Notes from my HiCy experience...

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Notes from my HiCy experience...

Postby barbbelle » Tue Sep 09, 2008 7:15 am

Hi!
I'm a newbie and after recently completing the HiCy protocol at JH I wanted to pass along notes that may help any of you that may consider having the procedure.
Hospital
Must haves:
Your own Pillow (JH pillows are like flat rocks)!!!!!!!!!
Can get parking passes for $4 a day (outside admissions), which saves money.
Things for friends/family to do while you sleep i.e.: DVD player, IPOD.
You can take your own pjs, but a gown is actually fine too.
I slept for the first 3 days, so if your family wants to document what activities were swirling around you, it might be a great idea.
Leave dignity at home and the ‘I can do it myself’ attitude also. Accept help and understand that you will be weak.
The nurses are absolutely incredible, very knowledgeable and kind.
If you think that there is anything that you need to have in your apartment for when you are discharged, ask for it. (Ex: wheelchair, walker) The nurses/PT dept will help you get that. Remember, you will be weak for a while.

IPOP
After you are discharged from the hospital, you will need to go to either IPOP or HiPOP everyday. They are two outpatient departments across the hall from each other. Each day, you will be assigned to one or the other at a specific time. Upon arriving, they will weigh you and draw blood (from the Hickman catheter). The blood is sent to the lab and will tell the nurses if your counts are dropping, if you need platelets, packed cells, and every day you will get a sub-q growth factor injection to stimulate your bone marrow to produce white blood cells (thus the rebooting part). You could be at IPOP anywhere from 2-8 hrs. Be prepared with:
Sweatshirt, slippers, etc. It gets chilly.
Magazines
An Ipod is nice, portable DVD player, etc. There is a TV available.
Tell all symptoms that you have, no matter how trivial it seems. The day that my counts dropped, I fell. Falling was an everyday occurrence before HiCy, so it wasn’t a big deal to me. The bruising was amazing and because I forgot to tell them that I fell, the nurse practitioner got very upset about it.
Take a soft toothbrush to apartment—when counts drop, it has to be soft so gums don’t bleed.

Apartments:
I had a fantastic stay at Marriott Execustay. Church Home @ Broadway Overlook. Connie Brown (ph: 410-234-2004 ext. 11) was an incredible help. I signed a month lease, but with 5 days notice I could leave at anytime. She only charged me for the 25 days that I was there. The apartment was immaculately clean: looking almost new, 2 blocks from the hospital, internet connections, TV/cable, double bed, washer/dryer, kitchen with all amenities, and very safe with a locked gate with parking for one vehicle.

I hope this helps anyone interested in this procedure. It was well worth it to me, but everyone is different. Weigh your options carefully.
Thanks and have a glorious day!
Oh, and thanks to the 28 or so people before me at JH for forging a path for me! AND, to Keri for lending my kids the DVD player. They still talk about how cool that was!! You are truly a sweetheart!
Barb
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Postby Jamie » Tue Sep 09, 2008 9:03 am

Fantastic guide!

Also - don't shave your legs before using the harsh sanitizing wipes the night before your hickman!

It's great, there have been 29 people, i can think of 6 blogs/posters that talk about it - all positive.

That's actually a really high percentage when you think about how many Tovaxin bloggers etc there are.
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Postby RedPenguins » Tue Sep 09, 2008 6:14 pm

Jamie -

They stopped requiring the wipes before the Hickman - so that entire thing Mel had to go thru - not necessary!

Question - has Mel been sick since she's been back? (Like cold or flu?)

My last blood tests show my white count to be at 7700. Sigh. My platelets are up though.

~Keri
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Postby Jamie » Tue Sep 09, 2008 7:07 pm

Oh good.

It was rubbish.

No, not sick at all, hers took 2 months to be normal.
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Postby RedPenguins » Wed Sep 10, 2008 9:31 pm

Barb - I am glad to hear you are doing well. You had me worried at one point :( But I knew you were a trooper!! I'm glad I was able to help your kids....I should've left it there with you - if I had known how long you were gonna be there. Our apartment had a DVD player and I watched a lot of movies.

Your description is pretty good. I have made a blog, I just need to put it up. Sigh.

One thing I'd add, although I think I'm a freak :roll: when it comes to this - but whenever they flushed out my catheter with the saline, I tasted salt. I've always experienced that with any IV - when they flush the line, I taste salt and it's icky....so I recommend bringing some kind of candy to suck on, just in case....because they flush out the catheters a lot!

