2 months and 1 week in ICU, ventilator and paralyzed.
AnonymousJune 3, 2010 at 12:13 pm
Hi everyone I am Veronica, the sister of Miguel who has GBS.
He just turned 49 and has been since March 26 2010 in a hospital in Mexico City totally paralyzed and with the ventilator since the first week.
He just moves his head and eyes. Sometimes he is very depressed and he has infections in his lounges a lot.
Everything started with a bacteria that got into his liver. For 3 weeks it looked like a Hepatitis. He was yellow, lots of fatigue and no apetite. After lab tests the Dr. said it was not Hepatitis and he did not know what was it. One day he started feeling numbness, he felt down when he was going to take a shower and that night was hospitalyzed and diagnosed with GBS. He was totally paralyzed in less than 24 hrs. He got the plasmapheresis treatment. Nothing seems to work but a lot of faith and prayers.
Anyway, I just want to know stories of people that went to a similar situation, so I can let him know that there is still hope. Thank you all.
I feel for all of you, and I am so happy for the ones who had recovered and so proud for the ones that still working on their recovery with faith and hope.
AnonymousJune 3, 2010 at 6:52 pm
And I wish I could say it gets easier? But, these things are well, all goes haywire?
I agree with Rhonda? That IF key tests are done, they could get IVIG into him very soon… But different countries, different doctors and different hospitals, CAN make this difficult to beyond awkward?
IF I were you? I’d find the BEST IMMUNE SPECIALIST in your country and go to bat! You know what I mean. It’s your best bet? And, IF you need to use the press to do it? DO IT! NOW!
I also suggest you web up everything on ‘Hepatitis’ and “GBS’ as well? So you can address any off base question asked.. You are going to have to be an EXPERT? But it’s necessary. And, my goodness! My heart is crying for you and your Brother!
It is very hard to to Tough and Smart at such times? BUT? YOU are his advocate! Soo? You’ve got to be tough and smart and INFORMED for him.
Veronica? He’s IN my prayer list! Guaranteed, untill, I learn better? HUGS Hope and future!
June 4, 2010 at 9:28 am
Ask his Neurologist about IVIG treatment – has it been done? Find out. If not, ask why. Next, is his emotional and mental support. Explain to him that as time goes by he will improve. Help him adjust to the fact that this is generally a long term recovery. Long term means 6 months to two years, but he must take a day at a time. Gather every emotional support for him such as friends and family and clergy if religious. Some people need anti-depressants to cope. Give him tender loving care – keep him pain free. Keep him worry free about his personal life, his home, his bills, his everything. Tell him not to worry. Stay on top of the staff who cares for him – make sure they are treeating him well. Time and tender care. If you have a laptop computer – go on You Tube and enter Guillain Barre. There are many stories on there about GBS. I cannot emphasize strongly enough that emotional support is primary while he fights this battle. You sound like a great sister. God bless you.
AnonymousJune 4, 2010 at 6:56 pm
My hope is that your Miguel gets treatment and that it helps. Do keep in mind that it works for 40-60% of folks, the others? It doesn’t do anything for. Please keep us updated on how things are going-both good and bad? We’ve heard them all and have dealt with them as well.
HOPE AND GOOD THINGS for the future, and SOON!
June 5, 2010 at 10:44 pm
Keep telling him he will come out of it. I still have flashbacks of my medical induced coma four years ago. The nightmares vary from being frozen, then being thawed out, then the next day being in the semi fetal position around a wood stove, while a fire is built in it, and being unable to move any parts of your body, you’re cooked alive, then brought back down into the hospital bed. I feel that the only thing that kept me from going off the deep end was my wife always telling me that I would some day be able to leave the hospital, as no one lives in a hospital. They told me later that there were times that I would sweat profusely, even with a fan blowing directly on me.
AnonymousJune 6, 2010 at 1:08 am
Yes there is lots of hope to give him. I came down with severe GBS just before I turned 49 and was on a ventilator for 8 weeks, first in Kenya and then in South Africa. My wife was very important in getting me over the first stage of surviving in an ICU with infections, breathing problems and all that. How is he communicating with you? We had a very good system of communicating using a board since all I could do was to move my eyes, not even my head very much. It is so important that he is able to communicate about problems he has or things he needs. I sent a post about that awhile ago, but I can send it again.
I hope that his breathing is improving. It really took me a long time to gain breathing strength but it came back. The rest of the recovery is slow as everyone has said, but many people have recovered significantly, if not always completely. I gained muscle and function every week after the ventilator was no longer needed and 2 and a half years later, I am still continuing to improve with the legs. This all takes dedication but also patience. So you can tell him that people his same age have recovered!
