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Hi- can anyone tell me how the port is installed for the week long IV’s of AP? I have read the book Our Road Back & Henry Scammels book but the details on this are sort of vague. Reason I am asking is I have veins that are hard to find anymore – this has happened over the years of having unknown SD – my right arm 3 different doc’s offices can no longer despite efforts able to stick. My left is not alot better so I am wondering how they go about the method for the port & if this will be any issue.
Funny as doing anything with my arms now for touch or attempts to do bloodwork is really painful – I never used to mind doing bloodwork & used to give blood once a week when i worked for a medical company.
thanks – JillJill I am so sorry darling you are having this problem. I had it also so I know what you are going through.Just wanted to let you know they used a heat pack before even trying on arms, still do. Earlier when they all blew Dr. used to put my feet in hot water as hot as i could stand and use my legs and feet but you have to have a Dr. do this, that got me through the situation. was a holistic Dr. at the time. The heat sure makes them pop up. I never had to have the port in because this worked. wondered if they had tried this for you. Sometimes you have to speak up. sorry cant help you with the question, just thought this might help.
Have had a few times where the vein has blown out. I never knew about this – it makes sense to raise the core temperature. MANY THANKS fir this! – Jill
Anyone who has had the IV’s that can tell me a bit more on this port please? Thanks Jill
I had a depressing visit with one of my 2 Rheumies – who not only wont support the IV – I figured as much, but went so far to say i should stop the minocycline that I got the 2nd Rheumie to give me yet she has nothing to offer that is proven to work- so I dont see why – she mentioned vasculitis as being a risk to minocycline & of course lupus like feeling but I told her about the Herx that is when she mentioned Vasculitis seeing that in 2 of her patients who were on minocycline BUT I have read of vasculitis in SD without being on AP so I dunno it is that simple. For her saying no proof in studies then how can she say so completely that the AP caused vasculitis – I seemed to have hijacked my own thread here LOL but she says my SCL 70 & Cardiolipin fctors mean it is serious then says i may remain without more internal involvement for years almost poo pooing it. Yet Dr Virginia Steen says anytime there is a positive SCL 70 that means rapid progression & lung involvement – I think the better answer would have been impossible to know rather than give hopes that I may stay on a plateau for years – she to me might as well been reading tea leaves & those maybe better. She seemed to be talking out of both sides of her mouth at the same time. Imagine that.
sorry you are having such a bad time, besides being frustrating it is stressing you out.
I have heard way back by someone in the group that minocycline in IV form, is dangerous for the reasons you mentioned. not so the oral form though, so maybe one of the more knowledgable persons could help you there.
Have you tried a holistic clinic for IV treatment. Many of us have used the clindamycin IV for the opportunistic infections that sometimes cause problems stopping you progressing. The holistic Dr. would also be able to guide you to a specialist who would put in a port for you maybe. I know finding as Dr. to help us is difficult. There is no doubt Doctors need to take care if this has been a problem with IV minocycline. . Good idea to read up in the information section all the material if you can find the time, it is very helpful. Hope you sort it out soon for your sake. May be you would be able to find info on this in a search for IV mino.Hi Rosemary – I may have confused you – am not looking for a minocylcine IV am looking for the clindamyacin IV. This Rheumie told me to stop taking the minocy. oral as she felt there was a vasculitis risk for patients who take this. It is good to hear that she may not be correct in this that the risk is in the IV not oral if i am understanding you correctly.
Having SD I dont think I can afford to not take the oral Minocycline.
I have read older posts in doing searches for hours. I am looking for how they put in the port specifically so I can kinda of know if someone with vein issues from SD like I have will have any problems.
I wish Memphis had holistic docs & I have contacted every doc I was sent info on who does AP that is in the south none of them will do the IV therapy only oral.Thanks Jill
Jill, about 3-4 months after my diagnosis with systemic SD I was on oral minocin but I was wanting to jump start things since my SD was rapidly advancing SO I went to see Dr. K in Lufkin and stayed there for 10 days so I could take IV Clindamycin once a day, every morning…..on the first day they couldn’t get a vein either. I’m not sure why, if I was too dehydrated from not drinking enough fluids before the visit or ? I do know that when I was very sick that they did start having issues getting a good vein….BUT, I had to have a pick line put in …..I’ve had them before so I didn’t mnd since I wasn’t looking foward to getting stuck every morning for the next 10 days!…what they do is deaden the area on your arm and thread a small cathether up the large vein in your arm…….this was done in an operating procedure room at the hospital in Lufkin but they don’t need to knock you out since the procedure is painless….I also have had it done in my hospital room once when I was an inpatient when I was first diagnosed….the port hangs down from your arm a little bit and they can draw blood and give you medications through that port without having to find a vein and get stuck over and over….Hope this helps answer the question…Gay…
It does help Gay thank you !!
