I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Joanniebop on April 13, 2007, 07:50:18 PM
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As some of you know, since I introduced myself and hubby recently, we are new to PD. Just finished up the classes today and I have the Fresenius machine by the bedside and ready to go.
The problem is that Chuck is way, way puffier ( retaining fluid thru-out his body ) now than before we started the PD on Tuesday. The time on PD in the hospital he had no swelling, now he can just about walk. He just had a fall in the bathroom and it took about 45 minutes to get him up and into bed. He had no strength in his legs. Don't know if it's because of the swelling or something else. Now I know if I call the PD nurse, she will say that it's because of the pretzels that he was eating during class. We kind of made a joke about the fact that he was eating salted pretzels while on PD. I don't know but I fell like it has something to do with the PD that has caused him to retain so much fluid. He did take off what was put in him.
I really don't know what to think. Could it really be the pretzels? She told us we could skip Sat. night PD and start on Sun. night. Hoping he'll do better off the PD.
Thanks for your help.
Joannie
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If it was my hubby, I would call the PD Nurse. Keeping your hubby in my prayers.
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Thanks Kathleen. I will surely have to call tomorrow if he doesn't look any better.
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Your welcome Joanniebop. Let us know how things are going.
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a few pretzels, even ones with salt are not going to cause that kind of fluid retention.
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This happened to me when i first started Joannie, that is how we found out i am a high transporter, i cannot have the fluid dwelling in my longer than a certain period of time (1 1/2 hour) or my body starts re-absorbing it. Do you have any manual bags? If you do, you may have to manually remove that extra fluid off of him until you talk to your nurse. Not familiar with the Fresenius machine so i dont know how to bypass after a certain length of time. I advise you to call your PD nurse NOW, too much fluid on him is very dangerous, they do have an exchange right? His life is way to important to worry about disturbing anyone, you call them girlfriend, and you make sure they do something for you... If i fall or even sit on the ground, i have no strength in my legs to get back up, i need a chair to help me get up from wherever i am, cant even get out of chairs without my arms pushing me up, it is frustrating, but what can i do? Good Luck to you, please keep us posted and you call your PD nurse A.S.A.P. You and hubby will be in my thoughts and prayers.. Goofynina
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I don't have any experience with this but I just want to send my prayers for your husband for a quick resolution to the fluid retention problem. Goodynina knows her stuff, call now!
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hope you get it figured out soon, good luck
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Thanks so much for all of your quick and helpful replies.
I did call the PD nurse and she wants to put him on a stronger solution, so rather than a 1hour drive to the place where we had the training, Fresinius has a dialysis unit thats about 3 miles from my house. I called and asked for a 2.5 bag and told them that I would replace it and they agreed. I just walked in the house with the bag and realized that even though its a fresinius unit, they gave me a baxter bag. The PD nurse was not there so I spoke to a hemo nurse that really didn't know much about PD. I am so disgusted. I will call the PD nurse back as soon as I calm down and see what she says.
I'll keep you posted and thanks again. I don't know if you know just how helpful you are and just typing out my frustrations is calming.
Joannie
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I'm sorry your having problems. Were you trained on the machine only? Normally when I get a fluid overload I use a manual exchange to get it off quickly. Too much salty food can zoom my weight up 3-10 pounds in no time, and it is really uncomfortable. I've pretty much had to nix all added sodium and processed foods from my diet. I only get what occurs naturally in foods.
Good luck.
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Chicken, I would have thought that a manual exchange would certainly help, except that I was not trained to do a manual.
I called the PD nurse back after I realized that I got the wrong solution and she said to absolutely make sure that he does not have any extra salt and to really limit his fluids and tonight I will do our first home treatment on the cycler..we upped the amount for 1200 to 1500..and from there we will see how he is doing tomorrow.
Luckily we had a visiting nurse come in today ( since he just got out of the hospital on Monday) and she wasn't too concerned and even his blood pressure had come down form this morning when I took it.
Thanks everyone and I'll let you know how we make out tomorrow.
