AnonymousJune 19, 2007 at 6:34 pm
I saw my Neurologist today about the form for work. I explained to her how my work place is giving me a hard time. Well she made me do the Nerve test all over again and it was the same no changes. But because me not having the strength to do my job especially this year she decided to try 5 days of IVIG. She said I could have it done in 2 days but I thought as it is my first time getting it I will take the 5 day version.
It’s out of town I have to get it done in Ottawa as I am not sure my family DR can order that at my local hospital so that means going back and forth every day.
She ordered blood work so she can have the result of them before I start IVIG. She thinks I will be getting my IVIG in about a months time.
The form for work she will have to call them to ask what they want from her. She will also bring up the fact that she is ordering IVIG for me.
AnonymousJune 19, 2007 at 6:41 pm
I don’t really know how the health care system works in Canada but I would think that you SHOULD be able to either get the IVIG done through home care, a local infusion center, or you could stay at the hospital for the 5 days. You should have your neuro call your family dr to see if they can arrange for the infusions to be done at the hospital nearest you. There shouldn’t be any reason why they can’t get the IVIG too. I wouldn’t suggest driving back & forth after getting it, especially since this will be your first time.
I hope it works for you. Having an EMG that is the same is better than having one that is worse…so really it was good news. (I’m working on finding the positive in everything…can you tell?)
I’m glad that she’s working with you on the work thing. Hopefully they will understand and cut you some slack.
AnonymousJune 19, 2007 at 6:54 pm
Hi Kelly usually your DR has to be allowed to order any test from a hospital. If he can’t then he would not be able to ask for the IVIG. But where I am getting it done it is at the same hospital I see my Neurologist so maybe if she has time she can stop in and see me. It’s a very good hospital in my province. But if she feels down the road I need more IVIG I will ask my family DR if he could order it. It is always nice the first time to do it in a hospital setting with people really experience in that. So that if I ever get it again in Cornwall I can tell them about the rate of infusion and stuff.
My sister is suppose to come down from British Columbia in July not sure when. I hope it is not that week.
One thing I don’t have to worry about is paying for it. It is included in our health plan. She told me if I would get sick they would pre treat me with Tylenol and benedryl.
Yes Kelly it is good to try and stay positive. I hope you keep staying positive.:) 🙂 🙂
I have been lucky I know that is why I was a bit surprise she ordered the IVIG but if it will help me all the better.
June 19, 2007 at 10:23 pm
😮 Sue, I am so glad you are making progress with a doctor. I agree, the hospital setting is the only way to go for the first time. Reaction is a real concearn the first time. I do not see any reason why your gp could not have the meds ordered to her office next time. My gp (not Kevies neuro) has a cidp patient, and she sets him up right in her office and he stays in a room all day. Kevie had a home infussion today, it was sooooo different than the past ivig’s. He received the liquid form today (no more powder, ever) and had no reactions except for a minor headache. We will see what the next two days bring, but I am hopeful! Good luck to you! Dawn Kevies mom
AnonymousJune 19, 2007 at 10:36 pm
Dawn Kevies mom Great that Kevies had a better time with his infusion. 🙂
My Family DR is a he and he works at a Clinic 45 minutes away. As far as I know no DRs office in Ontario does infusion in there office. It gets done at at hospital since it doesn’t cost us to use the hospital in Ontario for stuff like that. Just that I rather do it in my home town then 90 minutes away.
But maybe if some one was an invalid then maybe they would arrange something at home. But since I still drive and work I would not qualify.
What was the brand name of Kevies IVIG?
Thanks for your good wishes
AnonymousJune 20, 2007 at 12:04 am
I live in British Columbia. I have to travel 2 hours to have my IVIG. This is the closest hospital. We have a clinic in our town but it is not equipped to deal with blood products. Also there is not enough staff to properly monitor the infusion. I claim all my travel on my taxes. I also claim all the hotels, meals, and gas. I feel it is better to travel and be safe then to take chances. I hope you aren’t doing the driving after IVIG. I always get pre medicated with tylenol and benadryl so driving is not an option. I take a girlfriend to do the driving and I pay for the gas etc. That way it is a little holiday away from their hubby and kids. We watch girl movies and if I am feeling up to it do a little shopping.
AnonymousJune 20, 2007 at 9:42 am
I would highly recommend taking pre-meds of Tylenol and Benadryl, prior to your treatment. For one thing, Benadryl makes me sleepy so I sleep through some of the IVIG!:D
I take benadryl at home — much cheaper than what the hospital charges and it has a longer time to get into my system. In my earlier treatments, they would pre-medicate with solumedrol, which, to me, did nothing but extend the treatment session and make my blood sugar go sky high.
