"I was referring to medicines that suppress the immune system, reducing the autoimmune attack on nerves. These include steroids, medicines to prevent rejection of transplanted organs and some chemotherapy agents. The only medicine of this type that…"
LivingWithCIDP - Online Support Group
Patient-to-patient support for people living with CIDP.
First Time User?
Need a Doctor or Specialist?
Advocacy for Patients with Chronic Illness
We are patients living with chronic inflammatory demyelinating polyneuropathy, here for your support.
Birthdays
Blog Posts
May 2012 LivingWithCIDP Community Newsletter
Posted by Ben Munoz on May 25, 2012 at 10:00am 0 Comments 0 Likes
Dear Friends and Family of LivingWithCIDP,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities…
Continue
OUR ONLINE PRESENCE IS GROWING!!!
Posted by Armando Abrero on May 22, 2012 at 6:50am 0 Comments 0 Likes
OUR ONLINE PRESENCE IS GROWING!!!
Check out this link to view Ben's Friends FB-Twitter Milestone.…
When Sickness Strikes the Family – Caring for the Children
Posted by Armando Abrero on May 6, 2012 at 8:05am 0 Comments 0 Likes
When Sickness Strikes the Family–…
ContinueClinicalTrials.gov Studies
Events
Badge
Please click on FIRST TIME USERS and WELCOME! tabs for helpful info, also the Help tab for Links . THANKS!
Forum
IVIG Roller coaster
Started by pat in General. Last reply by JonJ 19 minutes ago. 4 Replies 0 Likes
Fairly new to this often misdiagnosed disease and wondering if anyone else sees the ups & downs much between infusions. I started having symptoms around August of 2011 went to a family doc with what I thought may have been a couple of pulled or…Continue
Symptoms
Started by Carli in General. Last reply by JanaC 7 hours ago. 23 Replies 0 Likes
I would like to have support from everybody to share their symptoms and disabilities. Even though everybody is different, it would help to hear how people started and either got worse or better.Sometimes I feel so overwhelmed that I don't realize…Continue
Your belief and CIDP
Started by jeffrey in General 9 hours ago. 0 Replies 0 Likes
I would like to know how everyone'x belief has been changed by having CIDP and if or how you think this has helped or hurt you in your battle with CIDP. With me, it has strengthened and helped a lot. But before I go into how I want to share…Continue
Bye!
Started by Joe D in General. Last reply by Doggymama yesterday. 13 Replies 1 Like
I've just spent the past four days in Vanderbilt hospital. I went to the ER early Monday morning as my breathing had been worse and I had not been able to sleep lying down over the weekend. Sleeping in a chair wasn't working. I am home now waiting…Continue
Latest Activity
JanaC replied to Carli's discussion Symptoms"Not alone. My husband helps as much as he can. But he can't truly understand what its like. Even though he sees it every day he doesn't live it. I know it could be a lot worse, but I so want my life back or at least as much as I can…"
jeffrey posted a discussionYour belief and CIDP
I would like to know how everyone'x belief has been changed by having CIDP and if or how you think this has helped or hurt you in your battle with CIDP. With me, it has strengthened and helped a lot. But before I go into how I want to share…See More
ModeratorJohn "JC" Colyer left a comment for Heather
""Welcome Heather , I know you will connect with good people here that will offer you support and information, Stay Strong"
Top Discussions
| 1 |
SymptomsPosted by Carli on May 17, 2012 |
| 2 |
TiredPosted by Katie on May 17, 2012 |
| 3 |
What would you do to comfort a sick friend?Posted by Armando Abrero on May 9, 2012 |
| 4 |
Why symptoms come and goPosted by chirpybirdy on April 19, 2012 |
| 5 |
IVIG Roller coasterPosted by pat on May 17, 2012 |
Groups
-
-
Moderators Group
5 members
-
-
-
Videos
Blog.Bensfriends.org
Living With Ataxia - Online Support Group
New member says:
“Thank you for the warm welcome. Really hoping to be a big help to others on here.”
Living with Psoriatic Arthritis (PsA) - Online Support Group
New member says:
“Thank you for the welcome.”
Living with Psoriatic Arthritis (PsA) - Online Support Group
Top News Stories
Horror of Syrian massacre unfolds
The killings of more than 100 Syrian civilians, including nearly 50 children, provoked outrage around Syria and worldwide as horrific images of the bodies in Houla spread across the internet.Tropical Storm Beryl set for landfall tonight
A tropical storm warning is in effect from the Volusia-Brevard county line in Florida to Edisto Beach, South Carolina.Wendy's Life with CIDP
Week #5
Scroll down to read older posts first...Well, it certainly was a busy week! Sunday I stayed in and rested after a busy week and having to say goodbye to Eddie on Saturday. Then I got showered and dressed for my brother & sis in law coming to visit. We sat and chatted a bit then went too dinner at The Grand Lux. That is such a cool place, and good food. I had Asian Nachos, yumm-o! Comes with 8 nachos and rice in the middle. I ate 4 of the nachos, not much rice and had a banana pudding dessert. Leftovers on Monday were just delightful!
