I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: petey on February 19, 2008, 09:25:12 AM
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Need some help.
When all of Marvin's recent round of problems started the first of December (2007), I called his home hemo nurse every day for a week. I told him Marvin was running a low-grade fever (and Marvin NEVER runs a fever unless something is going on). There were no other signs that Marvin was having any problems (no redness anywhere, no swelling, no vomiting, etc.). I asked the nurse if we should get blood cultures; he said "No -- there's usually nothing to a low-grade fever without other symptoms." Each day, I called and said, "I think something's going on." And each day, the nurse told me he thought Marvin just had "a bug." Each day, I said, "Shouldn't we run this by Marvin's doctor?" and each day, the nurse said, "I think you're making too much out of this. You're too overprotective of Marvin."
Long story short...Marvin spent three weeks in the hospital in December. Come to find out, he had MRSA (wicked, wicked staph infection) in an old graft site -- graft had to come out (thank goodness, we hadn't used it two years). By the time we found it, the MRSA had also moved to his heart valve and he had to have a temporary and then a permanent pacemaker put in.
Marvin spent another three weeks in the hospital in late Jan. - early Feb. The pacer wasn't working correctly, and while he was in the hospital, they discovered a HUGE hematoma in his abdomen (MRSA again). The hematoma had to come out (large incision -- wound vac now on). He had to have his entire pacer and leads replaced -- 38 staples because they had to put it in his abdomen. He's on a strong antibiotic (daptomycin) because the MRSA was resistant to vancomycin. He's had to return to in-center hemo to get the antibiotics, and he's now on the "inactive status" on the waiting list. It's been a helluva ordeal. I can't help but think that if that nurse had taken me seriously -- and at least listened to me -- that all of this may not have accelerated to the point where it is now. (You better believe I won't let that happen again!)
The home hemo nurse is coming to our house tomorrow (Wed) to show us the new procedure for testing chlorimines (something that occurred while Marvin was in hospital).
Please talk me out of killing this nurse when I see him tomorrow. I know I wouldn't be any good to Marvin if I were in jail.
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Please don't I have no money to help bail you out of jail!!!! :)
He owes you both an enormous apology. Hopefully he will learn from this and no one else will suffer needlessly!!! :banghead;
I hope Marvin had a speedy recovery! :)
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petey, DON'T DO IT. He isn't worth going to jail for. Here's what you do. AFTER he shows you the new water testing procedure, tell him very calmly (while sitting on your hands), that he screwed up and from now on he will (better) listen when you tell him that something isn't right. Tell him that you are with Marvin 27/7 and know when something is wrong. After he leaves, kiss Marvin and then go punch a pillow. I have a very hard time holding my tongue. You should of heard me when one nurse called me a lair. Everyone in the clinic heard me ream her a good one. DON'T MESS WITH MY HUBBY. :cuddle;
I edited this to add. I'll come bail you out if your emotions get the best of you.
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Even though the nurse had the "God" syndrome, don't send him to see God, instead kill him with kindness. It might be hard to do (trust me I know) but it will work for you too.
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Maybe you could just bust out the windows of his car while he's inside with Marvin!
It's really difficult when you are the voice in the wilderness, crying out for something you need and no one seems to listen who should be.
Thanks for sharing this with us. It helps remind us that advocating for ourselves and our loved ones in very important. We can't be meek in these moments.
There's a story of a fellow encountering another beating his mule. He tells him he shouldn't beat him. The mule owner responds with, "So why don't YOU try to get this mule moving!?" Whereupon the fellow talks into the mules ear and pulls on his harness. No action. So he grabs a stick and bonks it on the head. "See! Now YOU are beating him!, the owner says. "Oh No I'm not!" the fellow responds. "That was just to get his attention!"
Moral of the story: You don't need to beat on it. But you do need to get its attention!
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I like that. SIT ON YOUR HANDS. THEN tell him he goofed up. Badly. And next time you call him, he WILL listen to you. Or else. THEN punch your pillow, heck, tear it to shreds!!!!
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How about printing out the account you just gave us, above? (oops, maybe you should erase the final sentence first :)). What you just said is brief and factual, not too emotional-sounding, and might help impress upon the nurse exactly what has occurred, including the timeline and the extreme gravity of the situation. If it were me in your shoes, I can already feel my voice getting high and tight and my BP going up, and this is why I'm suggesting the print-out method. Just a suggestion; hope it helps. Please stay out of jail; I don't think you'll look good in an orange jumpsuit! :) Best of luck tomorrow.