Wonder why Dr S said that for future follow up IV’s perhaps a home health could run a IV for me for a week?
Home health I dont think could do that with a port. They dont have imaging to guide them which if I am understanding yo correctly that is one of the reasons for the hospital doing these ports.
Your description is pretty close to what the IV nurse at my Rheumie told me she worked at a hospital b/4 this.May I ask did you have to have further IV’s or just the one? I hope you are feeling better & your veins are more cooperative. 😀
Many thanks Jill
Hi cavalier,
Sorry, you are having so many challenges in getting treatment. I have had weekly clindamycin IV’s for a long time, and the way that it works for me, is that a home infusion company comes out to the house. They start a peripheral IV , and it is left in my arm for the entire week and I administer the IV’s to myself. At first I was a little nervous, but have since gotten used to it.
Have you found a doctor who will prescribe the IV clindamycin?
nancyIf you go to the internet and look up “picc line” you will see what we who have useless veins do.
Davit.Good Morning Jill, Dr. K. suggested that I only have the IV treatment just that one time for 10 days….I’m much better now and my veins are more cooperative!…..That IV treatment was the jump start that I needed to getting better….
if they are having trouble accessing your vains they can either put a pic line in or port. The pic is a tube that runs thru your vain in your arm and is left in during your treatments but then taken out once done. So if you have 5 days worth of treatments they will only have to access you once every treatment. I got the port put in for myself cuz they couldn’t find any vains, my skin was too hard. Its a quick procedure and they do put you under, and the port is put in your chest. Sd effected my entire body really badly so for me there was a lot of discomfort in my chest afterwards, but this was bc my skin was so tight that when i moved my right arm it would pull the skin on my chest and thus disturb the port on my right side. Also, it took a long time to heal. From what i’ve heard tho, normal recovery for those without sd on their chest is 2-3 days of slight discomfort and 1-2 weeks before its like nothing ever happened. For me personally, the port has been amazing and i’ve no idea where i’d be without it. When it comes time for iv’s i put a little numbing cream, then they accesses you and you stay accessed for the length of your treatment. Mine is 5 days. So you only get poked once and you don’t even feel it! Any other questions pm me. Best of wishes. 🙂
You are not put out for a picc line. It takes about an hour and you can watch. I’ve had six now for chronic staph. Some were left in for six month. I’ve never had a port because I was told the picc was better. I also did the antibiotics at home myself and twice had a continuous drip machine. I’ve also done IV push through a picc.I have done Clindamycin but it was with a stationary IV pump. All this is free in BC. You have a choice of premix or you can mix. Picc is painless and approximately 38 cm in a big vein on the inside of your upper arm and isn’t in the way but the extension so you can do it is taped out of the way on your arm. As far as I am concerned it is the only way to go. Oh and you can not feel it at all.
Davit.
Hi Nancy & all – many thanks for all of the wonderful info !!!
Have been out of touch as I have had alot of doc’s apptmt’s this week – my one Rheumatologist took some of the info I gave her & said she is willing to look at the clindamycin IV’s but wants to reach out to some of her associates as well one is at Mayos she didn’t give any names but at least she is willing to look at this. She said she would get back to me this coming Monday with her decision – I gave her Dr S’s contact # as well. I also am going too after she says her decision ask my Fam. Doc in giving him the info if he would order it. I really need to stay here but I also dont want to put this off.
Been reading a little on Photpheresis am wanting to do this as I think it combined with AP would be a good rounded approach – I have known my blood was thick since 05 – nothing in Memphis closest is Nashville Vanderbilt but dunno if insur. would pay etc.
To me based on what I have gathered this could help me advance quicker or slow down progression – in 4 wk’s my Clot risk has continued to climb despite Minocycline AP bid & Plaquniel.Best – Jill
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