AnonymousJune 8, 2010 at 12:29 pm
My mom asked about IVIG and yes, they offered to us but is very expensive and we can’t afford it. He is in a public hospital but we have to pay all the medication and a portion of hospital. We have a crazy bill so far.
Anyway, Miguel is doing a little better he is moving his head and neck now, which we believe is a lot of progress since he was just blinking his eyes not along time ago. We got the communication cards from GBS foundation and I translated them in Spanish so he can use them with the people in the hospital. I just hope he starts breathing on his own so, he can focus on his physical recovery. He has not have Neumonia in a few weeks now which is good.
Thanks for all your comments and good luck!
Talk to you soon!
AnonymousJune 10, 2010 at 2:15 pm
My mom had appointment with the Director of Neurology at the hospital. He was really nice and visit my brother Miguel. He checked medical history and came up with a diagnostic of Lupus. That was the first thing he got and that is why he is not progressing because of all this infection cause by it. Kind of crazy that they did not found it before. We are glad they are going to treat it now and do another plasmapheresis. Hopefully Miguel will get better. Had anyone of you been in the hospital that long, now is 2 months and 2 weeks, is crazy!
have a nice day
June 10, 2010 at 11:24 pm
In my case, I was in the hospital for 4 months, 2 weeks, and released on my 65’th birthday. I was on the respirator for over 2 months of it. So does he have GBS, Lupus, or both?
June 10, 2010 at 11:37 pm
I forgot to mention that as I was coming out of the induced coma, and still paralyzed from head to toe, my brain conjured up a fake pair of arms and legs, which I could use, since I was unable to move my real extremities. Maybe it was so in case the hospital caught fire, I could crawl out on all fours if I just concentrated hard enough, who knows?
AnonymousJune 26, 2010 at 10:55 am
Hi everyone, I just want to let you know that Miguel is doing a little better. today t has been 3 months in the hospital , still intensive care. Miguel had some treatment for lupus and also some treatments of plasmapheresis. He is in a great mood and moving perfectly his head, neck and now shoulders.He wants to talk all the time and he is very possitive and feeling much better. It is been a long time for him but it looks that by treating the lupus now the GBS is getting some recovery. He is still in a ventilator but he had record some attempts of breathing on his own and breathing rhythm. The dr. said is very good. Hopefully he will start breathing on his own soon.
Does somebody has lupus and GBS? Let me know anything you think can help in his recovery.
AnonymousJune 26, 2010 at 11:47 am
I’m glad to read that Miguel is improving!!! He appears to be on his way to recovering and hopefully will start breathing on his own soon.
I wish I could give you information regarding having GBS & Lupus, however, as both are autoimmunue disorders, I’m sure it isn’t unheard of to have both.
Have you tried typing Lupus in the search function? Perhaps you’ll find a post from someone who had both.
Take care and stay strong!!
AnonymousJune 29, 2010 at 12:16 pm
Miguel has shown a lot of recovery this last 2 weeks after they found the Lupus and treated it. He is starting to move his arms and has recorded many attempts of breathing on his own. Thank GOD.
Guys do you usually need a wheelchair for recovery wright?
I am going in 3 weeks to see him and I want to see if I bring one from the states probably cheaper than in Mexico.
Hope you all are doing good.
Any tips or things that he is going to need for his physical recovery?
June 29, 2010 at 10:56 pm
Every case is different for the need of a wheelchair. In my case, my hospital stay was 4 and a half months including a month and a half in the hospital therapy, so that I needed a wheel chair for only 2 weeks after returning home.
AnonymousJuly 13, 2010 at 8:50 pm
I am so excited because I am going to Mexico to see my brother. He is doing much better. He still in the ventilator though, He has to breath on his own soon so he can get out of the hospital. It is been 3 and 1/2 months already! Wow! this disease is really crazy.
I know, he is finally moving his upper body, no perfect but he is improving day by day. When I am there with him, we will write some concerns that he would like to ask to you guys.
It is so uncertain the hope that the doctors can give. Has anyone be in a hospital this long? and totally paralized like him for this long? How long it took you to walk again Joe Martin? It looks like you are the one that has the most similar case.
Thank all, and I will be in touch soon with Miguel by my side!
July 14, 2010 at 8:47 pm
It was about 6 months from onset that I was able to walk unaided without a wheelchair, walker, or cane. On of my biggest moments was when the physical therapist came in one day, when I had movement only in my upper extremities, helped me sit up on the side of the bed, and was able to lift me up in a standing position, then have me lock both my knees, or at least try to lock them. He said it was a test to see how much the muscles were coming back.The hardest part was sitting back down and trying not to fall over backwards on the bed.
