I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: big777bill on February 26, 2012, 06:51:53 AM
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I got the word from my neph that our NxStage training will begin on March 5, 2012. :bandance; I'll be able to put the days of in center behind me! No more waiting for a chair. No more staring at the clock wishing it would pick up it's pace. Hopefully no more feeling totally drained after treatment. Happy Days!! :yahoo; ;D :bandance; :pray; :clap;
EDITED: Moved to NX-stage Users area- kitkatz, Moderator
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Wow congratulations BB I hope all those wishes will come true for you.
love Cas
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:thx; I'm nervous about starting training but I know it will be a better modality for me in the long run.
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:thx; I'm nervous about starting training but I know it will be a better modality for me in the long run.
Congrats! My wife says it is like night and day between in center and home D.
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:cheer: Congrats!
You'll find many home hemo boosters here....
- rocker
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im so excited for you Bill! :yahoo; I really am. It's quite an amazing thing you'll be doing and im so happy to see ya *home* :flower; Wishing you both the best and hopful that you'll keep us updated. I dont want to put any downers on ya,(cause really, there isnt any) but just so it's no supprise (it was to me) there is a lot of stuff you'll not only be learning, but be responsible for. I wish i had known of the ordering, blood draws etc ... ahead, as i felt that they just kept 'springing' stuff on me and got my head wherling, where it didnt need to. It is sooooooooooo do-able and i even kinda like it now :o But a lot of stuff came as a real surprise to me. All the best,,, it's a GREAT little machine... WE're soooooooo verry happy with it :)
and :) Bless ya ;) and keep the faith :pray; it's all good :)
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:flower; :cuddle; :flower; :thx;
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Like BW said, it will be a little overwhelming at first and lets face it, it is a lot to learn. But if you are like us & committed, you will be just great. Stick with it and in the end, you will be so glad you did. It is well worth the effort.
The taking blood for labs, the testing of water & dialysate were the hardest things for me to organize. Trust me, you will get frustrated with it all cause it is so much. But once you start to see how it all works together for your good, you will be able to do it blindfolded. Just kidding, but seriously, it just becomes so routine!
You WILL see a big differents in IN-center & being at home. Heck, I get up in bed with my J and we really enjoy the time with each other. Im so relaxed now when hooking him up and very seldom do we ever get an alarm.
Just go threw all the 'EXHAUSTIONS" together and rely on your wife till you get the hang of it. I can almost guarantee, you will be so happy with this modality.
Best of luck to you Bill. I can't wait to hear of your experiences! :cheer: Go NxStage!! Another In-Center bites the dust! :guitar:
God Bless,
lmunchkin
:kickstart;
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Tomorrow is the big day! We'll wake up at 5:30 and leave for the training about 7:00. It's a 50 mile ride with VERY intense traffic from Deptford to Marlton. I hope Monday isn't quite as bad as usual, but it will be. Thursday I'll have to take a 1 day break from training to have surgery to move my fistula closer to the surface then back to training on Friday. The RN who does the course is nice and seems to be knowledgeable about NxStage. She will only train 1 couple at a time as opposed to some who do as many as 4 couples at a time. Well I'm rambling so wish me luck and a prayer will not be turned down. I'll post anything I find interesting. God Bless, Bill
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good luck both of you, and I'll ask my dad to pray for you. I'm sure it will all go smashingly good.
xxx love Cas
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Thank you so much Cassandra :cuddle; Tell your Dad thanks for the prayers. They are really appreciated.
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Bill, Im so curious about your first day! Bet your stomach is in knots right now, as well as your wifes! She is probably thinking, "what the heck did I get myself into!". I know I asked myself that!
We were trained by one nurse too. It is better that way, I think, because you establish a repore with him/her. They can't do several at a time, cause they are training you and giving you direction in your care! If the nurse had another, then he/she might not give the time needed to you and your wife, and might get anothers prescription mixed up with yours. Its not like school where they teach a group of students. This is a life altering event and they want your full attention, because life does depend on it!
I also believe, that is the reason for long waiting to do NxStage. Not enough nurses to train this machine, but I believe they are working on that, to better accommodate those who want home hemo.
Please Bill, post your experience. I so admire you & your wifes dedication to quality care! Im so glad "I" did not throw in the towel back when we started. Thanks to IHD family, we stuck with it and I am soooo thankful we did!
Best of luck & God Bless,
lmunchkin
:kickstart;
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Day 1 of training is in the books! Patty was extremely nervous all night and on the ride up there. I don't know why because she is a good nurse and takes to medically related things like a fish to water. The training RN told her she could tell it would be easy training us due to Patty's questions and interest in learning NxStage. That seemed to settle her nerves down. I slept. No kidding I couldn't keep my eyes open so the RN told me not to worry about things today and catch some shut eye. That was no problem. In a way that turned out good because it gave Patty and the RN alot of 1 on 1 time. Tomorrow I will do my best to stay awake and learn some of this and it is a lot to learn. Lately D puts me to sleep everytime. The last 5 times in center I slept almost the whole time. Then afterwards I'm still extremely tired. I haven't had the sick feeling or the restless nights like I did before starting D so it must be starting to do what it's supposed to do. I think NxStage is going to be very, very good to me. God Bless, Bill
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That's wonderful news! It's always a wonderful thing to hear about people who take the initiative and swallow their fear so that they can give themselves the best health possible! You are worth the investment, and for your wife, well, if YOU have better health and are happier when you feel better, then HER life is improved, too. NxStage is for the improvement of not only your life but also for hers.
