Hospital stay but now home and I got IVIG"S! YEAHHHHHHH
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June 22, 2009 at 12:31 am
Hello family! Thank-you so much for the prayers! Boy was last Monday a close call. Ended up in the ER very bad off and they did a MRI of the brain along with several other test and decided to call my Neurologist in. I got admitted into the hospital where he ran several test on me. Did another EMG/NCV/ Spinal and the nerve damage was progressing at a rapid rate. That crap is everywhere in my body. I now have permanent nerve damage in the carpul tunnel area and it goes all the way up my arms. Both feet are dead!They even tested my heart and lungs and did a blood tying on me. All kinds of test on Monday trying to figure out what was going on! I feel like a pin cushion right now.
One of my labs came back again showing my immune system being very low. I tested a very low IGG Antibody. So they had to build up my immune system some. They started me on IVIG’s Immunoglobulin Therapy!
I FINALLY GOT THE TREATMENT! YEAHHHHH~ But it was not that fun having and I was scared to death when they explained all the side effects to me! Seems like the drug can be very helpful but also for some patients it can be dangerous. But I had to except that any drug can be dangerous and as sick as I was I really didn’t care anymore!
My first treatment was for 5 hours and they gave me a tylenol along with Benedryl. Then started the infusion. I started getting the headache and when I get headaches regular tylenol does not work to well. They placed me the first few days also on pulse steroids and now I have a moon face. But the first infusion was scary for the headache ended up making me get sick thowing up. I was then given morphine for the headache and reglan for nausea.
Second day was much better and the third day got better and 4th and 5th day got better. After my 5th infusion I was then discharged Saturday and am now home on bedrest a few weeks. They have made arrangements with MEDPRO RX to have my Infusions done and they are going to start out 1 time a week this month, then every two weeks the second month and then once a month. Medpro RX is calling me on Monday to make the arrangements to handle the nursing care treatment for my infusions. My next infusion will only be for 4 hours instead of 5.It’s not going to be cheap doing this treatment. My insurance will only cover 80 percent on the in home infusions. If I go through Humana Right Source RX, I can get the drug much cheaper by Mail Order. A whole lot cheaper but finding a nurse that does this might not be so easy to do! Lets just say some things are covered and some things are not with my insurance! Medpro RX though handles everything but you end up paying alot out of pocket.
They put me on an anti seizure medicine called Ocycarbazeprine and gosh is that some strong stuff mixed with Gabapentin. It is knocking me flat out. I take it and then end up sleeping 5 hours. But it’s taking away that terrible nerve pain. I feel a little better since they started the IVIG’s but just wondering something here! When does it start healing the nerves?
I do feel more energetic but am not 100 percent back to normal so I guess this takes a little time for the treatments to start working.
They are also sending me to out patient PT in a few weeks giving me pool therapy to try and get my muscle strength built back up.Well I guess I will take my pills now and get knocked out again. Feels good though getting some sleep! Hugs
Linda H -
June 22, 2009 at 1:21 am
When I got home from the hospital my cats were having a Moo Moo! They were all over me giving me hugs and kissies! LOL! For two days now I have been laying in bed resting with all my kitties around me not even letting me go to the bathroom in peace. They won’t leave my site! LOL! I guess they missed their mommy!
I am glad to be back home! My only worry right now is I am praying this IVIG treatment works for me and I see no more problems. I’m ready for myself to get well again!
Good night family! Took that pill and I am getting ready to pass out asleep again
Linda H -
June 22, 2009 at 1:45 am
Good to hear from you Linda.
I was wondering about how you were doing.I am so happy that you are getting IVIG. 😀
The sleepyness from the pills does get better.
Remember you are plain worn out right now!Don’t forget to drink plenty of fluids before and during your treatments.
