I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Rerun on October 16, 2007, 08:07:36 PM
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I must have had too much fun in Vegas because this morning my arm was swollen. I went to dialysis and those idiots didn't know what was wrong. It worked fine. They are all Filipino and wanted me to see an "Access Intervention Specialist". Well, ok. So, I get this order to show up at the hospital on Friday morning for fistulagram! Hellllll no!
The nurse says to me "You, you not spose to seep on it"! Well, No Shit Dick Tracy!
He didn't even look at it yet! Just do a fistulagram. That is the answer for everything!
I went and sat in his office along with 20 other people and I'm sure I was the only one with insurance but it made no difference I still didn't get to see him.
So, I went to see my Vascular surgeon and he told me to go home and elevate it. He had a FIT that someone was going to do a fistulagram!
I think I had too much fun and didn't get my naps in! HA
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Does it hurt Rerun? Maybe you just worked them slots too hard ;) :rofl; I hope your arm is feeling better soon :cuddle;
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Awww I blame myself, making you take the bus back alone - sorry Rerun! :(
Maybe ice and elevation and a little tylenol will help a bit.
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Wrong arm for the slots, so I can't blame them. Karol I did fine on the way back. Lots of people around. Not to worry. I should have just stayed at the hotel but I didn't want to miss out on anything! It was worth it to see the Bellagio.
http://www.bellagio.com/
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How are you doing now, Rerun? HOpe everything is getting back to normal.
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Rerun are you sure you didn't arm wrestle Goofynina or Sluff?
Seriously though hope it soon clears up.
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Rerun, hope the arm is doing better and have an answer for the swelling. I don't think anyone got the rest they needed in Vegas and we will all be paying for it this week---but we had such a good time. Let us know how your arm is. We worry!
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I hope you are feeling better! I know when I do too much walking around, my arm gets swolen. Please let us know how you are doing.
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I hope you are feeling better! I know when I do too much walking around, my arm gets swolen. Please let us know how you are doing.
Thanks Donnia, that is what I wanted to hear. I think I just did too much walking around. I would have layed down on the bench outside but Jill's husband got yelled at for doing that.
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I hope this clears up soon! :cuddle;
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I hope you are feeling better! I know when I do too much walking around, my arm gets swolen. Please let us know how you are doing.
Thanks Donnia, that is what I wanted to hear. I think I just did too much walking around. I would have layed down on the bench outside but Jill's husband got yelled at for doing that.
:rofl; (i have to admit when i read that i laughed so damn hard i snorted) :P That is right huh, he sure did :urcrazy;
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I seem to remember we all got yelled at by the lady at the wedding chapel!!! :rofl;
Rerun, hope your arm is doing better. My legs looked like elephant legs by the time we had flown across country! Let us know how the arm is.
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Most of the swelling has moved down to the elbow area. My access is pumping strong that is all that matters.
Get those legs elevated Paris.
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Hehehe - Rerun - you missed the fire alarm at 2:30 am Sat. morn at the hotel, Goofynina was not going to evacuate the building, if necessary - she was on her machine. :urcrazy;
Glad your access is working!! :clap;
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Rerun, did you go back and punch that bitchy blackjack dealer? :boxing; :boxing; Is that REALLY why you hurt your arm???
You no touch that! You need hand signal not talk!!!
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AHHHHHHHHHHHHHHh :(
I went to dialysis and by this morning my whole neck and shoulder were swollen and red. They wouldn't dialyze me. My Neph came to examine it (If you can believe it) and she sent me to the hospital for a chest cat scan and a veinogram. They found 3 blocked veins in my neck that they ballooned. I feel much better and I'm able to move my neck.
I don't know why this had to happen at ALL, but thank God that it didn't happen until I got home from Vegas!
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Wow, Rerun! Hope you feel better!
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Oh Rerun, I am so sorry! Thank goodness it didn't happen in Vegas. Hope you start feeling better quick. :grouphug;
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Wow, I'm glad they found the problem and that you're doing better!
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AHHHHHHHHHHHHHHh :(
I went to dialysis and by this morning my whole neck and shoulder were swollen and red. They wouldn't dialyze me. My Neph came to examine it (If you can believe it) and she sent me to the hospital for a chest cat scan and a veinogram. They found 3 blocked veins in my neck that they ballooned. I feel much better and I'm able to move my neck.