Well done to you both!
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oh im so happy for ya both .... It's so nice that you sleep!!!! Thats the best part about being home for 'both' of you is that when you sleep, wifie (thats me too :) ) gets to take care of other stuff around the house, read, have some knit,crochet, what ever time and you are cozy with the clicker in your hand..lol oh yea, thats us.. if 'I' were the one on the machine, i'd be on computer, but each to his own and thats what ya get to look forward to :) Whos going to do your.... um, sticking??? and are you going to be using buttonholes? are they established... My mind is blank right now with excitment so i prob already know this stuff,,, Anyway, glad your started :2thumbsup;
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MM :cuddle; I'm so glad you mentioned how much better it will be for Patty. She works so hard to make sure I'm OK and worries herself to death over every little thing. She deserves a BIG break from things and I'm hoping this modality will do just that. Imunchkin that's why we have to travel so far because of a lack of training nurses. The only training RN in my county trains 3-6 couples at a time and the course takes up to 8 weeks :waiting;. So that's why we travel 50 miles one way for our training. Boswife I still am using a catheter for now. On Thursday I have to have a surgery to move my fistula closer to the surface. Once the fistula is ready we will establish button holes, that seems like the best way to go. I've been missing taking a long hot shower since Nov. 17, 2011. I don't know why I was so tired today but I couldn't keep my eyes open no matter how hard I tried. God Bless you all for your concern and interest
P.S. They told us we could come in later so we miss the early morning rush traffic. :yahoo;
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You & Patty sound just like J & I. We can't stand traffic and do whatever to avoid it. We schedule everything on Mondays and later morning times, just to avoid the traffic. I work, but my work is right next door, so if I had car trouble or weather is awful, I could always walk to work. Yes, I agree, I am very lucky in that regard!!!
As you get into this, I believe you will start to feel better because of more frequent D. I had forgot that your wife is a nurse too, and that helps tremendously. Can't wait till you start needling yourself. Lots of people here say it is best, cause they know where to stick and how it feels, whereas, another person would not know if it is in or not.
Cant wait till day 2. Awesome first day yall! My first day was "Dread". We went in 2nd day and I told them it was too much and I couldnt do it. The nurse (male) turned me on to this site! He said to go on and read some posts on NxStage. I did and 3rd day, I was like "lets do this". This site is so awesome. We found courage and strength from this family (IHD). Iam convinced, had we not found this place, our lives would be a totally different story.
Keep up the good work you two & let us know bout tomorrow!
God Bless,
lmunchkin
:kickstart;
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You and Patty sound just the right kind of people to be embarking on doing home dialysis, and you will get there. It is a bit daunting at first and I made loads of mistakes during training. I used to have to follow the instructions step by step and still mistakes. Now several months in, I could almost assemble the machine 'with my eyes closed' and wonder how I couldhave ever found it so confusing. So much for the comforts of familiarity with something.
You may like to go to homedialyzersunited.org which although recently has expanded to include all home dialysis is primarily comprised of NxStage users members. You will find lots of support from the people that belong to this. They also have a Listserv on Yahoo Groups called NxStage Users which you or Patty to join. NxStage Users or their care partners can join. The Yahoo Group is especially good for support and for getting answers to any questions that you may have, now or in the future
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Yay you!
Congratulations. :) We started training same day as you. We'll have to have a little IHD NxStage Graduation Party in a few weeks!
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Got 3 days under our belt now and all I can say this is intensive training. At first we were completely overwhelmed but by the third day it's easy to see the progress made so far. The worst part may be the traveling and time involved. By the time we get back home I'm wiped out. I have noticed that the daily dialysis itself is much easier on me. You don't get that totally washed out feeling that I noticed after in center.
Justjen321 let me know how it's going for you I'd be very interested to see how you all are doing. Imunchkin Patty almost did the same as you. She was ready to throw in the towel at first but on day 3 she was going at it like a pro. I think this will work out much the same as it did for you and your husband.
Tomorrow we have to go to have the surgery for the fistula transposition. Keep us in prayer. God Bless, Bill
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Congrats to you and Patty. :) If she's anything like me, she's feeling a little better about things today.
We are doing okay, although we ad an infiltration today, so we likely won't dialyze tomorrow. -Hopefully- back at it on Friday, although it will really depend on his arm. Too much movement whist still using sharps. :( So, word to the wise, when you start your buttonholes, be STILL! :) Once you get to blunts you can wiggle.
So, after your training tomorrow, I'll be racing to catch up to you and Patty!
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Bill its almost a carbon copy, huh? The only thing different, and Im glad too, is J already had a fistula established. That was alot easier on me. Whereas Patty is dealing with a perm cath (I think) which requires special techniques.
I guess you are having your fistula worked on today! Been thinking bout you and praying all goes well. Let us know how it went.
