I was asked to share my adventure in training with NxStage for home dialysis in this forum. I hope it encourages others to consider home hemo. First Day of Training
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by Sally on 05-14-2010 at 12:46 AM (396 Views)
I don’t want to start this right out with training because so much led up to the decision to dialyze at home. I am sure there are people out there who are struggling with the same things I struggled with. I am lucky in that I knew for several years that I would eventually have to begin dialysis. As a teacher, the way I approach things is to learn everything I can about them and I approached dialysis the same way. I read everything I could get my hands on about kidney disease and dialysis. It didn’t really come close to preparing me for the reality, but I was better prepared than many who are thrown into dialysis without warning.

I had a graft put in my left forearm - my nephrologist at the time gave me no choice - he glanced at my arm and pronounced my veins too small for a fistula and that was that. Of course, when I began reading I realized that a fistula would be better, but it was too late. Anyway, I was able to travel to Greece in 2005 to a little vacation cottage my husband and I have in the little village where he was born. It was a bittersweet month because I knew that when I came home I would have to begin dialysis and that would be the end of seeing Greece again.

I came home and began dialysis immediately. I was surprised that it wasn’t as terrible as I had anticipated. Certainly not fun, but tolerable. When I had calmed done some I joined an online support group and really began to get the scoop on proper dialysis. I heard about fistulas and decided I would try to get one when my graft gave out. I heard about buttonholes and was shocked to learn that some people self-cannulated. I mean, why would anyone want to do that? (Don’t you just love that term - “self-cannulation,” “I self-cannulate.” It sounds like something you should do behind closed doors.) Anyway, dialysis went along with lots of cramps and steep blood pressure drops, but I was able to continue working.

After three years my graft gave out and the surgeon did a vein transposition in my left upper arm to create a fistula. In the meantime, I had a chest cath. The extreme blood pressure drops I was experiencing caused a section of my bowel to die and perforate and I had major surgery. Right after that I began having severe back pain. I had learned about in-center nocturnal and decided to try it. I transferred from a Fresenius clinic to DaVita. I loved nocturnal, I felt so much better and had more energy, but the pain was getting worse. It went on for months until at last they diagnosed osteomyelitis of my spine. The infection was either caused by my chest cath or by the bowel surgery. It was never determined which. I went through a year of hell getting over the infection. During that year the nocturnal unit was closed and I was transferred to another DaVita clinic. I have been dialyzing there ever since. I also insisted on dialyzing for five hours because I am a firm believer in “more is better.” I finally got my fistula and it is a beauty. So huge and strong that I knew I could self-cannulate easily and I wanted buttonholes. How empowering it was to be able to take over that part of my treatment!

I never considered home dialysis in any serious way because my husband has always been squeamish about medical problems and I thought bringing dialysis home would be intrusive and difficult for him to handle. I have always protected him from any worries he might have about illness. I even went through quintuple bypass surgery alone because I didn’t want to worry him! Anyway, I was wrong. I totally underestimated his ability to handle a medical crisis - during my year’s illness he was a rock. He took over everything - the washing, the cleaning, shopping, cooking, etc. I saw a side of him I never knew existed. So, we were talking about how much I wanted to go back to visit Greece and we talked about NxStage and the possibility that it will one day be supported in Europe. He asked why I didn’t go for it and I said it was because I didn’t think he would want to be involved with it. Well, he immediately urged me to try it and even promised to go for training with me!

I contacted DaVita in February and they told me I could start training in April, but there was a delay and the waiting was so hard. Once the decision was made I could hardly wait to begin. Finally, today I went in for my first training. My husband is in Greece and won’t be back for a few months, but a friend has agreed to help me in the meantime. I was excited, but apprehensive about today. I had read another blog somewhere that described the trainers in a fierce way. They sounded argumentative, arbitrary, and grumpy and I was worried about that. The trainers today were wonderful. The DaVita trainer is still being trained herself and another trainer, a nephrology nurse originally from South Africa, is helping her train me. They were terrific and went slowly so I didn’t feel overwhelmed. Tomorrow they will show my partner, Bert, and I how to set up the machine. I am looking forward to it.

Thanks so much for sharing this, Alaskagirl! I was fascinated to hear that your husband showed a new side of himself that you hadn’t seen before, and was willing to be supportive. I wonder how many others think their partners wouldn’t be willing to help (or might even be scared or put off by home treatments) and might step up and surprise folks, given the chance. Please keep us up to date on your progress!