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Remember good friends will help you hide the body. ;) Seriously though, just tell him how you feel and if you don't hear what you want tell him you'll find someone who will do things the way you want them done.
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I'm in the same mood today with my partner's nurse, but that's another story.
You go girl. Don't kill the nurse but stand up for Marvin. WE are their advocates, live with this daily, and darn it, we know them better than anyone else. Just because we're not nurses doesn't mean we don't know things. We have our knowledge of how our husbands usually are we have our intuition. How dare they ignore what we say?! Instead, they should be thankful, because if they would stop long enough to think, they would realize that we are their lifeline to their patients.
Okay, I'm done my rant. And I'm with you. Be strong, firm, and kind. If that doesn't work, be strong, firm, and give him hell. Whatever you have to do to get the best care for Marvin, do it!
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petey, Len calls all nurses. ROYAL NURSES. They know everything and they are always right. :rant;
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I do hate that superior attitude. i would take that 'sitting on your hands' advice- BUT tell him how serious that low-grade fever turned out to be so maybe he will take it more seriously next time- and next time your gut tells you the DR. needs to be called and a nurse says no- call yourself.
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Shoot the bastard in the knees...Boxman ;D
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Way to go Boxman :rofl;
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Shoot the bastard in the knees...Boxman ;D
:rofl;
And when he starts screaming, tell him he's making too much out of this.
Oh, I'm bad.
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It's bad enough when Doctors have the "God complex" but nurses too. I volunteer for the burial detail.
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I would ask for a different nurse. That is just me overprotective mom hehehe. No really I would.
Lori/Indiana
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Hey, we'd pass the hat for bail; we promise!
Go ahead and set the @#$%#$& nurse straight!
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Does the nurse have a supervisor ? If so report it to the director of nursing. Next time call the doctor yourself and explain your concerns went unheard. I'm sorry Marvin went through such an ordeal. :cuddle;
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:rofl; :rofl; :rofl;
You guys are too great. :2thumbsup;
Since I don't have bail money,
I'll bring my shovel. :)
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Petey,
My dad has been running a low-grade fever, on and off, for a couple of months. His temp goes up at night. It's okay in the morning and during the day, but goes up at night. Nothing else to go along with it...just the low-grade fever. He has a graft. He's been on hemo (in-clinic) for about a year and a half now.
Anyway, I've thought maybe his fever is just one of those things that can go along with dialysis, but your story is making me wonder. How was the MRSA discovered? Do you mind sharing that?
Thanks. And if you need somebody to help "take care of the nurse," I have four brothers I can send your way. :))
Pat
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PMP, the low-grade fever went on for six days. Like I said, no other symptoms -- then, on the six day, we noticed his old graft had a very small red spot (about the size of a penny). The graft was long -- from the elbow almost to the armpit, so it appeared to be very minute. It was, like, one minute it wasn't there and the next, it was. When I saw that, I freaked! We called his vascular surgeon that morning and had an appointment for three hours later (it's a three-hour drive to the vascular surgeon). The MRSA was discovered when the surgeon took cultures during surgery to remove the old graft. I don't want to scare you, PMP, but I wouldn't wait another minute with your dad. Get it checked out! It may be nothing (and I'm hoping it is), but if it's the start of an infection, time (without treatment) will only make it worse. Get on the phone! Call somebody -- now!
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Hey all,
I know of 2 people in teh last 2 weeks I know personally that had Mersa!!!!!! One DR farted around (sorry for the pun) for 2 weeks until his wife sent him to her dermatologist which did another blood test that was positive for Mersa. Another was a lady I work with at school.
Scarey!!!
Lori/Indiana
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Thanks for all the advice, guys! I especially liked Boxman's idea of "shooting the bastard in the knees," but I think I'd aim a little bit higher -- OUCH !!
I'm usually a very, very outspoken person. Marvin always tells me to watch my tongue -- my words and tone can be quite vicious when I want them to. I'm known far and wide for not being able to keep my mouth shut. When angered, I can also get very loud and very demanding -- Marvin says don't argue with me when I'm mad either because I'm relentless and will turn your own words around and use them against you.