Joannie
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Hi Joannie, I am glad things are calming down a bit but if you can request to have a couple of 4.25% bags, those are pretty strong and really help pull some of that extra extra water out, just to have on hand might be helpful to you in the future. Please keep us posted on how you and hubby are doing. :2thumbsup;
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Nina., great advice. My PD nurse did have me ask at the Fresinius unit if they had the 4.25 ( even though we now know that they only carry the Baxter and it wouldn't have helped anyhow) but I will definitely be more prepared. I am expecting my first delivery from Fresenius on Monday. I don't know exactly what the PD nurse ordered, but will check for the future.
Thanks for everything.
Joannie
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If you dont mind Joannie, when you get that delivery, can you just let us know what you receive that way i can tell you if there are other things you might need and the nurse didnt order, When i first started PD they left out a lot of little things that i needed. Glad to be of any help i possibly can girlfriend, we all are :2thumbsup; :grouphug;
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Nina, I will definitely let you know on Monday.
You are a sweetie!
Thank you..Joannie
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Hi Joannie,
I am glad everything seems to be getting under control. I am on the Fresenius Sleep Safe APD cycler. I am in Australia and I think my machine is different than those used in the States. It amazes me that they didn't train you to do a manual bag. It maybe worth asking to be trained for future need. We had a blackout a few weeks back and with no power I had to complete my treatment the next day using manual bags. I also do a manual exchange during the day which helps with fluid gain. Having the stronger bags as a back up is a must. Are you in charge of the ordering in the future or does your nurse do it? I have to do all my ordering myself which is better because I know what I use and need.
It is hard the first couple of weeks, but it will get better as both your husband and you get use to the whole treatment. Call the nurse as often as you need, even if you think it is a silly question.... thats what they get paid for. I think my unit wanted to change the numbers on me, I called so many times :P I even called the toll free number in the middle of the night!
Also read the manual for the machine back to front and know how to dim the lights, check the drain amounts and some of the alarms ect. If they didn't give you a manual, ask for one.
You will have it under control in no time. You are already doing a great job! :grouphug;
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Wattle, thanks for your great advice. I do think that I will be the one ordering the supplies. I am going to give Nina a run down of what I receive tomorrow.
Now if you will indulge me:
I used my own judgement and did not start the PD last night. I noticed that Chuck was urinating a large volume and his feet started to go down. By nighttime his feet were almost back to normal. I didn't think that the PD treatment was necessary. Did I do right? The PD nurse is going to call me today to see how our first home treatment went and I'm not sure how she is going to react when I tell her that I didn't put him on the PD. his blood presssure was down also as it is this morning.
I guess without beig able to draw blood everyday and check on toxens that might be built up the only way to judge is weight, blood pressure and maybe how he is feeling?
Thanks for all you input.
Joannie ( and Chachi) Chuck
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She's probably not going to be happy you didn't start. When you skip a treatment, they like it to be their idea. ;)
How is Chuck feeling? When I had to stop treatments due to the tear in my peritoneum, it took less than a day before I started vomiting, etc. again. I definitely wouldn't skip any more treatments based on if he's swelling or not though and I would request training on how to do manual bags ASAP.
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Just remember Joannie, PD is not only removing excess fluid, it is cleaning the toxins out of his blood, if he is urinating large volumes, that may not mean that the toxins are being removed. I would definetly do it tonight so he wont get all those horrible symptoms, vomiting, etc... Hope all is well, hang in there girlfriend, it WILL get better ;)
Goofy
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All set up and ready to go for tonite..our first treatment at home..it's exciting..am I nuts?
The first drain ,during training ,was the only one that alarmed so I think we'll head up to bed around 10:00PM .
Thanks again.
Joannie
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You go Girl... here's to a peaceful, alarmless night, happy sleeping ;) :wine;
oh, and one more thing, girlfriend, your part of the family, and we're ALL nuts ::) xoxoxxo
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Joannie,
A large majority of patients still urinate for many months (some years) after starting dialysis. Depending on the reason for your kidneys failing. Your kidneys are able to pass some fluid but they may not be filtering any toxins at all out of the blood stream.
