Husband diagnosed with GBS – Post IVIG but still declining
March 2, 2011 at 12:30 am
My husband was diagnosed with GBS about a week and half ago. Friday night he started the first of 5 IVIG treatments. At the time he could still walk. Since that time, his ability to walk as decreased, he now can hardly get out of a chair. I see him getting weaker every day. It has been a week since the last IVIG treatment.
Should I be alarmed? His symptoms came on slowly over 3 weeks. He sleeps a lot. His spirits are much better than mine. I am worried that he is going to keep going downhill.
Have others seen this? Help me, I am heartbroken. What can I do for him?
Then on top of this, his dad fell this weekend and broke his hip.
And, is there anyone who has been through this who would be willing to talk with us?
Sorry for the duplicate post…I just need advise….
AnonymousMarch 2, 2011 at 7:41 am
Many doctor’s will say that GBS will take its course. The IVIG is not a cure but a shock to thee immune system to help stop the attack to the nerves. The nerves will take time to heal. We have all been where your husband is now and rest and sleep, if it will come is the best medicine. I have sent you a private message with my phone so if you like you may call and we can talk. I know this is hard for your husband and for you, so please keep strong and support each other. Good luck.
March 2, 2011 at 8:53 am
These will be grim days indeed……good thing is your husband is being monitored. I dont think GBS gives you a choice with what damage it brings. We all hope it stops soon. Please know that IVIG and the whole hospital experience is VERY draining, so with hope he will feel a bit better when away from all that.
Keep positive! It may seem crazy (or obvious) but depression and fear are ever-present during the acute phase.
Keep us posted so we can offer support throughout his and your ordeal. I sent my number by private message
AnonymousMarch 2, 2011 at 9:40 am
“[B][/B]GBS about a week and half ago. Friday night he started the first of 5 IVIG treatments. At the time he could still walk. Since that time, his ability to walk as decreased, he now can hardly get out of a chair. I see him getting weaker every day. It has been a week since the last IVIG treatment.[B][/B]”
About how old is your husband?
There is an excellent paper put out in the gbs newsletter that talked about age vs recovery, etc. You can view the articles online on this website.
We all are wishing for a speedy recovery for him. When I came down with GBS, 11/07, it came on a little quicker than your husbands. The symptoms and attacks ran their course, and recovery began. That said, your husband could start seeing recovery soon. It’s possible they’ll administer additional or different treatments if he doesn’t respond to the ivig. It’s a long road back, but with time, he will get there. I feel I’m still recovering, with minor setbacks from time to time. Keep us updated or email questions.
AnonymousMarch 3, 2011 at 5:54 pm
Patty my heart goes out to both of you. It does get better although please be prepared for possibly a long journey. I was diagnosed with GBS last May 17th and am making good progress. But it is not a walk in the park.
Please feel free to email or call me– wayne.bowyerATgmail.com
March 3, 2011 at 9:22 pm
While I was in Sacred Heart, Spokane…my GBS wasn’t diagnosed for a few days.. went in on the 7th of Feb, diagnosed on 10th, started IVIG for two days, didn’t work, went into respiratory arrest and was trached and put in ICU. Got plasma-pherisis
) and it worked…peaked at 3 weeks..but was totally paralyzed from eyes to toes..didn’t awake until I was transferred to Idaho Advanced care Hospital…and then only after another 10 days of living inside my head hallucinating…
In your husbands case..it looks like more aggressive work needs to be done, but don’t worry…as long as you have a good neurologist (I had 5)… you should be fine…as long as they get a bit more into it..and your almost or over halfway to peak…keep all informed and remember…I am 65 years sold and survived this with some difficulty… but I am still a junior here on the forum. Others will most certainly have opinions…and they may well correct me…
March 4, 2011 at 2:33 am
Well, things are not any better. He is still declining. Marshall is 56 years old. I am going to be calling the doctors tomorrow morning first thing. He has declined enough to where staying at home is not an option.
He fell and I couldn’t get him up. I called a friend who helped me get him into bed. So something has to happen. I called the after hours doctor tonight. What an idiot. He isn’t our normal doctor. He asked is this an emergency. Lets see, he can’t walk, I can’t get him to the hospital, what do you think!
I don’t know if I should be getting him to the emergency room, he is breathing fine. Is it ok to wait until morning. I just don’t know what to do.
AnonymousMarch 4, 2011 at 9:43 am
I am so sorry for the difficulty you are having – it must be as hard on you as it is him. In my non-professional opinion he should be in the hospital – or a physical re-hab at the very least. If I were in your shoes I would get him to the Emergency Room now & forget the current Dr. That is just my opinion. Good luck with whatever choices you need to make.
