Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 , A central line is something that is more [permanent than just an iv line each time. Its a tube in your chest area, that they keep there for a period of time. I would strongly suggest talking the options over with your doctor as there is also flushing of that tube to be done on a daily basis too. We thought holly was going to need one when she was around 2. Scary for us then. AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Hi , My brother in law was diagnosed, 5 weeks ago, with stage 2 non-Hodgkins lymphoma. Because of all the blood tests needed, (he also doesn't like being stuck) they put in a central line. Directly into the chest. He hasn't had any problems with his. I didn't realize that it needed to be flushed out everyday, though. I'll ask my sister about that the next time we talk. I have known of some adult Still's people who needed them. One had a home health nurse that helped. As far as I know, it can be used for taking out blood as well as administering meds. Good Luck with this upcoming surgery. I don't mean to scare you at all but last week Josh's doctor said elbow surgery for arthritis is really hard to do and can almost be considered still in the experimental stages. He was explaining how that joint has such a wide range of motion, when working properly. Lots more range than an ankle or wrist, for example. And it's really hard to replicate. Then, the very next day, I was at the DMV and the guy next to me struck up a conversation. Turns out he had been in a motorcycle accident and had major surgery on his elbow, one of the most complicated surgeries in the entire state ~ or so he said. He still had pins in his, permanently I think, but he was extremely pleased with the movement he had now. Take care, Georgina ajaomom@... wrote: > > , > A central line is something that is more [permanent than just an iv line > each time. Its a tube in your chest area, that they keep there for a period > of time. I would strongly suggest talking the options over with your doctor > as there is also flushing of that tube to be done on a daily basis too. We > thought holly was going to need one when she was around 2. Scary for us then. > AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 They place a catheter in a central vein so they can access you vein easier, It will eliminate you getting stuck so much. Most patients are very happy with them. It is not painful for the patients when they are accessing you. The can also administer meds through it. Good Luck and be strong. SHU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 , A central line is an IV that is inserted into a main vein in the collar bone area. Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 hi brandy how are you doing? i seen this done on my mom due to her viens collaspeing they had to get one of the family members to sign a paper to do this but hers was at her coller bone and this allowed meds and iv fluids to go in and it keeps this open my mom was terrified of needles i also know the artery in the neck blood takeing my son had this done since i am older now and know things better i do this with my hubby my son and melissa when they need blood taken a few years ago when melissa was hard to get blood from and my hubby had blood clots the lab tech told me to always watch the one takeing the blood some are rough getting blood you are the one they are sticking and you have a right to tell them about YOU and how hard it is to take blood from you or your family member getting blood takeing always make sure where they take the blood GOOD and make sure thats where they get it the next time PLEASE tell them ( speak up) also they have needles SMALL ones they CAN use with my hubby i tell them left arm and point to the spot and stress NO DIGGING for it 1 stick or quit i tell them for my son 1 stick or they cant get it and has been stuck in the neck ONLY second try with melissa she has 2 places and her doctor told her to make sure they ONLY do these 2 places right hand theres a green spot there and left arm a purple spot and use the butterfly needle the smallest so far this has helped ALOT with getting blood taken with them when you state this to the tech normally they will give you the BEST one to draw the blood and its better than them digging for a vien but remember where they get it from theres NO sense in digging for it and this helps kids with pain and the fear of getting stuck melissa dont feel it that bad now she KNOWS they will only try those 2 spots if not she will tell them about it and say just stop kids have rights to they are not guinea pigs Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 hi me kroft, sorry to hear that your son will be going through something so hard, wish you the best. is his central line painful? does it complicate his movements? i have enough complications, thanks for the info, brandy _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hi Folks, has a central line. It enters the vein at the coller bone and is accessed at his chest. It was put in to to make his monthly cyclophosphamide pulses easier. is going to get a bone marrow transplant and it comes in handy for that too. As for daily flushes, we have never done that. So far it has been problem free. Leonard Kroft lkroft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 Why is he getting a bone marrow transplant? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 > hi me kroft, sorry to hear that your son will be going through something so > hard, wish you the best. is his central line painful? does it complicate > his movements? i have enough complications, thanks for the info, brandy > _________________________________________________________________________ Hi , the central line is not painful except maybe from an impact such as another child falling on him. There is no restrictions of movement what-so-ever. still preferrs to get blood drawn from his arm so that he does not have to go through the flushing proccedure. I.V.'s he preferrs through his central line. The main risk is infection but that has not happened yet. Leonard Kroft lkroft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 > Why is he getting a bone marrow transplant? > Robbin is getting a bone marrow transplant because he has not reponded well enough to the other medications,(we tried them all except maybe arava ). He can only walk short distances with help and his growth is stunted because of steroids (20mg per day). Bone marrrow transplants are risky but I felt the risk was warrented to increase his quality of life. It is better to do it now when he is relatively healthy than in an emergency situation whenhe has less strength. Leonard Kroft lkroft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Leonard ok i know i have 2 sisters who are bone marrow donors i was curious about it does the bone marrow help with JRA? melissa has constitutional growth delay keep me informed of the progress Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 They have done a bone marrow transplant on a little girl here in Portland. She was in the hospital last year at the same time our daughter was in getting diagnosed. They have had follow-ups about Molly in the Oregonian paper, and she is doing just fine. The surgery was performed here in Portland at the Children's Hospital. >From: " Leonard Kroft " <lkroft@...> >Reply- egroups >< egroups> >Subject: Re: blood help >Date: Tue, 3 Oct 2000 09:03:55 -0700 > > > > Why is he getting a bone marrow transplant? > > Robbin > > > is getting a bone marrow transplant because he has not reponded >well enough to the other medications,(we tried them all except maybe >arava ). He can only walk short distances with help and his growth is >stunted because of steroids (20mg per day). Bone marrrow transplants are >risky but I felt the risk was warrented to increase his quality of life. >It >is better to do it now when he is relatively healthy than in an emergency >situation whenhe has less strength. > >Leonard Kroft >lkroft@... > > > > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Re: blood help > Leonard > ok i know i have 2 sisters who are bone marrow donors > i was curious about it > does the bone marrow help with JRA? > melissa has constitutional growth delay > keep me informed of the progress > Robbin Donated bone marrow is usually not used. will have bone marrow that was harvested about 1 month ago, modified, and then returned to him once his old marrow is destoyed. There is some thought that the step of returning the modified bone marrow is not nessessary, but we will be doing it any way since it is part of the established protocol. Leonard Kroft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 I read an article on bone marrow transplants that were done on children in Europe, only a handful have been done for JRA kids. They all have not had any success with medications and this was somewhat of a last resort. Of the 7 that were done, I believe 2 died and the rest were arthritis free. > > They have done a bone marrow transplant on a little girl here in Portland. > She was in the hospital last year at the same time our daughter was in > getting diagnosed. They have had follow-ups about Molly in the Oregonian > paper, and she is doing just fine. The surgery was performed here in > Portland at the Children's Hospital. > > >From: " Leonard Kroft " <lkroft@j...> > >Reply- egroups > >< egroups> > >Subject: Re: blood help > >Date: Tue, 3 Oct 2000 09:03:55 -0700 > > > > > > > Why is he getting a bone marrow transplant? > > > Robbin > > > > > > is getting a bone marrow transplant because he has not reponded > >well enough to the other medications,(we tried them all except maybe > >arava ). He can only walk short distances with help and his growth is > >stunted because of steroids (20mg per day). Bone marrrow transplants are > >risky but I felt the risk was warrented to increase his quality of life. > >It > >is better to do it now when he is relatively healthy than in an emergency > >situation whenhe has less strength. > > > >Leonard Kroft > >lkroft@j... > > > > > > > > > >For links to websites with JRA info visit: > >http://www.geocities.com/Heartland/Village/8414/Links.html > > > > ______________________________________________________________________ ___ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > Share information about yourself, create your own public profile at > http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 what do you mean arthritis free? that sounds impossible! dont egt me wrong, i wish it worked, like everyone else. but, how does a bone marrow transplant stop ones immune system from attacking them? i must be missing something cuz i dont get it, and if this were true why wasnt this made big time news? jra-ers would be getting this done like crazy. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 Hi everyone. I wanted to respond about the bone marrow transplant issue. Elliot's previous rheumy had suggested it at one point, he had one child who had severe jra and after 10 yrs and numerous joint replacements( and severe disease ongoing) it was the next option. I believe he did well. Bone marrow transplant is not without risks and still new in its use with jra. You need to stay on medication to avoid any rejection and there are no guarentees. Regarding Elliot- his Dr. was big on the newest treatments and research and I felt Elliot was to be more of a subject . I asked the Dr. about cyclosporine as I felt we hadn't exhausted all medications. We felt that if needed we could consider transplantation at a future time. Fortunately Elliot is doing well now. Leonard I hope that your son has great success with the transplant. Rena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 - My understanding is that they first use radiation to " kill " your current immune system. Then they completely rebuild it with the regenerated bone marrow. I think it's not widely used 1) because this type of treatment is still relatively new and experimental; 2) it is risky; and 3) it's expensive, and would only be approved for the most severe cases. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 Re: Re: blood help > what do you mean arthritis free? that sounds impossible! dont egt me > wrong, i wish it worked, like everyone else. but, how does a bone marrow > transplant stop ones immune system from attacking them? i must be missing > something cuz i dont get it, and if this were true why wasnt this made big > time news? jra-ers would be getting this done like crazy. Dear , Ir the bone marrow tranasplant works is will probably put him into remission. Most are able to get off all medications. Essentially they build up an entire new immune system. Because of the risks involved, I only considered it because 's severity. He will probably have to stay in hospital for 6 weeks, become very ill and not be able to attend school untill January. It was not an easy decision to do this. Drug companies spend huge amount,often more than developement costs, when they release new drugs and that has a lot to do with all the media hipe over some drugs. Sincerly Leonard Kroft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 Re: Re: blood help > Hi everyone. I wanted to respond about the bone marrow transplant issue. > Elliot's previous rheumy had suggested it at one point, he had one child who > had severe jra and after 10 yrs and numerous joint replacements( and severe > disease ongoing) it was the next option. I believe he did well. Bone marrow > transplant is not without risks and still new in its use with jra. You need > to stay on medication to avoid any rejection and there are no guarentees. > Regarding Elliot- his Dr. was big on the newest treatments and research and I > felt Elliot was to be more of a subject . I asked the Dr. about cyclosporine > as I felt we hadn't exhausted all medications. We felt that if needed we > could consider transplantation at a future time. Fortunately Elliot is doing > well now. > Leonard I hope that your son has great success with the transplant. > Rena Rejection is not a concern,since it it his own bone marrow that is being returned to him. macrophage activation syndrom is, however, a concern. Once he is over this risk no immune suppression should be nessesary. Leonard Kroft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2000 Report Share Posted October 5, 2000 May God bless your family. I am not sure who this is harder on, the family, or the one with JRA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 Leonard, You & are in our thoughts and prayers. Good Luck !!!! Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2000 Report Share Posted October 8, 2000 Leonard, Hi, I am the father of Damien (6 yrs, Systemic JIA since 9 months old, England). I have been following the progress of Stem Cell Replacement Therapy since the first JIA kids received this in Holland a few years back. Obviously a large number of people on this list will be very interested in your progress so it would be very much appreciated if you could keep us updated. As this treatment clearly involves a number of risks, I assume that this has been a very difficult decision for you to make and I wish you and all the very best. Regards, Oliver Re: Re: blood help > > > > Hi everyone. I wanted to respond about the bone marrow transplant issue. > > Elliot's previous rheumy had suggested it at one point, he had one child > who > > had severe jra and after 10 yrs and numerous joint replacements( and > severe > > disease ongoing) it was the next option. I believe he did well. Bone > marrow > > transplant is not without risks and still new in its use with jra. You > need > > to stay on medication to avoid any rejection and there are no guarentees. > > Regarding Elliot- his Dr. was big on the newest treatments and research > and I > > felt Elliot was to be more of a subject . I asked the Dr. about > cyclosporine > > as I felt we hadn't exhausted all medications. We felt that if needed we > > could consider transplantation at a future time. Fortunately Elliot is > doing > > well now. > > Leonard I hope that your son has great success with the transplant. > > Rena > > Rejection is not a concern,since it it his own bone marrow that is being > returned to him. macrophage activation syndrom is, however, a concern. > Once he is over this risk no immune suppression should be nessesary. > > Leonard Kroft > > > > For links to websites with JRA info visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
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