Good luck tonight ! :cuddle;
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JoannieBop? How are things working out for you, i never receieved the list of things you got in your delievery so i am taking things are working out pretty smooooothly for the both of your, (at least i am hoping it is). Please let me know if there is anything you need to know. We are all here for you. :grouphug;
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Hi Goofynina,
Everything has been going pretty smoothly. As a matter of fact, last night was our first night without any alarms.We've had to make a few adjustments with the solution because Chuck is still retaining a lot of fluid and his pressure is sky high, but I am in contact with the PD nurse everyday. I tell her want his pre and post weights are and of course the BP, sittting and standing.
As far as the supplies , 34 boxes of 1.5...5 boxes of 2.5 ( I had another 9 boxes delivered yesterday) and 5 boxes of 4.25...gloves..masks..tape..the caps...bandages.. cleansing pads.. alcohol pads...cover for ...the incision ...gauze... 3 or four boxes of drain tubing and 3 or 4 boxes of patient tubing.
They called today for my next delivery in 2 weeks..added a lot more of the 2.5...
I've been reading the post on this forum and it seems like everyone has some problems relating to their renal situations and I just don't want to be a bother, to you and others that are dealing with your own situations.
But, I DO absolutely appreciate your concern..It's such a good feeling to know that you and others on this forum know what we are going thru.
Just got a call from our primary Dr. and has finally called in a script for Lexapro for Chuck, because he has been experiencing super anxiety. Never really had it before, so, I'm gonna run to the store and get his meds. hopefully it will help.
thanks again.
Joannie
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Joannie, I am so glad it's going fairly smoothly so far for Chuck! As for the Lexapro,
I noticed a difference right away. Chuck may not, but it is mild, and easy to take,
so I will be crossing my fingers that it works! As for burdening us, that's what we're
here for, for you to unburden yourself! Go for it, girl! :grouphug;
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Thanks MyssAnne..I think just knowing that he got the meds is soothing for his anxiety.
Have a great evening!
Joannie
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It is NEVER a bother to any one of us to stop and answer a question in support of our family here on IHD.com. Think of us as your extended family.
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Thanks Kitkatz...
I needed that!
( the tears of chumminess are here again )
thanks
Joannie
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Hi Joannie, sorry for the late reply, i do have a question though, were you trained to use gloves? My PD nurse told me that gloves carry germs too and we had to use the Hand wash method at all times, they also give us hand sanitizer to keep by our machine at all times. Am i the only one they told that to? ( i wouldnt be surprised) :P Does he give himself Epo injections? i see they didnt send you any syringes. Is the patient tubing you mentioned more of an extension for the cassette to give him extra tubing to move further? Other than that, it all looks good, hope your still having alarmless nights and i hope Chuck is doing well with his new meds for his anxiety. Godspeed my friends :cuddle;
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I am sorry about the capital letters. My grandson spilled something on the keyboard and the caps key got stuck. I am sorry if I upset anyone. As you can see I have hooked up a new keyboard. It won't happen again.
I hope the young man got the medical care he needed and is doing well.My prayers are with you all. Maggi
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Hi and WELCOME Joannie!! I'm late to the thread, but was immediately transported back to when I first started PD as I read through it!! I can't believe they trained you guys on a cycler and didn't do any training on how to perform a manual!! I would definitely request manual training as a back up as soon as possible!! At one point I had gained 19lbs of fluid in a very short period that landed me in the E.R. with an elevated B/P, shortness of breath, and chest pain. I called my PD Nurse at the onset of symptoms and was instructed to go to the E.R. for labwork (It was a mess!! it was around midnight, I was connected and had to do an emergency disconnect, and I was terrified I was having a heart attack!) I had to follow up the next day at the center, and was instructed to do atleast one manual exchange (4.25) that day, two if I could squeeze them in, and resume the cycler as scheduled that night. I was trained to pay attention to how my b/p, weight, and UF "trended" as well as how I was feeling, and whether or not I appeared to be retaining fluid, especially in my lower extremities. Knowing what to do, when, will come with time-just be patient. But, as my PD Nurse says: some dialysis is better than no dialysis. The knowledge of how to perform a manual exchange and manual exchange supplies on hand when Chuck was experiencing difficulty would have been a great help to you both. I was trained on manual exchanges per protocol before I was ever introduced to the cycler, and sent home with manual supplies to practice with during training--sounds like somebody let you guys down. As someone else mentioned, there may be other times when manual exchanges are necessary as well, as in a black out, so it's important to get the training and have supplies on hand. I hope Chuck is doing better, and you guys are well! Keep in touch!