So, Monday I had the heart catheterization! After getting all prepped for it, a young woman doctor (fellow-in other words, beginner!) came in to talk to me about the procedure and explained what was going to happen and then an elderly doctor (about 80, I kid you not) came in to see me too and go over everything again). No one said who was going to be doing the actual procedure, but I found out soon enough. Then you go in this room with lots of funky looking machines that remind you of a good horror scientific movie scene! Well, maybe not that bad, but pretty intimidating, nonetheless. You lay on this skinny bed--slab might be a better definition, they even have to add arm holders on the sides so your arms just don't drape over the edge and wrap them to your sides and I even hooked my thumbs under my bottom so they wouldn't fall off (not my thumbs, but the arms off the bed)! Then they cover you with (thankfully warm) blankets and remove your beautiful gown! I have already been shaved on both sides of groin in case they need to move from one side to the other to do the procedure (we were able to stick to the right side). Next both doctors come in and the fellow is the one going to do the procedure with the elder by her side, whispering all the while. She did a great job in my opinion and I'm sure she will be a very good cardiologist or whatever when she comes through all her schooling. The needle pinch and lidocaine that burns a bit going in I'm sure is better than not having it at all but it didn't hurt as much as when the port catheter that was put in my neck for the stem cell harvest - location location location must have something to do with that reaction. Ok, so then they poke open to place the line wire to go up to the heart. That doesn't feel too bad and I was able to watch it on the tv. Once they got it to the heart the tvs and other machines moved around a lot so I didn't get to see as much. It felt a bit weird from time to time just moving around in there and when she pushed the dye in to color the blood to see the actual arteries I got a see a few of those shots, that looked really neat; like a tree with the roots going down in the ground. It took quite some time as I imagine there are a lot of places they have to check, so you lay there and lay there. During both my procedures I just kept asking Jesus to hold my hand and keep me calm - the song that came to my mind was "Jesus, take the wheel" by Carrie Underwood! In the end, though, all went well and the elder doctor says to me on his way out "Just stay away from stress tests!" That made me laugh! Later, the younger woman doctor reported to me that my heart looked beautiful and my arteries were like ones they don't get to see very often there! Yippee!! Good report!
So, the next procedure was on Wednesday to have my PICC line put in which is where all the meds, chemo, blood draws will come out of! Yea, no more needle sticks; I look like a pin cushion. What a story to tell about this whole situation. The man that brought me in was named Anthony and he was a such a blessing to me all morning. He had cancer and worked through that situation successfully with the Lord's help and we had a nice chat. But, while he was bringing me in to the "holding stall" so I shall call it, he was saying my name for identification purposes and a woman across the hall heard it and thought to herself, "I know that name!" She kept quiet a while during the time I was changing into the gown for the procedure but soon we were chatting and she said, I know you from facebook! Well, imagine my surprise at that! Her son was in for a procedure that was not going to be able to get done at that time and they had been there all morning. It turns out that we are friends because she has the same disease I do and she lives about an hour south of here. We chatted quite a bit and got some good hugs in too! We both are faith filled women and had some nice "God talk" too. We both felt it was meant for us to meet even though it was an inconvenience for and her son, but hopefully his situation will be able to get fixed so he can get what he needs and they learned a bit more about his problems.
The PICC line when in after having to try two different places (the 2nd one worked just fine; and what's one more poke in my arm anyway?). It bothered me most of all the things as it ends up right in the middle of your chest and feels funny. I lay on my left side to sleep mostly and I can really feel it, so I've had to adjust to that but last night I could actually lay on my left side fairly well and not notice it.
Okay, we are up to admission day, Thursday. Early day, 7:30am to be at hospital. I hope you all got to see the pictures of the room and my view of Lake Michigan. I think I have the best room on the floor! Room 1566 in the Prentice Women's Hospital. Top two floors are for transplant patients, rest of the hospital is for the babies!
Got started with Rituxan which is a immune suppressant so it doesn't fight the stuff coming in. In the evening I got a dizzy spell for about a 1/2 hour and the call button was across the room (we've learned to put it where I am sitting) but I knew the nurse was coming soon to give me my evening meds, so I just patiently waiting rather than risk getting up and falling. When she came in, I got up carefully and went to the bathroom to get ready for bed and laid down and went to sleep. All was well after that. I get those episodes every once in a while (about twice a month at no particular time or reason; meds, time of the month, whatever) so I don't know if it's CIDP or just me.
Friday, getting Rabbit ATG, which is a T cell suppressant. Since I woke at 3am this morning, I was looking forward to the Benedryl nap, but the Rabbit "juice" likes to bubble up and there were lots of beeps to keep me awake and the nurse kept having to come in and fix the line. Then when that was cleared up, about 6 times at least...Then the allergist folks came in to check to see if I was still allergic to Penicillin. I was very young diagnosed with that, and they say in about 10 years you can be over it and since it was probably over 40 years ago, the chances are good that I'm not anymore. Lots of pin pricks and jabs into skin (like the TB test) and that went on for about 2 hours, so needless to say, no nap for Wendy today! Hopefully, a good nights sleep coming! The good news is there was no reaction to the test, so they will be able to give me the meds they want to when I may need them from the penicillin family.
Today, Saturday is the day I start the chemo (Cytoxan) and lots of other drugs to keep away nausea, headaches, etc. The chemo is now in me and so is the Benedryl, so I'm getting sleepy again. I feel fine otherwise, but lots of folks say it after day # of chemo the reactions start, so we will see. I am so covered with prayer and I know God is right here with me; I will handle it all with His grace and help!
I'm gonna stop here and maybe take a nap! Talk to all you good folks soon, I hope!
God bless you all!
Wendy :)
Best of Ben's Friends
Living With CIDP - Online Support Group
New member says:
“Hi , Thank you for welcoming me to the group. I really need the support at this time. “
What is Best of Ben's Friends?
Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.
Please Like us on Facebook and follow Bens Friends on Tumblr and Twitter
Join Ben's Friends
Powered by BensFriends.org
This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
Please Be Kind & Use Appropriate Language
Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter are not allowed in the Chat Room.
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.
6. Please take all political opinions to the appropriate place on the internet.
Specific doctor or hospital names in a positive context are welcome.
Thanks for your cooperation.
To Support LivingWithCIDP.org, Click an Ad. Or Two.
"To Know the Joy of Giving"
Photos
Partners and Awards
© 2012 Created by BensFriends.org
