I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: MomInDialysis on April 01, 2011, 07:04:37 PM
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A question for those of you who home dialyze. Do you do the connections yourself or do you need assistance. My Mom has a graph in her upper arm, would she need a fistula to be able to do the home dialysis. These may sound like silly questions for those of you with experience by I am going blind searching this site for all the answers. There is SO MUCH information out here OMG I am overwhelmed.
Mom is getting worse each day. Always nauseated, weak, dehydrated after every treatment, electrolytes completely screwed up, and rapidly losing control of her fingers hands and feet. When we talk with her Nephs, they just say hmmmm, we will have to look into it. And then they leave... :stressed; I have been checking out the Nxstage sights and blogs and it looks like it might be a fix, I am just scared about having to stick her myself. I am a true coward. If it is something she could do herself my fears would be relieved. Does anyone have any insight or suggestions, other than "stronger glasses and stomach".
---- :shy; Sorry. I posted this to another post and in the wrong area. I appologise, but I did get 2 great responses. I will talk with my Mom ans see what she thinks...again, sorry I tagged in the wrong area :Kit n Stik;
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HI, MinD,
Before your mom can do NxStage at home she and a care partner will have to go through a few weeks of training. During that training, either she or or care partner will learn how to cannulate her access. My sister-in-law has an upper arm access and cannulates herself, but she has buttonholes in a fistula. Unfortunately, you cannot have buttonholes with a graft. :(
If your mother's nephs don't give you answers or aren't doing anything to help solve her problems, you should seriously think about changing doctors! :banghead;
Good luck with your journey of acquiring information. Knowledge is power!
Aleta
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Hi MinD, good to see that you started your own thread.
Have you had a chance to read some of the threads and posts by boswife (http://ihatedialysis.com/forum/index.php?action=profile;u=46575)? She had the same apprehensions about blood and cannulation as you, but over the course of many months of studying on the forum and in-center training, she overcame them and she and her husband are doing very well at home with NsStage. Please look up some of her threads, such as the one below (you can click on her name and view her profile and posts).
http://ihatedialysis.com/forum/index.php?topic=20316.msg340181#msg340181
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MID..my hubby has learned to self-cannulate with a graft in his forearm. I don't think it would be that much harder for him if it were in his upper arm. We do home-hemo with NxStage and like you, I was terrified of needles. But I learned to "stick him" during our training and for a while I did it for him. Then, he learned to do it himself which took a load of stress off of me. I still do the hook up to his lines for him but given time, I think he will learn to do this part himself also.
Is your mom willing/able to learn self-cannulation while she is doing in-center dialysis? If she learns from the techs there, maybe home dialysis is a quick step away. If she is not able to do it, then she will have to have a partner that can.
Bless you for being there and wanting to help your mom. :grouphug;
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(well thank ya Greg10 :) ) And YES!! life on home D with NxStage has become a great thing!! DH is getting treatment as i type :2thumbsup; I had humongous fears, phobias!! about needles etc, but stubbornness, and the will to do whats best for hubby pulled me through. i wont say it wasnt HUGE for me because it was, but oddly, the needle part came much easier to me than i thought it would, and the 'learning' part, which is what i thrive on normally, kicked my butt. ::) Not that it's hard, and dont let that scare you because it's laid out beautifuly, the 'trainers' are wonderful, and it's really quite simple once it clicks, but i have and over extreem desire to 'do right' that it clouds my thinking. NxStage or PD is really a wonderful thing if its right for your situation. It truly is for ours. It may just be what your mom needs to get back to herself. Best of luck in what ever you decide, and NO guilt!! Your obviously a wonderful caring daughter,just keep up the good work, and read read read :-)
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Thank you all so much. Today was a big step. After 5 years of dialysis, I actually got my 82 year old father to go into the dialysis center. He has just not been mentally capable to handle seeing what he had in his imagination. He was surprised to see what he saw "NOTHING FRIGHTENING". This is our first step to home dialysis. Mom and Dad still sleep in the same room and most of their quiet time together is in the evenings and late night due to their inconsistent sleep patterns. Now that he sees, there is nothing bloody, gory, or frightening to see while on dialysis, this may be my lead in to discussing Mom doing extended treatments at home on Nxgen systems.