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Hi Melshell,
I asked the PD nurse the other day if and when I would be trained to do a manual exchange and she said to me " why would you want to learn?" Not TO GET HER PO'd , I mentioned the possibility of a black out and she said that most insurances won't pay for it ... duh what??? Anyhow things are going very smoothly and we have an appointment next week at the center with the Dr. so I'll will bring it up to the DR. AND INSIST THAT I be trained. Thanks for your input and I'll keep you posted.
Goofynina, I was trained to wash, and not use my own cloth towels when drying , use paper towels , gloves, mask. I even ordered a hand paper towels dispenser. They gave me syringes at the center and trained me to give him his shot. I think that we do have extra long tubing on the patient line, but so far he has been OK ..I keep a commode next to the bed , which is working out well.
Three nights in a row.. no alarms...woooohooooo!!!!
Have a great night!
Joannie
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Hi Joannie, sorry for the late reply, i do have a question though, were you trained to use gloves? My PD nurse told me that gloves carry germs too and we had to use the Hand wash method at all times, they also give us hand sanitizer to keep by our machine at all times. Am i the only one they told that to? ( i wouldnt be surprised) :P Does he give himself Epo injections? i see they didnt send you any syringes. Is the patient tubing you mentioned more of an extension for the cassette to give him extra tubing to move further? Other than that, it all looks good, hope your still having alarmless nights and i hope Chuck is doing well with his new meds for his anxiety. Godspeed my friends :cuddle;
I was trained the same as Goofynina, without gloves. During each setup, manual and cycler, I wash my hands twice. Antibacterial soap first, lather lather lather rinse, dry with paper towel then use antiseptic hand rub. Such as Avagard or hexol. Active ingredient being Chlorhexidine Gluconate. I use the hand rub a few times during the connection and disconnection process.
I think this method is a lot easier than using gloves.
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Do I dare mention this to the PD nurse?
At the same time I request training for manual exchanges.
It certainly sounds a lot easier.
Does everyone change their dressing everyday.. I mean the whole routine, as I was taught..alchohol, iodine, anitibiotic cream and bandage?
Is this something that has to be done forever? I was also taught to wash hands, mask and gloves before changing the dressing/bandage.
How do you protect your cath area when showering/bathing?
Starting to feel more comfortable with the whole PD experience.
Thanks all.
Have A great night!
Joannie
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Joannie
When hubby takes a shower he uses Saran Wrap on his cath. It seems to work for him. We was never train to use gloves, his pd nurse told us that they have germs and its best to wash hands real well. Hubby does manual, 4 times a day. (CAPD) It would seem to me, that they would want to train you to do manual as you said, just encase of power outage or if there is ever a time your hubby needs to do a exchange during the day. I was like you, what do we do if we have a power outage, how will I heat the bags up. As you get more comfortable with the routine, pd will be second nature to you, or it is to me anyways. There will be new things that might throw you for a loop. Never be concern about calling the pd nurse, thats what they are there for. Sounds like to me, you are doing a great job!! :thumbup;
When you ask about dressing do you mean for his exit site? If so, my hubby doesn't have to put a dressing on his anymore. His exit site has healed. But, thats what works for him. He does keep the cath taped.
