Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 That is great news about Hope! If you want my reccommendation about a pump- the best one that we have used (and still use!) is the Crono pump. When our Graseby just couldn't push the Vivaglobin through the y-site (we had some of the same problems with it stopping and alerting after a minute or two) we had our home health care company get the Crono. It is expensive but so worth it! The HHC was able to get it as a lease to own from somewhere. Noelle gets 20 mL over 2 sites and we haven't had any problems with the Crono pump. BTW, how do you get 23 mL? Our Viva comes in a 20mL vial. Hope this helps, Sara Good News and a Question Hello everyone, I have some good news that I thought I would share. We took Hope to see her Cardiologist on Wednesday and he as very pleased. He said that her heart is functioning normally and that he did not need to see her for a year!!! We are so thankful for this news. Her heart is still somewhat enlarged but if is stays the same as it is now it will still be good. I also have a question. Hope receives 23ml of Vivaglobin once a week. We are currently using a Baxter Minifuser Pump 300XL. The last two times that she has had her infusion it administers the medicine for about 2 minutes then in alarms. Then we have to shut off the pump for at least one minute before it will infuse again. This adds alot more time to the infusion and Hope is not happy about it. She is not shy about letting us know that it is taking too long!! ( She is a Drama Queen!! LOL) Has anyone else used this pump and have any suggestions? Or do you use another one that works good for you that maybe we could request? She uses the Medical 36 " Tri-furcated SCIG set. I would appreciate any recommendations or advice. (mom to Hope,6,undiagnosed immune deficiency,dilated cardiomyopathy,pustular psoriasis) --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Sara, Thanks for your reply. We get a 20ml bottle of Vivaglobin(in the box) then we also get a 3 ml that I am assuming they fill themselves at the Pharmacy. She has been on 23ml since we started Vivaglobin in September. Before we were doing IV and using Gammagard. Sara Drews <sdrews@...> wrote: That is great news about Hope! If you want my reccommendation about a pump- the best one that we have used (and still use!) is the Crono pump. When our Graseby just couldn't push the Vivaglobin through the y-site (we had some of the same problems with it stopping and alerting after a minute or two) we had our home health care company get the Crono. It is expensive but so worth it! The HHC was able to get it as a lease to own from somewhere. Noelle gets 20 mL over 2 sites and we haven't had any problems with the Crono pump. BTW, how do you get 23 mL? Our Viva comes in a 20mL vial. Hope this helps, Sara Good News and a Question Hello everyone, I have some good news that I thought I would share. We took Hope to see her Cardiologist on Wednesday and he as very pleased. He said that her heart is functioning normally and that he did not need to see her for a year!!! We are so thankful for this news. Her heart is still somewhat enlarged but if is stays the same as it is now it will still be good. I also have a question. Hope receives 23ml of Vivaglobin once a week. We are currently using a Baxter Minifuser Pump 300XL. The last two times that she has had her infusion it administers the medicine for about 2 minutes then in alarms. Then we have to shut off the pump for at least one minute before it will infuse again. This adds alot more time to the infusion and Hope is not happy about it. She is not shy about letting us know that it is taking too long!! ( She is a Drama Queen!! LOL) Has anyone else used this pump and have any suggestions? Or do you use another one that works good for you that maybe we could request? She uses the Medical 36 " Tri-furcated SCIG set. I would appreciate any recommendations or advice. (mom to Hope,6,undiagnosed immune deficiency,dilated cardiomyopathy,pustular psoriasis) --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Hi !!! Blaek is infused with 83 lm. we use the Quad set 9mm. We too had issues with the pump. We did use the one you have uesed. FORGET IT!!! it took too long & is was too bulky to carry around. We were switched to the Gradseby MS 16A. We used 2 60 ml syringes & each had 41.5 cc. We also used the ESP60. FORGET That one too. It is NOT meant