It seems like years now that Jessie has weighed 160 lbs (72.8kg) he’s never went over 165, never below 155 consistantely 160… Even now and between diakysis sessions he stays within 72.1, 72.3 , the highest ever 73.5.
At first ( DEC 2) he started out at a GOAL of 72.7 good … right… the GOAL has been steadily going down. Now it’s at 70.5 … that’s 154lbs … 6lbs below his normal weight. What do you think ?
Myself I think we are trying to stay within K/DOQI guidelines … hell if that’s the case we are right off the map seeing that his URR is 50% and his BP is a rubber ball !
I would not be surprised if his appetite decreased leading up to dialysis. Did he notice a decrease in his appetite? Has his appetite increased with dialysis? How/when does his bp bounce around?
I know I’m always asking questions. What are they saying about home?
[QUOTE=Bill Peckham;11842]I would not be surprised if his appetite decreased leading up to dialysis. Did he notice a decrease in his appetite? Has his appetite increased with dialysis? How/when does his bp bounce around?
I know I’m always asking questions. What are they saying about home?[/QUOTE]Morning Bill … Really do appreciate your reply 12;30 am… I am impressed and ThanK You.
Firstly yesterday I read one of your postings and at the bottom I noticed
HDP target 100 out of curiosity ( natural) I clicked on… bingo ! More much needed info. When I first start to read anything I look for names… bingo again!
These names are becoming very familiar… and to me they are all parts of the same puzzle … slowly but surely I’ve really been able to connect dot’s in a relatively short time. You know everything started with John Agar … that I can say without reservation.
Now about Jessie last night we had a problem with cannulation … four times no go . So we took the night off… that was alright with us ! Jessie has not started to do his own …that comes later. After reading the HDP article I do have some questions that need to be answered eg… dry weight… PO4 hell I’ve only been looking at urea !
His appetite,in my opinion, has become a real issue. His mom is trying her best and I’m threatening to start cooking and they are all threatening to leave if I do that ( so much for my cooking ) Ya it’s become a concern !
We are having a hell of a time getting his bp under control . Top and bottom
just yesterday he went down to 114/76 p61 (noon) last night 172/105 p 71.
He’s on a wack of med’s and that I DO NOT like at all… when I know damm well that it can be controled with frequency.
That’s another subject and as it stands I’ve been becoming ever more pro-active ( my resolution) and under know circumstances will I shirk my responsibility to my boy. I only want what’s best for him and I’ve made up my mind ! Nocturnal is what’s best and nocturnal he will have. Even if I have to walk to Toronto, in the dead of winter, to my legislature carrying a placad on my back… then so be it ! But for now I’ve woke up a few ministers and parts of the media… I’m just beginning… the Kidney Foundation wants me to volunteer … they want me to bring a information package to my MPP …my foots in the door… and I will deliver a personal message at the same time… I have a good freind who work at a local radio station… he’s asked to join in on this adventure.
Jess has a Echocardiogram in about 1 hour from now then we will see about LVH and if he does have a problem ( I’m worried ) well that’s just that much more amo !
How long has Jesse been on dialysis. How often does he do sessions. What is his bloodwork like?? Phos, potassium, creatine,BUN, etc. Do you get a copy of the results. We get the results each month from the nurse. By the way we are in Canada, too - Newfoundland. He may not be gettin g adequate dialysis and that can affect appetite. I have gone through that with my husband. Especially when he wa on PD. Since starting nocturnal in Oct. He has done really well- eats like a horse- gained about 10 lbs in Dec. He thought he was doing really well on in center hemo but when he started nocturnal he said food even tasted better. The blood pressure sounds like a big problem - not stable at all. Is he on meds? I totally agree with you fighting for him. Go for it!! Nocturnal is working really well for my husband. He has been on dialysis for 9 years and sometimes have had to fight for to get things done - that’s the only way to be heard sometimes. Good luck!!
I remember myself before starting home training I was weighing in between 59 - 60kg and had high blood pressure. Did not have a good appetite and had anemia.
Today, dialyzing at home 6x a week daily-short I have gained weight between 75 - 80kg and my blood pressure is normal.
I also remember my very first days on dialysis, 3x a week for 5 hours. It was very very hard! It took some time to at least feel a bit better, but it wasn’t something that was adjusted right away. Alot of lab work and analysis to determine how much dialysis is needed. The hardest part of all is the strict diet and with only 3x a week dialysis its just horrible experience that fluctuates your wellbeeing from feeling great for a few hours and then a sharp sharp drop to feeling very bad.
If home dialysis, doing it every day can be granted I think he will be way better off than 3x a week. Also, at a young age that he is it will be healthier growing up and managing for himself at home.