Kat
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I no longer dress my exit site. I havent for about the past 6 months. I just tape it to my skin and go about my business and thank goodness all has been ok. I had to, the tape was literally eating away at my skin. (ouch) i wash it everyday in the shower and let it air dry when i get out. But the one thing i DO NOT understand is why are you wearing gloves? By the time your done with the hand wash technique, your hands should be sterile, touching the gloves just contaminates them. I was told DO NOT use gloves. hmmmm, i just dont get it ???
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I think that because I am doing it for Chuck the extra sterile precaution. If he was able to do it himself then his own germs would not be as harmful as mine. Maybe?
Now I am a little confused.
Kathleen your husband wraps his cath in saran wrap and Goofynina you don't use any protection at all in the shower?
Maybe I am confusing the exit site and the cath?
And do I understand that you tape up the cath for personal comfort?
That's what I have been doing for Chuck, but he is getting sore also from the tape.
Sorry for all the questions but I really appreciate the input.
Thanks again.
Joannie
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I think that because I am doing it for Chuck the extra sterile precaution. If he was able to do it himself then his own germs would not be as harmful as mine. Maybe?
Now I am a little confused.
Kathleen your husband wraps his cath in saran wrap and Goofynina you don't use any protection at all in the shower?
Maybe I am confusing the exit site and the cath?
And do I understand that you tape up the cath for personal comfort?
That's what I have been doing for Chuck, but he is getting sore also from the tape.
Sorry for all the questions but I really appreciate the input.
Thanks again.
Joannie
Joannie
If you have questions always ask, someone around here usually can help. Hubby wraps his cath in saran wrap when he takes a shower, to help keep the water out. It works pretty well also. As for the exit site hubby doesn't put a dressing on it anymore. But, he always keeps cath. taped. So his exit site won't get pulled, and it has happen and made it a little sore. Hubby uses Nexcare paper tape for sensitive skin. There are times where his skin gets a little red and sore so he just try and tape the cath in a new spot.
As for the exit site in the shower hubby just try and not let it get too wet, but it does. He just let the exit site air dry, I don't think you're suppose to put dressing back on the exit site until it is dry.
Kat
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OK, it's almost funny how differently we are told to do things. :-\
I was told to wash my site in the shower every day with a sterile pad and soap and it was even fine to hold the hand held shower up to it to rinse. Then I place a large sterile gauze pad over it, under my towel, to dry it off. I dress it every day with Gentamycin and a small gauze pad taped with a even smaller amount of silk tape. Then I hold it in place with a Patient's Pride Belt.
I actually fold the belt over to remove my dressing and wear the folded belt in the shower to hold the tube in place, instead of taping it. Then I just hand wash and line dry the belt after my shower and put on a new clean & dry one.
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When I shower, I use about an 8 inch length of the upper leg of pantyhose to slide up my leg above my knee and snug the end of my cath. in. That takes the pressure of it hanging down and gets it out of the way to shower my waist area. I was told to use the antibacterial soap after I got out of the shower, then dry and slip it in my homemade waist belt. No tape involved in any way!
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I've revived this older thread because of a recent experience I had. I've been on Cycler PD almost 4 years now (I'm on Fresenius) and this is the first time this has happened to me. We live in Illinois and recently had a stretch of terrible weather, lots of rain and thunderstorms. One night we lost power just as I was starting my 2nd fill. The machine automatically went in to the power outage mode, shutting off the clamps that were allowing me to fill. Anyway, the power was off long enough that the machine used up all it's auxiliary battery backup and shut down completely. When that happened, I disconnected and went back to bed. Our power wasn't restored until the next morning but when I went to start my machine back up, it wouldn't run. I called Fresenius Support and was told the problem was the battery needed to recharge and that that could take as much as 12 hours before it would run properly again. Since I'd missed the entire night of dialysis, I decided to do several manual exchanges throughout the day and then do my regular treatment that night. Unfortunately when I went to check my supplies I found the tubing I had for manual exchanges was expired and I also didn't have quite enough 2L bags of dialysate to do all the exchanges. I was able to contact my dialysis unit who luckily had enough stock of both the tubing and dialysate on hand and was able to pick up extra. But it sure was a good lesson for me to learn. Because of where I live and how prone we are to power outages, my PD nurse recommended I always keep enough tubing and dialysate on hand to perform at least 2 days of CAPD in addition to all the other supplies I order. I just need to remember to check the expiration dates on these supplies in order to replenish them when necessary.
