I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: rocker on March 16, 2009, 11:53:01 AM
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Hi all,
I'm new here. I've read the board a few times, but after yesterday afternoon I just had to post.
My husband's kidneys failed about 15 years ago. He got a transplant within a year. This last year, we have been through many ups and downs as the graft slowly failed. In July, they finally called it a goner. He had a permacath placed in his neck, and went back on dialysis. While in the hospital, his bowel perforated, and that required an emergency colostomy.
I started reading up on dialysis again, and discovered that there was general agreement that a fistula is The Way To Go. So as soon as he got out of the hospital, we started the fistula process. With one thing and another (for example - he needed cardiac clearance. So it was two weeks to see the cardiologist. We see the cardiologist. He wants a stress test - which can be done in three weeks. We go in for the stress test - they make an appointment to discuss the results. For a month later.), the fistula was finally done in December. He went in for followup after two weeks - looks great. The surgeon insists on a three-month maturing time - no exceptions. We make the appointment for March 11.
Last Wednesday - this is it. We are on the road to getting the stupid thing out of his neck! Meanwhile, the dialysis techs are drooling over his fistula. Oh, MY! That's a NICE one! When can we poke needles in it??! ;D ;D
The surgeon gives the all-clear. We begin dreaming of showers. Just two more weeks. His dialysis days are TRS. So last Thursday and Saturday they put one needle in the cath, and one in the fistula. Being cautious, they say. Fair enough.
Yesterday we were enjoying a lovely Sunday afternoon at home. His hematocrit is currently normal :2thumbsup;, and we were saying we ought to go for a bike ride since he has some energy. Our daughter was home for spring break, and she got in the car to drive back to school. I went outside to plant some flowers. Hubby goes off to move some things around in the garage. About five minutes later, the front door cracks open a bit. Hubby says calmly "Can you come in here a minute, hon? I have a problem."
Ok, sure. So I rinse my hands and walk inside and say "Hey, what..." and OH MY GOD THAT'S HIS PERM CATH IN HIS HAND!!!! :o :o
Familiar object. Very unfamiliar location.
The moment I recognized what was in his hand, I immediately looked up to his chest. As he was wearing a white t-shirt, it didn't take me very long to notice that it was not, in fact, soaked with blood. There was one tiny spot.
He said "What do we do?" I said a bad word. Then several more bad words. Then, "I don't know."
Having a major medical device fall out of my husband's chest is not a usual part of my daily experience.
So I thought for a second. "Ok, we're going to the emergency room. Get in the car, I'll drive." and started to move. He said "What about the surgeon?" I said "We'll call him on the way! Get in the car!"
So we get in and pull out. I start fumbling with my cell phone, he tells me to drive and he'll deal with it. I tell him call the office number, get to the answering service and ask them for an immediate callback from the doctor. He does. Five minutes later, bless the dear doctor's heart, we are halfway to the hospital and the phone rings. My pulse rate is now nearing a thousand. My husband says "Yes...my perm cath just fell out. I'm not bleeding. I'm calling to find out if I should go to the hospital." A few moments, then "Yes. Twice." Pause. "Neosporin? Ok. .. I didn't even feel it fall out, is that unusual?" (He told me later he felt something odd resting on his stomach inside his shirt. He reached up under the edge of his shirt - and found his cath.) "I'm looking at it and the ends look cut and all, not torn." After a couple minutes he says "Ok, thank you doctor" and hangs up.
What? No "I'll see you there" or even "I'll have them call you"??
I have reached the turn for the hospital, and am waiting at a red light. Well? WELL????
"He said to put Neosporin on it."
Uh.
What?
Six inches of blood-soaked tubing just fell out of your body, and....."put Neosporin on it"????????
The light turns green. I drive straight through, missing the turn. Hubby says "Go home." Nothing is making sense. After a few seconds, I turn into a parking lot and stop the car. "Go home?" He says yeah, the doctor seemed completely unconcerned. Not even surprised. Told him to take off the old dressing, clean the area, and put a new bandaid on it for the next 24 hours.
That's...it? I sat there for a minute. I said "Ok, I am good in a crisis. I do everything I need to do, calmly, until the crisis is handled. Once everything is out of my hands, I fall apart later. But THE TURNAROUND TIME HERE IS TOO DAMN FAST!!" I didn't know whether to be icy calm to handle the crisis, burst into tears because the crisis was over, or just chill out because apparently there was never any crisis in the first place...?
I think of all the months I was terrified of that damn thing...we talked later, and we had both pictured some Monty Python scene of great gouts of blood if it was ever dislodged...We were even concerned if the removal would be a difficult process. And it just - fell out. What an anticlimax.