Our problem is ... this is the only home hemo nurse at the clinic we're currently assigned to -- we have to continue to work with him if Marvin wants to stay on home hemo. See, home hemo is really new in North Carolina. Last summer when we first started looking into it, there were three clinics in the state that trained for home hemo (Charlotte, NC -- a four-hour drive from us; Durham, a three-hour drive; and Wilmington -- a 45-minute drive). We picked Wilmington because it was the closest (and you have to go back every month for check-ups, etc.). Marvin was the second patient trained in the Wilmington clinic. This bozo is literally our only way to do home hemo (without transferring to Charlotte or Durham). From the first day we met him, Marvin and I both decided he was a "doctor wannabe" with the MISTAKEN idea that he knows everything.
I'm going to try really, really hard tomorrow not to say anything that will jeopardize Marvin's chance to continue on home hemo (when he gets done with antibiotics in-center -- middle of March). Marvin is "Mister Nice" and doesn't believe in causing waves. I, on the other hand, rather enjoy a good fight.
I told Marvin that I wanted to hurt his nurse, and Marvin said, "He'll whip your ass." Hey, I'm a *ahem* healthy girl (real big bones on this 5'5" frame, you know). I'm strong. I'm mean. I'm fearless. Marvin repeated, "He'll whip your ass." (Marvin's nurse is an ex-Marine and an ex-cop -- his arms, neck, and chest are thick and pure meat -- pure meat, I tell you.) I told Marvin I could give that nurse a slap to the face, a claw to the eyes, a kick to the groin. Marvin said, "He'll still whip your ass." I'd get my dog Hop-Sing to bite him, but Hop-Sing is shy and has never bitten or even growled at anyone (unless you count that cat at the vet's office). Maybe by tomorrow I can teach Hop-Sing to pee on the nurse's leg.
I'm going to try to keep my composure tomorrow, but I have to say something. I can't let this go.
Keep your shovels handy. If I lose it, I may need your help.
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Lori,
MRSA is very, very scary! Marvin's surgeon told us that it was extreme difficult to stop. Marvin's particular type showed in the lab that only two antibiotics would even stand a chance of stopping it -- the daptomycin that he's on now and another one that has to be given only in an ICU setting because it has a bad side effect of messing with the heart.
There are two types -- one is considered a "community" infection. Wash your hands! Wash your hands! Wash your hands! Wash your hands! The other type is a "hospital" infection, spread through sick people grouped together in a common setting (dialysis clinic?, hospital? doctor's office?). We think Marvin contracted it in the clinic when he went for a check-up, but we can't be sure.
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Petey...
Any chance you could be running errands when dough boy comes tomorrow?
I don't know that I could trust myself to be calm around him just yet either!
He does need to know what happened and to take responsibility for his actions.
Someone else could die if their caretaker wasn't as vigilant as you were.
Also, the supervisor needs to have a written account of this, in their files. That might
subdue dough boy's aspirations to be all-knowing and all powerful doc. (Maybe.)
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Thanks for all the advice, guys! I especially liked Boxman's idea of "shooting the bastard in the knees," but I think I'd aim a little bit higher -- OUCH !!
I'm usually a very, very outspoken person. Marvin always tells me to watch my tongue -- my words and tone can be quite vicious when I want them to. I'm known far and wide for not being able to keep my mouth shut. When angered, I can also get very loud and very demanding -- Marvin says don't argue with me when I'm mad either because I'm relentless and will turn your own words around and use them against you.
I told Marvin that I wanted to hurt his nurse, and Marvin said, "He'll whip your ass." Hey, I'm a *ahem* healthy girl (real big bones on this 5'5" frame, you know). I'm strong. I'm mean. I'm fearless. Marvin repeated, "He'll whip your ass." (Marvin's nurse is an ex-Marine and an ex-cop -- his arms, neck, and chest are thick and pure meat -- pure meat, I tell you.) I told Marvin I could give that nurse a slap to the face, a claw to the eyes, a kick to the groin. Marvin said, "He'll still whip your ass." I'd get my dog Hop-Sing to bite him, but Hop-Sing is shy and has never bitten or even growled at anyone (unless you count that cat at the vet's office). Maybe by tomorrow I can teach Hop-Sing to pee on the nurse's leg.
NEVER under-estimate the power of a woman, especially an angry one and one who is protecting a loved one! Petey, I think it's a good idea that you can vent here before the nurse comes over.
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Petey - you go girl!!!
Seriously - I have had at least two doctors not acknowledge serious mistakes they did to me - surgical errors actually. One I have not dealt with yet because I'm still in an angry rage - the other one I did deal with one on one and I got him to acknowledge not only did he make a mistake but he didn't actually listen at all to his patient (me). And he made some kind of promise about improving his listening skills. I hope he did follow through with that.