If nothing else, tylenol and benadryl will keep your comfortable.:)
AnonymousJune 20, 2007 at 11:16 am
If at all possible, see if you can stay in the hospital for this first round of treatments. It will be way easier on you and you can be monitored for any reaction. If they won’t admit you, I agree that you should try to find someone to drive you. I feel pretty yucky right after my treatments and for a couple of days following. Also, I sometimes get fever-like symptoms (chills etc) afterward. Hopefully, if all goes well, you can get future treatments closer to home.
AnonymousJune 20, 2007 at 5:14 pm
Hi Cathy and Caryn I will see when the time gets closer and I know when I go. In the hospital there is a day centre where it closes around 3:30. So the infusion would have to be done by then. Also the benedryl the hospital would supply that if I need it because it doesn’t cost me a thing at the hospital if it is medically necessary.
If I really felt bad and really sick they may have to admit me overnight. I also know my brother if he isn’t working on my first day he may want to volunteer his time. But I can always find a motel room for the night and claim it on my income tax as a medical expense. How long usually is the infusion? I thought it was around 6 to 7 hours. Any feed back?
June 20, 2007 at 5:46 pm
Hi Sue, Kevie gets 95 grams over three days. The infusion is about 7 3/4 hours each day with a 50 for the max flow rate. If the clinic closes at three thirty, you could extend the infusion over more days. I would not reccommend increasing the flow rate. This is where the problems start. Kevin had Gammaguard liquid this time, NOT GAMMAGUARD S/D (powder) The powder is what made him VIOLENTLY ILL! He premeds with extra stregnth tylenol, zofran for nausea and of course benadryl. We do it after the infusion as well. The home health worked out wonderfully this time, we used a different agency, it was like night and day. If you can get home health (after your first five day session in the hospital ) try to! BUt as I mentioned before, the hospital is the only way to go for your first treatment. Good luck! Dawn
AnonymousJune 20, 2007 at 6:00 pm
Hi Dawn. My Neurologist offered the 5 days or the 2 days. I opted for the 5 days as it is my first time getting it.
If I could get it in Cornwall if I need it again that would be nice because the hospital is only 5 minutes from my house.
I just hope they have good food for lunch. I am a fussy eater. I will just have to bring snacks with me in case. Hospital food is not bad sometimes.
Maybe I will be lucky and I won’t need anymore treatments after this 5 day infusion. Since I haven’t been getting worse in over a year. I can only wish.
AnonymousJune 20, 2007 at 9:46 pm
Make sure you pack plenty of fluids. It is important to drink plenty. You should try to drink 8-10 glasses of water a week before and continue drinking plenty of water after.
I bring a small cooler with snacks and water and juice.
A pillow is also nice in case there is a pillow shortage.
Take the tylenol and benadryl half way through the first day as well. Take it again before bed. It really helps with the flu like feelings. Who knows you might not get them
AnonymousJune 27, 2007 at 1:33 pm
I saw my Rheumatologist yesterday and the results came back that I don’t have Raynaud’s but I told him I still have the symptoms of Raynaud’s. He thinks it may be my nerve in my body because of the CIDP that is causing that. I also told him the heat makes my tendinitis hurt more and also the bottom of my feet hurt more.
He change my medication for tendinitis to Arthrotec 75 mg twice a day. He also will be leaving a note for my Family DR the name of two medications if the cold still bothers me. So I know if my Raynaud’s symptoms still bothers me my family DR will take care of it. I won’t be seeing him again unless my family DR asks him.
He also mention maybe the IVIG will help. Hopefully it will. He also asked me if my Neurologist ever mention for me to go on Disability. Why does everyone bring that up. If I could just get my Tendinitis under control it would help a lot. Workplace Physio therapist and now Rheumatologist. Gee give me a break.
Work tries to accommodate for my CIDP but they say they don’t have to for the tendinitis.
Also today at physio the therapist says that I also have tendinitis next to where I had my nerve biopsy. So the bump is called a neuroma and the pain next to it is tendinitis. That has been going on 2 year as of June 9.
You would think after 23 years of service that they would know me by now that I am not slacking off. Some people didn’t believe I am having all these problems. Management knows and my Boss Because of the registration form for MDA of Canada I gave them a copy. Once I told my Boss that he changed his tune.
Also once the employees know I am having my IVIG treatment they will realize I am not a lazyitis and I do have a problem.
Sorry for the long post just needed to vent
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