He said the only time the doctor showed any emotion at all was when he told him he didn't even feel it come out - the doctor replied "Really! Huh, they're usually wedged up there pretty good!"
So anyway, I was kind of a wreck the rest of the day - kept expecting some weird thing to happen, maybe. But even at the time, we could see the humor of our hysterical dash to the hospital only to have the surgeon yawn the whole thing away. I'm better today....though I didn't sleep very well last night, I didn't wake up covered in his blood, he didn't clutch his chest dramatically and fall to the floor, and he's no more incoherent than usual today. ;)
I just thought, we need to take our humor wherever we find it, and someone else might get a laugh out of the whole thing.
Cheers,
- rocker
EDITED: Moved to proper section - Introduce yourself - Sluff/Admin
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My husbands temp cath recently fell out (early Feb.) he had a trickle of blood, it scared us- he had an anxiety attack- I called an Ambulance! By the time I got to the hospital behind him with his shirt, it had stopped bleeding on the way there- they gave him a bandaid and some neosporin too- we were a bit red-faced over our panic!!
So- I know JUST how you felt!
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Welcome Rocker, good to have you aboard.
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:welcomesign; rocker. Great introduction and hope we hear more from you. We a great group with loads of information and support. :cuddle;
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:welcomesign;
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My husband Marvin had a perm cath fall out, too! Marvin's had 14 total perm caths over the years (7 on each side of his clavicle). It was #13 (go figure!) that fell out. We had just left his surgeon after a check-up. This particular perm cath had been in about a month, and this was a follow-up appointment. Marvin's "regular" surgeon didn't put this one in, but when we went for the follow-up, he decided to snip the sutures that were dangling out (this was the first perm cath Marvin had had with sutures hanging out like that). Snip! Snip! "Looks good. See you in another month."
We stop at the pet store about five miles down the road so I can buy some toys for my puppy, Hop-Sing. I'm squeezing the toys to make sure the small ones squeak (Hop-Sing has to have a squeaky toy), when Marvin turns the aisle and says to me, "Marsha, we have a problem."
I notice he's holding his chest right where his perm cath is. "Is it your perm cath?"
"No," Marvin says, "it's the hole where my perm cath used to be."
Marvin then touches his shirt at his belt (shirt is tucked in). "The perm cath is right here." He's applying pressure because we were told years and years ago that if his perm cath ever came out, he'd bleed to death.
"Holy sh*t!" I scream as I throw the squeaky toys down on the floor.
We run (RUN, RUN) to the car. I get on the cell phone and call the surgeon's office. "Marvin's perm cath just fell out!" I scream to the nurse.
"Get him back here quickly," the nurse says. I drive like a maniac; it was the longest five miles of my life. We get to the clinic (attached to the hospital), I grab a wheelchair and take off (Marvin barely has time to sit down in the wheelchair). I'm running as fast as I can pushing him (there's a long cat walk from the parking lot to the clinics). The nurse is waiting for us at the desk. She takes the wheelchair and wheels Marvin back to an examining room. The surgeon meets us in the hall way.
"Let me look," the surgeon says, but Marvin won't remove his hand from the spot where his perm cath was (he's been applying pressure this whole time). Marvin doesn't move. "You're going to have to move your hand so I can see, Marvin," the surgeon says. "Get something to stop the bleeding," Marvin says. "Let me see how much blood there is," the surgeon answers.
Marvin slowly, slowly, slowly removes his hand. There's a spot of blood on the inside of his shirt about the size of a pencil eraser. That's it! When the surgeon inspected the perm cath (which was still inside Marvin's shirt but dropped down to his belt), he said the one the other doctor put in didn't have a cuff on it and was a "temporary" one. The stitches were holding it in place.
Marvin went right back to the nuclear medicine clinic and another perm cath was reinserted in the same tunnel as the previous one (this one had a cuff).
We were both terrified -- no, scared completely out of our wits.
We go back to that same clinic every month or so (this was probably four or five years ago), and every time we walk that cat walk, Marvin teases me and says, "That day my perm cath fell out, you were running so fast pushing me down this cat walk that I could see the front wheels on that chair just wobbling in and out, in and out." Then we both laugh. It's funny now -- but it certainly wasn't funny then!
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Woo! It's great to hear these other stories.