March 4, 2011 at 12:25 pm
My advice here agrees with last poster. I am surprised he hasn’t been in hospital. He needs a specialist. Make sure to take him in on ER basis…tell the worst so the wait isn’t long. Make sure we told you to tell them he needs a neurologist. Keep records of names, doctors and times as well as procedures and medications….just use pencil and paper and stick ith us. There are plenty here who can help guide you.
AnonymousMarch 4, 2011 at 3:13 pm
Hello Pattsy-your husband’s situation sounds very much like my own and others except for 2 things….1) I was given IVIG after becoming unable to walk. 2)There was a lot of pain which became very severe and began during the awkward stage but peaked about a day after totally losing strength and after IVIG was started.
Please keep a close eye on the pain level-it usually (in my case–a 2 timer) begins in the lower back, like a regular backache, but spreads to the legs, hips and other areas and can get very severe. It requires powerful drugs and they need to be administered in the hospital. Also keep a close eye on his blood pressure as GBS can cause it to rise quite dramatically…this also requires monitoring.
Other things to watch for are constipation as well as difficulty in releasing the bladder….these problems are caused by the muscles not getting the message.
I am really hoping that because you did not mention any of those symptoms that he is actually recovering….maybe just differently than others.
March 5, 2011 at 12:31 am
Got back to the neurologist today. He immediately got my husband admitted to the hospital and is going to start plasma exchange.
I feel much better now that he is in a safe place and getting treated.
One of the nurses suggested that we might think about heading down to Seattle if this doesn’t improve things. Bellingham is a relatively small community so the doctors don’t see this all that often.
Does anyone have knowledge of a neurologist they might recommend in the Seattle area?
Thanks to everyone for the help in the last 24 hours. If the doctor didn’t react like he did, I was going to get my husband to the ER and not go away.
AnonymousMarch 5, 2011 at 6:45 am
I’m very glad Marshall now has constant medical care! I know you must be breathing a bit easier. But I know it is still very hard on you. I can only try to imagine what my wife went thru last summer when I was where your husband is now.
Still praying for you both.
March 5, 2011 at 8:06 am
You have received lots of good advice here from people who have been through this rotten illness. He belonged in hospital for starters with GBS (AIDP). This illness gets worse before it gets better and he must be kept under close observation. I was in intensive care for the first three weeks because they have to watch for complications, like respiratory failure. Even with close observation I got pneumonia after three weeks which laid me up another nine weeks breathing with a ventilator. BUT EVERYONE IS DIFFERENT. My experience is mine alone and I was 11 years older than your husband when I got it. The treatment I received was IVIG and the Plasmapheresis, but the illness rolled over the treatment like a steamroller. There is one thing you must adjust to quickly and that is the fact that there is no quick fix for this illness. Some recover quicker than others.There are mild, ,medium and severe cases of this illness and I was the last one. I pray he is the first one. Some other thoughts:
1. Start asking about a good neurologist. Usually, fellow doctors know the best names.
2. When dealing with people treating your husband, ask if they have treated GBS in the past?
3. Do not allow hm to attempt to get up unassisted to go to the bathroom, etc. Never.
4. Take things a day at a time.
5. Call the GBS Foundation and get the name of a former patient liaison in your area who will act as support for you and your husband. This person will visit your husband as well.
6. Be strong, because the experience for all of us shows that with time you get better – some 70 -80 % make full recovery.
7. Start reviewing your insurance matters. Find out how many rehab days are covered.
8. Carry a pad and pen always for notes you want to review later on. Get the number of the nursing station to check on him while you are away.
9. Establish a relationship with the Social Services Department. Get the name and number of that person as your contact and advisor on different matters like medical coverage, rehab facilities with a good rating, etc.
10. Pace yourself and don’t burn yourself out. A day at a time.
11. Don’t be frightened at the condition in the beginning weeks. The illness runs its initial damage for 3 weeks or so. Everyone is different as to the extent of damage. I could not open the flap of a cell phone and was only able to move a thumb.
12. Most caregivers are good. But watch them all and complain if you see something not right.
13. Read the GBS handbook on this illness – call for it. You will see that recovery can be between 6 months to two years or more as stated in that handbook.
14. Join GBS and get the back issues of the newsletters – my own story is in the DEC 09 issue. Be strong, especially in front of him.
March 5, 2011 at 10:48 am
Update – 3/6/2011
We had the first plasma exchange yesterday. They had to use 3 filters and it took around 4 1/2 hours due to the filters clogging. Pulled out 3.8 liters of plasma. Gave him a break today and have the second plasma exchange scheduled for tomorrow. He was cold and had a quesy stomach, but seemed to tolerate it pretty well.