I think you should talk to the nurse but use the notes in your email so you can state things as fact and try not to use too much emotion - because then you will probably kill him. With any dialysis patient the little things should be listened to immediately. That, my dear, was taught to me by my dialysis nurse. She would not only call me regularly but also emailed if there was any tiny little thing I brought up. so give it a try - he has to know what the consequences were of his advice. Perhaps he'll actually listen to you and learn something. Fingers crossed.
Let us know how it turned out.
Sandyb
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No matter his experience he still just another man. Go for the knees it's the weakest point of contact and only requires 14 lbs of force to snap it sideways from the inside out. I am not endorsing anything but just in case you need to defend yourself. ::)
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Justifiable homicide. :boxing;
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Do you want to borrow the big stick??
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No matter his experience he still just another man. Go for the knees it's the weakest point of contact and only requires 14 lbs of force to snap it sideways from the inside out. I am not endorsing anything but just in case you need to defend yourself. ::)
I think there's another weak point on a man that you can go for Petey - and you can always innocently say your knee slipped :rofl;
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Maybe by tomorrow I can teach Hop-Sing to pee on the nurse's leg.
Good idea! Reading this thread, I'm alternately snarling and laughing. If you don't knee-cap the guy, I will! I know, I know, I'll have to stand in line for the privilege and the line up of wannabee knee-cappers already stretches around the block.
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That nurse should have realized that 98.6 degrees Fahrenheit is the MAXIMUM level of normal body temperature, not an average temperature such that small variations above that level could be regarded as harmless. At the center where I was dialyzed, any elevation of patient temperature was always taken very seriously. This is especially true when the patient has implanted medical devices, since infection easily develops on the immunologically defenseless surfaces of these devices.
The news media like to generate scare headlines to sell more newspapers or more ads on television by pretending that the 'superbugs,' MRSA and VRE, as terrifying and deadly infections, even though they are often quite harmless, even though they can be difficult to extinguish. I had VRE and MRSA for a few months and noticed absolutely no symptoms from it, not even a fever, and it was diagnosed only by blood tests. Only in patients already severely weakened from other diseases are these infections dangerous.
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The news media like to generate scare headlines to sell more newspapers or more ads on television by pretending that the 'superbugs,' MRSA and VRE, as terrifying and deadly infections, even though they are often quite harmless, even though they can be difficult to extinguish.
Boy, we sure wish that Marvin fit into that "often quite harmless" category of MRSA. The fact is, in Marvin's case, MRSA permanently damaged his perfectly healthy heart, requiring a pace maker (and they haven't ruled out valve replacement). Since December 3, he spent 41 days in the hospital and 15 of those days in either Cardiac ICU or CardioThorasic ICU. Add to that that he's had a small "chunk" of tissue/nerves/etc. removed from his arm (MRSA) and a pretty big "chunk" removed from his abdomen (hematoma with MRSA). We had several doctors tell us he was lucky to have survived the MRSA.
I say MRSA is potentially quite deadly and most definitely terrifying. Or, that has been our experience. And, the bad part is, the doctors said there could still be more MRSA lurking around in Marvin's body even now. After all we've been through, that last thought definitely scares the shit out of me.
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petey, what happened with your royal highness the nurse. Can't wait to hear about it. :secret;
stauffenberg, my husband had MRSA and it went into sepsis and he died on me a couple of times. Only the wonderful trauma surgeon that took over his gave and the potent antibiotics he received saved him. I also have a girlfriend who's husband just past away from hospital acquired MRSA that wasn't detected soon enough. He was in the hospital for minor cosmetic surgery. I believe the medical community doesn't want the public to know that it has become a very serious issue. Just my :twocents;
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Bottom line...I let the bastard live, and despite Marvin's concerns, I didn't get my ass whipped in the process.
Okay, here's the whole story... if you plan to read it, go to the bathroom first (those who are able) and stop and get you some :popcorn;
Marvin and I had a LONG talk last night. Here's what Marvin said: "This nurse is the type of person who's never going to admit that he did anything wrong. He's going to find some screwed up way to justify that he did his job and didn't make my medical crisis at the time worse. In his defense, he's so egotistical that he thinks he's above making a mistake. He's never going to apologize, and he's never going to change. That's just the way he is. If you bring it up and get all loud and pushy about it, it will make matters worse for us. He is the ONLY home hemo nurse in our part of the state. We're stuck with him -- like it or not. If we can't work with him (doesn't mean we have to like him or even trust him), we can't do home hemo anymore. You're going to have to bite the bullet on this one and keep your mouth shut."