I am printing out all of your comments and those listed on the other threads regarding nocturnal and home dialysis and let them read and discuss them. I know it would help. As for me sticking her,,,,canalizing her,,,,still scared, but I was scared about dialysis until we had to do it. I will overcome with Gods and your help. Thank you all, your words are light unto my feet. Please keep the candles burning.
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Running a NzStage takes the same amount of training and intelligence as learning to drive a car, so yes, you can manage this! Really, the mental hurdle to get past the "omigod-there's-blood" part is FAR worse than actually manipulating the needles. I spent the first few months I was on D nearly passing out whenever they pulled my needles to being able to cannulate myself for home dialysis. You do what you need to do when you are determined to do it.
Personally, I felt better almost immediately with NxStage - it's well worth the effort!
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Thanks jbeany. These are the encouragement we need.
I spoke to both Mom and Dad last night and we discussed the fears, apprehensions, and concerns, and will pose them to the representitive when we meet. Both Mom and Dad were open to it after we opened up with eachother and even Dad was willing to do what he can. Mom is certain she can cannulate (I hope I have that right this time) herself. She wants to try while doing dialysis at the center, so she is going to talk with her nurses to have them work with her. Things are looking up and looking hopeful. Thank you.
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One other question to those of you who use the NxStage System. When Mom went in and talked with a company 3 years ago, they scared her away because of the cleaning, disinfecting, and breakdown of the system that was required. Her mobility is limited and she is very concerned that they wont be able to do it. I know I will, but she really wants to be in dependant and be able to maintain most of it herself. Any insight to what is required with the newer systems?
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It seems pretty obvious to me that whoever they talked with about NxStage had probably never seen one in operation. The cleaning involves wiping it down with a disinfectant, takes all of 5 minutes at most. Every bit of the tubing that comes in contact with the blood is contained on a sterile cartridge that drops into the machine and after the treatment is over it is lifted out and thrown away. The Technicians at NxStage have really thought ahead and made it as easy as possible to use it, and it is absolutely nothing like the tubing nightmare you see in-center......
Tom
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Been doing Nxstage soon be a year now, and I got to tell you, I was doing all this sweating & worrying about doing it until someone on this site said to try it and if it dont work for you, you can always go back. After training and I say about a month at home it all started coming together. Try it! The NxStage nurses WILL NOT RELEASE YOU TO HOME , until you can do this!
Now this may sound nutty to some of the pro's on here, but I, "secretly" practiced sticking needles into a tomatoe or a strawberry. I found that strawberries resembled my husbands arm as far as toughness. You can do this MID! It will seem overwhelming at first and you might have 2nd thoughts (as I did), but if the nurse tells you, you are doing just fine, trust that you are doing fine. Hang with it and I can almost guareentee you, you will be advising people on this post to give it a try!
Keep us posted, Ok? Know that IHD is here for you!
Love my NxStage, (Yes I Do Love It)
lmunchkin
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Thanks for the encouragement. We spoke to the first center, Davita, about In Home Dialysis and the RN who sets up training was wonderful. Mom left dialysis with a little kick in her step. She was very uplifting and encouraging about the NxStage System and how easy it is to clean, use, & maintain, as well as how the techs and med assts are there 24/7 to assist. We have another appointment with a center that is a little closer to home on Friday. Looking forward to talking with them and getting set up to start the program. OH YEAH!,,,My fearful father has agreed to be her partner. Am I dreaming, is this still Planet Earth? I will still be trained as a partner, but the fact that Dad said he wanted to be trained as well nearly put us all on the floor. Keep your fingers crossed and keep those prayers a coming.
