I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Vt Big Rig on June 30, 2015, 06:05:26 AM
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We started home dialysis training in mid April. Due to MANY fistula issue we did not go home unit June 1 and then the nurse came to the house for almost two weeks to assist (especially after third fistula gram caused major swelling).
But for almost two weeks now my wife has done all the cannulations and connections by herself with great results. Last night we could not get arterial to be smooth until the third needle adjustment and only got the venus after two adjustments and a re-stick. And them we turned on machine and got ridiculous pressures immediately on aterial.
We tried to readjust again but needle site started bleeding (a LOT). We bag it and decide to quit for the night and start fresh the next day. After being bandaged I was cleaning up and preparing our cart for the next day. Then I go to kitchen to find my wife standing over the stove sobbing and terrified that I am having more fistula problems. I think we just had a bad stick. I tell her it happens and will very well happen to us again. She calmed down at least in front of me. :rant;
Please tell me "it happens" concerning the sticks and we will get better.
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sorry for the issues. Yes fistulas can be very problematic in some patients. We have had 3 surgeries to repair my wifes fistula. In the end it works out usually. You do have the option of a catheter for awhile if necessary. They are easy to use while you get the fistula fixed. We did catheter for months at the beginning.
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sorry for the issues. Yes fistulas can be very problematic in some patients. We have had 3 surgeries to repair my wifes fistula. In the end it works out usually. You do have the option of a catheter for awhile if necessary. They are easy to use while you get the fistula fixed. We did catheter for months at the beginning.
Thanks
My fistula is over a year old. We installed it to be prepared. I have had three ream jobs and some branch blocking since we started but it has been running great for better than two weeks now.
Do you ever have days when it just does not seem to want to cooperate?
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I understand what your wife is feeling. It's downright awful what a carepartner and patient have to deal with but you have to take a deeeep breath every day and start again. And it's okay to cry.
My husband self-cannulates but I help guide his hands. He's been doing home hemo for 1 1/2 years and has had to have SEVERAL angioplasties (ballooning) performed on his fistula. Seems like every few months he needs to be ballooned. But over time, we've noticed that his fistula is working better and better. All that bleeding and high arterial pressure and alarms in the beginning are quite stressful but...there finally comes a point where things smooth out. Sometimes it's not the stick but rather, the arterial pressure pod on the cycler needs to be reset. Things smooth out and...then you go thru alarms again and another trip to the vascular surgeon...then it smooths out again. My husband uses the Buttonhole method to cannulate. I believe this makes it a little easier for him because he sticks the needles in at the same spot, angle and depth each time. Kind of helps take the guesswork out of it. Anyway, please tell your wife that we all go through this and it's okay to feel what she feels. Best thing to do is just keep offering one another support and encouragement.
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We've done home-hemo only with the catheter so far. My husband got his fistula in January, starting using it in centre in April and had problems. He had a fistulagram and it seems to be working well so he has been getting trained to stick himself. He has not been able to do it. He can't get the catheter out until either he or I learns to stick in the needles...or give up and go back to the hospital 3 days a week for life.
So tomorrow I'm going to watch for the first time and see if I can do it for him.
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I'm well impressed with all the care partners who try, or stick their partners. Just asking though if there's a physical, or medical reason why one doesn't self cannulate?
Love, Cas
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I'm well impressed with all the care partners who try, or stick their partners. Just asking though if there's a physical, or medical reason why one doesn't self cannulate?
Love, Cas
In my case with my fistula in my right arm I am not steady enough with my left. And we do not use buttonholes. I said something one day about learning to stick myself and my wife freaked out ... not wanting me to do in fear of messing up the access. With the issues we had I see her point. Not that I am keen on the idea anyway.
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In my case with my fistula in my right arm I am not steady enough with my left. And we do not use buttonholes. I said something one day about learning to stick myself and my wife freaked out ... not wanting me to do in fear of messing up the access. With the issues we had I see her point. Not that I am keen on the idea anyway.