Oh, and one more thing to mention; my PD nurse trains all patients on manual exchanges first just to get them used to the process and then proceeds to showing them how to use the cycler. That way a patient is prepared to use whatever method is best for whatever situation might occur.
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That's how I ordered my supplies as well... I always ordered some manuals each month just in case of that exact problem (or other problems). :thumbup;
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Hi Everyone,
Been a long time since I posted but I am glad that Missis you revived this thread.
We still have not had the manual training and Chuck and I will be, hopefully, going on our first cruise since his PD in November.
Initially, I thought that Fesenius would deliver the machine and the supplies to the ship, as they did for our trip to Colorado, but I was informed that they do not allow patients to use the machine on ships and that we would have to do manuals.
Our PD nurse assured me that she would train us with manuals before the trip.
She explained to me that the reason we have not been trained , is because the medical center will not pay for both forms of treatment. It's either one or the other.
I want to practice a few times at home before we get on the cruise and are out of the country, in case something goes wrong.
I have read on this board that some people retain a lot of the fluid when doing manuals, so I would not want to have any problems.
Have a great day!
Joannie
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I'm surprised you did not have to learn manual before going on the cycler.
I had to in case of power outages, etc.
I haven't traveled for any long time with mine but like for overnight
just did manual.
If you are a fast transporter you will absorb fluid if you leave it in for a long
period of time. I would absorb if I left it in overnight. Did better doing exchanges
during the day and dry at night. Now do exc. at night and dry during day.
When I abosrbed I had swelling and gained weight.
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Hi Joannie,
I just totally confused by your PD nurse's statement. I'd be inclined to maybe try and talk to someone in charge of the billing, just to ask them about how you're supposed to handle power outages and other situations that might require manual exchanges. Obviously many of us here have mentioned that we have supplies on hand to cover either type of treatment so Medicare payment isn't a problem. You might also explain to them that you're only doing one type of treatment at a time! It isn't as if you're doing CAPD at the same time you're doing CCPD. Someone who isn't a dialysis patient just might not be understanding the problem and just needs a "user" to explain the system to them. Why is it that the person holding the cash is so far removed from the end product. They probably have no concept what what the situation is. :banghead;
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Missis, I did bring up the power outage thing with them quite some time ago and they just kind of gave me a puzzled look and said that has not happened to anyone before and that I shouldn't worry. I am on some kind of preferred list with the electric company and we are supposed to be one of the first to have power restored. I asked specifically, what if he is in the middle of a fill, or a drain or even a dwell..could be a long time for the power to be restored. It was almost like we'll cross that bridge when we get to it.
Anyhow, we should get the manual training done soon.
I'll keep you posted.
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Why would you not be allowed to use the cycler on board the ship?? Manuals take up so much time during the day, you miss a lot more of your vacation and plus your connecting and disconnecting four times as much, so you have that much more chance of infection. I don't get it!
Are you going on a dialysis cruise, or a regular one?
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I too am awfully confused about your PD nurse's statement. I am a PD Home Training RN and ALWAYS train patients on manuals first, then the cycler. As already said, you are not doing both at once, I don't understand the issue. I train manuals for back up in case of an emergency power outage. Plus I have found once patients are familiar with manuals they are not that frightened of switching to the cycler. The concepts are better understood and the confidence is there.
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When I was training for PD, I had no choice, you have to be trained on manuals before the cycler.
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I think that this medical center is working on some kind of grant and that was the reason why they were not allowed to train on manuals and the cycler. They were only permitted to use one method.