My hair is growing back (sadly some of it is coming in white 8O), but it's coming in. It's nice and soft right now. Tee hee.

So, how are you feeling these days??

(send me an email!!)

~Keri
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Postby chrishasms » Thu Sep 11, 2008 5:25 am

The salt taste is normal and I got it even chewing on Cinnamon Gun lol

I do agree though...YUCK!
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Postby Jamie » Sun Dec 14, 2008 3:07 pm

So how are you doing?
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Sorry to be out of touch for so long...

Postby barbbelle » Fri Dec 19, 2008 5:12 am

Hi all!
I was one of the july HiCyers and I have been out of touch for a while. My father fell 16 feet out of a tree while hunting (he is 77) and he fractured his back. He is fine, except for pain. He was in and out of 3 different hospitals and 2 different Rehab facilities in a 5 week period and he lives 2 hrs away. Needless to say, with the stress and the germs and a still low WBC.....things have been a little hairy around here. I had a good 3 month checkup right before the bomb hit. I tried to be careful by wearing a mask, etc. but still got an incredible cold and very sick. Since that time, I have not felt nearly as well. The fatigue is back X 10 and my symptoms are slowly coming back. I am still incredibly hopeful and just trying "to breathe" thru the holiday madness. I walked better 2 months ago but, I continue to go to PT in a pool which helps with the spasticity. I still feel as though I am better than I was before HiCy....which is a blessing to me. I can't even imagine that I would be a candidate for another pulse dose of Cytoxan because I was so weak and out of it when I had it in July. Keri was the poster child of the July HiCyers and we were all jealous of her for how well she did. On that note...
KERI: I have tried to email you multiple times and you must not be getting them. I am so incredibly sorry that you have reactivated. I am praying for you so hard. Good things are going to happen for you again. I can just feel it. I know that you are devastated and I don't blame you. It is hard to experience hope and then be blindsided. You are a fighter.....do not let this take you down, girl! You will get thru this and be stronger for it. Try to have faith that the drs will be able to get you thru this rough patch. I think of you often and now you are constantly in my thoughts and little 'talks with God' that I have about every 2 minutes of the day. I have been disappointed in how i have been feeling lately too. It is hard to get a taste of feeling better and to have it dashed away. My walking has never been stellar, but I just felt better. That is half the battle.
Sorry for rambling. I am still thrilled for Mel, Sandy and Mommasan for feeling well! Sorry, Chris that you are having problems! I wish you all a beautiful Christmas and lets all have a great 2009~!
Barb
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Postby mommasan » Fri Dec 19, 2008 6:50 am

Hi Barb,
This is an OT post for you. Totally irrelevant for anyone else. My fatigue NEVER went away. Like you, it was "Fatigue X10". I also developed constant cold sores, significant mitral valve regurgitation as well as tricuspid valve regurgitation causing rapid heart beat, shortness of breath, and chest heaviness. None of this was caused by HiCy. I have had to go on a CFS/EBV regimen to get any relief from this. It seems that the immuno-suppression may have allowed what was lurking to flourish in my body. What I thought was just MS fatigue, clearly was not. I am now on Valtrex, olive leaf extract, d-ribose, coenzyme Q-10 and carnitine. Dr. Kerr's comment about these supplements was "Cool." I am definitely functioning on a higher level than I was a month ago. Your MS may not be active, even though you feel like crap.

Sandy
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Postby barbbelle » Fri Dec 19, 2008 11:11 am

Hi Sandy!
Thanks a million for the tips! I just started on Valtrex for weird hives that just pop up occasionally. They are itchier than a bug bite and then dry up......go figure. Anyway, thanks for the fatigue ideas. I am going to try your suggestions to see if i can feel even a little better. Is that the CFS/EBV regimen? I am absolutely thrilled that you are feeling better than a month ago! We are thrilled to get an little victories, aren't we!!!
Stay strong! Thanks again!
Barb
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Postby mommasan » Fri Dec 19, 2008 2:24 pm

Yeah, the Valtrex seems to be the key. These are all part of a CFS/ EBV regimen. I don't feel better MS-wise, just greater energy in general (still not normal by any means). But the olive leaf is one of most potent in-vitro virus/fungus/bacterial killers. The other are for increasing energy production in the body. This is not the forum to discuss dosages of these agents, and the ideal dosages are variable, so you may have to do a little research for yourself.

Sandy
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Postby Xenu » Thu Mar 05, 2009 9:03 pm

Barb,

Thanks for posting about your experience, and for including "tips" and hotel recommendations, etc.

I found it very helpful.

Cordially,
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