[/quote]
Fair enough, however, my fistula is in my dominant arm, and by 'playing' on my mobile phone, and texting, and writing with my 'weak' arm, I'm completely able now to 'do' myself. It makes me feel completely independent. But of course that's my choice, basically down to my paranoia, about having an argument with hubby, and than having him stick me. Not going to happen
:angel;
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I cannulate my wife and run the dialysis . I like being involved . Also being a doctor I am better at it then her. I wont let anyone touch it other then me. I do rotating sites. I don't like buttonholes in general but for some patients they work well.
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I asked him what he thought his main issue was, he says nerves get him and he can't get the angle right. He's trying to use buttonholes. I suspect it's more to do with poor eyesight but that he just won't admit that.
I just hope I can do it.
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UPDATE
Today went fine so far. Up and running....... First stick ..... Good pressure
And CASS ...we have been married for 40 years ......if I can't trust her .......I am doomed. :waving; :2thumbsup;
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UPDATE
Today went fine so far. Up and running....... First stick ..... Good pressure
And CASS ...we have been married for 40 years ......if I can't trust her .......I am doomed. :waving; :2thumbsup;
:thumbup; EXCELLENT! I wanted to add that after pulling needles, be sure not to "mash down" on the fistula til the bleeding stops. I read somewhere that over time, applying too much pressure can damage a fistula. I apply "gentle" pressure using the 2-finger method and I hold for 4+ minutes before taping the gauze down. I never lift the gauze to take a "peek" to see if the bleeding has stopped. If you peek, the bleeding may continue or start up again and you have to keep applying pressure. It's real easy to panic when that happens and to think that you have to hold the gauze down "hard" to stop the bleeding but in reality, you are just putting unnecessary pressure on the fistula and maybe even causing it to bleed out the needle holes more.
Edited to correct spelling: peek vs peak
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:thumbup; EXCELLENT! I wanted to add that after pulling needles, be sure not to "mash down" on the fistula til the bleeding stops. I read somewhere that over time, applying too much pressure can damage a fistula. I apply "gentle" pressure using the 2-finger method and I hold for 4+ minutes before taping the gauze down. I never lift the gauze to take a "peek" to see if the bleeding has stopped. If you peek, the bleeding may continue or start up again and you have to keep applying pressure. It's real easy to panic when that happens and to think that you have to hold the gauze down "hard" to stop the bleeding but in reality, you are just putting unnecessary pressure on the fistula and maybe even causing it to bleed out the needle holes more.
Edited to correct spelling: peek vs peak
Interesting in different training methods. We were taught to hold with two finger method for ten minutes and then "peek". If not "leaking" put on new gauze and tape. If we leak we hold for a while longer. If it leaks I ask if we can lower heparin a bit. So far we are using 5,000 units and have not had any clotting problems in pod or dializers.
Since it is at the end of a treatment those ten minutes seem like FOREVER .... :stressed;
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And then there was tonight ...... aterial OK. Venus can't prime, cant pull out with syringe. Restick. Can't prime. Draw clots into syringe. Pull needle. Squeeze out a tablespoon of gross clots.
Trying for fourth fistulagram in the morning. Last one lasted all of 12 treatments.
Crap, crap, and double crap.
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Holy s**t , terrible to hear, I'm so sorry, will be thinking of you and your wife and sending healing vibes your way
:grouphug;
Lots of love, luck and strength, Cas
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Hang in there! It will get better. You have had more issues than most but we all have had some issues either with maturing fistula, sticking, or pressures...Just got to keep working with access doctors and nurses to get it right...
One thing that I have found...once you get a good flash on either a or v, get the smooth feel of a very easy push to find the sweet spot. Then the needle goes in the rest of the way very easy and you will find the pressures are better on the machine. It takes time to get that feel but once you do, you will have an easier go at it. When I get that special spot for both, I know it is going to be a good day!
Things will improve for you! Just stay focused and keep working at it with the right medical people.
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We are at the hospital right now to have another fistula gram. Two nurses here never knew that dialysis could be done at home! They are now educated!!!!
At least we are getting in today and hopefully will get some treatment in this weekend.