I don't know why this had to happen at ALL, but thank God that it didn't happen until I got home from Vegas!
Do you think it had anything to do with being so high up? Seems like Tubes, Paris and yourself all had problems with something swelling ???
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Rerun, I'm glad you are doing better. Wishing you a speedy recovery. :cuddle;
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Rerun sorry to hear about this. Hope you're soon OK
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Rerun,
So sorry to read about your trouble. I hope
you are better, and this problem is over for you.
Anne and Les
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Wow Rerun... you went through the ringer huh!!! Glad you are doing better though!
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I think you were holding on too tight and hurt yourself Rerun...you know the motorcycle ride that is...glad they figured it out. Are you doing better?
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I'm sorry about this set back! I hope things are better today. :cuddle;
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Are you better now? I hope so.
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AHHHHHHHHHHHHHHh :(
I went to dialysis and by this morning my whole neck and shoulder were swollen and red. They wouldn't dialyze me. My Neph came to examine it (If you can believe it) and she sent me to the hospital for a chest cat scan and a veinogram. They found 3 blocked veins in my neck that they ballooned. I feel much better and I'm able to move my neck.
I don't know why this had to happen at ALL, but thank God that it didn't happen until I got home from Vegas!
Wow! What an experience! Hope you're OK now.
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Yes, I'm better today except having to dialyze two days in a row. I'm just glad yesterday is over and I don't ever want that to happen again.
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:cuddle; Glad you're better. When you said swollen and red I freaked. ???
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Wow, what a shitty thing to happen. Glad your alright now
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Hey rerun, glad to hear your arm is better now. What a horrible experience.
Take care
Amanda
xxoo
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Whew, glad your doing better Rerun, no more hitching rides with men on bikes gosh darnit ;) ;) :2thumbsup;
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You are one tough little Lady Rerun, glad you are doing better. :grouphug;
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Glad to hear the news! :cuddle;
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Glad you are feeling better :thumbup;
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Whew! Glad you're feelin better! Now you know. NEXT time you hitch a ride with a strange guy....bring a bungee cord. That'll relieve the pressure on your arms!! :rofl; Seriously, I am so glad it worked out for you! :grouphug;
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My arm is starting to swell again and my neck. I went to the access specialist and he will try and get me in. I was planning on leaving Sunday for Oregon to stay with my niece for a few days and then on to Spokane for Christmas. I may not go at all now. I don't want to be stuck in Oregon in the sticks trying to find an access surgeon.
:christmastree;
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:-\ Aww that sucks Rerun. I hope you get some help quickly! :cuddle;
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I hope it can be sorted out quickly Rerun and you can continue with your Christmas plans. :grouphug;
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boo, hissssssssssss. hopefully they can fix this and you can still make your trip.
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bugger rerun hope they fix it quick so you can enjoy your trip :cuddle;
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Is it better yet? Where in Oregon will you be if you can go?
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:cuddle; :cuddle; :cuddle;
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Is it better yet? Where in Oregon will you be if you can go?
yes, cause i'll be in oregon too, from the 21st thru the 5th
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Uggg I know the feeling Rerun. I literally go in every two to three months to get an angiogram done on my arm since I got my new access in 2005. Oh the feeling you get when they blow up that balloon, indescribable and not a good feeling.
I hope they get you in asap so you can well be on your way and so you'll be better before the holidays.
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They fixed it yesterday. Yeah!!
The last two times I've had this done they asked if I had someone to drive me home and I said "yes" and I walked out the door, got in my car and drove home. This time I had to drive 30 miles to a new place and the receptionist was smarter than the usual. She wanted the name of the person and phone number. I gave her my dog's name (Adrianne) and my home phone number. She could tell I was lying and so I caved and told her that I could drive myself home and that I'd done it the last two times. Well that didn't work. She was very nice about it which made me cry. Go a head and be a bitch and yell at me but don't feel sorry for me or I crumble into a puddle. How humiliating! Everyone there had spouses or parents with them. I finally called a friend from work and she took time OFF WORK to come get me. We went around the corner and had lunch and then I went back to my car and drove home. SO THERE!
I am the FIRST one to admit when I can't drive. But, I feel fine after one of these procedures. AND if for some reason I didn't feel fine I would call someone. But, I don't really have anyone I can call. You know?
