AnonymousSeptember 8, 2009 at 12:39 pm
My 1st thread was GIB/CIDP? I have changed Dr’s in same practice & had EMG done and was told that I had sever sensory & motor neuropathy and he would have to get my hosp records and do more blood work but felt that it was CIDP. When I was in the hosp in May I had 5 IVIG treatments and than the middle of June my GP put me on steroids. I have been on them ever since at different mg. In talking to my neuro on the phone today he’s putting me on 40 mg , than 30, than 20 each for a wk and than 10. He also said he wants to set up 5 IVIG treatments again and than one a month. My problem is since I had breast cancer my veins are shot they can barely get blood. When I had the IV’s in May they put in a pic-line and kept it in until I was discharged from rehab but could not drawn blood from it because it got block and was removed. I mentioned this to the neuro and he said I might have to have them done at hosp and than said in the neck. I’m not sure if he was talking about a port or what because if IVIG has to be given monthly I sure would’nt want a IV in the neck. I’m not familar with ports does anyone have one and if so does heparin have to be admins weekly and can a family member do it? This is a problem because I can’t drive and it’s a problem just getting to Dr’s appts. I’m also afraid my Ins will not pay for the 5 treatments since it was just done in May. As everyone tells me just take it a day at a time but it is difficult sometimes. One day I feel very upbeat and think everything will be ok the next day I’m overwhelm. One thing I’m grateful for is that I’m not in real pain just this annoying numbness, tingling,& stiffness. Thanks for any info you can give me…..
AnonymousSeptember 8, 2009 at 2:57 pm
Hi there. I’m in MI too. If you don’t my asking, who is your dr? There is a FANTASTIC dr who specializes in CIDP out of Wayne State. His name is Dr. Richard Lewis. People who went to the GBS/CIDP symposium met him & everyone raves about him. There is also at least 1 other person on this board who sees him. If you are close enough, you have a wonderful opportunity to work with the best dr available. I would take my daughter to him if he dealt with children but he’s strictly adults.
My daughter has a port. She got it when she was 4 years old, almost 5. She’s turning 8 tomorrow & we still love it. It has made life SO much easier. She is a difficult stick (valve’y veins) and the IVIG treatments are much, much easier on her now. It’s a fairly easy surgery (you may even be able to have it done under twilight anesthesia – just ask your surgeon) & she was back to normal the very next day.
They have to be flushed with heparin at least every 4-6 weeks. I personally, wouldn’t go over 4 weeks but that’s just me. If you were getting monthly IVIG treatments they would just flush the port after your treatment was over. I would suggest getting the treatments done at home with a home care company. It’s much easier on you & it’s cheaper for the insurance company than going to the hospital.
Anyway, I HIGHLY recommend a port. I can’t say enough good things about them.
September 8, 2009 at 4:12 pm
Kevin just had his port replaced, besides the port, a catheter is put into the neck with a small incision. the medicine goes into the port and flows into the catheter and thenthroughout the body. You can get it under twighlight, Kevin did. I started a thread regarding anesthesia and cidp, you could search my name and find the thread. It is not to long ago.
Dawn Kevies mom
AnonymousSeptember 8, 2009 at 5:17 pm
I have had a port over 2 years now and am reluctant to give it up even though I currently am not receiving any IVIG. I was receiving both chemo and IVIG thru it. As Kelly said as long as it it kept flushed every 4-6 weeks it is fine. I don’t even notice that I have it. It doesn’t bother me and if you are receiving the IVIG every month that will keep it flushed as they will heparinize it as part of the IVIG procedure. Ask your physician if you can receive the IVIG at home as it will be easier for you. It can be inserted as an outpatient procedure and used right after as long as it is accessed right away during the procedure otherwise I believe its a 5 day waiting period that is recommended. If you are interested I can send you the name of the home infusion company that I had. They cover your area as well I think.
AnonymousSeptember 8, 2009 at 11:16 pm
We are also in Michigan. My son Ryan who is 20 has a port but his is used for Plasma Pheresis. He just had a IV for IVIG. But IVIG didn’t work for him. He is also on high dose of prednisone 80 mg. suppose to be wiened down just waiting for new RX for the lower dose of prednisone tablets.
Anyways Ryans port was acccessed that day and then 2 days later. never had any problems with it, He also sees DR Richard Lewis out of wayne state university and he is an awesome Neuro. He knows his stuff. He reccommended that Ryan get his port flushed every 3 days. He gets plasma pheresis 1 time every other week now.
So if you are able to see dr lewis at wayne state do it you will not be sorry. If you live away from him then once you see him he will work with your neuro or get a neuro for u that will work with him that is located closer to you. He works closely with the other neuro’s.
Where in Michigan are you located, we are near Grand Rapids.
Best of luck to you email me anytime if you have questions. I would be happy to tell you more about dr lewis if your interested in seeing him.
Rhonda (ryan’s mom)
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