I didn't like this idea -- at all. I wanted to let him walk in our house and then whip his ass -- no words necessary. But, Marvin always has the "logical" head in our duo. He thinks things out and looks "down the road" (whereas I react in the moment). I told Marvin I would do whatever he wanted me to.
So, Mr. I-Am-God Nurse shows up at our house, and he's laughing and talking with Marvin like nothing's ever happened. I'm sizing him up -- God, he's meatier than he was two months ago. I'm looking at the knees (Sluff's suggestion). I thinking about the area above the knees (but I didn't LOOK ;D !). I'm wondering how long it would take Kit to FedEx her big stick to me. I'm wondering how long it would take Sluff to ride on that motorcycle all the way to NC to help me hide the body. I look at Marvin, and I can read his eyes (you can do this after you've been married for 22 years). His eyes said, "Don't even go there. He'll whip your ass."
So, Mr. Nurse shows us the "new" way to check chloromines (this is, like, the third different way we've been shown to check them). The talk is friendly between Mr. Nurse and Marvin. Then, Marvin brings it up -- but Marvin has much more tact than I do. Marvin says in his nice, calm, polite, non-threatening tone, "Man, we had some concerns about the way you handled all this in the beginning." (And, I'm thinking...if this big hunk of a man takes one step toward my Marvin --- forget Hop-Sing -- I'll pee on his leg.) So, the nurse starts talking. His voice is calm, and sugar wouldn't melt in his mouth. He explains that he was "caught in the middle." He said that he wasn't our nurse (huh? I thought) -- he just trained us on home hemo and now does our follow-through paperwork. He's not the one we're supposed to call (this, I'm thinking, is the biggest load of BS I've ever heard). He said the doctor fussed him out for trying to help us (to, which, I'm thinking :urcrazy; ). He said it wasn't his job to advise us what to do medically for Marvin or to order blood cultures when I requested them (so, whose f@#*ing job is it?).
I kept my cool and let him and Marvin talk. Finally, I said, "We like the independence and responsibility of home hemo. We just didn't think that when we started it that we would literally be on our own." To which, Mr. Nurse responded, "But you are on your own. If you have a fever, you shouldn't call me or the doctor. You should go to the hospital. If you have a persistant pain or other medical problem, you shouldn't call me or the doctor. You should go to the hospital."
Okay, Allrighty then!
Mr. Nurse even came in our den and sat and talked for 30 minutes. Marvin did most of the talking for us, but I did manage to get in a word or two -- and I was a good girl because Marvin's words of "We've got to work with him if we want to continue to do home hemo" kept running through my mind. I can't screw this up for Marvin -- he hates in-center and loves home hemo.
Mr. Nurse said the only thing he didn't like about the time when I cussed him out over the phone (I don't remember the whole conversation, but I do remember that I was fuming and said some mighty, mighty ugly words to him) was that he couldn't cuss back at me.
But, we learned an awful lot from the conversation.
The Wilmington clinic (which includes the doctors' group that supervises all the clinics in our area) and their folks have a problem with me and Marvin because we always choose to go to Duke for Marvin's surgeries, grafts, fistulas, big problems, etc. The Wilmington doctors THINK that because they make rounds at the Wilmington hospital that Marvin should choose to go there (we went there once about 13 years ago, and we left AMA because they are so bad). They say that if the local clinic is good enough for Marvin and good enough for him to get trained in home hemo there, then the Wilmington hospital should be good enough for him, too. We don't see it that way. Duke is a BIG hospital; it's a research hospital. They have the best doctors there. Duke has saved Marvin's life several times. We trust them. We have a history with them. They have 13 years of records on Marvin. Because we choose Duke, the Wilmington group wants to be "hard to get along with" when we're back at home. (Now, I ask you, where is their concern for this patient? Is it just a pissing contest to them? -- hey, Mr. Nurse is the one who described the Duke/Wilmington thing as a "pissing contest" -- his words, not mine.)
We had suspected this, but it was confirmed today.
We also learned that they're not going to help us anymore than they absolutely have to. That's a scary thought, but, we're not going to switch to the Wilmington hospital. We're going to keep going to Duke and we'll just have to fight our way through it when we get home.
We learned that this nurse -- and the doctors that he works for -- don't care about Marvin. We learned that it's all up to us to take care of Marvin.
Before Mr. Nurse left, he said, "I'd like to say, 'Call me if you need me,' but I can't do that."
