We’ve finally found and tested a new webinar platform, and we’ll be restarting our webinars in March–door prizes and all! (Stay tuned for an announcement & link).
For our first topic, we’re bringing back the ever-popular Dr. John Agar from Australia, for a sort of “open mic.” Keeping in mind that Dr. Agar cannot answer your personal medical questions, what sorts of things would you like to learn about? We’ll gather questions here, sift through them, and he’ll choose several to address during the session. Since he’ll need time to put some slides together, we’d like questions from y’all by Weds, March 4.
Let us know what you’d like to know about home dialysis!
When you say ““gather your questions here””, where do you mean? Will you have a thread set up for questions ,or just post on this thread? Or email them to or Beth?
[QUOTE=Dori Schatell;17274]Hi y’all,
We’ve finally found and tested a new webinar platform, and we’ll be restarting our webinars in March–door prizes and all! (Stay tuned for an announcement & link).
For our first topic, we’re bringing back the ever-popular Dr. John Agar from Australia, for a sort of “open mic.” Keeping in mind that Dr. Agar cannot answer your personal medical questions, what sorts of things would you like to learn about? We’ll gather questions here, sift through them, and he’ll choose several to address during the session. Since he’ll need time to put some slides together, we’d like questions from y’all by Weds, March 4.
Let us know what you’d like to know about home dialysis![/QUOTE]
Bob, you can post your questions right here on this thread. Please remember to keep the questions broad enough as to relate to the general audience and not so personal it won’t relate to anybody but yourself. There’s only going to be time for 5 or 6 questions, so be judicious in what you ask.
I guess you saw Jane post. That is what my question would be to Dr John. I think he was and is on the forefront of nocturnal. And as much as I like nocturnal I find real draw backs… I think you and Bill are doing nocturnal. Are you two having issues? And has Dr John found this true in an bigger group?
I understand that many people would like to have their questions answered. So, I will be totally ok if none of these are taken up!
I’d like to know the long term effects of low phosphorus. Many people on nocturnal have this problem. Some people do use phosphorus additives such as Veet but it is not available in India. I would like to know if this is something to worry about. I take Neutraphos but inspite of this, my phosphorus is always low.
I would like to know how much fluid can one safely drink when connected to the machine for 7-8 hours. My thinking is being connected to the machine is kind of like having kidney function. So, we should be able to drink all we want since that’s how it is when our kidneys work.
I’d like to know how we measure transport rates between the fluid compartments. I’ve read that body position effects hematocrits; that lying down in effect dilutes the blood lowering hematocrit readings by as much as 11%.
How can transport be increased? How do transport rates change treatment to treatment? How do we measure the transport rate between the cells and the space between the cells? And then the transport rate of waste on to the blood compartment?
Does exercise during treatment, or movement generally during treatment, change the transport rate?
Thanks, you guys, these are great questions! I think Dr. Agar will enjoy figuring out how to answer them in a way that will make it more clear how dialysis works. Keep 'em coming–if we can’t answer all of the questions in one session, we can always do another Q&A down the road.
I’d like to know does one feel significantly better with nocturnal txs as compared with SDD txs in terms of energy, appetite, bone health etc. or is the day to day wellness level about the same?
Why is it stated about SDD and nocturnal txs that there are no fluid restrictions. Whereas food restrictions relax, I don’t see where fluid restrictions are gone. One still can only take in a limited amount of fluid. Wouldn’t it be more accurate to say there is more fluid control since one can drink a little more freely at their final meal of the day if txs are scheduled directly following the meal?
There has been a question as to whether NxStage can provide a true nocturnal tx. since those who have done nocturnal on full size machines like FR, previously, say NxStage nocturnal is not as effective. Some patients have found that they got better results on NxStage nocturnally when they optimized their prescriptions. Since NxStage technology is new and “volume driven” some believe the problem has been just not getting enough volume and not having the appropriate flow fraction.
Similar to Bill’s question, are there ways to optimize nocturnal txs as far as adjusting the scrip or adjusting the tx in other respects?
I am reading, sweating, and developing a nervous twitch over this - these are some really good questions.
I will only have time for maybe 5 or 6 but I will do my best to cover as much as I can.
The idea is that I will select a few ‘topics’ from the Q’s coming in and do my best to answer each in about 7-8 minutes with a small number of illustrative slides (where appropriate) to get the point across.
There will be the chance for one supplementary follow-up Q on each topic.
I know that these restrictions may seem harsh and anti-debatory (is there such a word) but remember this is the 1st time we have tried this and if the format doesnt work well, we’ll just try another one.
Also, I want to give as many a chance - and not get hung up on one Q for too long. Open debate on the answers I give between you here might be a good idea after the session.
Dori will be a fierce moderator and may seem sometimes harsh if she cuts debate but it IS important to get through several issues if we can.
I would ask for patience from all as we all get used to the new platform and how best to use it.
Dori - I will d/w you once I am back from my two speaking engagements in Seoul and Lorne re the questions.
Something else I’m interested in seeing is better coordination of nocturnal info. Prof. Agar’s site is one such place that accomplishes this. But I would like to see even more coordination of info such as all the where, what, when and hows of the nocturnal tx with more concise explanations of how the tx is done. At present, it is difficult to locate this info. Wonder if anyone has plans to open it up, so the info is more assessable?
BTW, folks, today is the last day for webinar questions, so please post 'em here if you haven’t already![/QUOTE]
Oh yes, certainly Dori, but what I mean is even more specific info on aspects of the tx.- Issues like I’m looking at now such as access taping methods, locating NxStage programs that offer long extended txs, optimizing the tx etc. Finding this sort of info is like looking for a needle in a haystack. I believe more ppl would try home txs if the mystery was taken out of it. I see patients all over the net floundering although they may currently be in home txs as they go home half trained and months later are still trying to find out better ways of managing their txs. for safety and for best results.
Prolonging the access using buttonholes. Reasons for access problems and how to prevent or deal with. How to know you have the right vascular surgeon since many are not up on buttonholes.
Machine issues on nocturnal txs and how to protect oneself.
The questions were submitted to the good doctor and he was to select which ones to answer this weekend. Only time will tell whether he has chosen wisely. All attention is on Oz — will the Wizard show his face?