Another experience is the sling lift, which they slide this rope sling under you, then get this portable hoisting machine which lifts you out of bed and sets you in a chair, to get you in an upright position to aide you in recovery. Also, it enabled you to get a bath in the shower room instead of a sponge bath in bed.
Hopefully, your brother will get in-hospital therapy, rather than being sent home or put into a temp nursing home, as the therapy is more intense and recovery is faster.
AnonymousJuly 29, 2010 at 11:53 am
Hi guys! just want to tell you that I have been with Miguel the last 2 weeks and he is recovering by the minute after the 2nd Plasma and the treatment of Lupus. He is now moving a lot. He gets very tired easaly and he is weak but he is moving all his upper body. He started miving his legs too. the only problem is that he is still in the ventilator. I have been talking with him about the forums and he will get in touch soon. He needs a computer to do that. I got him a dvd player and he is entertaining himself with a different movie everyday. He is so happy to finally see results.
I will keep you posted, thanks again to all!
AnonymousJuly 31, 2010 at 12:05 am
That is great news.
I hope the doctors are trying to wean him off of the ventilator?
It took my quite awhile to get off the ventilator. Believe it or not I actually forgot how to breathe properly. A speech therapist was hugely important to me as she helped me to get in a rhythm in my breathing and did some exercises with me to help build up the muscle strength of the diaphram.
AnonymousAugust 14, 2010 at 9:11 pm
Hello my friends!
just talk to my Mom, Miguel sat yesterday on the chair for the first time in 4 1/2 months. They are disconnecting him from the ventilator during the day and back on at night now for the last 2 days. It is amazing, He is doing so good. The therapist is focusing in his legs now, so he can stand up and walk soon!!!All good news!
AnonymousAugust 15, 2010 at 7:53 pm
I’m a bit confused about your last post, as to whether he has GBS or lupus or both. And I’m not an expert, nor do I play on on this forum. But I do know MY story… I had GBS. So if he doesn’t, then don’t bother reading this email! 🙂
I was hospitalized for 6 months, and paralyzed for about 5 of those. I didn’t get ‘un paralyzed’ until I went into physical therapy. It’s important to keep his muscles moving, and not letting them atrophy. That started happening to me.
His attitude will be important. My doctors tell me that my attitude was so important. And he needs to know these two things: he did nothing wrong to cause this. He didn’t hang out with the wrong people…he didn’t go to the wrong place. He just got it. Second: He can recover. His nerves will come back, and his muscles need to be ready when they do. So exercising his nonresponsive limbs is very important.
About his caregivers handling him: you must insist they are gentle with him. He may be having pain where you wouldn’t expect (mine was especially bad in my hips, where they would grab me to roll me over). They learned to grab the blanked under me instead of my hips. Watch his eyes…they will tell you if he’s in pain. Make sure they do too. If they don’t take this extra care of him, demand they be removed from his care.
Someone else here mentioned a ‘board’ to communicate. That’s a letter board, that has the alphabet on it (some also have numbers). He can indicate to you which letter he wants to use if you simply point it out. My family discovered that they could ask if a letter was in a row, if it wasn’t they’d go to the next row. Then they’d go across the row to the letter I wanted.
It was frustrating and tiring, but we did it. I was able to communicate. Also, make a list of his common requests and post it on very large (poster size?) paper, so that he can communicate his need to whoever is there. Mine were: suctioning; ice; cold; hot; clean me up; things like that. The list increased as I was able to communicate.
If you need any other advice, you can communicate with me directly. I was paralyzed from the neck down from July 22, 2009 until November 14, 2009; my movement started coming back slowly, and I can walk today with braces and a cane. My doc says I will probably be without those by Thanksgiving (end of November).
It will be a hard and long fight. But he can do this with the love and support of famly and friends along the way.
Oh…I asked to be put on an anti depressant right away, before I was ventilated. I knew there was a very strong possibility I would become depressed. I think he should think about it too…
Ask his neurologist how to get the IVIG for free. There are studies, however, that show that there is no added benefit to having both IVIG and plasmapherisis. I had both because my insurance would pay for it, but I just wanted you to know what the studies say.
Be strong. He needs to NEVER see you cry. My family was amazing. They never cried, always showed me they believed I would recover, so I believed it too.
Another thing… it’s horrible to be alone. If family and friends can be with him at all times, so when he opens his eyes, he will see someone who loves him..that would be ideal. I was so terrified at night that I wouldn’t sleep. I slept all day, when it was safe to because my sister was there with me.
He will have crazy dreams. They will seem real to him. Ride through that and try to undestand they are real to him… but assure him that you will keep him safe. He needs to know he is safe.
That’s all I have for now.
Best to Miguel. And to you…you’re a wonderful sister.