Really helps control the side effects. Also take the tylenol and benadryl even the day after your infusion if you aren’t feeling well.Take care, rest well
Rhonda -
June 22, 2009 at 6:01 am
Linda I’m glad to hear you are finally getting treatment but sorry that you had to get so bad to need it. As for your question – it takes a long time for nerves to heal. You probably feel better because the attack is being moderated but the nerves still have to grow back and that is very slow. I noticed improvements almost immediately because there was less inflammation and thus less messing with my nerves – but regrowing the myelin and regaining the sensation and ability to use my muscles is still ongoing. I’m not trying to discourage you, I just don’t want you thinking it’s not working when you need to give it several months before you write it off or get discouraged. 🙂
Julie
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June 22, 2009 at 10:06 am
Ohh! They had me drinking a ton of fliuds in the hospital. Plain water and I hate plain water. I noticed after those infusions I was peeing alot! Everytime I turned around I needed to go! Did notice the second and third day after having those infusions of feeling nausea and had the headache. Felt like I had the flu. But the high dose of pulse steroids helped relieve that some.
Today I am just starting to feel a little better with no headache or nausea.
Waiting for Medpro RX to call me this morning to arrange a time and day this week for my home infusion.A little nervous about having this done at home! Just hope I do okay and have no problems. I feel better though and don’t feel that nerve pain as much and no longer feeling the buzzing vibrating jiggling mess going on in my body like I was last week!
Just curious but any suggestions I should do while being at home having the therapy! Like would I be okay in my den sitting in a recliner having this done? What do you all do with the home infusions? Watch TV? Read…. have trash can ready just in case we get sick? LOL! Being in the hospital you feel a bit safer than being at home!
I guess Medpro RX is going to be getting alot of questions today when they call.
Hey family! I know this stuff is not cheap having. But GOD am I grateful that they had it for me when I needed it! I just wished they would have done this much sooner on me instead of letting me get so darn sick!I got a long recovery and no telling when my nerves start healing and getting better. But glad some of my symptoms have been relieved by this stuff. That oxycarbmezprine stuff though. Gosh that stuff is strong!
I am pretty sure it will eventually not make me so groggy but right now it’s strong!
Linda H -
June 22, 2009 at 11:00 am
Hi Linda, good to hear from you. Hang in there. if I was to get infusions at home i would do the same as i did at the in fusion center. I can’t to much reading because of the benedryl, so I would get my earphones and listen to brainwave generator (also called brainwave entrainment) sounds, either the one for relaxing alpha or sleep promoting delta waves. This effect only works with earphones. It’s very pleasant to listen to.
It may not be until we get to Oklahoma next week. We will be leaving here for good this Sunday, first to Denver for our daughter’s graduation from her 4 year medical residency program, then going east for our 3 months road trip. OH, BTW Carol just found a good neurologist for me at the University of Washington specializing in CIDP associated with antiMAG IgM (what I have). Hope he takes me. -
June 22, 2009 at 11:08 am
[SIZE=”4″]Linda,
I’m sorry to hear this. If you listen to any advise, let it be this, PLEASE DRINK & WALK A LOT WHILE GETTING THE INFUSIONS!!!! I couldn’t. I was in a wheelchair & ended up with blood clots in my lungs. After the session, head outside. I’m sure iced tea would be OK. I hate plain water also.[/SIZE] -
June 22, 2009 at 11:25 am
about getting IVIG at home rather than at the hospital especially!
I have done both and truly I much prefer having it done at home. Why? Be cause my dose of pre-meds is 3 benedryl and I don’t have to worry about driving home w/a benedryl fog! I nap on and off throughout the infusions and I have a very attentive and experienced home nurse who is very knowledgable] watching over me thru the whole process. I have had monthly infusions for 4 years at home without incident, while I did have an incident when infused at the hospital which had gone untended – The hospital KNOWS now what all they did wrong and has fixed it, but my trust isn’t there.
Also with my IVIG supplies [delivered the day before] is an emergency kit which I never had need to use. I’ve not had to use an ambulance for any IVIG emergencies at home, but have had other incidents and know I’ll be in the ER w/in 15 minutes of calling 911 if needed. [Knock wood quickly!]
As for your headaches & nausea [flu-like symptoms]? They are common side effects of infusions-usually helped by all that ‘hydration’ before starting and generally a combo of Benedryl and Tylenol. I’ve had tinkering w/doses of both and am now on the 3 benedryls – I can guarantee you that you shouldn’t have any sinus issues for at least a whole day after that! I have found that a good solid 2-3 hour nap after infusions helps clear the brain and body as well.
