Ok as some of you know I will be starting NxStage soon, and now that it is getting closer I am getting worried. REALLY WORRIED!
So I have a couple of questions.
If I am in a wheelchair, how am I going to weigh? and know how much I have gained?
Will I be able to put the Epogen in my lines? like they do in-center?
What happens if you have a problem with your fistula and have to have a chest cath put in, can you still hook yourself up at home with NxStage?
Do some people do just 5 days a week instead of 6?
I’m really worried about my fistula holding up. Especially since 6 months ago I scored 1200 on my transonic test but last week scored 780 retested next session scored 790 and finally tested again last friday and scored 800. But I did drop 400 points, But my KT/V and pressures arr great.
Wheelchair? I don’t know how that would be done at home.
Yes, you can inject EPO directly into the venous bloodline through a little medication port on the line (I don’t use NxStage, but I’m sure their lines must have a medication port). This is what I do. It’s so simple. Draw the Epo into the syringe. Once on, swab the medication port and inject.
Problem with fistula? Ok, I just talked to someone last week who was in the home dialysis unit for that exact same problem. He had to retrain using a catheter for a few days, that’s all (it’s not that complicated, but in our program, they like to really be sure before they send a patient home). Don’t worry, it’s just as easy to do hemo at home with a catheter. In fact, it’s easier and way more predictable, because you don’t have to worry about maintaining those two buttonholes, and you don’t have to worry about whether the dull needle will go in or not that day.
Fistula holding up… Well, there are no guarantees. Using buttonholes doesn’t necessarily make a failing fistula last longer, but it can’t hurt. Because you will probably be doing short daily treatments, it’s not like the slow speeds of nocturnal. You will still be pumping blood at about the same speed used in-centre, or else you have to run a longer treatment. With the slower blood pump speeds of nocturnal, you can sometimes make a failing fistula work longer just because you don’t need as good a flow.
I assume your provider will have to provide a way for you to weigh but I hadn’t considered before how to weigh at home when you use a wheelchair. I did a froogle search and was surprised at the cost of the scales designed for wheelchair use - many over $2,000 but the search did turn up this model for under $400: http://www.wisdomking.com/product16349.html
It does look like a home made contraption but I guess if it works that’s what matters.
Well I guess I will just have to guess my weight based on how much I drink. When Kaiser came to my house they did not mention weighing nor did I think of it. :oops:
I do not think it should come to having to guess – a scale is part of the home hemo equipment package that your provider should provide. A scale, along with a chair and blood pressure taking equipment are all things not directly involved in the treatment process but they are still necessary for a safe treatment.
However, if I did have to go by feel then I think I could make an informed guess by correlating my fluid removal needs to blood pressure/pulse readings. Epoman after your years of experience, are you able to “feel” how much weight you need to remove? One thing to keep in mind is that there is less pressure to get completely dry when you dialyze daily. The increased frequency per se lowers the average amount of extra fluid your heart has to deal with.
Hi Epo’…tonight’s the night for me, with iron & aranesp injections…I put 20ml saline in a syringe, add the iron solution & inject it thru the inward (arterial) line’s ‘medication button’ over a 10-15 minute period. Then I do the aranesp shot into the outward (venous) one. THis one ALWAYS gives an air alarm on the Fresenius, but a few pokes of the restart button soon clears it. You may well not get that prob. on the NxS…
I’ll be really interested to hear your tales from start to regular user on your new beastie! 8)
Good luck mate!
How do you weigh in-centre??? Are you able to stand up at all? Im sure you have mentioned before that you could stand :?
I wouldnt recommend guessing weight. My weight is often different to what I guess it might be.
I didnt think you could dialyse at home with a permacath but if you do, then it is so very important that you follow appropriate hygiene measures. I dont think that going on home dialysis puts your fistula at any more risk than in-centre. So hopefully you wont need lines put in.
We were not provided with scales or a chair, that was up to us to purchase, which I think is fair enough. We were provided with a BP machine, but I already had my own. It is essential that you have one.
Bear, do you remove the air from the aranesp syringe before injecting? It is a bit tricky as it is such a small amount, but I never get an air alarm when Im giving aranesp.
Most NxStage users as myself get EPO subcutaneously, not through lines…actually nothing is given through the lines…iron is given at the clinic unless you choose to take oral iron…
As for the scale the social worker from your clinic may help you get a discounted scale from organizations or even free…
Totally different philosophy here. Patients are seen as saving the hospital money by dialyzing in their own “bricks and mortar” rather than the hospital’s. So, they provide us with what we need to do it, including a medical scale, a hospital bed table (it may be used, but it works). The only thing I had to buy was a thermometer. We are responsible for whatever electricity and water the machine uses, though. There’s no need for a blood pressure machine, as the Fresenius already incorporates one. We’re on our own as far as a chair goes though. I mean at home, any comfortable chair will do, or bed for nocturnal.
Pierre
P.S. Based on my own home hemo experience, I think it would be impossible to do this safely without a good, accurate scale.
I take my epogen through my lines. I use a extension that has a port in it. I have to have the extensions so I can reach the lines with my left hand while I unscrew the other end with my right. Its the only I can manage at home and on the road by myself. Also I do administer my own iron. I take 1 ml and dilute it with 25 ml of saline solution.
Hey I also have a new place to get jerky and they have buffalo. I need your mailing address so I can send you some. E-mail me at tjolly2@houston.rr.com. If anyone else wants some feel free to e-mail me as well.
Im actually borrowing a hospital table that another patient didnt need any more. If Im ever finished with it, ill give it back to the unit for someone else to use. We are responsible for water and electricity bills too, however we are given money towards each power bill, and I think theres a once a year rebate for water.
At the center I just roll up on to the scale and I then we subtract what the chair weighs. i can stand but I do have broken hips so it’s only for like 30 seconds, but I guess that would be enough time to weigh myself.
30 seconds should be plenty of time to weigh yourself. Just make sure you get a really sturdy set of scales! Ive got the glass digital scales and if you dont step on them right in the middle they tip up. A few times I have come close to landing on the bathroom floor lol
I have seen people use a special scale the weigh your chair with you in it. You have to weigh your chair first the read just the tare(?) setting. Then just you wight will show up from then on. You could also use a cattle weight scale and just roll across it after seting the tare(?) setting. Good Luck.