I hope he rots in hell -- no, I hope he ends up on dialysis and gets a crappy nurse himself. I hope he gets an incurable rash (that's really, really itchy) on his testicles. I hope he gets a flat tire on the way home and gets out of the car only to step in a big bed of fire ants. I hope...
I hope you all have better local nurses and doctors than Marvin does.
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Oh how disheartening, frightening, infuriating, disgusting, etc, etc. :banghead; I'm sorry, Petey, that you and Marvin are in this situation. Where are the so-called "helping professions" when we need them?? In truth, a lot of the time they are there for us, but jerks like this make them all look bad. This is just horrible. :thumbdown;
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I am speechless. I don't know what to say. WILMINGTON is UPSET because Marvin prefers
a better hospital/staff???? GET OVER IT. Oh my GOSH. ALL the more resason to NOT use
Wilmiington. OOOOOOO!!!!!!
Petey, I am so proud of you!!!!! You did it!!!! YAY for you!!!!!! :2thumbsup; :2thumbsup;
I know how hard it is to keep your mouth shut when all you wanna do is is open it and let fly.
It's HARD!!!
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That is bullshit for them to be reacting in such a immature way, :boxing; just because you prefer to go to duke. Either way at least you got the straight skinny on this. :thumbup; I hope smooth sailing from here for Marvin. :grouphug;
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I really can't believe the BS they are handing you. Morally is it right for them to jeporize a person's health for going to a hospital of their choice!! To say you are on your own with home hemo is ridiculous. Has to be a medical team behind you willing to support you. You are just a ordinary person who has been trained to do home hemo. Like us you probably don't have any medical background. We are about 5 hrs drive from our dialysis nurse and techs and training center. If anything happens to hubby we are supposed to go to the closest hospital and have it checked . We are supposed to let the diaysis nurse know any time we have to go to the hospital. Have only had to take him a couple of times. Both times he had a temp because of a sinus and ear infection. Had nothing to do with dialysis. We were told to treat any temp as serious because it could be something blood or dialysis related.
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I don't think hubby would have been as calm as your husband he probably would have been more your style. Too bad you couldn't follow up on your plan but I think I would have aimed a little above the knee as well :rofl; have to be diplomatic though in order to keep home hemo. Hubby would not want to go back to in center now either!!
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del,
I have NO training in the medical field -- I'm a high school English teacher! Everything I've learned about dialysis, transplantation, medicine in general, etc. has been "on the job" training with Marvin.
But, I would do anything -- anything at all -- to keep Marvin on home hemo. I'd even consider selling my body -- I just hope I could get someone to pay by the pound :rofl; .
Once again, Marvin is my mission and my purpose in life. He's always been at the top of my list, but now I'm going to watch him like a hawk! Poor Marvin! He doesn't say it, but I know he thinks I smother him enough already.
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I have had two local hospitals screw up things for me. People think I am crazy for having all my doctors two hours away. I understand why you do not want to deal with the local hospital.
It is disappointing that you are having so much trouble. And disappointning that we don't have to raise bail and drive to help you hide the body. It is very cold here and I was looking forward to going somewhere a little warmer. >:D
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Just reading this thread and can't believe what you are going through! You have to have suppoet - that is what nurses do. He is NO support. What about his supervisor? The head nurse? Sounds like a battle - congrats on keeping your cool! (I laughed my butt off reading this thread - thanks!!)
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I can't believe this!!! I am so angry right now about the way you two have been treated just because you made the best decision you could for Marvin's HEALTH!!! Besides, when you trained for home hemo, why didn't he tell you then that you were "on your own"?? Grrrr, I just cannot put into words how angry this makes me!!
I think you'd be perfectly justified in introducing his knees to Kit's stick!
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So just what is Mr Nurse's job??? I am so angry on your behalf. >:( This is a disgrace but well done for keeping your cool - I know you only did it for Marvin and I bet if you had been the patient you'd have let him have both barrels.
I don't think it would have been his knees that I'd have introduced to Kit's stick. I hope he gets his come uppance as my Gran would have called it, or as we say here what goes around comes around.
At least you know where you stand now - on your own, but together and with us all beside you.
Take care :cuddle;
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Oh, Rose!
At least you know where you stand now - on your own, but together and with us all beside you.
Take care :cuddle;
I hadn't thought of it this way. And, we would MUCH rather be on our own, together, with all of you than with this stupid, non-caring, piece of dog poop!
Thank you! That makes me feel much better.
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del,
I have NO training in the medical field -- I'm a high school English teacher! Everything I've learned about dialysis, transplantation, medicine in general, etc. has been "on the job" training with Marvin.