to push IgG!!!! With the MS16A I do the sticking, Blake changes his syringes(4 20 mls. one with 32 & 3 with 20ml.) Before Blake did not even go as far as switching the syringes because he was always afraid of dropping the pump & what not. He really could not even move around for fear of the constant beeping. With the Graseby, He can put the pump in the little pocket pouch & go bike riding He love sit. He changes his syringes & it only takes us 1 hr 15 mins. to get done!!! With the ESP60 & The Minifuser, it took 3-4 hrs. to get everything pumped in!!! Hope this helps. We don't use the Viva any more. he was switched to Gammagard S/D 10% 15 grams. Much easier on the pumps also. We are suppose to get the Coron IntraFuser next month!!!! Good Luck & Great news with the Cardio!!! Mom to Blake 16 http://www3.caringbridge.org/sc/blakester The Greatest Adventure of MY Lifetime!!!!.......Visitors Welcomed.....anytime!!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Pugh <triplep_01@...> wrote: Hello everyone, I have some good news that I thought I would share. We took Hope to see her Cardiologist on Wednesday and he as very pleased. He said that her heart is functioning normally and that he did not need to see her for a year!!! We are so thankful for this news. Her heart is still somewhat enlarged but if is stays the same as it is now it will still be good. I also have a question. Hope receives 23ml of Vivaglobin once a week. We are currently using a Baxter Minifuser Pump 300XL. The last two times that she has had her infusion it administers the medicine for about 2 minutes then in alarms. Then we have to shut off the pump for at least one minute before it will infuse again. This adds alot more time to the infusion and Hope is not happy about it. She is not shy about letting us know that it is taking too long!! ( She is a Drama Queen!! LOL) Has anyone else used this pump and have any suggestions? Or do you use another one that works good for you that maybe we could request? She uses the Medical 36 " Tri-furcated SCIG set. I would appreciate any recommendations or advice. (mom to Hope,6,undiagnosed immune deficiency,dilated cardiomyopathy,pustular psoriasis) --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 , Is the IntraFuser a new pump? We have the Crono Super PID. It is so much smaller than the Graseby- Noelle loves it! She will only use the Sof-Sets- she refuses to use anything that the needle has to stay in! So we use a y-extender and 2 Sof-Sets. The pump has no problems and pushes the Viva easily in. Sara Re: Good News and a Question Hi !!! Blaek is infused with 83 lm. we use the Quad set 9mm. We too had issues with the pump. We did use the one you have uesed. FORGET IT!!! it took too long & is was too bulky to carry around. We were switched to the Gradseby MS 16A. We used 2 60 ml syringes & each had 41.5 cc. We also used the ESP60. FORGET That one too. It is NOT meant to push IgG!!!! With the MS16A I do the sticking, Blake changes his syringes(4 20 mls. one with 32 & 3 with 20ml.) Before Blake did not even go as far as switching the syringes because he was always afraid of dropping the pump & what not. He really could not even move around for fear of the constant beeping. With the Graseby, He can put the pump in the little pocket pouch & go bike riding He love sit. He changes his syringes & it only takes us 1 hr 15 mins. to get done!!! With the ESP60 & The Minifuser, it took 3-4 hrs. to get everything pumped in!!! Hope this helps. We don't use the Viva any more. he was switched to Gammagard S/D 10% 15 grams. Much easier on the pumps also. We are suppose to get the Coron IntraFuser next month!!!! Good Luck & Great news with the Cardio!!! Mom to Blake 16 http://www3.caringbridge.org/sc/blakester The Greatest Adventure of MY Lifetime!!!!.......Visitors Welcomed.....anytime!!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Pugh <triplep_01@...