Anyway, he opened up two places and the swelling went away. I should be good to go. I'm leaving tomorrow and I'll be back around January 7, 2008.
See you next year! :santahat;
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thats great rerun have a great time away and merry christmas :santahat;
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So glad they fixed it Rerun, :yahoo; and dont feel bad, i cry when ever anyone is nice to me too, so your not alone my friend :cuddle; You take care and have a safe trip. Don't be a stranger ;) :waving;
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I am glad they could patch you up. I would drive you if I lived closer. I am sure other people would too, but you hate to ask. Hope your holidays are lots of fun Rerun! :rudolph; :snowman; :santahat; :christmastree;
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It's fixed!!! Youi get to have Christmas after all!! YAY!!!! THat is wonderful, wonderful news!!
It's about time it got fixed, darn it!!!
I agree with ya, when people are NICE, it just gets me. I'm the same way, I live alone, and drive myself to wherever I need to go. Ya do what ya gotta do.
I am so pleased, though, you get to have your Christmas after alL!!!
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My husband had fistulagram done & he drove himself to & from. I really expected a call to come & get him, didn't happen.
I have no idea what the big deal is. Maybe it has to do with covering their arse.
Rerun, have a nice holiday.
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One great thing about IHD is the permanent "Journal" that it keeps for me.
My arm and neck are swollen again!! So I found this post and the first time this happened was right after Vegas in October 2007, then again at Christmas.
I remember in January when I went for a follow-up they told me they were not going to open up anymore blockages because my body was trying to shut down my arm because there was so much blood going to the fistula. The more we opened up veins the more my body would fight back and try to shut them down. If we just left it alone my body would make new collaterials to go around the blockages.
OK, so now my arm and neck are swollen again. My face looks like I'm on 80mg of prednisone or something. I went and had just a fistulagram (no ballooning or anything) two weeks ago. My surgeon called and told me that there was a big vein deep in my chest that was blocked and there was nothing they could do surgically. Then he started talking to himself on the phone and was thinking of other ways around it. He said he would talk to some other vascular surgeons and get back to me this coming Tuesday.
Well, this morning the swelling is terrible. I think tonight at dialysis I'll try to challenge my dry weight. My left boob looks like a huge balloon. Not a pretty sight!!!
:shy;
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This sounds serious, as well as miserably uncomfortable. Tuesday sounds like a long way away right now. :grouphug;
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This all sounds very worrisome Rerun. I hope Tuesday yields some answers and some relief. :cuddle;
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Last night at dialysis they removed enough fluid that I'm a little better. My left arm and boob are still big, but my face is down. My dry weight is 48kg and so I tried to challenge .5 down to 47.5 and I crashed. So my dry weight is right on. We'll see what tomorrow brings.
My boss at Sears called and he is quitting. That relieves me in the fact that if I have to quit he won't think he made a mistake in hiring me. I lasted as long as he did.
:clap;
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Was that the same idiot who made a big stink about hiring you?
kg to lbs is a multiple of 2.205? Been so long since I had to use it, I forgot.
Glad the swelling has gone down a little, but hopefully Dr. Coocoopants can come up with a better answer for you.
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The Neph stopped by last night at Nocturnal Dialysis. He was telling me that it could be fixed by doing such and such. I don't understand the vascular system. But, what I was hearing from him was not the same as I was hearing from the surgeon. I told Neph to call Surgeon so they could get on the same page. I'm not doing anything until they get their facts straight.
:Kit n Stik;
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Morons I say Morons!
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I saw the "real vascular surgeon" that I'll be dealing with. He wants to do another fistulagram and see what vein is draining the arm. He will then decide what can be done. He wanted to look at my right arm for another access and I said "no". He needs to just fix this one.
:waving;
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i hope they will find something that will help.
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:grouphug; rerun. Let us know. :cuddle;
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EWWUUUU! Today is the day for another fistulagram. The only good part is the drugs. I hate, hate, hate this! I'll let you know how it goes.