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Hope they get things flowing again quickly for you guys so you can be "back in action". Sometimes after my husband has had an angioplasty and there is better flow, seems the increased flow moves the fistula a little (makes it fatter or moves it a little to the left or a little to the right, etc) and he has to change the angle and depth he puts the needles in. We've learned to be patient and expect this little frustration until we get use to the new angle/depth. Also, and I realize you and your wife might already be doing this but, as he inserts a needle, sometimes I have to kind of "hold down" his fistula by pulling it slightly taut on the sides using either both of my hands or a finger on each side of the fistula to keep it from moving or sliding around as the needle goes in. It's almost as if fistula's get a little rubbery inside or like a fat piece of spaghetti and until it goes in at just the right angle, needles sometimes seem to just push the fistula around, as if to be chasing it instead of penetrating it.
Another thing I learned is that once we are ready to hit "Go" and start treatment, we try to increase his blood flow rate beyond the start point of 200 within a minute or so. This seems to have helped him to avoid clotting up before we level off at his preferred rate of 360-380. I'm not saying to increase your speeds and climb up at lightening speed, I just think that the sooner the blood can start being circulated the better. I think that's why people who do nocturnal and going at much slower rates have to use Heparin pumps. Well, good luck with yours, may there be better days ahead!
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Well we were squeezed in and it is coming up on a holiday weekend but we waited almost 6 hours before going in the OR. :waiting;
Show the surgeon a picture we pulled and he stuck a probe in the fistula with a camera on it an pulled it out and said it was as clean as he could have made it. But he did give my wife some tips on cannulations and assured here he sees this often from in center folks too. Maybe we pulled out all the clots. We will see when we run tomorrow.
And Prime Time...... someone showed my wife the second method of holding my are and she goes likes it better. What she likes , I like. :2thumbsup; :2thumbsup;
We start the machine at 200 ...... wait two rounds of stable pressures and if good up by 50, Repeat.st because as you know the venus pressure may take a second to show up. I do not what that is in time.
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Here we go again
Last time in this thread I got another fistulagram and he said it was cleaned out. That was 17 treatments ago. Last night after four sticks we could not get access. Could never get line attached to needle to fill without pulling hard on a syringe. When we did get that we see a bunch of clots in the line. Squeeze out a pile on a pad AGAIN. :puke; After four tries we decide to quit and try for tonight.
Last fistualgram last 14 treatments. This one, although he did not do anything, lasted 17 treatments. :stressed; :stressed;
Terrified that tonight will be the same and of course it is coming on a weekend so no vascular guy will be available. And is a monthly fistulagram in my future? :Kit n Stik; :Kit n Stik;
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coming on a weekend so no vascular guy will be available.
Hospitals generally have vascular surgeons on call (been there, done that). The trick is getting the attending in the ER to decide it is important enough to "make the call".
The might not have the team for a fistulagram available, so a weekend might necessitate a femoral line.
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My blessed wife would not give up. We pulled 3 half syringes of clot out of aterial and 1 1/2 out of venus but we are now running with good pressures.
Thank you God and God Bless her.
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Wow, I'm well impressed :2thumbsup;
Extra hugs for your wife
:cuddle;
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Wow, I'm well impressed :2thumbsup;
Extra hugs for your wife
:cuddle;
Yep, we did an in home fistula gram! :clap; :clap; :clap; :clap;
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Sorry if this was already brought up but wondering if perhaps your Neph needs to increase your Heparin. After we get a "flash" in each needle line, I flush the lines with saline just prior to giving my husband his Heparin in the venous...I make note of the time and then make sure I don't take any longer than 5 minutes to connect him to the cycler. Any longer and we've ran into clotting issues.
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Any more heparin and I seem to bleed too long when we come off. We believe these clots are a remnant of an issue a few days ago when I drew off too much fluid and got dehydrated. I chose to believe we have resolved the issue. (Head in sand icon !!)
But, yes that maybe an option.
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Other than (another) recent angioplasty, my husband's 2 yr old fistula and buttonholes have been working fine. Then yesterday...projectile vomit (which I'm still trying to clean up) and a sudden (very) 103 fever, so off to the ER we went! They are still waiting for all the lab cultures to come back but it was obvious today that his arterial buttonhole is infected. Other than the fever and puking, there was no hint of anything wrong with the buttonhole yesterday. But I will say this; I did notice that he tore off a little skin around it the other nite when performing the usual "scab removal" for treatment.