THANK YOU EVERYONE! I will keep you posted
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MomInDialysis, that is really terrific news!! I am so glad you and your family are going to try it. There is a lot to learn, and I can guarantee that there will be times when you all feel a bit overwhelmed, but that is to be expected when you are learning anything new. If you've learned to drive a car, you can learn NxStage. Just keep on working toward your goal. I am so very pleased for your mom. I bet your dad surprised even himself!
lmunchkin, practicing needling fruit is not as silly as you may think. I think our member Zach practiced on an orange. Boswife made an arm!! Maybe she will see this thread and come tell you about it. She's very clever and extremely dedicated!
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Our center told us to practice on tubing. Which I did, but then hubby ended up cannulating himself and I have never done it.
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Actually, have two trained partners is always a great idea. If your mom learns to cannulate herself as well, even better. I had two trained, although only one could stick me. I could do it myself, just slowly. But having people who can switch out if the other person needs to go somewhere, or is sick is much easier. (But you can always go back to the D center for a day or two if there aren't any other options.)
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I look forward to you posting in a few months about how easy home hemo is and your mother's improvements.
We trained in January and I had the same fears. My husband and I laugh at how easy NxStage is and have actually increased the treatment times to benefit his health.
We trained three people for home hemo.
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MomInDialysis, that is really terrific news!! I am so glad you and your family are going to try it. There is a lot to learn, and I can guarantee that there will be times when you all feel a bit overwhelmed, but that is to be expected when you are learning anything new. If you've learned to drive a car, you can learn NxStage. Just keep on working toward your goal. I am so very pleased for your mom. I bet your dad surprised even himself!
lmunchkin, practicing needling fruit is not as silly as you may think. I think our member Zach practiced on an orange. Boswife made an arm!! Maybe she will see this thread and come tell you about it. She's very clever and extremely dedicated!
I practiced needling on an orange and on a piece of plastic tubing that one of the nurses on the dialysis unit gave me.
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Thanks folks. We have signed up and waiting for machine to arrive at training center. Had to get Neph to OK it, his opinion is very hopeful for her. Hardest part is making the daily trip. Her center for training is about 30 miles away and I have a full time day job. Fortunately my manager is familiar with HHD, his sister-in-law lived with them on HHD before she passed. He was very surprised when I shared with him the ease of NxStage. He says he will work with me as much as possible and help us work it out (as far as missing work). I think God and the stars are on our side. Will keep my angels on IHD posted. Thanks for all your help.
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I am so relieved to hear that your manager is going to work with you on this. I know the training center is far away, but a relatively small investment of time now will result is a huge payoff for your mother. Travelling for training will not be forever. It makes me feel really good that there are still people out there like your manager who have some compassion. I look forward to hearing how things go for you and your mom.
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If it is any help to you, I am 76 and have learnt how to put the needles in and dialyse at home. I too felt like death warmed up before and now I feel good again.
Good luck and I know it's silly advice when you are so worried, but taking it a day at a time is helpful.
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A note to all of you who have been such great help. Mom and Dad and I started training last week. I went on Monday with both Mom and Dad and they decided, Dad would be the primary support and that I would only have to go once a week. Dad is doing wonderful and so is Mom. Dad says he feels like his brain is coming to life again, he has to think and remember and is needed again. What a blessing this will be for both of them. Mom is coming home with energy and Dad is coming home feeling like he is an important part of their lives again. I am keeping a good eye on everything and will be in close touch with the trainer, just in case they feel Dad is in over his head, but having been an engineer during his active life, I think it will be good. Both loving life right now and that is an answer to prayer.
I know I say this a lot, but please believe me when I say THANK YOU ALL FOR YOUR ASSISTANCE. You are all angels.
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Oh my goodness this is so wonderful.. And i gotta tell yu how what you said about your dads brain comming alive again.......... I said nearly those exact words!! lol It was tough for me to learn because of my phobias, and because i have OCD and it oddly interfiers with a normal style of learning. I have to make big deals out of things, pick um apart till i know insides and out, and search out all the 'what iff's' lol and i take it to the limits..(sorry, forgot this is NOT about me...hehe) Anyway, Im soooooooooooo proud of all of you, So very proud!