God Bless,
lmunchkin :kickstart;
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:clap; Ya know what i remember about training.... Going home, fixen dinner, and heading to a quiet place and reading my notes over and reading reading reading... I was soooooooooo WEARD about it all. It's amazing what 'fear' does to you :( also, what a good trainer does "FOR" you. I can say mine was very patient, but the methods were kinda screwie. I wonder if you guys are being trained for Pure Flow or Bags or both together. I disliked that fact that we went back and forth with that . It REALLY messed with me.. I wasnt told of the concept that we would be using PF, but because of how the 5 day training week goes, we would start with bags, then PF for 3 days, then the 5th day bags again... I thought that was the protocol not just their crazy way of training 'both' methods. Anyway..lol HOpe that didnt mess anyone up, I was just reliving 'MY' experience, and hoping (and it sounds like it is) yours is better.. :2thumbsup; i just wish i would have learned one then the other as i am a real 'by the book' repitition person and well, it wasnt happening that way..
Soooooo, congrats to all, sounds like ya are all doen great and on your successful way.
ps
You guys sound like this :flower; and i looked like this :stressed; lol.... :grouphug;
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I just got home from the fistula surgery. We got there 10am Thurs. and got home 4pm Fri. I didn't know until they were rolling me into the OR that I was staying the night. The incision goes from my elbow to about 2 inches short of my armpit and this sucker hurts! Now I hope that after 3 surgeries this thing works right. In the beginning they make it sound like it's so easy. Have a fistula put in and start dialysis. Then they say "oh you'll need 1 more surgery" and then they tell you again! :urcrazy; :stressed;. Next week we'll start training again on Mon. I pray this arm calms down some by then :pray; God Bless. Bill
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Big Bill, I'm glad that you were kep in, and I'm glad that you can validate my experience with this surgery that it hurtts. My vascular surgeon reluctantly kep me in overnight because of the pain, and then is firmly of the opinion that I have a low pain threshold even though he did concede that the surgery was down to the bone. Huh!!! Maybe he needs to experience it before making this statement?
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Amanda I think those surgeons need a dose of their own medicine sometimes. :Kit n Stik; How could something like this not hurt? I got your back on this! :cuddle;
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im glad thats over and im sure sorry that it's so painful.. How could someone think it wouldnt be and throw comments... :( Am praying and hope for fast healing. Hope you get to just rest this weekend and give it a good healing time. :grouphug;
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Awe guys, Im sorry about the pain. I may be the one who said there wasnt much pain, cause my husband said it never hurt. I think his VS went in 2more times to tie up some offshoots, but he never complained that he was in pain. But then again, he has a very high tolerance for pain.
So sorry bout that Bill & Amanda. I should had known that this may affect people differently. Plus, Bill, you were having yours raised and Amanda, to the bone, just makes me grench!!! Ew that is horrible!
I will try to be mindful in the future that not everyone is the same.
So Bill, you are going to have to wait till soreness is well till you can resume training? Im glad you came through the surgery ok.
God Bless,
lmunchkin :kickstart;
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Lmunchkin, it wasn't you. My surgeon was the one who was pretty disparaging that I would need to stay in overnight and then, after recent surgery to havemy PD catheter removed, following which, I had some escalating pain (caused, I think by a nerve being pinched between a haematoma and scar tissue), told me that I had a low pain threshold. For my vein transposition, I was like BigBill sliced down to the bone from the elbow to the armpit
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You mean they couldnt pull up anything from ur wrist to the elbow? That may be another reason why J had no problems, cause his is between wrist to elbow. He has a beautiful thick rope from wrist to elbow. Thank God, his fistula has worked great for 3 yrs now. Not to mention, "the Sweet Mama" :guitar: who sticks him all the time,does such a terrific job in needling!! :rofl; lol TeeeHee!!!!!
lmunchkin :kickstart;
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Whoops, just re-read my previous post. I realise that it suggests that BigBill sliced my arm :shy;
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Whoops, just re-read my previous post. I realise that it suggests that BigBill sliced my arm :shy;
Amanda, you are a "trip" as my Grand child would say! I had to laugh cause I reread and thought the same thing :rofl; :rofl; :waiting; :waiting;
lmunch :kickstart;
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Now Amanda do you really think I would cut your arm? :rofl; I haven't cut anyone for ages :boxing;
Now you do realize I'm jesting? :cuddle;
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Of course, you sound too nice to do anthing mean. :thumbup;
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They knocked out all the nerves to my arm when they did my fistula surgery, and I swear, it still hurt. My arm was dangling like it was dead for 8 hours. But now that it's working I'm glad I went through it. I'm just glad I didn't have to do it again.
I wish I could talk my wife into supporting me in going home dialysis. She's afraid it will pin her down, that she won't be able to travel, do things, etc. I think in time I'll be able to talk her into it. I ordered the Nextstage DVD to get some sales support. I'll be following your thread to see your progress. Good luck.
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Couldn't you talk her into at least doing the training with you?
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NxStage will do just the opposite. Yes, it's 5x per week minimum, but you can do these treatments at whatever time of day or night fits your schedule. It's also a portable machine if you want to travel. If you are trained to do your own sticking, then your wife doesn't have to be your only care partner. I do my own sticking and if my husband ever needed to be out of town or was unavailable for some reason, I can always call a friend to come and sit with me while I do my treatment. I bribe with wine, although I haven't had to do so yet. ;D
Also, I have found that NxStage treatments don't wash me out. I can do a treatment, spend the 20 minutes breaking down the machine and cleaning up and then I'm ready to go out and do whatever. Whereas with in center treatments, I went home and crashed for the next 8-10 hours.
