I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: willieandwinnie on May 27, 2008, 03:45:08 PM
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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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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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It's me again. Don't you guys just get sick of listening to me. :
Not at all.
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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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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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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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:grouphug; I hope the best for the two of you. What ever is mean to be, is meant to be.
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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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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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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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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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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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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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W&W hang in there we are behind you 100% :grouphug;
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W&W hang in there we are behind you 100% :grouphug;
Too right we are!! :grouphug;
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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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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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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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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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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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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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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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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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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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Sending you both a big hug and hoping you get it all sorted out soon. :grouphug;
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You and Len certainly had a day. I am so glad the doctor told him he doesn't need to think about working. You two need to have peace and calm, and de-stress as much as possible. Hopefully all will go well with SS and VA. Today you need to rest whenever Len is resting. You need to recharge yourself, so you can keep on going. When he naps, take that time to put you feet up and REST. Have someone pick up dinner and bring it to you. Don't touch the house today. Do I sound like a Mom? Just worried about you as well as Len. Let us know how Len does today. Tell him we are all thinking of him :grouphug;
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Hope today starts going better. I'm worried about you two -- you've been through so much. Surely it's time for the good luck to start! :grouphug; to you both.
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Thinking if you two and hoping you hear reassuring things from Len's doctor.
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Sorry to read your last post, Kathy!
Will be thinking of you and Len today, and
sending a prayer or two your way!
Anne
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Hoping the new day brings good news for Len. How are you doing,Kathy? Take care of each other :cuddle; We are here when you need us :grouphug;
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I just found this thread and I'm so sorry to hear about Len! I hope he's feeling better by this point. I'll keep him in my prayers. :cuddle; :cuddle; :cuddle;
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Sorry for the late reply - just noticed the post! I hope your husband is doing better, these days. Take care of yourself, too! :cuddle;
Sending good wishes and positive thoughts your way!
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I am hoping no news is good news - and that Len is getting some help. Please write when you can WAW! :cuddle;
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:cuddle; Thank you all for checking in on me. I haven't felt like myself for the last couple of weeks. I have been taking Len to doctor appointments and just trying as hard as I can to stay upbeat. He is still having trouble eating and has to eat many small meals instead of 3 regular meals. More work for me.... They did another bunch of labs because he was running a fever, his labs came back good. They also did another sonogram because of the extreme pain he continues to have in groin area near transplant. :banghead; I think I have mentioned many times how much I just love our GP. He called me the other night at 8 pm and talked for almost 45 minutes. He told me out right, that Len has been through so much internally, that things will never be right again. He assured me that whatever paperwork needed to be filled out to keep Social Security and VA benefits, he will gladly do it. He said that all the medicine that Len takes effects how his stomach and intensines work. He also told me that the next time this happens (he said it will happen again), that he is going to admit Len so I can get some rest. We talk about me being a strong patient advocate and he asked if I would be his? I thought that was pretty sweet. It has been so God awful hot here that you can't even go outside for more then a few minutes. We had just horrible storms on Wednesday night that we lost our power and it didn't come back on until Thursday morning. There are still about 500 folks in the area that still aren't back up. I'd be saying, HELLOOOOOOOOOOO holiday Inn. I better get going to check on Len, I seem to worry more everyday about his mental attitude or lack of I should say. It looks like I have a bunch of catching up do on new threads. You guys have been busy. Take care and again, thanks for listening to me.
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Len is so fortunate to have you by his side. He keeps dealing with so much. It must be hard for both of you to stay so strong. Sometimes the scope of our world has to be micro; just our immediate little world. You two have a nice little corner of the world. I bet Len worries about you worrying about him! It is good you have each other, and those sweet doggies. Stay inside where it is cool. Get some rest. And I am so glad you have a great GP. I think we would all love to have you as a caregiver and an advocate :grouphug;
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I second every word that Paris has written. It really sounds as if you could use some serious rest and that's pretty difficult with all that's going on. Try anyway to take it easy, especially in the worrying department.
Thinking of you both :cuddle; :grouphug; :cuddle;
Gail
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Hi, Kathy,
I hope this finds Len feeling better. You and he have been
thru so much together. I can only imagine how exausted you
have to be, with this tremendous amount of stress on your
shoulders.
Please stay cool, hug you doggies, and get some rest, Girl! :cuddle;
Anne
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Hope Len has been feeling better - and you too! :cuddle;
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how are things today
keep us informed
we worry about you, Len, and furkids
plus I like to "hear" what's for supper
love twirl
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:cuddle; Thanks for checking in on us. Len has had a bad couple of days. Wednesday morning woke up with severe stomach pain. Called our doctor and he told be to come to his office and get prescription for morphone. Len didn't eat Wednesday or Thursday and not very much yesterday. This morning he had scambled egg and some cream of wheat. I just worry myself sick when he gets like this. My bigget concern is that he doesn't drink enough. Our doctor said Wednesday if it got bad enough to call the rescue squad and believe me, I had the phone in my hand. I am wearing myself out. I did the whole lawn yesterday, weedeater and then mowed. Len said yesterday that he was in better shape on dialysis. Breaks my heart. I try to stay positive but I have to admit that somedays it isn't easy.
twirl, tonight I am going to lightly fry some fish and fix mac-n-cheese. I haven't felt much like cooking and of course Len hasn't been able to eat. Wednesday all day, I had a bowl of cereal. We go to Transplant appointment this coming Wednesday and see what they say. I just don't know anymore. :banghead; :banghead;
I'm getting ready to grab the shovel and rake and go to the neighbors and put the dirt back under the fence that her dog has dug out. Why are people so inconsiderent? I'm not in a very good mood today and I hate being like this. Somebody cheer me up. :bow;
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I wish I could cheer you up. If I cou;d afford gas :P I'd visit your neighbor and let my dog relieve himself on her lawn. This transplant stuff certainly isn't easy and everyone thinks it is a cure.
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I wish I could hop on over and TRY to cheer you up. What I can do is tell you how special and important you both are and send you a big hug. I really hope they figure out what's going on with Len and that you both get some relief from all this stress very soon.
:cuddle; :grouphug; :cuddle;
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Does knowing that we all love and care about you help cheer you up? I hope so :grouphug;
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Oh Lord, yes Rose, you guys make me feel like someone gives a crap and you know what I'm going through. Thanks for being there. :cuddle;
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W&W are you taking care of yourself? well, do it..... I so enjoy reading your posts, I mean, it is like being there and let me tell you now, your little Yorkies are so adorable.
You are a blessing in every life you enter.
What did one Yorkie say to the other Yorkie? ( don't know, they don't speak English) pretty lame--- just made it up
the post you wrote awhile back about your Yorkies and you had on a nightgrown was so funny, I will never forget it.
Sad Sack, our old bassett hound, goes thru the neighbors fence, gets her cat food bowls, carries the bowls back to our yard and then eats the food........ I always return the bowls with fresh cat food......
they placed a large rock in front of the place where she enters and it did not stop her, bassett hounds are not as dumb as they look
please take care of yourself so you can take care of Len
love you, love Len, love your adorable little Yorkies
you are a comfort to me