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:bandance; Tomorrow they deliver our Pureflow machine and supplies. We start at home on Monday. I say we, like I have a mouse in my pocket, but it is really Mom and Dad who start on Monday. The have been going faithfully everyday M-F for the past 5 weeks. All has gone great. Dad feels very secure with knowing what to do and Mom feels very safe having him set up, canulate, and break down. He has it down. Really proud of them both. I have not had the courage to try canulating Mom yet. I am sure I will get my chance. I go in again tomorrow after the supplies get delivered. I have been going in once a week just to make certain, I can fill in if Dad needs it. No way am I ready for full HHD if I were the only partner, but I know the steps are all laid out in the book and help is a phone call away. We have been very fortunate in having 2 great trainers. They certainly have more patience with my Mom and Dad than I do. They have been wonderful. I am sure, I will be out here looking for assistance again in the near future, but for now...we are A-OK.
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This is good, good, news, Debe!
I'm glad this has worked out for you. :2thumbsup;
Aleta
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Glad it is workng for your mom and dad!!
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so cool they're going home with confidence! I had about none but have since found it ;) Im so happy for ya all!!
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This is great news, MID. Once they settle to doing it at home, you can do some observing your father and mother in action. It gets even better, if you can believe that! Your Dad is gonna be able to do it "Blind Folded" after awhile, just kidding! But seriously it will become so routine it will be like nothing!
Now I have to be honest here, the part I disliked the most was all the testing that they require: Ammi, Endos & Colony counts, blood work and everything! That was far harder for me to learn than setting, cannulating & break down. That being said, I now don't mind all the testing required.
The reason I kept at it and did not give up, was because of my husband. Plain & Simple! He is WORTH the effort and time. Yes it takes commitment and I know he would do the same for me!
You have real great parents and you are quite SPECIAL kid yourself! You have stepped up to help and honor your parents! That is sooooo Awesome! Again, so happy to hear that things are going so well. It will get even Better for you and them. :cheer: :yahoo;
Thanks for letting us know how it has been going,
lmunchkin :flower;
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:yahoo; Well I did it today. I did the full setup, cannulating, and break down. Had a little problem with my Moms graph on the Venus Stick. Her graph is not the greatest, so I kind of slid the needle above it. Fixed it with help from the RN and it all went great from there on out. No bleeding during breakdown. :clap;
Then I got home and saw all of the supplies that had been delivered and we still have to receive the Center supplied product, saline, syringes, gauze, and on & on & on. OMG. I have a 1200 sq-ft house and that includes the overstuffed garage. I can't find my bed.... :waiting; 20 cases of dialysate (40 bags) R U kidding me... The challenge is the storage of all the product. I hope it all fits.
BTW Thanks IMunchkin. You are right, they are pretty great parents. They have made numerous sacrifices through out their lives for us kids. We don't consider this a sacrifice, we consider it a privilege to be financially capable as well as physically able to help them out. Keep those prayers and good vibes coming. I think we are going to need them.
More later.
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Are you doing pre-mixed (hanging bags) or PureFlow? There are a lot more boxes required for premixed than the other. PureFlow is an awesome thing when you get real use to it! Doesnt require too much space, and can go up to 3 days of dialysis with one bag!
We use the hanging bags for traveling. You are gonna love NxStage for getting away for awhile. I do wish the cycler was a little lighter and less cumbersome, but it is better than what they use to have, which is NOTHING! NxStage is a "kickbutt" little machine!
Guess you can tell I'm excited about this product, huh?
lmunchkin :flower;
P.S. When we first got our start up supplies, they sent 4 cases of gallon size Bleach. Talk about "Sanitize"! That stuff is wicked! I ended up putting it in bathtub of quest bathroom! Nobody uses it, and it gets it out of sight too!
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Fabulous! We had to get very creative with storing the supplies. We were on the bags for the first year and a half. The PureFlow is definitely better in terms of storage. That first delivery is a whopper. :stressed;
Best wishes for a long and successful run with NxStage. We were very happy with it and could have continued for a long. long time if a transplant hadn't interrupted our treatments! :2thumbsup;
:cuddle;
Aleta
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Yeap, and "Interuption" that you would take anytime! How is it going with him, Leta? Im so glad that things have been good for you two. You are good people and deserved such a blessing! Youv'e been there for him through thick and thin! Hey, you do what you got to do, right?