:banghead;
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They did a veinogram on my Jugular to see where it was draining. It is blocked too and my neck hurts today from them digging around. They did a fistulagram also and the same vein in my chest is blocked and he couldn't balloon it open. I won't let him look at my right arm for another access. In Sacramento they already told me it was no good. Why is it these doctors need to see for themselves? My fistula is working fine, but there is no plan B. I don't know what to say except I've done this dialysis thing 3 years longer than I intended to. I don't want to be a walking fistula with old accesses all over my body with only 1 vein left in my little finger. I'm okay for now though.
:waving;
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Oh rerun. :cuddle; I'm so sorry. Let us know if we can help you. :grouphug;
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Rerun I hope things go better for you soon.
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Sorry to hear about all you're going through Rerun. :grouphug;
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I'm sorry Rerun. The whole situation stinks. Wish I could help in some way. :cuddle;
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Thanks. I'm okay.
ESRD :Kit n Stik;
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Rerun sorry to hear about all this you're going through. My thoughts are with you. :grouphug;
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Rerun,
I hope you find some relief soon. It must be very frustrating and painful to go through all that!
-Devon
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:boxing; You are a fighter Rerun.
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My goodness, Rerun! What you have gone through and are going through. Girl, my caring thoughts and prayers are with you all the way. :cuddle;
How are you today?
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I just got home from dialysis. I'm fine. My fistula worked fine last night.
:waving;
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Great news! :yahoo; :yahoo; :yahoo; I am so glad to hear that. Girl, you just keep on keeping on!
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:waving; Cool Rerun, happy to hear it!
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Things are worse. I guess blood pumps to my fistula arm, but is very very very slow to drain back to the body due to closed veins. My head, neck, shoulder, and left breast are swollen. My head feels like it is going to pop off. My hearing is weird and I can hear my heartbeat.
They don't tell me what to expect. Has anyone here had this problem. I don't even know what to look up on the internet. I only put on 2 kilos over the weekend and it didn't help. I was still swollen. It is a fluid problem, but not. Even if I don't drink anything it is still there.
They hope that my body would build new collaterals around the veins? :banghead;
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:-(
Sorry to hear this Rerun.
I hope all the swelling goes down very fast for you and they figure out what is happening.
P&K
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It is Sunday and the last day of my weekend. I go to dialysis tonight. Usually when I wake up on Sunday my faces is as big as my house. But, I try elevating my head and back when I sleep and I joined a gym. Yes, me who hates to exercise worse than dialysis or even death has joined a gym. The owner was trying to sell me a YEAR and there is no way! I paid $25 for a month to see if I will even go. I've gone 2 days in a row and just did the tread mill. Those are cool, it takes your heart rate, has an incline like you are walking up a hill etc.
Zach you should be proud of me! :thumbup;
What is the formula for heart rate. I learned it once in grade school during mandatory PE. Age X fat cells X height/ pie??? I would appreciate it if anyone knows it off the top of their head.
Oh, yes the point of this post is my face was not as swollen this morning. Usually when I look across the room I see the tops of my cheeks of my face. I still am hearing myself talk plus my heart beat which is driving me nuts.
The docs say that collaterals will build around the blockages but it takes awhile.
A friend's Father was in town and invited me to the Davenport Hotel for Brunch. This is a historic Hotel that has been remodeled and very nice. The brunch was $35 a plate. Is that nuts or what? The friend's Father insisted on buying mine. Thank goodness!! He is always very nice.
There were ice sculptures and even a chocolate fountain where you dipped strawberries. YUM!!
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Hang in there Rerun. Collaterals will form, will take some time. The Gym will help, excersise, just like maturing a fistula, will strengthen the collateral veins. Be patient, hahaha, easier said than doneI'm sure...
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Glad you had a nice brunch. :flower;
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Hey Rerun I joined a gym, too. I have been going two to three times a week. I must be nuts! I have also paid for sessions with a trainer. WTF!
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I'm glad you are feeling better Rerun!
I need to call tomorrow to get my *first ever* fistula scheduled ASAP (they wanted to wait til after Dec. 20th...she won't after she finds out my fistula stopped working for about an hour wednesday! :waiting; ). But anyway, I digress...
This thread makes my arm hurt.
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They fixed it yesterday. Yeah!!