They knocked out all the nerves to my arm when they did my fistula surgery, and I swear, it still hurt. My arm was dangling like it was dead for 8 hours. But now that it's working I'm glad I went through it. I'm just glad I didn't have to do it again.
I wish I could talk my wife into supporting me in going home dialysis. She's afraid it will pin her down, that she won't be able to travel, do things, etc. I think in time I'll be able to talk her into it. I ordered the Nextstage DVD to get some sales support. I'll be following your thread to see your progress. Good luck.
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Went back to classes after a 4 day hiatus. We were very rusty from the long weekend. I think it did us more harm than good but I had to get the fistula moved so what can you do? The instructor pushed Patty pretty hard today which had her nervous as a cat at first. After she settled down and concentrated on what she already knew things went great. The incision has calmed down and is mostly pain free now so that was a help. We've got the setup about 75% down now. It does seem to get easier everyday. We have to find out if we can use the Pure Flow with our well water. I hope we can because hanging and storing all those bags would be harder. Hoping by the end of this week we've got most of this memorized but we'll probably need 1 more week at least. This is much harder than I thought it would be but we'll get it. God Bless, Bill
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Aw bill...and wife ;) , it does get easier and easier and once the 'nerves' lessen, you'll see it's even easier :) I hope your healing well, and asking, praying for blessings on ya both,,, :cuddle;
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I agree with Boswife. It is very overwhelming, no doubt. But as you learn over time, it will all click. You and Patty will be able to do it blindfolded. If you go apply for a new job, and get hired, you don't know what you need to do the minute you start. No, you learn what you need to do! That is what this is, like a new job. Over time, you will perfect it and you will look back and wonder, "Why the heck you made it so hard!"
But Im not shedding on this very lightly cause it is very difficult to know and learn. Once you get home and do it without "boss" looking over your shoulder, you both will settle in and do very well.
In regards to well water, NxStage should have that covered too! You may have to change out your "Pak" more often, but I do not see why you cant do PureFlow. I have a friend who has well water and does use Pureflow on her husband too. You will love Pureflow once you get use to it. I agree, those pre-mixed bags can really get to be a hassel over time.
We have Saks that holds 60l and we can make a 3 day batch out of it. No lifting or tearing down of bags, and to me, that is great!!!!
Bill, you tell Patty how awesome she is for doing this for you. Tell her of your love for her and how much you respect & care for her. Make sure she is aware that you really need her help. She is your Angel and she needs to know that. She has alot on her, so it never hurts to be reminded of your love! I know you are going through alot, but always, be mindful you are not alone in this! We spouses need that assurance. It will make us stronger and remember what is important in our lives! I know sometimes we forget about the other when dealing with this roller coaster that stops only when it wants. We just have to "make" time to appreciate our significant other!
God Bless you & Patty,
lmunchkin :kickstart;
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Imunchkin :cuddle; thank you so much for the encouragement! It is getting easier as the days go by. You're absolutely right about "the boss" looking over our shoulders. She really rattles Patty. I tell her to try to relax but that's impossible. When there's no pressure and it's me and her she knows almost all the steps. She's trying too hard and I love her for it because it's only because she cares so much. I will definitely take your advice about telling her how much she means to me. It's easy to forget to tell someone who is with you all the time. I guess it goes unspoken and it shouldn't. God Bless, Bill
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Are you feeling any better since D with trainer on NxStage? I know the training nurses do it to get you guys trained and comfortable at home, thus, seemingly shorter dialysis. But once you get home and incorporate this in your lives (a the times you choose) it will be alot better and you can extend the time as you wish. I know J felt better after the 2nd day in training, but as I have said, he had a fistula established already. Im sure that is something you and Patty have some frustrations with, and perfectly understandable. But the Good Lord will see yall through this too! He is always near and I know you know that too!!!
Well I got to get my beauty sleep! Take care and let us know how its going!
God Bless,
lmunchkin :kickstart;
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Yes, thank you, I am feeling a ton better since starting daily hemo. We had a big delivery of supplies to start at home. We still have to bring a machine and pure flow home with us. That will probably be next week. So far we've had 7 days of training and it seems like a month. I'm taking over setting the machine up. Patty isn't very mechanical and she doesn't respond well to the instructors style of teaching. I know when we get home and it's just her and I she'll take right off with it. It can be overwhelming there are so many steps to remember. Actually I am amazed at how much better I feel. I haven't felt this good in over a year. The stamina is still low but feeling better will encourage me to do more. I hope to start a walking routine as soon we are all settled in with the home hemo. All in all things are going well I just can't wait for it all to be behind us. God Bless, Bill
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glad to hear of all that positiveness Bill. Keep going and love to Patty too.
love Cas
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Another week down! Learning about the different alarms and what needs to be done. Hopefully one more week and we'll switch locations to our house. I've got the machine setup down pretty good but still need some time before it comes to me more naturally. I have to take well water samples back on Monday to see if we can use the pure flow. I'm feeling good but very tired right now. It has been a long week. Talk to ya'll later, God Bless, Bill
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Hey Bill. Been out of the loop past couple days. Everything ok with you and Patty! You getting it little by little? I meant to ask you, are they training with the PureFlow? I hope so, cause otherwise it will be another section to learn (Not hard once you get use to it). Just don't want them to train with hanging bags.