But, I would do anything -- anything at all -- to keep Marvin on home hemo. I'd even consider selling my body -- I just hope I could get someone to pay by the pound :rofl; .
Once again, Marvin is my mission and my purpose in life. He's always been at the top of my list, but now I'm going to watch him like a hawk! Poor Marvin! He doesn't say it, but I know he thinks I smother him enough already.
Attention ! Shoppers,
Today under the blue light special we have Petey. :rofl; :rofl;
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WOW Petey - the medical system never ceases to amaze me. I can't believe they think you can hang out there by yourself with no support. I think the nurse is not quite working at what his real calling may be and I can't even imagine what profession he would fit in with an attitude of "its just not my job." while I never did hemo at home, my medical center doesn't support that yet, I did do PD and had an amazing support system by way of the nurse that was available almost 24/7. and on top of that she was actually kind - even if I was having a bad day.
Is Marvin still on antibiotics? You mentioned that he may still have some infection remnants hanging around his body.
My best to you and Marvin!!!!
Take care
Sandyb
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Slywalker --
Bottom line = money! And, that just pisses me off something awful!
See, the doctors who oversee Marvin's clinic (and also the clinic where we trained for home hemo -- along with about 15 other clinics in our area) have "attending privileges" at the Wilmington hospital. When Marvin chooses to go to another hospital (Duke, namely), the doctors from his clinic don't get to charge for "rounding visits" for Marvin's hospitalization because he's not in the hospital where they make some of their money. Apparently, they have labeled Marvin as not a good patient because he doesn't make them all the money they could be making off his insurance if he were at THEIR hospital of choice.
Also, we had to come off home hemo for eight weeks of antibiotics and go back to the in-center clinic Marvin went to for 12 1/2 years before we started home hemo. Before this same group of doctors would PERMIT Marvin to go back in-center (like we had a choice), he had to be seen by one of them so THEY could determine if he still needed dialysis. When I heard that, I was livid!! What do you mean so YOU can determine if he still nees dialysis -- we're not talking about something that's a "maybe." Hell, yes, he still needs dialysis. He wasn't NEW to them -- he had been associated with that clinic and with that group of doctors for 13 years -- it's not like they didn't know him and didn't have a chart on him that's a couple of yards thick. I thought it was ridiculous, but I carried Marvin to their office the day after he was discharged from Duke so he could be seen by one of them. The doctor spent less than 5 minutes in the room with Marvin and NEVER touched him -- no BP, no heart check, no nothing. The doctor sat up on the examining table (Marvin was in the chair on the other side of the room), crossed his legs, and then said, "Well, Marvin. I believe you still need dialysis treatments. Have a good day and good luck." So, I'm thinking, what was this all about? Bottom line -- they charged us for an office visit (charge is more for an "established patient," too).
It has come to my attention that the bottom line for our not being able to give the antibiotics on Marvin's home hemo machine is money, too. By going back in center, they are charging for the actual antibiotic (not a cheap thing) -- AND they are also making a separate charge for the "administration of the antibiotic" -- something they could not have charged for if we had done it at home.
He will continue to be on the antibiotics until the middle of March, and he'll have to continue to go back in-center until that time. I will continue to be pissed off about this entire situation that whole time.
The antibiotic is strong (daptomycin) and, hopefully, will destroy any remnants of MRSA that's still in his body. We can only hope.
Marvin says it could be worse -- he could have to stay in-center for longer than the eight weeks total.
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This should be illegal! It is pure billing issues and money but at your expense! I would think medicare or SOMEBODY needs to hear this! I am so mad I can't stand it. They can't bill for nothing, insurance should be informed. Then maybe the stupid doctors will get their butts out of their ass and start actually caring for their patient! :boxing;
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My mouth is hanging open at the pettiness and lack of care and concern. But you and Marvin were brilliant -- a great team. Congrats on keeping your temper -- that can't have been easy.
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I don't know what to say Petey, except what everyone else has said. Is there a CEO that runs things? You could always call their office.
Good for you for keeping your cool though. Don't know if I would have managed to keep my mouth shut. Isn't there some oath that states 'do no harm'? Oh yeah, that's the doctor's oath...but still, Marvin needs care...there has to be someone high up that can take your complaints. How can they leave you alone with this? Absolute BS if you ask me.
Big hugs to you Petey... :grouphug;...you're doing a great job taking care of Marvin.