NxStage really is a good product! And Tech Support is OUTSTANDING! I have never called that they were not accomdating and resolved my issues. Seriously, they are the best at what they do!
Keep us posted, MIM. Let us hear how it is going!
lmunchkin :flower;
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So glad everything is going well!
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Lmunchkin - We are using the premixed bags for the first week only while they do the setup testing of the water and the pureflow dialysate, but hoping to go straight to pureflow from here on. We got all of the essentials stored in cabinets and labeled so we know where it is and where it goes(for replacement stock), but the mountain of dialysate bags was a bit overwhelming. It is all going good so far. Small quarters 3 large people trying to move around but we shall overcome.
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im so happy for how its all going for you.........except of course the space thing..lol kinda hogs up a bit of room huh.. I sure like hearing you speak of it all so calmly. It sounds like you all are taking it in stride. I was a fraidy cat so i must say, it's only been a few months that my heart has settled down and have become a true NxStage lover :yahoo; I wish you many happy healthy nxStage years and love hearing more... :grouphug;
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As time goes on and you get used to it, you and your Dad will be able to work those supplies down a bit. I really believe that you guys will find this the best dialysis. With me & my husband, it is just the being at home, that made the difference! Like Dorothy of Wizard of OZ, "there is no place like home". That rings true in all our lives!
I can tell by you post, you seem to be adjusting to the idea as Boswife said previously. You have got this thing "Licked" young lady and that is wonderful!!
And there is another thing that I have noticed about doing nxstage at home, hubby has not been to the hospital since he started a year ago. That says alot! Considering all the hospital visits he has had to make in the past, this is a real Blessing! We have been dialysising him longer and slower so he will get adequate removal and cleaning. If we have plans during his dialysis time, then we adjust to accommodate OUR NEEDS! This was NxStage reason for coming out with this Awesome machine. They pride themselves in Home Therapies and they hit the nail on the head with this product.
Is it perfect? Nope, but they go out of the way and you will discover this in your concerns for your mother's care!
Love your enthusiasm! Overcome you will. What a little Soldier your are for your parents!!!!!
lmunchkin :flower;
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:; Thanks "I". You are giving me way too much credit. I am not really doing anything. Dad has taken over and become the dialysis champion. He won't let me do anything. He has made an incredible turnaround, full 180*. 3 years ago, Mom couldn't show us her access catheter nor her graph when he was around. Now, we discuss the graph when ever we are in the room together. We are still in the process of having here checked to start a fistula, so she can be more involved in her own canulating. I am very excited about how much my dad has become involved, it get me out of the house and they are on their own feeling more independent.
Mom is still having a problem with her potassium running high, so the Dr. is changing her bath. I am not sure why this is happening, she is being really careful with what she eats in spite of what we have been told about how she wont have to worry as much about what she eats while on home dialysis. They do 2.5 hrs and it doesn't seem to be enough. I haven't had a chance to talk to the Dr. but I hope to soon. We will see what he says. One thing we have experienced is being put on hold for 15 minutes or longer when we call in for help while the machine is in an alarm that Dad can't figure out. He is afraid of clotting so he has to take mom off and then can not really figure out what the problem was because she is no longer on the machine. I don't know if we have a very good support group and they are very busy, or they just have a good canasta game going on. It does get frustrating though.
How long have you and your husband been doing home dialysis. It sounds like you have it down pretty good. Do you dialyze 5 straight or do you break it up. Mom and Dad have been trying to do 5 straight.
Anyways, thanks for the kudos, even though Dad deserves them not me. I appreciate the encouragement and help.
Thanks
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Well then, kudos to your dad!! :yahoo;
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5 days and only 2.5 hours?, no wonder her potassium is still high, if you can talk him into extending that to 3.5 hours and try a 3 on, 1 off, then 2 on and 1 off and I'll bet you will see an improvement......
Tom