Have they heard anything on your water test yet (AAMI)? I would be shocked if they said you cant use the PF unit. It would have to be God awful well water in my estimation.
I like your St. Pattys clover. A customer came into work the other day and gave me a bracelet that had the clover as charms. It was the sweetest thing and very unexpected. So Cute!
Keep us posted Bill. You can't let us down now! :) lol
God Bless,
lmunchkin :kickstart;
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I think I can see the light at the end of the tunnel! Next week we will be coming home with the NxStage and pureflow. This training is wearing me thin but it is getting easier. At first it is very intimidating. There are so many steps to remember. The good thing is you can use a cheat sheet if you're unsure of anything. God Bless, Bill
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I think I can see the light at the end of the tunnel! Next week we will be coming home with the NxStage and pureflow. This training is wearing me thin but it is getting easier. At first it is very intimidating. There are so many steps to remember. The good thing is you can use a cheat sheet if you're unsure of anything. God Bless, Bill
Ah Yes, those cheat sheets, I still refer to mine. They certainly help with your perameters. Just determine what you need to take off and it will help alot in your toggle numbers! Im so glad you guys are getting comfy with it. I always felt if you can get through the first week, you are doing great.
I have learned more about ESRD through NxStage. Not just the doing it, but why it is done that way. It all begins to come together. I feel more comfortable with it now and very comfortable solving any problems I have and, NxStage Tech support is Fantastic. But now days, I just figure out the problem, (which I dont have anymore) and resolve it.
One thing you and Patty need to know, is the machine is not going to let you make a Life threatening mistake. It will completely shut off. You may have blood in the tubes, but nothing will enter your body that would be fatal. It is an awesome little "jewel". We love it.
J & I went to PCB, Fla back in October for 2 weeks. We drove down in our van, and we had a ball. The machine, although a little heavy and awkward for me to lift, was fantasticly portable. We just put it on wheels and when we arrived at the place, help was there to help me get it in the trailer. We stayed in this gated community, that had two pools, a bay on one end and the ocean on the other. Had everything within that place. Golf carts were all over there. We would get up early and ride cart to bay and sit and watch people fish. We would take frequent strolls in that cart. Then I would go to the beach myself, cause J could not take his prosthetic for the sand.
We will go back sometime in the future. It was the most peaceful Vacation Ive ever known. I want him to enjoy every moment he has. He is an awesome man, and deserves it.
But you and Patty will love this modality. Once we stopped fighting it at every side, we settled in with it, and the approach to this machine changed us both. We wheel it out side on deck with long extenstion cord and D him outside with drain line going out to the grass or plants. If we couldnt do the things we do with it, we wouldnt be doing it. This is a modern marvel, that makes people who are dialysising be a little freer than the traditional D. It is wonderful, and has allowed us to take control of our loved ones care.
Darn it, Im rambling again. I am just so excited about this NxStage. I pray we never go back to In-center!
God Bless,
lmunchkin
:kickstart;
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I was toldby my nurse that I should be using my 'cheat' sheet, although I wouldn't suggest that you think of it as that. There is no reason why you need to remember it. In time you will be able to set it up without needing to refer to it. Remember, it isn't a test, it's all about safety. Make mistakes because you are trying to remember things rather than referring to the guide and that is when you will get alarms because you will have forgotten to do something. I've been doing NxStage since October and it's really only now that I am confident about dealing with the most common alarms, and don't get panic stricken when one goes off. You really don't want to have to trouble-shoot more than you need to when you just get going. In my experience, so far, the most common alarms are 11s, immediately followed by a 12, and a 24 alarm. I used to have some trouble rectifying the 11/12 because when the 12 went off I would then press mute and stop, then treatment, which would start the 11 alarm all over again. In the early days, I just couldn't get my head around it. My set up wasn't great for half my training because the machine wasn't at a height that I could access it, and my husband had to do it for me, and I think that this accounts for why it took me some time to feel comfortable operating the buttons. Anyway, you will get there.
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Oh no, I meant the sheet that helps to "Setting the Ultrafiltration Rate'. Not the set up cheat sheet. I don't need that anymore either. It is a formula sheet that shows you what to set UFR at by what is taken off and how much time. Amanda, if you don't have this, PM me and I can send you a copy! Its just a helpful formual! You probably have it, but I do refer to it to determine the best UFR. It kind of balances out for ease! Its a sheet that nurses use while training patients to do NxStage. Everybody is so different, no two patients are a like, and they use this sheet as a guide for setting perimeters per the patient. It is a very useful tool and if anyone who is doing or training on NxStage does not have this formula, I will be glad to send copies. Just PM me.
Na, I really don't look at set up sheets cause I don't need to anymore! Sorry Bill, I was thinking the wrong "cheat Sheet". But whatever makes it work for you, go with it! Your doing great!!!!!
God Bless,
lmunchkin
:kickstart;
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No, I don 't have it. I tend do determine how much time I have and set the flow rate based on that, keeping it as low as possible, try to keep it below 400. I woul appreciate you sending me a copy.