End of the First Week

I guess people were wondering what has been going on - it was suggested that I post weekly instead of daily, so that’s what I’m planning to do. This first week (7 days) has been busy and somewhat overwhelming. There seems to be so many steps and so much to remember. However, I remember more every day without being prompted and I keep thinking that there are so many people using NxStage that it simply must get easier!

Nithya, the trainer from NxStage who was here to train my trainer, Andrea, left town on Wednesday. Naturally, we had all kinds of trouble on Thursday. First, there was a persistent alarm over air in the balance system. We couldn’t find the source and had to flush the lines and added lots of saline, but couldn’t find the problem even after talking the technical people at NxStage. Before we could fix the machine I jerked my arm and caused an infiltration! Ouch! We had to quit for the day and I left the center a whole kilo heavier than when I came in due to all the saline. I had a graduation party that night and I attended with a small cup of crushed ice for my only liquid.

Friday went smoothly. Despite having extra fluid on the treatment was only about 2 &3/4 hours long. I bought an oven mitt for “snap and tap” and it really does help when slapping the cartridge! I have ordered one for Andrea as a thank you gift when training is done - it says, “Practice safe salt. Use condiments.” Who knew there were funny oven mitts out there?

My partner, Bert, wasn’t at training on Friday. She volunteers at a local hospital on Fridays, so it was just Andrea and me. On Monday we will be using bags, so I get used to using them and learn how to make a new batch of dialysate. She thinks that Bert and I will solo Memorial Day week and I should be ready to come home the first week in June. I’m looking forward to it, but I am apprehensive at the same time. I guess it will all get easier, though.

I can’t say enough good things about my partner, Bert. I just met her in November and we really don’t know each other very well. I don’t think either of us realized the amount, or the complexity, of what was in store for us when she offered to be my partner until my husband gets home from Greece. This is turning out to be a huge commitment and I am so thankful she is sticking with it! Don’t get me wrong - it isn’t all work and drudgery - we are having lots of fun with it and keeping our senses of humor going. Andrea, the trainer, is a good teacher and manages to keep things going and doesn’t get grumpy when we make mistakes. I think this is all doable!

Hi Alaskagirl. Can you explain “snap and tap” for those of us who don’t know what that means? And what exactly does your clinic expect your care partner to do, vs. you? Our philosophy (which is matched by Dr. Agar in Australia) is that the person on dialysis should do ALL–or at least as much as possible–of the treatment, so the partner can be on hand, but with as few responsibilities as possible. What sorts of expectations were you given for who would do what–and why?

“Snap and tap” refers to the way we get air out of the dialysis lines. There are very tiny little bubbles that can form inside the lines, rather like the bubbles that form on a glass of water that is left to sit. The machine is programmed to shut down before air enters your body, so it is important to get as much air out as possible or the machine won’t work. When there is air, an alarm (like a smoke alarm sounds) and a flashing number is displayed, The number is linked to specific problems and there is a manual where we look up what the number means and the book tells us how to solve the problem. If we can’t figure it out we can get technical help by phone 24/7. Anyway, we “snap” the lines and tap them with our fingers to release the bubbles - hence “snap and tap.”

As to your second question, I think in every partnership there is a specific dynamic. Often, one partner is more dominant than the other, or one is more passive. I think that whatever works for them is what should be done. In my case, I have always shielded my husband from things I know are difficult or distasteful for him - this was a mistake on my part as it has turned out. I should have had more faith in his ability to cope. I prefer doing things for myself and, from the start, I have planned to do most of the work with home dialysis, however, on days when I am tired or not feeling up to snuff I fully intend to depend on him for support. I know that the literature on the subject says the patient should do the majority of the work, but the trainers I had seemed to make it more of a partnership. If one partner does everything what will happen on that inevitable day when he or she isn’t up to it or when a crisis happens and the care partner panics? I think you shouldn’t worry too much about who does what - both people need to know every job and then, the natural dynamic between them will help them make it work. My partner, for the time being, is a woman I actually only recently met. We “clicked” right away and work very well together - if I forget a step she reminds me and vice versa. But neither of us is the “boss.” How lucky is that?!

Alaskagirl, I appreciate you taking the time to share your training. It will help a lot of people. I have a husband like yours. I have ‘shielded’ him also from as much as possible surrounding the years I have gone through bladder cancer treatments and now dialysis. It works for us. I am the strong one and also very independent. I am grateful every single day that my husband completely takes care of the income and home repair/maintenance. Not having those responsibilities frees me in many ways and I don’t take it for granted.