Lastly, around here, it’s usually the doctor’s office that does the initial set-up with the infusion company….pre-clearing it with the insurance company as well so, all you have to do is arrange the times and dates.
I have found IVIG has been a blessing in my life, one I fear if I had to do without would be disastrous backsliding and who knows what else?
Yes, the cost of IVIG is beyond dear – but there are programs sponsored by the IG companies that might be able to help out to some degree. To me it is worth it and comparatively cheaper ‘bang for the buck’ compared to other medications such as for cancer and the like.
Just keep in mind that it doesn’t work all the time for all people. I truly hope that it works a long time for you! You are long overdue for some relief.
Ask questions! There is a huge bunch of good people who have been around this block far longer than have I. People will help answer your concerns for sure.
Feel better and more better and soon! -
June 22, 2009 at 3:18 pm
Linda I am glad you got the IVIG I hope you get better real soon.
Sue
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June 22, 2009 at 5:54 pm
Hi Linda, I agree with With Hope. I love my home ivig, you can stay in youir pj’s if you want. I have a wonderful nurse that watches me like a hawk. I premed with 1 50mg. Benadryl and 2 Tylenol Ex Strength and half way through, I take Motrin 800 mg. Have her keep the rate slow, and your headaches should be gone. My infusion is 9 hours long, and I have music on the stereo, and I sleep as long as I want through the Benadryl fog.
Good luck to you. -
June 22, 2009 at 8:15 pm
Hi Linda,
Well, I guess we both needed to have a stay in the hospital to set us on the road to recovery! Welcome back, we missed you!
I’ve been on IVIG for a decade now, so I can probably answer any questions you may have about it… Just ask & I’ll be glad to help you based on my own experience. You’re fortunate that you’ll be getting your infusions at home! I used to, but then my insurance changed. (You already know about that whole story!) Now I have to drive 45 miles each way to UNC in order to get my infusions.
Let me add my voice to those who are telling you to hydrate! [B][I][U]Force fluids![/U][/I][/B] If you don’t like plain water (I don’t either) then make a BIG pitcher of Kool-Aid and DRINK, DRINK, DRINK! If you do this, it’ll help tremendously with those “flu-like” symptoms. IVIG is a [U]thick[/U] protein and thus it thickens your blood. That’s one reason for feeling lousy after the infusion.
Hydrating will also prevent getting kidney damage if you’re on it for a long time like I am.
Another reason for feeling lousy afterward could be that the IVIG was infused too fast. I used to get those “sledge-hammer” headaches too, but my body has now become used to getting IVIG. I no longer need to pre-med with Benadryl, and my maintenance rate tops out at 340ML/Hr.
As I said, please don’t hesitate to contact me if you have any other questions about getting IVIG.
Take Care,
Kevin
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June 23, 2009 at 1:20 am
I also use MedPro-those folks are wonderful. Ask all the questions you want and take notes. It helps.
They can send Zofran/Benedryl/Predisone or Solumedtrol IV for the nausea and side effects.I have them all here. When I start feeling sick the nurse can give me something in my IV tubing.
I broke down after 15 months and got a chest port but that’s another story. It took me quite a while to improve but I did.
I get in my comfy old big tee-shirt and shorts/winter pants considering the weather to relax. If I feel tired I drag the infusion pump back to my bedroom. I do get thirsty and guzzle my sweet tea. Some water but that was when I was going to the clinic.Sometimes rent movies or just read. It’s so much nicer at home.
Check out the other posts on “Home Infusions” for more info.
Good going. -
June 23, 2009 at 4:12 am
Medpro called today and they really were nice talking too. They needed directions to my home and so far everything is all being handled through my doctor and insurance. They are coming out next Monday! So I won’t be getting an Infusion this week but starting this coming Monday I will! So I have a week to wait! Whew! I am a bit nervous but excited at the same time! Excited in the hopes of getting better but scared too!