Altho he doesn't do that very often (tear skin), it always worries me. Today it looks awful, all puffed up and like a big blood blister at the entry site, except that it's probably an abscess. Vascular surgeon said they will cut out the infected part, so there goes that beautiful buttonhole but we can establish a new one later. Meanwhile, "sharps"! Glad he gets to keep his fistula tho. REAL glad for that! Meanwhile, he's sicker than a dog, is having a lot of pain in the upper right-side rib area, which could be from all the puking but why we don't yet know what is causing his pain. No one has talked about his EKG or chest Xrays yet. It only hurts when he moves which of course, is downright miserable when you're stuck in bed. They have him on pain meds and antibiotic IV drip. He has gone without dialysis for 2 days now but my guess is that they didn't want to risk sepsis spreading but they will dialyze him in the morning. I am exhausted but if I could, I wish I could take his pain away. I had to come home from the hospital early tonite because I did not want to break down in front of him like I've done before and especially not at the hospital. I had to be his voice and help answer all their questions and of course, since not too many even in the medical field know what buttonholes and home-hemo is, I had to explain all that. Hauled all his meds in with me so they can enter it all into their records for the docs and carried my own medical kit with all the stuff necessary to perform his dialysis, including fistula needles, just unfortunately did not get to use them. I don't know what is more exhausting; helping my husband or dealing with hospital staff. Some are great and very attentive to his needs, others you wonder if there's a real person behind those eyes. Some are good at actually tending to the patient, others are better at just scanning the plastic bracelet they put around his wrist. Good thing I saw my own doc the other day and that he started me back on antidepressants..just in time..And as I perform cleanup on "aisle 2" here at home (just use your imagination with that one) I still have the picture of the young military veteran who sat waiting in the ER with us yesterday. He sat with his head bobbing up and down, as if to be fighting sleep. There were several athletic bags and a backpack piled up next to him. They were his. Looked as if his whole life might be in those bags. Probably was. A while later, a military officer walked in and I overheard him tell the front desk that he was there for the vet who needed a "psych eval". I wanted to really break down at that point...a vet and a sick husband. Not a good nite. Bless them both.
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I don't remember mama saying there would be days quite like this...
Update: Husband's fistula had a blow out in the nite, he's now in ICU. Lost some blood but didn't need a transfusion. He now has the dreaded neck cath in him and awaiting dialysis. They don't know yet if his fistula can be saved, they've got it wrapped for now. First things first, I just want him to be able to have dialysis today. Feel very bad for him but I know I need to be positive and strong for him so taking another deep breath (at least I'm not hyperventilating) and here we go...
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I'm so sorry this is happening to you both. I hope D is going to go okay, but should do with the neck-cath.
Good thing you started the anti depressants, and remember to take care of yourself too.
Lots of love, and luck to you both, Cas
:cuddle;
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Sorry to hear about your husband, after 3 years on dialysis it's the one thing that scares me a burst fistula, if it's going to happen at least it happened in the hospital. I will include both of you in my prayers.
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Sorry to hear about your issues. Please tell your husband we are all praying for him.
Good Luck and please keep us posted.
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Thanks everyone for the well wishes. He couldn't sleep last nite and about 3am he felt a trickle of blood running down his arm and before he could reach the call button, "whoosh", blood poured out and all over the bed and down to the floor. He said they came fast tho and whisked him off to surgery. Yeah, I bet they did. Bet they freaked out. I know I did when the phone rang before the buttcrack of dawn. And hubby? Nah, he never freaks out, not even when he is. Calm and still as a rock, which is often a source of our arguments. I have just never understood how he can remain so calm over things. Heck, walls could be getting blown away by a tornado and he'd probably just sit there, real calm, using his "indoor" voice saying, "oh wow, guess we had better take cover". And I don't know why but the calmer he is, the madder I get. C'mon you guys, I am sure I am not the only one!