Interesting about today, he didn’t take a nap. For the last 2+ weeks he has been sleeping absolutely every chance he gets. So, not wanting to take a nap today was wonderful. His headache was better and the back ache was better. No change in leg strength, but considering what GBS does, I wouldn’t expect a change until the nerve sheathing has a chance to start rebuilding.
Thanks again for everyone who helped give me strength to get through this!!!!!!
Thanks for the advise. I had wanted to try and find someone in the area who has been though it to talk with. I will contact the foundation and try to get someone located. That helps so much to talk with others who have been through it.
We are quite familiar with nursing facilities in the area. We took care of our neighbor who didn’t have any family. With her we got to know just about every nursing facility in our community.
Now that he is getting the proper care, yes I am breathing much easier. We both know that 1, 2 or 3 year recoveries are not really that long. I broke my back just about 10 years ago in a 70 mph rollover accident on the interstate when some idiot lost control of his care and hit me. That would be an idiot without insurance. It took me 9 months to be able to walk more than about 20 feet. At 8 years I was still limited. Then something changed. Since 8 years, I have now run two half marathons. And I was never a runner before my accident. So, we are looking at my recovery and both of us have stated that 3 or 4 years really isn’t that long. Much easier to look back from this side of the calendar. So, we have been there, done that and know to be patient.
The understanding we now have for each other is so helpful. Marrshall understands the depression I had from my accident. I understand him taking over absolutely everything in our lives without ever complaining once. So, I think now that we have him being cared for properly, we are ok. We have some understanding of the other is going through.
He is am amazingly strong guy and even if he doesn’t come back 100%, we can accept the change. We know to focus on what he will be able to do!
AnonymousApril 20, 2011 at 8:25 am
I read through your postings and I was going through the same thing not too long ago. As you mentioned, its amazing what a little time does when looking back. My wife received ivig and was still going downhill….a few days after the treatment of ivig she was on a ventilator.
I think your husbands positive outlook and your past experience with recovery will help tremendously in his treatment and recovery. My wife was blessed in her recovery as she has started to jog again…a few miles 3 nights a week. The only residuals are funny feeling when you touch her lower legs a feet and the occasional day of exhaustion.
Just wanted to pass on a little hope.
AnonymousApril 21, 2011 at 5:52 pm
I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.
I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.
I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.
My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.
PS – Feel free to call me at (334) 324-9687 if it might be easier than posting. A basic idea of what is acceptable payment from a large insurance provider is all that I need to move forward/negotiate with a sense of purposeful accountability.
AnonymousApril 28, 2011 at 10:58 am
Sounds like we are running step for step in this race. You started 2 weeks before we did. Went through the plasma wash 5 rounds with no improvement. We are now on to the IVIG treatment. Things are moving down slowly for us. Not on a vent but he has lost arms and legs and neck. Bowels and intestines dont work but lungs are strong. I keep waiting for it to hit bottom so we can focus on the long ride back up. I dread walking into the hospital room every evening to see what muscles are gone now. I usualy hear from him by this time but I have not today. I have to wonder if he can not put the phone to his ear today. Its a big fast game of wait and see from what Ive read. Just hang i there. I like the one post about not letting them see the stress we carry. I can tell you find the small little silly things to get you through. Look close and what he is not telling you that give him comfort. It took me a week to figure out why he looked at my feet everyday when i came in. He listens for my shoes to click clack on the floor as I come down the hall. ( I always wear heels) so now rain or shine I have a pairs of super high spiky heels what I keep in the car and change in the elevator just to see him smile. Good luck hang in and keep us updated.
May 28, 2011 at 11:02 am
Marshall saw a specialist in Seattle about 10 weeks ago. Started him on weekly ivig at a higher dose and with specific brands that do not have sugars (I can’t remember the right term) which he has found to cause fewer reactions.
After 5 weeks of treatment we saw only minimal progress. 6 weeks we were discouraged. 7 weeks, the arms were getting stronger. At 8 weeks, we are amazed. His progress is doubling every day. Still not on his feet. Just starting to get some movement in the legs. But, we are hopeful he can come home in a few weeks.
We go back to Seattle to UW on June9th. I will post an update then.
May 29, 2011 at 7:48 am
Par for the course. I don’t know where he is but you have to make sure they monitor all his vital functions. After IVIG, I received Plasmapheresis – ask them about that treatment. Anyone involved with this illness soon finds out that you are in this for the long haul: 6 months to two years or more. PATIENCE is the key. It was my hardest challenge. There are mild, medium, and severe cases. Let’s hope he is the first one.
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