They told me they have a payment plan too just in case I can’t afford to pay everything at one time! So that helps! But the bill even after my insurance pays is going to be a whopper! Gosh this stuff is not cheap! But I don’t care anymore! I need the stuff! I want to get well and hope it works!
Norb! Glad to hear from you again! I have been wondering where you were at! But glad to see that you are enjoying a summer vacation before you finally settle down in your new home. I wish you my best and hope this move becomes a smooth an easy one for you!
The man at Medpro I talked with today sais that they handle everything. The Nurse, the IVIG’s and they get all the supplies to me. They even have a kit just in case you start having problems.
When I was in the hospital they told me the risk of having pulmonary edema along with menigitis type symptoms, possible heart failure. I was petrified! But I did pretty good at least I think, except for the first day where I ended up getting sick throwing up! Then the second day I was so frightened I would get sick again!
Maybe being at home in a more relaxing atmosphere will be better. I did notice that I would doze off alot when they gave me the infusions last week. Didn’t think of Benedryl making me sleepy. But then too that Oxycarbamezpine that they are giving me is knocking me flat on my face! I take the one pill and I sleep 5 hours!
Wake up and then it’s time for another pill and I sleep 5 more hours! That stuff is strong! I was told the first few weeks it will make me groggy and they were right on that one!
Thanks for all the advice in regards to home infusions! I am still a bit nervous having it at home but no need to be until the time comes. It might not be as bad having it here! Thanks family!
Just praying it works for me! So far so good though! My biggest fear right now is me getting that numbness and tingling mess again where it makes me sick like last week. I sure hope and pray I don’t ever see that again! I was just about ready to tell my husband to get in touch with my son and try to get him home. He’s in the Navy too and getting him home is like fighting tooth and nail.I actually thought I was dying.
And then I found out that he left out to Sea again! So I won’t hear from him for another 6 months. I hate him being in the Military. I worry about him alot! He is on a Nuclear Submarine and when they leave Port they stay out to Sea for 6 months. This stuff with Korea going on too has me on pins and needles. I never know where he is at until he contacts me and then he tells me his experience and where he was at! He always buys me something when they land in a Port somewhere! And he has been to alot of countries! I a really prous of him though! Well I better hit the sack! Have a good night family!
Hugs
Linda H -
June 23, 2009 at 7:00 am
HI Linda,
Glad to hear the news you are going onto the ivig. There is a good chance the headache and nausea won’t be as bad the second time. I had it bad the first time with severe nausea. Now I have adjusted and get none. It may be that on the first doses alot of work gets done and that makes you sick or whatever. Like with the Rituxan.
Good Luck!–tim–
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June 23, 2009 at 8:23 am
Hi Tim! I think that Rituxan was worse! That really made me sick! This was not as bad as the Rituxan was. But it was not fun either! My first two days was the worst having it done. Being the first day as getting me really scared. Second day was a little less stressful on me for they had the right meds and doses to correct the problems. The other 3 days I didn’t do as bad!
I think I will do okay! Kind of bad though having a treatment that makes you feel bad a few days after having it. But then it feels good when you start feeling better!
Just wished they would have started this earlier instead of waiting like they did. My poor arms are all messed up. I tried to open up a jar of pickles yesterday and beat the poor jar to death and still couldn’t open it! My writing looks like chicken scratch. It really messed me up nerve damage wise. And it takes a long time for those nerves to heal back!
I actually think these doctors and insurance companies have a criteria to go by or something. Letting the patient get to a point of getting so sick then they do treatment! LOL!
A part of me has alot of anger towards that too! Instead of going ahead and doing treatment they just let those nerves die off one by one makin us get weaker and weaker to the point we are crawling then they do treatment!
Hugs
Linda H
No telling how long I will be having no arm strength! Legs too! -
June 23, 2009 at 9:39 am
Yes, it sucks that we all have suffered until we get treatment at some level.
When there is more than 1 thing going on, they really get hesitant. I believe it was your case. Its sad. I hope you do well.