The last two times I've had this done they asked if I had someone to drive me home and I said "yes" and I walked out the door, got in my car and drove home. This time I had to drive 30 miles to a new place and the receptionist was smarter than the usual. She wanted the name of the person and phone number. I gave her my dog's name (Adrianne) and my home phone number. She could tell I was lying and so I caved and told her that I could drive myself home and that I'd done it the last two times. Well that didn't work. She was very nice about it which made me cry. Go a head and be a bitch and yell at me but don't feel sorry for me or I crumble into a puddle. How humiliating! Everyone there had spouses or parents with them. I finally called a friend from work and she took time OFF WORK to come get me. We went around the corner and had lunch and then I went back to my car and drove home. SO THERE!
I am the FIRST one to admit when I can't drive. But, I feel fine after one of these procedures. AND if for some reason I didn't feel fine I would call someone. But, I don't really have anyone I can call. You know?
Anyway, he opened up two places and the swelling went away. I should be good to go. I'm leaving tomorrow and I'll be back around January 7, 2008.
See you next year! :santahat;
I used to do the same thing, I would tell them i caught a cab there and will call one to take me home, but I walk right out of there and go straight to my car and drive myself home. If I didnt feel i could drive i wouldve called somebody but i always feel fine. Now they make sure you have someone with you to drive you home. Also I wanted to say when i had a fistula in my arm and it started to swell up, it was always because of a blocked vein i have caused by the temporary catheter they put in when i first got sick with kidney failure. They would balloon it up the first couple of times, then they start putting stents in it. Stents are supposed to keep the vein open but they dont. Once they start putting stents in, its the beginning of the end of that access. My arm was 3 or 4 times swollen bigger than normal when they finally could stop using mines because i didnt have a lot of options for a new access
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sounds like what youre going thru is somewhat similiar to what i went through.They first suggested putting one in my right arm too but the veins werent good enough plus i have the same sorta blockage on my right side as i did on the left. I hope your doctors dont wait till the last minute to figure something out like they did me.
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The brunch sounds good, but not the rest of it. Hope they get a better plan together for you soon, Rerun. :cuddle;
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I'm continuing with this thread because it is the same subject..... my fistula arm... upper left.
I have always had a small aneurysm on my fistula which is getting bigger and bigger. So, I finally had an ultrasound on it today. Then the Surgeon (Dr. Dume and Glume) came in to tell me that it is not going to last and we need to do something to prepare for another fistula in my right arm. I've told him that I don't want any more fistulas. He is just dumbfounded that I plan to quit. He cannot understand that I don't want fistulas all over my body so that I can live six months longer. He doesn't understand that no matter how many fistulas you put in me that I'm not cured and that I'm not going to get any better. He doesn't understand that there is no future in dialysis. He wants to do a fistulagram (another one) on my current fistula to see if he can pair down the aneurysm but at the same time he wants to put some dye in my right arm to see if there are any good veins. I told him that if he found that he could NOT use my right arm that he had to pay for the procedure. But, I don't want to know if my right arm has any chance for a fistula palcement. Then I'd have to make another decision. I want to have no choices left and just be done with this crap.
:rant;
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I understand how you feel Rerun, but selfishly hope you change your mind. I respect whatever your decision. Just understand I love ya. :grouphug;
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Well I can't say that I know what you are going through because I don't. But, I can tell you that I care about you and it saddens me that you have to carry this heavy weight through life. It's also hard for me to imagine you as anything other than a fighter. :grouphug;
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Oh Rerun, I'm so sorry to hear this! What about a catheter? I realize you've probably already thought that through, but I just had to ask! We love you and respect any decision you make. :grouphug; :grouphug; :grouphug;
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Damn. Is there a better vascular surgeon around? I know you're weary of all of this. I am sending you lots of love Rerun. :-*
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:-(
Dont even talk like that Rerun.
Your stupid doctors may not need or know you but we all do.
I see where your coming from. But
:cuddle; :grouphug; :cuddle;
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:grouphug; Oh rerun :cuddle;
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Oh Rerun.....I know what you are talking about, however, once I found this good vascular surgeon in Charlotte my thought processes changed a lot. Have you checked around to see if there is another Vascular Surgeon, sometimes they deal only with accesses for kidney dialysis, and if not, please think about a catheter. I'm not sure how you are feeling physically all over and that will affect your decision also. Please, just step back for a moment and think about this. Remember, we are all here for you.
