
2_DallasCowboys
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« Reply #22 on: May 29, 2008, 04:01:07 AM »

Kathy,

So, so glad he is home and all is OK.  It seems  the
work issue has been solved for the both of you by
Len's Dr, and at least the stress of him owrrying about
it has stopped.

Please take care of yourself, too!  I know how much of a
pain in the  :sir ken; dealing with SS, etc is.

Hugs to all, specially W/W!!

Anne
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willieandwinnie
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« Reply #23 on: May 29, 2008, 06:57:37 AM »

Hi All.  :waving; Probably not such a great idea to bring Len home. He didn't sleep any last night (so neither did I), he's stomach is really bothering him and to top it off, he is running a fever this morning. I called he's doctor, but he had hospital duty last night and won't be in until about noon. Len is sitting in his recliner actually napping. He did manage to take he's pills but he has had nothing to eat since Monday night. This is when I start worrying (crazy me), he loses weight so fast and then there is the dehydrating to worry about. I swear I think I need a drink. I should of insisted that they admit him last night but he has spent so much time in hospitals that I listened to him. I hoping that the doctor has some incouraging words when I speak to him. I'll keep you posted. Thanks for listening to me again.  :cuddle;
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rose1999
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« Reply #24 on: May 29, 2008, 07:05:10 AM »

Sending you both a big hug and hoping you get it all sorted out soon. :grouphug;
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