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Things went smooth as silk today! Everything seemed to come to me and Patty naturally. I'm starting to feel comfortable enough to come home with it very soon. The instructor is concentrating on what to do for the most common alarms and the ones that are more critical. She has been sending different equipment home with us all week. I wish I had a whole extra room to dedicate to dialysis. Now I have to pray one of the boys decides it's time to fly the nest, lol. God Bless, Bill
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Bill, that is awesome. Have they found out about the well water test yet? Cute about one "flying the nest". This world is so dificult now, it is hard to move out on your own with uncertainty all around. Once they are gone, you will miss and worry continuously about them. But you just have to trust, they will make the right decisions! Amen?
Amanda, I would be glad to send you a copy. I will PM you.
God Bless,
lmunchkin
:kickstart;
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Up early today. Patty and I have to go to Philly to see my VS and have my fistula checked out. Then we backtrack into NJ to training. Going to be a long day! We took 1 sample of water up last week but she gave us the wrong container so we got it in the correct one and it went out to the lab on this past Tuesday. Imunchkin, 1 of our sons is 40 and the other 27. I may be wrong but I believe they've hung around long enough, lol. God Bless, Bill
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I'm curious about Nextstage. Do they let you go back on hemo for short periods if your caretaker has to leave town for awhile? And if you dialyize every night then how to your poke wounds ever heal? Can you take showers? To answer Amanda, my wife wouldn't need much training because she is a Nurse Supervisor with 15 years experience in an intensive care cardiac ward.
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My unit says that I can go in-unit if my husband is away. Not sure if that is the same for all units. I shower every day, make sure that I do it before I do dialysis ans then keep band-aids over the buttonholes until the next day when I remove them to take my next shower. They don't heal but are just little bumps with the tiny scab covering the hole in the middle. Remember, some of the members on here do NxStage on their own and manage perfectly well. I would not have any fears about doing it alone, now that I am comofrtable with what I am doing. My husband only plays a nominal role anyway. He is downstairs and we use a baby monitor.
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Go Bill GO!
:)
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Wow I'm really impressed Bill, and Patty. I had to read up for a bit, cos been busy. But wow, congrats.
love Cas
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Thank you Jen & Cas! I'll be glad to get home to do D. The in center was not for me. All I've been thinking about for the last 3 weeks is green, yellow and white connections, chicken foot, dialysate rate, BVP BFR, effluent pressure, filtration fraction, heperin, saline bolus, Blood Pressure, pureflow, cycler, Mr Peanut, fluid warmer, manual rinseback, vascular flow and so on. My brain has been on extreme overload but it will all be worth it. Cas, Hopefully you will be able to have access to NxStage in the UK soon.
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Chicken foot? What is that?
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hehe... chicken foot is the 3 toed green lines from the pure flow... and Bill,,,,,,,, ohhhhhhhhhhh the dreams i had while 'in training'. I lived breathed, slept, this stuff. I sometimes cant even believe that we are where we are with it now. It was HUGE to me. But it does happen and 'flow' so well once ya trust that it will. It's doing it over and over and seeing that all is good that finally settles your brain. I wish you peace and rest.. :cuddle;
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Oh, I do bags not Pureflow.
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That adds a lot of extra lifting, and waste, using the bags. Why don't they have you using the Pure-Flow? God Bless, Bill
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I must admit that I don't really know, although if I want to use one, I can do so. I just haven't been to bothered. I seem to be forever reading about problems with them, that I haven't been encouraged to switch.
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I'm curious about Nextstage. Do they let you go back on hemo for short periods if your caretaker has to leave town for awhile? And if you dialyize every night then how to your poke wounds ever heal? Can you take showers? To answer Amanda, my wife wouldn't need much training because she is a Nurse Supervisor with 15 years experience in an intensive care cardiac ward.
Yes they will D you in-center for awhile if your caregiver wants time away. Feb 2011, I slipped on ice, broke my lt ankle on both sides. I was not allowed to weight bear for a long while. My neph told me that he would have to go in-center till Ortho Doc released me. I was so upset, but what could I do. Looking back, Im glad she did that cause I was not capable of standing on left foot. Ive been afraid of Ice ever sense.
But yea, you can go in-center if anything comes up that warrants it. Check with your neph and make sure. I know they came through for me, when I was not capable!
hehe... chicken foot is the 3 toed green lines from the pure flow... and Bill,,,,,,,, ohhhhhhhhhhh the dreams i had while 'in training'. I lived breathed, slept, this stuff. I sometimes cant even believe that we are where we are with it now. It was HUGE to me. But it does happen and 'flow' so well once ya trust that it will. It's doing it over and over and seeing that all is good that finally settles your brain. I wish you peace and rest.. :cuddle;
Boswife, you know I can't believe its been almost 2yrs for us. It seems like yesterday.
Amanda, I put that formula sheet in the mail Friday. Let me know when you get it, okay?
Bill, its a shame they sent it in the wrong container. You could have had the results by now! Oh well, what ya gonna do! :Kit n Stik;
lmunchkin
:kickstart;
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imunch,,,,,,,,, i had to laugh and note this to you and since i dont know how to "quote" correctly, i'll just spereate it with quotes..lol
"My neph told me " <------ Whos neph...lol It made me laugh because i say "my" this or that all the time .. Guess we REALLY are a part of them huh..hehe..