:grouphug;
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Rerun, you have been through years of ups and downs. And you have been very clear of your decision for some time now. I want you to know how much fun you made the first Vegas trip. I was ready to meet this tall blond and but what I met was better. A tiny little package of dynamite!! It was a great weekend. I was a newbie back then. Sluff said it best; selfishly we hope you change your mind. I know you have strong believes so I will pray for God's will and pray that He surrounds you with His loving arms during this decision making time. :cuddle;
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Rerun, I back you in whatever choices you make. Graft problems are a true pain in the butt! It is your body and life and you have to do whatever you have to do! :grouphug; :grouphug;
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Rerun. We all respect whatever decision you make but you may or may not remember that I wasn't even going to start dialysis because of the problems I was having with access. I had three graft operations in as many months and my vascular surgeon said because of my veins any access was going to be a nightmare. Well, the last one they did has been fine for the past 18 months and my mind set has changed enormously. I know all the surgeries are a pain but maybe you should give your right arm a shot and then take it from there. I am sorry you feel so down about it but I am sure there are many here who know exactly how you feel. If you are going to have one placed in your right arm I would make it a new start. Let another vascular surgeon have a crack at it. I know the cost involved is also a problem but surely there is a way to get you the best outcome possible. I hope you change your mind. Lots of love, Cindy. xxxx
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I appreciate your love and support. I have been told that I can't get anymore catheters and that my right arm is no good for an access. This guy even admits that he can't go in on my left side for a catheter. This guy... unless he sees it for himself then he won't believe it.
The access I have will last me the rest of my life. Now you can see that in a positive way or a negative way.
If I had a perfectly working access no one would be looking at my right arm. AND Boom! One day it quits! Then what? To me this is the same thing. My access is working fine and we will deal with it when it quits.
I am doing better today. I also feel that if things were going better on Thursday nights I'd have a more positive attitude, but I don't really relish the thought of continuing dialysis LONGER than I have to with those two bozos.
:thx;
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I just looked at the post I did on Premium Member the last time this guy (Surgeon) tried to scare me and it was six months ago! SIX months ago and he had me thinking I had days left! I'm sorry I get pushed to the edge so easily!
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:boxing; Keep up the good fight Rerun.
Love you! :cuddle;
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Girlfriend, please know that we are there at the edge with you. Hope that thing lasts sixty more years!!! You are very important to us at IHD, Rerun. :grouphug; You are very important to me :cuddle;
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You are in good company there on the edge! I think at any given time you will find several of us there. I told my daughter tonight that I was tettering and one little push would have me over the edge. We'll just plan on things getting a little better, fistuala keeps working and you keep posting on IHD ----- because we need you and we love you :cuddle; :grouphug;
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Rerun, I hope your current fistula lasts as long as you want to carry on. Its not hard getting down hearted with this lifestyle. Lots of big hugs coming your way :grouphug;
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:cuddle; {{{HUGS}}} Dialysis and doctors suck Rerun. I am sure everyone would agree. It would be great to be "normal" for a day!
Please just take one day at a time and make the decision when you have too. I hope your fistula can be repaired and the bozos smarten up. :cuddle;
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rerun ------"no shit, Dick Tracy" :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; I am going to quote you every chance I get ------ good thing I am not teaching high school ------ I could start a new catch phrase-----
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:boxing; :cheer: :guitar: (do you understand what I am trying to say?!)
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Rerun I just saw this on another site and thought I would pull it over here. Have your doctor look into it.
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Thanks Kit I'll copy that and show it to him.
I had my fistulagram on my left arm today to look at the aneurysm. And he did a vienogram on my right arm to see if there were any veins to work with.
We didn't talk about anything today because he could tell that today was enough trauma for me.
We will talk in a few days.
Then my sister and I went out to a Buffet because I had dialysis last night and again tonight to get the dye out of my system, so FREE EAT ANYTHING YOU WANT day! :thumbup;
I'll post more when I hear from the Surgeon on my options.
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FREE EAT ANYTHING YOU WANT day! :thumbup;
Have yourself a few Ritz crackers with peanut butter!
:2thumbsup;
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Rerun I just saw this on another site and thought I would pull it over here. Have your doctor look into it.
Kitkatz, thanks for sharing that. Rerun, enjoy the buffet :2thumbsup;
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Rerun, everytime I see this thread I remember you selling windows or siding - strutting your stiff - oh man - makes me laff - sorry honey - I hope tomorrow is better.