I do my home dialysis 100% solo. 95% of the time there is someone around in case of emergency but there has been none so far. There is nothing that I can’t easily do. I do understand some couples have a different dynamic going on and that’s great if it works for them. It wouldn’t work for me. I love being completely independent with my dialysis. I think it’s important for people to realize that you don’t need someone else if it came down to that - unless a patient has other physical limitations.

I look forward to reading more from you!!

Great report and thank you for sharing. Others need to be encouraged to challenge their obstacles both mental and physical particularly when it comes to choosing a better therapy for dialysis. I realize home hemo isn’t for everyone but I also realize that in-center thrice weekly isn’t for ANYONE, when you consider the results!

Your story shows education, determination, motivation along with strong support are key ingredients and putting those together is really the challenge. Those of us who are on NxStage are the lucky ones and it’s a good thing for others to hear and be motivated to take control of their treatment regardless of the modality they choose.

Nythia is as knowledgeable as anyone I know and I’ve learned so much from what limited contact I’ve had with her. IMO, NxStage is very selective when it comes to hiring their Clinical Educators, most of them (especially the ones I’ve met), know their stuff.

Good Luck and I look forward to reading more. With each additional NxStage dialyzor, I think a cycler alarm goes off in heaven!

Almost Ready
No, that’s a lie. I am most definitely NOT almost ready. I am due to start dialysis at home next week and suddenly I don’t feel ready at all. Not to mention that the room is still not finished. In fact, my whole house is torn up because we are doing a major remodel of the kitchen and bathroom. My cupboards are all emptied out and pots, pans, dishes, and general clutter is piled all over. On top of all that mess they delivered my supplies from NxStage and there is hardly room to move around all the boxes. My house looks like one of those hoarder’s dens on TV. My son and daughter-in-law are supposed to come sometime this weekend to help me get the room where I will dialyze into some sort of usable order. I am beginning to feel overwhelmed by it all.

As I look around at all the boxes I am inevitably reminded that I have a serious, life-threatening illness and that all this will be a part of my life forever. Surely a daunting thought. Scary. Oh, I won’t feel like this tomorrow - I know I am doing the right thing for me, but even the most positive, optimistic person can have moments of doubt.

My trainer is planning to be here at the house on Thursday and Friday - just to make sure everything goes well, and she and someone from the clinic are going to put the equipment together for me. To make my week complete I have a job interview on Thursday! So, I shouldn’t have time for a pity party, but will get on with my life, which is the point of all this anyway.

I’m Feeling a Bit Better
I had a combination panic attack and pity party this weekend with NxStage time looming so very close, but I’m pretty much over it now. We have the dialysis room emptied out - I’m still trying to arrange a dialysis chair - I’m going to use my good recliner, but will cover it with a drop cloth - blood spatter isn’t in this year and the chair is covered in fabric! They are coming to my house tomorrow after dialysis in the morning to set up my machine and I will start my first batch with the Pure Flow.

I’m painting the room pale yellow with blue trim (ala French Provincial), much to my contractor, Robert’s dismay, Robert has very fixed ideas about how things should look and he wanted tan or beige for the room. Usually, he doesn’t give me a choice - he installs whatever he wants, but I bought the paint behind his back, so he has no choice this time. I want a bright, cheery room - not mud colored, although, perhaps, crimson would be more practical. I was cracking jokes about CSI and Luminol, but my son wasn’t amused, so I stopped. Even though Robert is quite demanding he has great taste and usually I like what he has chosen. He is a friend of my youngest son and does great work and isn’t charging nearly what it is worth, which is good, because I can’t afford much. He is a perfectionist though and more fussy than I would be - I’m just glad to be getting it done!

Anyway, with the room torn apart I no longer have a bed to sleep in. I spent a very restless night on the sofa and expect to sleep there for the next few weeks. There simply is no place to put things and I will have to wait until the renovations are finished to make room for silly things, like beds. In the meantime, my spouse of 37 years is vacationing in Greece! Actually, I am glad he isn’t here - he gets much more stressed out than I. I’m already worried about how he will handle the reality of day to day living with NxStage, without piling more on him. He’ll do fine, I’m sure, but it takes time for him to adapt.

The thing that has made me feel better, above all, is the YouTube video of the woman dialyzing out in the woods on a camping trip. As I watched in astonishment, she lay down on a tarp spread out in the woods and cannulated herself. You can hear the sound of the generator running the dialyzer. Her husband is busy filming and cracking wise, her adorable son is going, “EEEWWWwwwwwww!,” as she cannulates, and she just keeps on taking care of business! As I watch her far from sterile technique I hear the voice of my trainer, “Did you wash your hands?” Would I dialyze out in the woods? Probably not, but, then, I hate camping and I’ve already had osteomeyelitis, thank you very much! (Not to mention mosquito bites and chiggers) However, it is a great video and cheered me up and made me feel that this is all doable! She’s right, just as Old Borris was right - there is fun and life after dialysis!