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Boswife, I really feel like we do have this disease too, even though not the physical aspects, but all the other! This disease has been our lives, and we have been consumed with it! Sometimes, I get aggravated with it, but guess what! They do too! So yes, we are all in this ship together, my friend!
Im glad that Im not in their shoes, but am also blessed to share their experiences with them! All the ups and the downs! Im still here, Im not going anywhere without my man! If I could sit in that chair for him, I would, and you would too!!
lmunchin
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I was told in training it is strongly recommended to go in center about every 3 months to give your care partner a break. That way there is less burn out. We have only been doing this on our own for 3 weeks and I can see how burn out could become easy for both of us.
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That's why my care partner is in the background and I do everything for myself which is precisely the way that I want it.
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Wow Amanda, for some reason I never noticed how much kidney-history we got in common. I'm gonna try to do as much as poss myself too, so I can keep my care partner just 'part-time', and hubby for life.
love to all, Cas
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Cassandra, are you already doing NxStage training or getting ready to start?
Since I use bags my husband does sometimes set the machine up as far as snap and tap. When We had first completed the training (he does know how to do everything in case for some reason I can't) he did help me, which was good because it was a bit overwhelming, but gradually as my confidnce grew, I weaned myself from his help. It used to make me feel really sressed having to call for him when I was ready for anything to be done. Now there is a lot less stress. The only downside is that I have to do it around his work schedule and then my son's activities. Quite honestly, I would rather do it when I want to regardless of whether he is there or not. I have said a couple of times that I will do so, usually when we have had an arguement, but then because he trained with me, he feels responsible.
Strange isn't itthat grown people can choose to take the risks of jumping out of airoplanes and that is ok, but when someone wants to accept the risks of dialysing alone, that isn't? Yeah, yeah, I understand all the liability issues, but I would be more than happy to sign a waiver.
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I have started needling myself to create buttonholes, but in my neighbourhood are only 2 people using Nxstage. The government here is aiming for a huge increase of HH, and as I have informed the HH-coordinator that I am incredibly enthusiastic about HH, but only on Nxstage, I hope to hear positive news about starting to train soon. I hope I can get it all as well organised as you do. And yes I would love to dialyse when hubby is at work or something too. I have read that HH alone is okay-ed in some countries.
love Cas
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Well, I do want to say that Im not complaining. My J. can't do alot of things, so he has to rely on me! Its okay though. His sight is not the best and he has slight shaking in his hands. Then if he needs to go to bath room, he will ask me to get his prosthetic. Sometimes it fits and sometimes it doesnt.
But when he gets in the wheelchair, he will whip up a meal and have dinner ready when I get home. He really does try, Ill give him that.
I really don't mind so much, sometimes it can get to me, but most the time I DONT LET IT!
God Bless,
lmunchkin
:kickstart;
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Imunchkin, J is very lucky to have you and I know you feel the same about him. :guitar: :flower;
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Lmunchkin, I'll let you know when I get the chart. Your J has got great support from you.
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Yeah Imunchkin, your J is very luck to have you, but as my T would say, you are very lucky to have J too. And I just hope I can do the things I can do at the moment for as long as poss. The amount of times he saved me, and kept me above ground on this planet is just unbelievable. A huge THANK YOU to all caregivers, and carepartners.
love you all Cas
:cheer:
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I'm at the last couple of days of training at the clinic :bandance; The instructor told us we will be working at home by Thurs. She will come here for 3-4 days and then we're on our own. We did treatment today (like every Monday) using bags. They're not so bad but I like using the Pure-Flow better. Hanging 6 heavy bags is a drag. The Pure-Flow is a matter of connecting a line, very simple. Then the other thing with the bags is the warmer needs to be hooked up. It's not hard, just extra work. Forgot to turn the warmer up and after about 10 to 15 minutes I was shivering. :oops; Then I fell asleep. I was so tired today for some reason. Patty took the reins and all went well. :clap; The report on the water came back today. They have to wait for 2 more tests to come in tomorrow and if they're good we will get the final approval. :2thumbsup; God Bless, Bill
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All sounds very promising indeed. Good on you!!
love Cas
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Yeap, bags are a bundle, for sure Bill! Just don't forget the warmer, LOL!!!
God Bless,
lmunchkin :kickstart;
P.S. At least you will be at home. Have you read AdamW post tonight? You can read the "Dread" in his post. You can really get hooked on this home D!!!
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Today after D we loaded up the cycler and all related supplies and took them home. Got me a brand new big mans recliner to relax in during D. Thursday the training nurse will come to our house to make sure everything is honky dory. I'll tell you it was a rough 16 days but we made it through with flying colors. I hope it goes as easy at home. I won't have a drill sergeant looking over my shoulder saying "are you sure that's what you want to do?" Now starts my new dialysis at home life! God Bless, Bill
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Woooooot!
Happy Graduation Day!