All I know is that we WILL get the manual training very soon, prior to our cruise.
As far as the cycler on the ship, Fresenius said that they will not send the machines to a cruise ship.
Someone on a cruise forum said that because of the sometimes unsteady seas, the machine would be alarming too often.
I don't know, maybe I should call Fresenius again and get an official explanation.
I'm kind of set now on the manual and have figured into our schedule, although I'd prefer the cycler.
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Well, I am jealous you going on a cruise! I hope you have tons of fun hun :)
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i'm taking a cruise someday....even if it's in the bath tub :rofl;
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Thanks Angela.
It took us many years of very hard work to be in the position to take a few vacations.
Unfortunately, Chuck is not in the best physical health, but we are not going to let that stop us.
Kind of ironic, because when Chuck was well, we didn't have the time or means to travel.
Life is too short.
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Your right... can't let lifes road bumps stop you from enjoying it. :)
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You gotta grab the disease by the tail and twirl it around a few times and enjoy the life you have left! Enjoy your cruise!
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You gotta grab the disease by the tail and twirl it around a few times and enjoy the life you have left! Enjoy your cruise!
Now there's the Kit we know and love!! And I couldn't agree more!
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Hi! Hubby and I are planning a cruise for sometime next year and I just assumed that I would be allowed to take my cycler along...are cycler's not permitted on all cruise lines? Is it the cruise line, or Freesnius? You also mentioned that they delivered the machine and supplies for your trip to Colorado...??? Did they fly it out to you? I've packed the cycler along on a few driving trips, and now that I've seen that it can be done, I'm ready to take a REAL vacation: fly somewhere, or take a cruise...I wonder how knowledgeable a travel agent would be considering the circumstances??
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Melshell..no cycler on board (the ship that is ) is a Fresenius rule. I checked with them twice, thus the need to learn manual. They will deliver the manual solution to the ship. We must bring our own pole.
They sent me the cycler and all the supplies that we needed on a land based vacation in Colorado. I had to keep the box in the room and pack it back up and make arrangements for the machine to go back to Fresenius before we left the hotel.
I don't think that most TA's would know . It is really up to you to research and of course place the order for your needs. I think that they want the order 30 days in advance of your travel date.
More than likely the ship will require a note from your Dr. saying that your Hubby is able to travel and they must have a list of the supplies that you expect to be delivered to the ship.
We go next Tuesday for the manual training and as soon as I get home, I am going to call Fresenius and place our order for the cruise.
Hope this helps and that you are able to cruise.
Joannie
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The saga continues..
Wanting manual training for our upcoming cruise.
So, went to the center today since Chuck had kinetic modeling done ( not sure of the correct spelling or wording but it's the testing that is done every four months to make sure that he is dialysing enough for the toxins to be taken from his body) so the nurse had to perform a manual drain at which time she went over the process. She gave me an organizer, a booklet of instructions a little scale thingy and said that we should make arrangements to come back a few days before the cruise for proper training.
In the meantime I ordered a few bags of solution for manual and might give it a try when we receive our next delivery. I am very anxious to try it at home.
QUESTION: for those of you that do manuals at home, do you use an IV pole and if so did you have to purchase it yourself?
I am thinking about buying a pole that attaches to his wheelchair this way when we are on the cruise I won't have to worry about borrowing an IV pole from the cruise line ( That is what I was told to do) or have to just hang it from a door.
Appreciate any advice.