Anyways, they have his whole arm bandaged up now, looks part-mummy like just in-time for Halloween but the good news...did I actually just use the word "good"??... is that the vascular surgeon said despite the burst (I wince using that word "burst", makes me queasy), but his fistula actually still feels and sounds good (thrill and bruit) and that he will probably only need the neck cath for a couple days and can go back to using the fistula. Hubby is very relieved about that but I (silently) don't want to get my hopes up. They finally took him for dialysis (boy, was he ever looking puffy and they were letting him have all the fluids he wanted). I didn't get on him about it because despite fluid overload, he was also very dehydrated, I'm sure you guys know the feeling..sandpaper tongue, parched lips, etc. So off to dialysis he went but since they're using the neck cath, I could not go in with him, which is understandable and honestly, I am wore out and having terrible asthma attacks so came home. Wheezing and choking around sick people in a hospital is not a good idea and I only have so much of my rescue inhaler to use and need a refill. But...long day isn't quite over yet. On the way home I stopped for lunch and found out the hard way that I've been carrying some funny-money around on me. Grrreat! I mean, that's freakin' unbelievable!! Asthma attack nearly went into panic attack. I wanted to cry but I'm more angry than anything. In my past life I use to work verrry closely with a fraud department so this kind of thing really burns me up. I don't like criminals and I am sure they do not like me. Let's just say that I've got a very good record of putting rotten people away. So, looks like I will have to put my old hat back on and help the police backtrack to where this monopoly money came from. Hubby isn't going to like hearing about it so may not tell him, at least not for a while. Funny, just the other day he and I were talking about some of the old cases I worked and the type of people I helped put away. A part of me wants to forget about it, another part knows I can't. All I really want is for my husband to come home so we can get back to our routine of laughing and talking and watching tv together while we do his treatment. It's suppose to be "home" hemo, not "hospital" hemo!
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Aw you poor girl, home hemo days will be back before you know it
:grouphug; :grouphug;
Love, Cas
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Okay, so there are "blowouts" and there are "bursts". My husband had neither. What looked like a big blood blister on his buttonhole was actually infection swelling up. So it wasn't his fistula that burst but the infection, which then caused profuse bleeding from his arterial buttonhole. They had to cut out the necrosis (infection) and sew him back up. Not quite 48 hours later, the vascular surgeon removed his dressing and Yay!! Fistula looks good and is still alive! Surgeon said it will be good to use! Whew!!! Another day or two of using the neck cath and they will remove it and send him home. Well, not for home-hemo but he will at least get to come home and sleep in his own bed. Never thought I'd say this but I actually look forward to hearing his snoring again and fighting for the blanket. Funny how you can have the whole bed to yourself but after being married several years you wake up in nearly the exact same spot you fell asleep in. Even on nites when you have the bed to yourself. Anyways, because he is very anemic now he will have to go in-center for at least a couple of weeks til his Hemoglobin is back up. He was doing so much better today, no more fever, no more crazy talk and having conversations with himself, no more barf bags and he was up and able to take short walks, which he was very relieved to be able to do. Unfortunately, I doubt anyone covered up his backside before I got there today but I'm not going to tell him that. I want him to keep moving so he'll recover. If I tell him that people may have seen his arse, he may not want to take walks down the hallway again. He's still on IV antibiotic drip but only every so many hours. About the only signs of anything having gone wrong is that we noticed that his wedding band was on the wrong finger. Heck, it was on the wrong hand! Don't know the story behind that, I'm guessing they may have removed it during his fistula surgery. Whatever the story, I'm just glad he is "back" and coherent again and able to change his underwear on his own. He hasn't touched a razor for a few days but I'm not getting on him about it. Especially while he has that neck cath still in. So he's got kind of a good beard going right now, guess I can call him "my old man" now. Ooh, he'd hate that. Guess I'll just call him what I always do; Honey. Another day or two and he'll be a real pro with all those buttons on the hospital bed but all good things must come to an end. And when the time comes and he's released, I'm sure he'll agree and turn to me and say, "Where's the car keys?"
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Any more heparin and I seem to bleed too long when we come off. We believe these clots are a remnant of an issue a few days ago when I drew off too much fluid and got dehydrated. I chose to believe we have resolved the issue. (Head in sand icon !!)
But, yes that maybe an option.
Now what were you saying about fistulas and angioplasties?? Heck, we will all get use to it. Like they say, it gets easier...yeah right! But seriously, I'd rather deal with taking my husband for angioplasties. Hang in there, Vt Big Rig! No matter how many are needed, keep yer fistula alive with those angioplasties!
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Great to hear he seems to have turned the corner. Very happy for you both.