He said his first instinct was to reach up and apply pressure to the spot, but he also couldn't help but notice that he didn't appear to be bleeding. :)
After sitting in the parking lot for a minute, I pulled out and we went home. He removed the dressing and swabbed it with alcohol, then Betadine, then coated it with antibiotic gel and put another bandage on it. He thinks the site didn't even bleed - the blood we saw on his chest and stomach looked really thin, like it was the heplocked tube blood that just emptied.
We find the weirdest thing to be the timing. Eight months after insertion, and four days after they started sticking the fistula. Not to mention that we were home when it happened - and not on the rural bike trail where he suggested we go ride. (I would DEFINITELY have called 911 if we were on a trail!) He said the tech who cleaned it on Saturday was very rough and it was fairly painful - he thinks that may have been when it dislodged.
I'm not really embarrassed at overreacting - over the years we have learned that the real danger is not being aggressive enough to get something looked at when you know something is wrong - you have to stand up and yell when it seems you're not being taken seriously.
But I do think it's funny. :)
And I do realize that they have to do two needles in the fistula tomorrow, which they haven't done yet, so fingers crossed.
Btw, when we got undressed for bed, I took his white shirt. Some cold water, Resolve laundry pre-treatment, and a few seconds of scrubbing took care of the blood spot.
And we did get that bike ride in tonight! :clap;
- rocker
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Welcome........ :welcomesign; Wow...and I thought the world would end if a permacath comes out..ok. BTW..peroxide is wonderful at taking blood out and much cheaper too..... :cheer:
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:welcomesign; Wow! I didn't know caths could just fall out like that! My surgeon had to practically rip mine out of my chest when it was time to come out. The first time he tugged, he tugged so hard my whole body came off the bed!
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Wow...and I thought the world would end if a permacath comes out..
Kids - Do Not Try This At Home. :rofl;
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Well, you saved yourself Thousands by having to go to the radiologist and having it yanked out.
:beer1; :welcomesign;
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First WOW
Second LOL Funny now that all are safe in these stories thank God.
And third
:waving; Rocker great to have you with us here.
Hope to see you around often.
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At least your sense of humor is intact, even if the permacath isn't!
Welcome aboard!
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Wow, has it really been three weeks...
So, I thought I would follow up. The cath fell out on Sunday, and his dialysis days are TRS. So he went in Tuesday morning....after taking a looooooooong shower Monday night. They stuck him with two needles, and he blew immediately. They said they wanted to try once more. So he went in the next day, and immediately blew again. So it was hospital again...he came home and slept a couple hours while I made phone calls. Got in at 11 for a cath insertion. His venous surgeon was on vacation (apparently for the first time in living memory of any of the hospital staff...), so we got to meet a new surgeon. I was a bit stressed because we were now at 5 days without dialysis, but his potassium was 5.4 and the surgeon was OK with that. After a 4 hour wait or so, he finally went in and got a new cath. The surgeon told me he would normally admit him and dialyze him, but since he clearly wanted to get out (to the background noises from ten feet away of "Yes! Yes! Out! Home! Out of here!") that he could be released and go home and take a dose of kexolate (and we had a can of Kionex at the house) and do his regular dialysis the next morning.
He had a lot of pain from this one for several days, and says he still feels a little strangled, but no complications. His regular surgeon checked him after a week and saw no issues.
The new dialysis nurse told me that they normally like to do a one-needle stick for 3 or 4 weeks before going two needles, so she wasn't terribly surprised. She kept saying "It's just a baby!" He's been cath-only since the insertion. He told me he was going to try one needle again yesterday, but chickened out at the last minute. Maybe tomorrow.
So...could be better, could be worse. :)
- rocker
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First off, welcome aboard. Second, I absolutely love the way you write. Keeping a sense of humor about the whole thing probably got you through the "crisis" faster than panicking. I'm glad it had a happy ending. Keep on posting; I'd love to read more from you!
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What a wonderful introduction! You have a real gift of writing. Glad things worked out, but I can't imagine how scared you were. Glad you joined this merry group. I look forward to reading more of your posts.
paris, Moderator
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What a wonderful introduction! You have a real gift of writing.
Thank you!
Perhaps you've read some of my published work...I have some fascinating software manuals out there!
Probably not. Be happy about that.
But hey, a girl's gotta do what a girl's gotta do... ;)
- rocker
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:welcomesign; rocker. It's good to have you and your stories here.
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Rocker: When the surgeon from the Radiology Dept. took out my catheter he broke the tubing.
So I'm lying on the table feeling bloor run down my side and neck. The surgeon says "shit" and then
puts pressure on it to stop the bleeding. Then he yanked for minutes trying to get out the tubing
remaining of the catheter in my chest. He finally got it all out without having to cut.
Ain't dialysis fun.