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The surgeon finally called me. He originally said he would call me in a couple days..... well maybe he meant a couple of weeks! It has been 14 days. So, I told him that I called his office 3 days after my procedure to send him this new technique idea for fistuals (the one Kit posted) and his office girl would NOT let me email the office so that I tried to make an appointment and no one called me back. I told him "That is why I don't want to continue this.... I'll be damned if I'll call six times to make an appointment". Yes, I did say that.
:clap;
He immediately gave me his email and 3 hours I got a call from the office trying to apologize saying they didn't get a message.
He said there are 2 options for me. To take a tube and go from my fistula across my chest to to a vein to drain or to start over with my right arm. I guess he found a vein he could work with. I told him I would think about it. I really don't want to go to my right arm.
I keep thinking that my current fistula is working now......
:stressed;
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:cuddle;
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My graft finally was done after 13 years of use (I know, I'm amazed too) and I had a fistula placed in my upper arm March 12th.
It looked great, really strong with a very active thrill. So Monday we decide to start with one 17 gauge needle. We'd use my catheter for the other line.
Everything was fine for two hours. Until they removed it. I held the gauze for about 30 seconds before I had incredible burning pain. It hadn't burst, but had bled underneath and spread. Now my upper arm is swollen and we have to wait another four weeks to try again.
Egad.
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This is for both Rerun and Stacy! :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle;
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Hope this gets resolved soon Rerun...and sorry to hear about your fistula Stacy.
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:cuddle; :cuddle; Hugs Rerun. I know either option sounds like a pain in the :sir ken; Thinking of you.
:cuddle; :cuddle; Hugs to you too Stacy.
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The surgeon replied to my email. I sent him a picture of the HeOR that Kit sent me.
Thanks for the info. It was FDA approved Jan '08; but the company didn't really ramp up and start selling it until less than a year ago. I had been following it in the literature, and was waiting for it to become available, because it is a device we can use for some of our patients.
It is not, unfortunately, a device that we can really use for your left arm (primarily because we cannot cross your chronic occlusion)
I suppose it could be placed in your right arm, but your best option there long term is another transposition.
Your choices are either:
1) start constructing a new R brachial-basilic transposition
2) construct an axillary vein-axillary vein prosthetic to drain your left arm and hopefully improve its long term patency, as well as keep your L arm pseudoaneurysms from worsening
3) do nothing. If you then thrombose, you will definitely be looking at a right neck or femoral catheter
Dr. Joe Davis
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Well crap. Those are some choices there.
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I am with kitkat those choices suck... Im sorry
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:Kit n Stik; Crap
Dialysis SUCKS.
:grouphug;
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Rerun I just saw this :cuddle; :cuddle; :cuddle; sorry u have to deal with this crap Girlfriend :cuddle;
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This is what I emailed Dr. Davis....
Dr. Davis,
Will this axillary vein prosthetic be visible; like a tube under my skin across my collarbone? I'm not vain at all, but I don't want to look like more of a freak then I do.
Have you done this procedure on others, and if so, can I talk to someone who has one?
Even with my left arm... it has always had problems and Dr. Park (in Sacramento) told me I would have problems because I had bad veins from 22 years of Prednisone. How would my right arm be any different? To me it would be even worse because they chose the "good" arm.
I went ahead and had the left arm fistual against my better judgement because my transplanted kidney had not failed yet and it would be a slow death with it still trying to work for me. I'm just telling you how it is. Now it would be quick.
I am willing to try anything once. I have done home hemodialysis, PD, transplant, incenter hemodialysis, and nocturnal dialysis. I have had probably 4 catheters and countless fistulagrams. I am not a quitter, but my gosh it comes to a point where I feel guilty for costing the tax payers so much money, and I get tired of contributing to the health care crisis.
Neither option will cure me, and what future do I have in dialysis with no hope for a transplant. All I can see are more problems. You have to realize there is no break from dialysis. There is no two weeks off to go to Hawaii and then come back and hit it again. It is every other night with Saturday night off. I guess that is not enough for me.
Maybe you could get back to me with a name and phone number of someone who has this axillary vein prosthetic?
I have yet to see Obermiller, so I emailed him today reminding him that if he doesn't visit the center in April he won't get paid by Medicare. That may set a fire under his ass!