Yes with all the problems I have had with my fistula ( and now they have decided right arm with not continue to work and have installed one in left arm higher up) none of them have approached your hubby's issues.
Best of luck and take care of yourself also. He will need you.
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Anyways, because he is very anemic now he will have to go in-center for at least a couple of weeks til his Hemoglobin is back up.
I was sentenced to about a month in stir (center) when my HGB dropped to 6.2 after a surgery. The didn't spring me until I hit 8.5 - and I went through a LOT of epo to get there.
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Twice now I have heard they sentence folks to in center because of low hemoglobin. Why is that?
Do they do anything different. You can take blood samples and give EPO at home. I am just wondering .......
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Well heck...his hemoglobin is still too low. He's at a 6 and they've already given him all the EPO they safely can. They are giving him a blood transfusion, 2
liters. units (about 2 pints). Poor guy, he's really feeling punished.
Sorry, meant to say he was given 2 units NOT liters. It bled so profusely because it opened the buttonhole to his artery. Nurses said they could actually hear his blood hitting the floor when he yelled for help. He said they actually freaked out and yelled "Oh my god!". Geez....glad I wasn't there when it happened. They would have heard more than OMG coming out of ME.
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Twice now I have heard they sentence folks to in center because of low hemoglobin. Why is that?
The concern is that a home user is at a theoretically greater risk of a mistake that will cause losing a setup of blood and further depressing the HGB.
When I bottomed out around 6, I had to repeatedly refuse transfusions. One resident was a bit pushy and the head of hemo stepped in on my behalf,.
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Twice now I have heard they sentence folks to in center because of low hemoglobin. Why is that?
The concern is that a home user is at a theoretically greater risk of a mistake that will cause losing a setup of blood and further depressing the HGB.
When I bottomed out around 6, I had to repeatedly refuse transfusions. One resident was a bit pushy and the head of hemo stepped in on my behalf,.
If it's not too personal, may I ask why you refused transfusions? I've read that some have bad reactions to them, for some it's too risky and others have religious reasons.
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If it's not too personal, may I ask why you refused transfusions? I've read that some have bad reactions to them, for some it's too risky and others have religious reasons.
Alloimmunization can increase the PRA score and make it harder to find a matching kidney. This is an issue every kidney transplant candidate should understand. The transplant team certainly will, however, I've run into MDs whose reaction was "that's news to me" when I explained the reason.
I did have one unit of my own on deposit with the blood bank and used that.
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What an adventure you all have had! I am so glad he turned the corner quickly and things are slowly getting back to normal.
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They removed the neck cath and I brought him home. He had a good dinner and is now sleeping like a baby. Has to do in-center for about a month until his hemoglobin level is back up. They also have to give him 3 more antibiotic treatments with his dialysis. I need to call NxStage to see if I'm suppose to do anything in the way of maintenance on the cycler and pureflow machine. Feel like I should run it or at least rinse the drain line out while it sits a few weeks. And I also wonder about the inside of those pureflow connections and blue water line and if moisture is trapped in there and should be periodically flushed. I'm going to prime a new PAK when it's time. Perhaps I am just paranoid but I'd rather know about these things before hooking my husband back up. Just like a car, I don't think it's good to just let it sit. And I'm not necessarily talking about my husband.
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Fantastic to hear to hear he's back home. When I don't use the pureflow for a while, I usually try to remember to put the drainline in bleach-flush-soak. The PAK will expire anyway (I think that happens 'automatically' or something)
Enjoy hubby being home honey
Love, Cas
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Wow. Quite a story to read all at once, I'm so glad he's home and feeling better. I'm very impressed with the way you handled everything. I hope one day when I'm faced with such a crisis I can do as well as you.
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If it's not too personal, may I ask why you refused transfusions? I've read that some have bad reactions to them, for some it's too risky and others have religious reasons.
Alloimmunization can increase the PRA score and make it harder to find a matching kidney. This is an issue every kidney transplant candidate should understand. The transplant team certainly will, however, I've run into MDs whose reaction was "that's news to me" when I explained the reason.
I did have one unit of my own on deposit with the blood bank and used that.
Thanks for answering that, Simon Dog. I try to learn and absorb all I can. People like you are why this site is what it is; HELPFUL!