From what I found, the damaged that occurs just prior to the treatment, may become better first. I am still waiting on things that were wrong 2-3 years before my first treatment. Dr Brown said that what you get back in roughly the first year of sucessful treatment is pretty much what you’ll have. the remainder just takes too long, and any yo/yo in symtoms cancels any gains there.
This health care reform has me freakin, I’ll tell ya.
Glad to hear your optimism, you are a fighter to say the least.
Best Wishes to ya.–tim– -
June 25, 2009 at 4:13 am
Hi Ms Linda,
I have recovered so much within the first 18 months on intensive IVIG-6 monthly. Here it is year 4 and where I am physically is where I’ll stay. I can say CIDP does morph-changes like the weather.
Silly pain doctor yesterday checking my legs for reflexes when my ENTIRE body is affected. He then said “How long will you have to have these infusions”.
Once again as usual I replied forever-forever.Put that in my chart, silly man.Just a note. My kitty loves to chew on the IV tubing and the blue drip stopper that hangs off it too. So watch out for your playful felines seeing this tempting toy dragging by them. Mine even attacks it when I’m in bed. Keep an eye on those furry rascals.
The nurses must wear fresh gloves when inserting your IV. The area needs to be rubbed well with alcohol/antiseptic.When you start to feel ill tell them immediately as the infusion rate can be lowered, medicine given by the IV and maybe you’ll need to lay down.
Some doctors prescribe a relaxant pill like Ativan to make you less anxious and puts you to sleep. At the clinic we got that in our IV for muscle spasms/jitters/to relax and nodded off. It’s not allowed to be given in IV at home for some reason. Benadryl can knock your socks off but made me hung over and very thirsty.Sometimes asking for half the dose might help then if that is working you can request the second half.
There are one or two Medicare Part D plans that cover the cost rather well.
Remember you’re in charge of the infusion rate and the nurses gotta listen to ya.
Best of luck. -
June 25, 2009 at 4:23 am
Quick note. Hospital nurses do not know how to administer IVIG. I bet you got so sick because they had the infusion rate going up to high to fast.
It must be slowly bumped up.
They was an excellent post about 2 months ago on infusion rates.
Check old posts on Infusion Rates and Home Health Care.I got really sick after the infusions for some time. Predisone made me feel like one wired woman. I had to ask for migraine/nausea meds to take at home.
Be good to yourself after each one and rest up in a cool room with little noise.
The kitties will be more than happy to keep you company. -
June 25, 2009 at 8:01 am
That might be what happened to me in the hospital with my first infusion. The second day was not as bad and I had a different nurse doing the infusion. She was pretty good about giving them and seemed to know what to do.
Thanks for the advice! Yep! I have Humana Medicare! I had two options. Buy them giving me IVIG in the hospital they covered this Part B! So that made the cost a little bit cheaper because I was admitted.
I think now that Humana is covering this Part D. The man at Medpro said that would be my better bet cost wise. It would put me in the Catastrophic Phase and I would only have to pay 5 percent of the bill. But I need to find out about the nursing bill and supplies!
He forgot to mention that! And I read a posting in here that many are having to pay that part of the bill!
That is what they are doing this week. Talking with my insurance and then plan on calling me to let me know the details.Yes Tim! I agree with you about this new healthcare reform But something has to get done. My husband has a good paying job and had great benefits last year. But the auto market has been in a slump. In order for my husband to not lose his job last year his boss took away healthcare! So now my husband is uninsured! I used to be on his insurance but when he got this job and got insurance they denied me on his application because of my preexisting condition.
I can’t even get life insurance and that’s not right! The thing that scares me is me having a problem and it be something else different requiring more testing and the doctors tell me it’s what I have already causing my life to be in danger! Letting the doctors make the call helping to save healthcare cost!
And then what will happen to me? I am very scared but there are so many out there that can’t get healthcare and need it badly! So I guess we have to give it a shot or we may see more without any healthcare at all! I personally think they over charge anyway in these hospitals. Last year my healthcare cost was over $100000.00 Now that is alot of money! That Rheumatologist I saw at Pitt Medical Center just for one visit ended up costing $457.00 and then the labs he ordered landed another $2000.00. One visit to that place ended up costing $2457.00.