> wrote: Hello everyone, I have some good news that I thought I would share. We took Hope to see her Cardiologist on Wednesday and he as very pleased. He said that her heart is functioning normally and that he did not need to see her for a year!!! We are so thankful for this news. Her heart is still somewhat enlarged but if is stays the same as it is now it will still be good. I also have a question. Hope receives 23ml of Vivaglobin once a week. We are currently using a Baxter Minifuser Pump 300XL. The last two times that she has had her infusion it administers the medicine for about 2 minutes then in alarms. Then we have to shut off the pump for at least one minute before it will infuse again. This adds alot more time to the infusion and Hope is not happy about it. She is not shy about letting us know that it is taking too long!! ( She is a Drama Queen!! LOL) Has anyone else used this pump and have any suggestions? Or do you use another one that works good for you that maybe we could request? She uses the Medical 36 " Tri-furcated SCIG set. I would appreciate any recommendations or advice. (mom to Hope,6,undiagnosed immune deficiency,dilated cardiomyopathy,pustular psoriasis) --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Hi Sara!! No The Corono Super PID id the one I was talking about. I am sorry for allteh mis-spelled words. It is the GRASEBY MS16A that we are using. We use the Quad set because Blake gets os much at one time. But I will definitely ask about the Sof-sets. Do they have them for the Quad? Blake gets 13.5 grams of Viva. He has had soooo many problems, even with pre-meds, that his Immuno has gotten Baxter to go to the FDA as a " plea of Mercy " to get the Gammagard S/D to do sub-q. We did this in the beginning but the Dr. put it on hold to see how long the side effects were gonna last!! Well, we are going on 1 yrs. since we started Viva. Since Blake will be going up to 15grams a week, he will do the sub-q in 2 days. It will be less per day in dosage than what it is now. The reason for 2 days is it is in 10% & much thinner. So 15grams=150ml. Where as the Viva is 13.5 in 16% =83ml. The Dr. at Baxter, Dr. Schiff (I think) is the one overseeing Blake on this one. He has been doing Gammagard Sub-Q for yrs. before going to Baxter....I beieve he is out of Florida & was considered one of the Best Immunologist. The Corono Intrfuser is what Coram our infusion company(at the time is the one who gave this name) Thank You for telling me the real name!!!! We are suppose to be switching to Caremark for all our infusion needs. If ANY ONE has experience with Caremark Please tell me what to expect, I would greatly appreciate it!!! mom to Blake 16 SCID,With Complete T-Cell Dysfunction, SDBS, Asperger's Syndrome (AUTISM), Severe GERD.....Is on a " Mega Butt Load of meds for this...Drs Words!!! Lobves to Read & plans on being a Archeologist when he finally decides to go to work!!!! http://www3.caringbridge.org/sc/blakester The Greatest Adventure of MY Lifetime!!! Visitors Welcomed......stop by at any time!!!!! (ps his page has been updated since going to the Immuno & ENT!!) Severe Asthma, A Rare Blood Clotting Disorder & Pancreatic Deffect ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ , Is the IntraFuser a new pump? We have the Crono Super PID. It is so much smaller than the Graseby- Noelle loves it! She will only use the Sof-Sets- she refuses to use anything that the needle has to stay in! So we use a y-extender and 2 Sof-Sets. The pump has no problems and pushes the Viva easily in. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Well I have been found eligible for SSDI.. YEA But, Does the group have any input on what I should expect on the taxes.. Especially on the accrued amount?? My understanding is that the amount on the monthly is based on household income and that they will tax up to a certain amount of the monthly check... If that is correct is there a cap on what they will tax.. 85% for instance?? Thanks for any input.. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Congrats Tom! That's great news. I am glad you got it especially since I got bad news about mine today. It gives me hope that one day I might get SSDI.. If you don't mind my asking how long did it take overall to get it. I am sorry I don't know the answer to your question. What I can tell you is my boyfriend got 16,000 back. He didn't have to pay any additional taxes on it because he had no other income and no dividends or assets. Jane H. From: tomhfsu@... <tomhfsu@...> Subject: Good news and a question neck pain Date: Thursday, October 1, 2009, 12:49 PM Â Well I have been found eligible for SSDI.. YEA But, Does the group have any input on what I should expect on the taxes... Especially on the accrued amount?? My understanding is that the amount on the monthly is based on household income and that they will tax up to a certain amount of the monthly check... If that is correct is there a cap on what they will tax.. 85% for instance?? Thanks for any input.. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 I have a lawyer. It at at the reconsideration level. After that if turned down he will petition the judge to look over it. He has had a good deal of luck going that direction rather than a traditional hearing. He believes it is winnable and I have a narrative from my Orthopedists with supporting evidence stating that I am completely disabled and why. I am going into the 10th month so maybe it won't be much longer. Jane H. From: _tomhfsuaol (DOT) tom_ (mailto:tomhfsuaol (DOT) com) <_tomhfsuaol (DOT) tom_ (mailto:tomhfsuaol (DOT) com) > Subject: [PainInTheNeck- Subject: [PainInTheNeck- <W _PainInTheNeck- PainInTheNeck- <WPain_ (mailto:PainInTheNeck- Back@groups .com) Date: Thursday, October 1, 2009, 12:49 PM Well I have been found eligible for SSDI.. YEA But, Does the group have any input on what I should expect on the taxes... Especially on the accrued amount?? My understanding is that the amount on the monthly is based on household income and that they will tax up to a certain amount of the monthly check... If that is correct is there a cap on what they will tax.. 85% for instance?? Thanks for any input.. Tom [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Deb, If you find out what he said let the rest of us know. We all have many of the same problems that it could help us get our disability. Jane H. From: _tomhfsuaol (DOT) tom_ (mailto:tomhfsu@ aol. com) <_tomhfsuaol (DOT) tom_ (mailto:tomhfsu@ aol. com) > Subject: [PainInTheNeck- Subject: [PainInTheNeck- <W _PainInTheNeck- PainInTheNeck- <WPain_ (mailto:PainInTheNe ck- Back@groups .com) Date: Thursday, October 1, 2009, 12:49 PM Well I have been found eligible for SSDI.. YEA But, Does the group have any input on what I should expect on the taxes... Especially on the accrued amount?? My understanding is that the amount on the monthly is based on household income and that they will tax up to a certain amount of the monthly check... If that is correct is there a cap on what they will tax.. 85% for instance?? Thanks for any input.. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 At 12:49 PM 10/1/2009, you wrote: > > >Well I have been found eligible for SSDI.. YEA >But, Does the group have any input on what I should expect on the taxes.. >Especially on the accrued amount?? Congratulations, I know ou were pretty bummed when you were turned down before. I know the time between when I was approved and when I got my first check was about 3.5 months. As far as the taxes I got 2.5 years back pay - the lawyers cut. The taxes weren't so bad because I paid taxes based on the year they were earned, not the lump sum. I get a little over $14K a year and put aside about $1500 a year for taxes and that works out for me. Your situation may be different. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 That is how I won, so good luck Tom In a message dated 10/1/2009 8:07:08 P.M. Mountain Daylight Time, borlan9191962@... writes: I have a lawyer. It at at the reconsideration level. After that if turned down he will petition the judge to look over it. He has had a good deal of luck going that direction rather than a traditional hearing. He believes it is winnable and I have a narrative from my Orthopedists with supporting evidence stating that I am completely disabled and why. I am going into the 10th month so maybe it won't be much longer. Jane H. From: _tomhfsuaol (DOT) tom_ (mailto:tomhfsu@From: _tom<_tomhfsuaol (DOT) tom_ (mailto:tomhfsu@(mailto:to> Subject: [PainInTheNeck- Subject: [PainInTheNeck- <W _PainInTheNeck- PainInTheNeck- <WPain_ (mailto:PainInTheNe(mailto:PainInTheNe<WBR>ck- Bac Date: Thursday, October 1, 2009, 12:49 PM Well I have been found eligible for SSDI.. YEA But, Does the group have any input on what I should expect on the taxes... Especially on the accrued amount?? My understanding is that the amount on the monthly is based on household income and that they will tax up to a certain amount of the monthly check... If that is correct is there a cap on what they will tax.. 85% for instance?? Thanks for any input.. Tom [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] __________________________________________________ Do You ? Tired of spam? has the best spam protection around _http://mail.http://ma_ (http://mail./) [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.