[QUOTE=delphine;11856]How long has Jesse been on dialysis. How often does he do sessions. What is his bloodwork like?? Phos, potassium, creatine,BUN, etc. Do you get a copy of the results. We get the results each month from the nurse. By the way we are in Canada, too - Newfoundland. He may not be gettin g adequate dialysis and that can affect appetite. I have gone through that with my husband. Especially when he wa on PD. Since starting nocturnal in Oct. He has done really well- eats like a horse- gained about 10 lbs in Dec. He thought he was doing really well on in center hemo but when he started nocturnal he said food even tasted better. The blood pressure sounds like a big problem - not stable at all. Is he on meds? I totally agree with you fighting for him. Go for it!! Nocturnal is working really well for my husband. He has been on dialysis for 9 years and sometimes have had to fight for to get things done - that’s the only way to be heard sometimes. Good luck!![/QUOTE] Jessie started Dialysis Dec 2nd so he’s really new and I do understand that it will take sometime to get his bp under control. But then again I am well aware of the “fact” that doing longer slower more gentle dialysis is by far " superior". Month’s no years of researching this issue has made me a believer… don’t have to be a rocket scientist to figure this out. At this point 3X3 is just not cutting it … hell his creatinine has gone up along with the urea. I’ve now been calling conventional hemo “maintanance” dialysis. After reading a article …HDP … thanks to Bill … Ive come to the conclusion that I’m being kind by calling it maintanance. You know what really pisses me off… they have this tunnel vision that one size fits all, it’s like it’s been implanted and to me that is completely wrong, wrong wrong !!! Jessie is 18 a far cry from the average age.
Now I’m at the point of taking parts of the K/DOQI guidline and throw them right out the nearest window and not even open it.
He just had a echocardiogram done yesterday so Im really anxious to get the results. I hope for the best but I am prepred for the worst. If I see just a miniscual problem with LVH then all hell’s breaking loose… that’s fact.
After Thursday’s fiasco we re-evaluate the situation…to-night … and we are very prepared.
[QUOTE=delphine;11856]How long has Jesse been on dialysis. How often does he do sessions. What is his bloodwork like?? Phos, potassium, creatine,BUN, etc. Do you get a copy of the results. We get the results each month from the nurse. By the way we are in Canada, too - Newfoundland. He may not be gettin g adequate dialysis and that can affect appetite. I have gone through that with my husband. Especially when he wa on PD. Since starting nocturnal in Oct. He has done really well- eats like a horse- gained about 10 lbs in Dec. He thought he was doing really well on in center hemo but when he started nocturnal he said food even tasted better. The blood pressure sounds like a big problem - not stable at all. Is he on meds? I totally agree with you fighting for him. Go for it!! Nocturnal is working really well for my husband. He has been on dialysis for 9 years and sometimes have had to fight for to get things done - that’s the only way to be heard sometimes. Good luck!![/QUOTE] By the way we get copies of every test that Jess does been doing just that since birth… so we do have a lot of info
It isn’t the cook Richard the appetite just goes - it is weird. I haven’t gained the “between 75 - 80kg” that Gus reports - Wow! - but since going home and more frequently I have gone from 72 KG to my current 84 KG. I’m just hungrier.
With the BP keep in mind it’s a problem over time but in the short term if you’re working the problem it will be okay. Don’t get too caught up in the trees. Take a step back and understand you’re in for the long haul and you’ll get your ducks in a row before you know it.
I wish I could offer direct advocacy advice but I really know nothing about advocacy outside the US. I would be very interested to read your impressions as you advocate. Are you listened to? How is it suppose to work under a Parliamentary system? that also appears to me to be more Federalist than the US system i.e. Provinces have greater importance than our States.
You said Jesse is doing 3 hours 3 times a week. My husband when he started 6 years ago started on 4hours 3 times per week. After a few months they decided to cut his time to 3:45 3 times per week. It doesn’t seem like much but what a difference to the way he felt. He had a miserable summer. Creatine went up and he suffered from restless legs. He asked to be put on for longer and they incresed his time to 4:15 3times a week. He felt better but creatine was still 1000+. Since nocturnal creatine is in the 400 when he starts dialysis and about 150 when he gets off the machine. He feels fantastic.
Why won’t they put Jesse on nocturnal?? We were told that this program had taken off in ONtario but it has only just started here in Newfoundland. When we started pushing for a machine at home our plan was to do it the same as conventional. We didn’t even know about nocturnal. I’m glad we found out though. From research we have done this is supposed to be as close to normal kidney function as you can get. Supposed to keep you from having lots of problems later on. Keep up the fight!
I agree with delphine the more dialysis the better. I started at three hours and was bumped up 20 minutes at a time until I ran 4 hours. Each bump I felt better. Then in 1995 or 96 I joined the Dilaysis_Support listserv, read my first post from Dori and it wasn’t long before I asked to have Qb turned down from 450 to 350 and my time increased to 4 hours and 45 minutes (like the four minute mile the five hour run seemed forever out of grasp).