I got stuck owing after the insurance paid $357.00 not to mention the copays that I have to pay before being seen by my other doctors! Last month alone I landed myself with over $600.00 in medical bills to pay! It’s rediculious! Totally rediculious! My husband and I this past year have been forking out $500.00 a month on medical bills! Thats a car payment that we don’t have a car for! LOL!
Hugs
Linda H -
June 25, 2009 at 5:59 pm
MedPro pays for all my home health nurses and all medical supplies-its part of the IVIG price. I get mine through my Pharmacy Benefits.The top guys there are really knowledgeable about what medical insurances cover what. The nurses keep track of what needs to be ordered for next month.I don’t know how yours will be.
MedPro called yesterday to tell me what day FedX was bringing it all by.
Your first box will be huge-may be two boxes. Mine contained the parts for infusion pump, drip pole and wheel base.I couldn’t drag them in as one was 70 pounds”’ I had to make the FedX guy do that if I can catch him.I had to buy a large 3 drawer plastic cabinet to hold the supplies.I recycle all the card box and packing plus the empty IVIG/Sterile water bottle massive card box boxes.
July 1 , 2009 my State Employee pharmacy that covers IVIG is going to start charging me $ 3-500.00 a month extra plus a deductible. Being sick isn’t cheap and we have a chronic illness.
Let’s hope for the best. -
June 26, 2009 at 12:23 am
I called my insurance today to try and find out the coverage and the one person I talked to didn’t even know what IVIG’s were! 😡 I had to explain what the procedure was! She put me on hold for over 25 minutes trying to find out what I needed done! LOL!
My best bet is to let everybody handle things and then I go from there. Limecat! Is your Medpro Office in Raleigh? That is where mine is coming from. The Raleigh Office. Not sure if they have more than 1 office though. Like Eastern NC and Western NC or just maybe one office. I’m supposed to be getting a package tomorrow along with a bunch of paperwork to fill out before the nurse arrives.
She is going to set up everything for me and explain the entire details when she gets here! They said my first home infusion will take about 5 hours but then another hour for setting up and explaining everything to me.I’m nervous but I think I will be okay. Might get my mom over here too stay with me while having the treatment done at least this first time!
Thanks for all the info! This is scary but new to me making me all skitzo! LOL! Hugs
Linda H -
June 27, 2009 at 2:48 am
MedPro in Raleigh only office and “Andy” the top guy to ask questions.Call him about medical coverage. See if your nurses also being paid by them like mine are. All my tubing, gloves, alcohol wipes. etc. included in IVIG package price. MedPro has pharmacy and nurse to answer your questions about any side effects or concerns at the office. They are your liaison to your nurses sent to the house.If you don’t like what your home health nurse does let them know.
The nurse who comes will be really busy setting up the pump/chart, seeing how well it works and figuring out what to do with all the supplies. Make sure you and her check all the supplies were sent. Each shipment has a list of them.
I go tons of fluid bags, bags of tiny bottles full of IV meds like Zofram/Benadryl (put they in small Tupperware for separating/protection) and boxes of the IVIG. Be careful-this stuff is heavy. Think about getting some kind of huge plastic covered box or organizer for all of it. Why I got sent 2 cart/wheel sets I don’t know.
Oh, was I nervous too. I cleaned my house like some dignitary was coming. My guest bathroom sparkled. Wanted it to be really clean as nurse was using it AND messing with my IV’s.It should go smoothly. Of course my cat jumped on everything and when the nurses leave any lunch unattended he’s in it. One nurse caught him chewing on her wrapped sandwich she just put on a table.
When you start feeling nauseous/dizzy let the nurse IMMEDIATELY. She should turn the pump rate down and administer some meds. Some nurses may will try to get you done too quickly and that’s’ not right. Okay?? I rent movies to watch, read newspaper, make snacks, take a nap or do some hand sewing. Just be yourself. When you’re tired rest. They’re used to us cat napping. It’s hard to have someone who don’t know in the house. Most are very friendly.
PM me with any special questions.
Best of luck.
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