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So happy for you guys and blessings for smooth goens from here. Hugs for both :)
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Great news Bill
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Today was my first day of hemo at our home! :yahoo; The training RN came over and babysat us. When all was said and done she was happy as a pig in slop. It was weird doing D at home. For some reason everything seemed to be out of place. I couldn't find things right away when needed and I'm the one who put them there in the first place, lol. After some months roll on by it should be second nature. At least I hope it will be. Now to get the supplies from NxStage and we're set for the next month. They gave us enough at the clinic to do one week. I hate dialysis! Since it's a fact of life from here on out and has to be done one way or another I'm glad to be doing NxStage at home. :flower; God Bless you all, Bill
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wow Bill, and Pat, I am so happy for you
lots of love Cas
:bandance;
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:clap; this morning while i was setting up the machine i was thinking.... "this is their first day at home " (that's you guys first day at home ;) ) I was smiling and thinking how neat. It sucks, yea, but so much better at home!! I think it's so nice that your nurse is going to hang for a couple times. I was horrified that mine came in, sat and watched me set up,stick, check the machine and off she went!!! :o And that was that!!! I didnt like that and am jealous when i hear of others 'better' in that area of training than mine/ours. Sometimes i think its cause she knew i was so scarred and it was like a mother pushing her chick out of its nest. mabie it just had to be done that way. lol Anyway, im so happy your home :)
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Awesome Bill & Patty! You guys are finally HOME!!!! Just settle in that "Recliner" hook up and enjoy each others company! You both should be very proud of yourselfs. This NxStage is a huge hill to climb, but you both climbed it with flying colors!! Now reap the rewards of your efforts!
Boswife, you may be on to something here. Our training nurse left early too. I think they want to leave us alone to see how we do by ourselfs. That first week at home alone, was as I remember, panick on my behalf. It was like I had a brain freeze, but as each day went by, it started clicking and now its like nothing.
I have learned since starting NxStage, as J is a wiggle wart sometimes, to use lots of tape (paper) in different areas. That way, when he is hooked, I can go and finish up chores. Im not nearly as nervous about it, because he is taped pretty good. Then when I finish chores, I get up in bed with him and watch TV, play cards (Im real good at poker). Then some nights, I just sit in a chair and watch a show.
It is so much better at home!!!!
God Bless,
lmunchkin
:kickstart;
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Doing NxStage is abit like learning to drive a car. You may get that little pice of paper that says you've passed your test, but you really learn after you have passed the test.
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Thank you all for the encouragement. Second day at home went even better than the first. I want to give all the credit to our instructor. She was hard when it was needed and let us make our own mistakes at the appropriate times. The proof is in the pudding. We learned about as quickly as could be expected and that was all due to getting great teaching. Many of the questions I asked her were from posts I had read on IHD. This site was a huge help in learning home hemo. God Bless, Home-Hemo Bill :2thumbsup;
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Yeap, those tainers are nice, but stern when needed! They want it done right, so they allow you to make a few mistakes, and Bill, "it is"at the right times! You are so right about that!
How are you feeling, Bill?
Congrats Home Hemo Bill and Patty!!!!
lmunchkin :kickstart;
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It's a proud time :) Im not a 'proud' type person but this is one thing im really proud of and happy to be a part of... the 'home hemo' family :grouphug;
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I feel a lot better than I did going in center. The thing that bothers me the most about this is having to hook up to a machine 5 out of every 7 days for the rest of my life. I gotta stop thinking about that part of it but it keeps haunting me. I know all the up side and the fact being I have to do this to live. I never expected anything like this and I don't want it. An old saying I use a lot is that you play the cards you're delt. Well I don't like this hand! Back to where I started this, I do feel better and that's a good thing. It will allow Patty and I to do more together than we had been able to for the last year. Not being in center we could even take a vacation after this becomes second nature. I like the idea of that. God Bless, Bill
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Bill, I am glad to gear that it is going well and I really ipunderstand the mixed feelings you are having, but yes, you will feel much better. I was told on Friday that my Hb is only 8 (for several reasons), but I don't feel like I used to, much more energy. As for vacation, we have just travelled down to Destin in Florida for my first vacation away with NxStage. Machine is all in place ready for me to set up tomorrow to do my first treatment away from home. I have just been in the sea for the first time in over 10 years, because i wasn't able to do so before because of the PD catheter - freedom indeed!
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Oh Amanda, girl, I wish we were there with you! We plan to go back to PCB again to stay at Venture Out! It was a great place for us. Access to anything we want! J. couldnt go to ocean with me, but I did get to enjoy it while down there last Oct.
So I take it you guys drove down. Destin is so beautiful. I had a Dentist that retired and he and his wife live in Destin. Beautiful Home on the beach!
I can't wait for another get away! You guys have fun and enjoy. You deserve it Amanda!!!!
God Bless,
lmunchkin
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I went to get my buttonholes started today but it wasn't ready to go yet. The Rn stuck me about 2-3 times and never got a flash. I had my head turned away so I'm not sure exactly what she did. lol It wasn't a total waste of a day though. I need iron so she was able to give me another dose of that. This was the 2nd dose of 5 doses needed. We were hoping the fistula would be ready so this catheter could come out. Now I'll have to deal with it for at least another month, probably longer. The NxStage at home is going well. The Dr says my numbers are good with the exception of my iron level. God Bless, Bill
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Great news Bill, (your numbers, not the fistula). Keep up the good work!
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Thank you Joe! :waving;
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I'm suitably impressed.
lots of love Cas