Jessie what do you think about increasing your run length?
Oh yeah: And thank you Dori. For all your posts and all you do.
[QUOTE=Bill Peckham;11881]I agree with delphine the more dialysis the better. I started at three hours and was bumped up 20 minutes at a time until I ran 4 hours. Each bump I felt better. Then in 1995 or 96 I joined the Dilaysis_Support listserv, read my first post from Dori and it wasn’t long before I asked to have Qb turned down from 450 to 350 and my time increased to 4 hours and 45 minutes (like the four minute mile the five hour run seemed forever out of grasp).
Jessie what do you think about increasing your run length?
Oh yeah: And thank you Dori. For all your posts and all you do.[/QUOTE]
HI Guys… Yes nocturnal dialysis is here in Ontario … started at Welsely T.O. in 93 and naturally the outcomes are by far superior to “maintanance” dialysis, but we live in Northern Ont and we are not part of the NIH study
( another one ) … after reading a article on HDP it just confirms what I’ve already read from others… and the names ( Pierratos, Scibner, Charra) they have already proven nocturnal is superior… the evidence is irrefutable… and that is the evidence I’m using when dealing with my Goverment… They need to be taught
I don’t understand why you have to be part of a study that only serves a certain area. We could not do the training for nocturnal at the center we were at (1 hr drive from home) We had to go to St. John’s for training (about a 5-6 hour drive) We have nothing to do with the center we were at now. We are covered by the where we did the training in St. John’s. We just do our order for supplies every month and it is sent by courier. The machines are covered by the techs in St. John’s. There is one on call 24/7 and they tell you to call anytime if you have a problem(we have called several times. They also come to your house to do maintenance on the machine every few months. If anything happens and we can’t use the machine we have to go to our old center in Grand Fallls-Windsor until they bring a new machine or come fix the old one. We are pretty remote from the center where we were trained. The nurse that trined us said they are conccerned that the government is soon going to cut off the training because of the cost. That’s why I would like to see some studies done. I feel that if you want nocturnal YOU should be the one to choose, of course they would have to decide if you were capable of doing it. Some people just aren’t capable of doing the training and looking after themselves.
[QUOTE=delphine;11912]I don’t understand why you have to be part of a study that only serves a certain area. We could not do the training for nocturnal at the center we were at (1 hr drive from home) We had to go to St. John’s for training (about a 5-6 hour drive) We have nothing to do with the center we were at now. We are covered by the where we did the training in St. John’s. We just do our order for supplies every month and it is sent by courier. The machines are covered by the techs in St. John’s. There is one on call 24/7 and they tell you to call anytime if you have a problem(we have called several times. They also come to your house to do maintenance on the machine every few months. If anything happens and we can’t use the machine we have to go to our old center in Grand Fallls-Windsor until they bring a new machine or come fix the old one. We are pretty remote from the center where we were trained. The nurse that trined us said they are conccerned that the government is soon going to cut off the training because of the cost. That’s why I would like to see some studies done. I feel that if you want nocturnal YOU should be the one to choose, of course they would have to decide if you were capable of doing it. Some people just aren’t capable of doing the training and looking after themselves.[/QUOTE] I too don’t understand why Jessie should be part of any study, especcialy seeing that it’s just that another study. Humber use to be Welsley T.O. has proven beyond doubt that nocturnal, to be not only superior but cost effective and that was years ago (93) Get this if we were living 1hr south we’d be in the geographical range of Humber and be able to participate. Tell you something else the study started in March 06 ends in
March 07 the results are not expected till 09. That is just outright stupid,disgusting and irresponsible at that rate they will never implement or change policies till what 2012. To top it all the data will be the same that has been coming out of centres like Tassin France, Seatell, Lynchberg VA , Geelong and Humber to mention just a few, amongst this group alone are 10’s of thousands of (dialysis hours) of research.
As far as I’m concerned my goverment is just dragging their feet like goverments do unless it’s to give themselves a raise. Well Ive been raising hell a bit at a time. My MP here in Sudbury happens to be the health critic in this province and her husband is the leader of the opposition . I have my liberal Mp who’s brother is one of Jessie’s high school teacher and football coachs and he’s been out to some hockey game so I can imagine the conversations over the holiday’s trust me I gave them a lot to think about. Yes Jessie is still capable of playing hockey, he’s not your typical dialysis patient. Looking at him you’d never know. The boy has reserved strenght and the way he plays the game … well I just don’t know how… I shake my head and pace watching him and his mom has fits before games takes her what seems like hours to calm down… Jess , the little shit just takes it in stride and prepares for the next practise or game. Tournament at the end of the month and he’s already asking about clinics in the area to do dialysis between games… Another grey hair…
- but since going home and more frequently I have gone from 72 KG to my current 84 KG. I’m just hungrier.