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kill the guy with kindness and next time he tells you you're just being overprotective, IGNORE him and call the doctor yourself. and if you really can't keep your hands off him, i'll pitch in for the defense fund.
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Oh Petey - what a mess - story about the doctor "blessing" him for continued dialysis - how big of him. Geesh.
recently I have been charged $119 for a doctor who never even saw me, but a doctor had to sign off authorizing a home health nurse that was required because another doctor created a wound on my stomach. I haven't paid the bill yet and I'm probably not going to.
Marvin is one lucky guy to have you by his side looking out for his best interest.
(((((Petey)))))))
Sandyb
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Hi Petey, What a mess! The day I came by Duke to meet you, I had been at the NxStage dialyisis clinic, meeting with the regional manager and the nurses there. They were marvelous. I got to meet two gentleman who were there for their monthly labs,etc. My local neph isn't too excited about NxStage, but he isn't that familiar with it. The regiional manager has offered to meet with him and the other doctors in his office. My neph is willing to learn and listens to what I tell him. Re:Wilmington vs. Duke---- all hospitals seem to have this problem. UNC hates Duke, Duke hates Winston-Salem---it makes no sense. Duke is Marvin's transplant center, of course you need to go there. I am so tired of the politics that goes on in the medical field. Boy, I leave town for a few days, and come home to find you on your way to prison!! Romona, thanks for watching Petey's back. And Sluff would have jumped on that bike and rescued you in a heartbeat! You have some strong people behind you now. I have more to say, and this is a little disjointed--took the red eye and am a LOT sleep deprived right now.
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Paris -- which clinic were you at? If it's Durham, we probably know the nephs there.
I was so glad to see a post from you. Glad you're home. I want to hear about the trip; it was so, so sweet of you to go say good-bye to Goofy for us.
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It is a new facility, north of Duke, off of 85. The neph I met was with Capital Nephrology and they said my own neph could easily have access. It is attached to a Davita dialysis center , but strictly for NxStage. They were really helpful and anxious to show me everything. Everyone gave me their cards; training nurse,managers--anyone who had a card! I am fortunate I have time to reseach my options.
I am glad to be home, too --but even more glad I could go.
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Paris, reading back through my posts here, I think I may sound negative (YA THINK?). But, I just want to make it clear -- I'm not negative about home hemo or about NxStage -- they are wonderful!!! Switching to home hemo is the BEST thing we've ever done. Also, when you have any trouble with your NxStage machine, you can call their support folks 24 hours a day -- 7 days a week (We know because we've called them a couple of times at 3 in the morning -- and they didn't even laugh or make me feel stupid because I had forgotten to make one little step in a process). And, unlike the greedy doctors, the folks at NxStage didn't bill our insurance for the calls!
Even with everything that has happened in the last two months, Marvin and I would still choose home hemo.
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Epoman always praised NxStage and everyone here loves it, so it is between that and PD. I have learned by everyone's posts that I don't think I want in-center and I want as much control as possible. Now I have to work on the needle thing!!
Yeah, Rookie Girl! We will plan on a summer event! Wilmington is an easy drive for me. We'll keep planning and make it happen.
Petey, so glad you didn't kill the nurse. But, it is absurd how they treated you and Marvin. Someone needs to be accountable. How is Marvin feeling now? He has been through so much in the past few months. What a fighter he is! And you! And, Petey, I don't think you could ever sound negative. Strong and capable-----not negative. (but I don't ever want to be on your bad side :rofl;)
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(but I don't ever want to be on your bad side :rofl;)
Oh, you know me too well, paris!
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Strong and capable-----not negative.
I was just thinking the same thing.
Hugs to you and Marvin, Petey. You have been through so much and are doing a great job!
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Petey, you KILL me! You have a way with words that I haven't seen in, well, FOREVER. You crack me up like I can't even believe and, at the same time, get me SO PISSED OFF at the medical community that I can't believe that either. It's so frustrating, isn't it?
You should write books!!!!!!! Better still, you should go to congress/the senate and get those guys involved in dishing out $$$ to NIH (and others) for medical research on kidney disease.
You and your husband make a great couple...the ying and the yang (or whatever that is).
Pat
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Pat, You're too kind. How's your dad?
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petey I really don't understand the medical system in the U.S. In Canada under MCP treatments and stuff like that doesn't even go to insurance. All our home hemo stuff is covered by MCP. Doesn't cost us anything. Doesn't even go through my insurance. By the way Petey. I am a teacher too!!! My students are a little younger though - Grade 2's!!