I stopped the nurse last night before he put heparin in the wrong line. That is just another example of why I'm tired of dialysis.
I really hope you understand my decision, but maybe we can agree to disagree. Isn't that politically correct these days?
Thanks,
Darla
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Great letter Rerun :thumbup;
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Good letter to the doc. Maybe he will see things your way soon. I am hoping you can work something out soon.
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His reply is in bold:
Dr. Davis,
Will this axillary vein prosthetic be visible; like a tube under my skin across my collarbone? I'm not vain at all, but I don't want to look like more of a freak then I do.
I think we can bury it pretty far down so it won't extrude-I will try not to make it too visible
Have you done this procedure on others, and if so, can I talk to someone who has one?
Sorry, no. While putting a graft in is something I do every day, this graft (axillary vein to axillary vein) is pretty uncommon. Usually, in your situation we end up developing the other arm for access.
Even with my left arm... it has always had problems and Dr. Park (in Sacramento) told me I would have problems because I had bad veins from 22 years of Prednisone. How would my right arm be any different? To me it would be even worse because they chose the "good" arm.
Like I said, you have fairly good vein on the right arm
I went ahead and had the left arm fistual against my better judgement because my transplanted kidney had not failed yet and it would be a slow death with it still trying to work for me. I'm just telling you how it is. Now it would be quick.
In my experience, very few people, when push comes to shove, are willing to stop dialysis and die. What I think will likely happen is that your left arm will fail, and then you will decide you want to live. And then I will be several months behind, be forced to develop your right arm (we likely would not be able to save your left arm fistula), and you will have a right neck catheter or femoral catheter for several months
I am willing to try anything once. I have done home hemodialysis, PD, transplant, incenter hemodialysis, and nocturnal dialysis. I have had probably 4 catheters and countless fistulagrams. I am not a quitter, but my gosh it comes to a point where I feel guilty for costing the tax payers so much money, and I get tired of contributing to the health care crisis.
Neither option will cure me, and what future do I have in dialysis with no hope for a transplant. All I can see are more problems. You have to realize there is no break from dialysis. There is no two weeks off to go to Hawaii and then come back and hit it again. It is every other night with Saturday night off. I guess that is not enough for me.
Maybe you could get back to me with a name and phone number of someone who has this axillary vein prosthetic?
I have yet to see Obermiller, so I emailed him today reminding him that if he doesn't visit the center in April he won't get paid by Medicare. That may set a fire under his ass!
I stopped the nurse last night before he put heparin in the wrong line. That is just another example of why I'm tired of dialysis.
I really hope you understand my decision, but maybe we can agree to disagree. Isn't that politically correct these days?
Mrs Irwin, you're the patient. You are always the one in charge. It's your body, and I will respect whatever decision you make.
Thanks,
Darla Irwin~
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Monday April 27, 2009
I'm in the hospital because there is a spot on my fistula that does not look good.
I saw the surgeon and he is getting his way. Tube across the chest and start on the right arm.
I was concerned that he had never done the tube across the chest and his analogy was like riding a bike up a hill. You know how so it doesn't matter what hill you go up.
Let's hope! :flower;
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:flower; Hugs Rerun. I am glad you are giving it a go. Hopefully it will go smoothly and all the drama will be behind you. We need you around for a while yet!! :cuddle;
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I hope this works so you can hang around for a long time to come!! :cuddle; :cuddle; :cuddle;
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Oh my Rerun! I wish you luck!
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I genuinely hope that everything turns out okay. :cuddle;
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Rerun, I'm thinking of you and hoping for a positive outcome with every fibre of my being. We need and want you back here with us.
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Rerun, Lots of prayers for a good outcome. Your surgeon seems to respect your opinions, and at least is listening to you. I hope the surgury is fast and you have good drugs! :grouphug;
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:cuddle;
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Rerun hasn't posted in a couple of days. Has anyone heard how she's doing?
Rerun, Get well soon!!!!! I mostly lurk these days, but I miss you.
Deanne
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I was also questioning today whether anyone had heard from/about her. We are all mother hens to each other. I love it!
Here's hoping all is going well for Rerun! :grouphug;
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Thinking of you, rerun. :cuddle;
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Thinking of you Rerun and hoping for a good outcome here!
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We keep praying for you Rerun. :grouphug;