This has been a rambling, disjointed entry, but that’s how I feel right now - rambling and disjointed. I will write with more scientific precision another time about the advantages of NxStage and home dialysis, but for now, this will have to do.

Hi Alaskagirl. Thanks so much for the “snap and tap” lesson–though I have to say I was picturing a maneuver from Legally Blond involving a UPS delivery man… :wink:

I can’t imagine taking on NxStage and a major home remodel at the same time! You’re a brave woman! It’s great that you have some help to get things back in order. You’ll feel better when things are orderly. Good for you for standing up for your own color choices. Colors are very personal. If you’re selling your home, you’d want to live with neutrals, but for now, it should reflect YOUR taste (not your contractor’s, however good his is). Feel free to post photos when it’s all done (or even now, if you like). We’d love to see them!

Friday is the Day

Well, the System One and the PureFlow are all set up. The room has been painted and my first home treatment is scheduled for 7:30 a.m. tomorrow! I made my first batch of dialysate today and my trainer will culture it tomorrow. We will be using bags until we get word that the culture comes back clean. When I was setting up to run the batch I found that one of the clamps that can’t be opened once they are closed was closed. I was afraid I would have to start all over, but my son happened to be here and he said he would fix it. I told him that once closed it couldn’t be opened again - he laughed and had it open in 2 seconds. He said, “Anything that can be closed can be opened again!” I don’t know what he did, but it worked!

Because my husband will be in Greece for at least two more months finding a partner has been difficult. I found Bert, a woman I didn’t even know until recently, and she offered to be my partner. It is a huge amount of work and a big time commitment and I am eternally grateful to her. Until my husband gets back I will run 5 days a week. Bert will cover 4 days and my son will be here 1 day a week.

I’m excited to be starting, but looking around at all the equipment is somewhat dismaying. It really brings it home how much my life will be changing. Until now dialysis has been compartmentalized - it has been mostly separate from my home life, but now, it is plunked right down in the middle of everything. I’m not sure I like it. Oh, I know, how much better it is for me healthwise, but it is a lot to take in!

On the other hand, I am rather proud of myself for taking it on at my age. I’m 66 and I know I can do this. Not only that - I had an interview today and was accepted for an externship where I will be beginning a new career (I hope). It would be so easy to just go incenter and be a passive patient and let whatever happens happen, but I can’t do that. I can’t just sit back and let life pass me by - I have to run out and meet it and take part in it as much as I can. I believe that home hemo will let me do that.

I Did It!

Well, my first dialysis at home is over. I made my first batch of dialysate yesterday, June 3rd. and this morning my training R.N., Andrea, and my partner, Bert, arrived at my house for the first session. Andrea took a culture of the dialysate. We will be using bagged dialysate until the culture comes back, since my well water has never been tested. The dialysis proceeded pretty much without incident, except my blood pressure stayed low all session. I haven’t taken any blood pressure medication since beginning NxStage and it looks as though I won’t be needing it anymore. I haven’t been feeling up to par lately and I am worried that it may be due to my blood pressure being so low. Well, we’ll have to wait and see. Anyway, the dialysis went well.

Bert will be coming back on Sunday for another session and we will skip Monday as she starts a new job and after eight hours there she will hardly feel like spending another 3 with me. We will dialyze then on Tues, Wed, Thurs, and Friday. I start my externship on Wednesday and Thursday. Oh, yes, I got the job. I am starting two days a week in an externship in medical coding. Exciting to be able to start a new career at age 66 - without NxStage I wouldn’t even consider it.

About an hour after she left my house Andrea called me and told me that blood cultures she took from me last week had tested positive for staph. I am to report to the clinic tomorrow morning for IV Vanco. That is scary for me because I spent most of last year fighting off osteomyelitis of the spine due to a MRSA infection. I cannot go through that again. I just couldn’t do it! Well, hopefully the Vanco will take care of it.

UPS men in their short pants - every time one comes in the center to pick or deliver a package I am reminded of that movie. I wait till they’re out the door to remind the staff to “bend and snap!” I’m sure they are tired of jokes about that movie!

Well, I’ve had my first treatment at home and it looks like this is going to work! I feel better already.