Thanks
Joannie
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Hi Joanniebop, great seeing you here again :) When i started PD, they supplied an IV pole, have you asked if there is one you can borrow since you wont be needing it once you return? or maybe it will be better to invest in one that attaches to his wheelchair so that way if you ever want to go on a cruise again he will have it there for him. You can also maybe hang it on a hanger or something inside the cabin, maybe a coat hook if you cant get an IV pole :twocents;
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My clinic supplied two for me, since I was doing two treatments a day at work. That way I could simply keep one in the closet at work, too. On our first weekend trip, though, we discovered that packing a regular IV pole in the car was pretty difficult, so I went online and ordered a collapsible one. It's made from aluminum, so it's very lightweight and collapses down to about 24" tall, much easier to deal with! I would suggest that you go ahead and order one that attaches to the chair for several reasons: 1) you can put the brakes on the chair so it won't roll anywhere, in case you get rough seas (never been on a cruise myself, don't know if this is an issue or not) 2) from what I understand, cabins on cruise ships can be pretty tight quarters, and if you're already going to have the chair, then you probably don't want to take up any more of your limited floor space with even more medical stuff, specially since you'll have those boxes of solution, as well; 3) this way you'll have it and you won't have to bother borrowing one everytime you want to travel.
Hope this helps. When is your cruise, anyway?
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Thanks Goofynina and KT for your quick reply.
I think that the way to go is to purchase the pole for the wheelchair and maybe try and find a used IV pole to have at home. The PD center would not OK a pole from Fresenius so I'll try to find one on line.
KT, that's what I was thinking that the cabin won't be that big and with all the supplies, I don't need to take up any more room and also could not find a collapsible one that was easy to travel with.
The cruise is Nov.15th and we'll have to fly to Florida the day before. That will be an adventure in itself. Never did it alone before always had my daughters with us to help with Chuck. Luggage, Chuck in wheelchair, etc.
Anyhow, I have been reading this board pretty regularly, just not posting too much.
Thanks again,
Joannie
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Hi Joannie, sorry for the late reply, i do have a question though, were you trained to use gloves? My PD nurse told me that gloves carry germs too and we had to use the Hand wash method at all times, they also give us hand sanitizer to keep by our machine at all times. Am i the only one they told that to? ( i wouldnt be surprised) :P Does he give himself Epo injections? i see they didnt send you any syringes. Is the patient tubing you mentioned more of an extension for the cassette to give him extra tubing to move further? Other than that, it all looks good, hope your still having alarmless nights and i hope Chuck is doing well with his new meds for his anxiety. Godspeed my friends :cuddle;
I must have missed this thread but have just noticed your post goofynina. I use gloves beacause the spirit hand rub irritates the skin on my hands. You do the handwash with the gloves on, dry them off with paper towels and use alcohol spirt handrub in just the same way.
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Joannie
When hubby takes a shower he uses Saran Wrap on his cath. It seems to work for him. We was never train to use gloves, his pd nurse told us that they have germs and its best to wash hands real well. Hubby does manual, 4 times a day. (CAPD) It would seem to me, that they would want to train you to do manual as you said, just encase of power outage or if there is ever a time your hubby needs to do a exchange during the day. I was like you, what do we do if we have a power outage, how will I heat the bags up. As you get more comfortable with the routine, pd will be second nature to you, or it is to me anyways. There will be new things that might throw you for a loop. Never be concern about calling the pd nurse, thats what they are there for. Sounds like to me, you are doing a great job!! :thumbup;
When you ask about dressing do you mean for his exit site? If so, my hubby doesn't have to put a dressing on his anymore. His exit site has healed. But, thats what works for him. He does keep the cath taped.
Kat
I was told to only change the dressing on the exit site once every two days because the it's better for the exit site if it can 'rest' for a day. I take a shower with the dressing on but do not cover the catheter, after all it must be watertight if it doesn't leak during fills and drains. After showering I do an antiseptic handwash and remove the old dressing and holding tape. Bathe the exit site with Betadine using gauze topper swabs, wipe down till dry and dab the exit site with bactroban cream using a cotton bud stick. Secure the tubing to the skin using micropore tape about 3 inches down the tube from the exit. Fold one topper swab in half and place it centrally under the tubing so that it come to rest at the underside of the tube covering the exit. Place another topper swab over the whole exit sight and over the tube. Cover the whole dressing with a 5 inch strip of Mefix tape which comes on a 75mm roll. I finish by looping the catheter up and round slightly and taping it just before the tap onto my torso.