AnonymousAugust 16, 2010 at 11:05 pm
Miguel has both Lupus and GBS. He will be in the hospital 5 months on August 26.
GBS was diagnosed first when he got paralyzed and got in the hospital on March 26. We did not know anything about this disease. I remember we start searching like crazy in the internet and we never thought he will be this long in the hospital.
They diagnosed the Lupus 6 weeks ago, and after treating it, and having a second set of plasmapherasis he started to move, so he was totally paralyzed for 3 months from head to toes and on a ventilator from day 1.
Is been a journey for him and all the family. Sometimes we will think he was going to die from Neumonia and other severe infections that he had.
He will get in the computer soon and you guys will be able to meet him and write to him. He knows I am in this forums and when I saw him, I told him about all your stories.
Today he is doing much better. The Doctors are talking about totally weaning him off from the ventilator next week. He is moving All his upper body almost perfect and getting a lot of physical therapy on his legs.
He will be out very soon. Today the time is not what is important but what he has improved.:)
I will keep you posted!!!
AnonymousAugust 17, 2010 at 8:55 am
Your a great sister to Miguel!
Just read all the post you have made. Miguel has had it rough these last few months. Sounds like he is getting good care and treatment in hospital and has good support from family. I’m happy for you that you were able to visit him and see the improvement he has made.
Brandt and others have given you good advice and told you some of the experiences they have gone through with GBS.
Miguel needs to be watched to make sure he does not get bedsores from laying in one position so long. I got one just above the tailbone. It started out as a horrible itching and developed into a very painful bedsore that took four months of continuous care before it finally healed.
With support of loved ones Miguel will not travel this GBS journey alone.
Miguel, best of luck to you, your making improvement, keep it up.
AnonymousAugust 17, 2010 at 11:24 am
I just wanted to let you know that my prayers are with you and your family in this difficult time.
I’m glad to hear that Miguel is doing better and that you are keeping your faith.
When I was hospitalized for GBS and paralyzed for two months, I thought it was the worst thing that could happen but through all the darkness there is a light that shined bright. For me my light was God and my wife. Through my wife God made his presence felt. She was there for to comfort me and to push me to my limits to get me out of that bed.
You obviously love your brother very much and through you God has given Miguel the strength to recover.
I remember when I was in the hospital my family kept reminding me to focus on recovery and only that. Don’t concern myself with things that were out of my control. They told me that it was my job to get well and that I had to be hard worker and concentrate on improving every day.
This advice helped because as soon as I was off the ventilator I saw dramatic improvement as I was focused and determined to get my job done.
I will be praying for you and Miguel and all your family. God Bless!!
AnonymousAugust 19, 2010 at 8:48 pm
And he IS!
Oh my, what a torture! For Miguel, you and all of your family.
Tell him, that doctors either love it or hate it when you ask a lot of questions? But, they respect you more for the asking of them.
Both you and he are trying to wrap your brains around this awful thing. You can and must DO IT! That he’s gotten two bad illnesses for the price of one? Well, can’t say much that is good about it EXCEPT that he got DIAGNOSED! Next steps are harder, longer and more frustrating? But that he can eat and speak are super signs of progress!
Ask the doctors tho about physical therapy while bedridden and to progress to the harder things, like sitting in chairs, feeding one’s self and then walking and bathing and all that stuff… The harder he can work on any of these? The faster he can begin to recover. The more he recovers, the better he will feel just about getting by. Then the challenges down the road can lead to becoming almost ‘normal’ again.
Take it all in small steps. Small steps at these times seem like big ones? But there are even bigger ones up ahead.
My heart and hope and love goes to Miguel, you and your family! Don’t lose hope that you can’t beat it! With enough stubbornness you can achieve a lot!
In my thoughts always.
AnonymousAugust 28, 2010 at 10:17 am
Keeping you with the latest about Miguel recovery.
He is doing great. The physical therapist have been standing him up every other day. He says is very hard, and he has a lot of pain.
Yesterday was a little easier for him to stand up, just for seconds.
I imagine practice and repetition is the key for all the muscles of the body to come back.
He is feeling so happy of getting better day by day. The doctors say he is going to be out very soon!
I hope all you are doing good in your own recovery.
August 28, 2010 at 8:24 pm
Thanks for keeping us posted. With me, when learning how to stand and walk again, it wasn’t painful as much as it was just so hard to get the muscles going again, along with the fear of a knee giving out and going to the floor. Once on the floor, the arm muscles weren’t restored enough for me to pull myself back up, leaving me at the mercy of the therapist to get me upright again. Another item to recover is the sense of balance, which after four years out, still loose my balance more than before, however, I think part of the reason is that a lot of nerve sensors, both muscle and touch nerves in my feet never came back.
AnonymousSeptember 3, 2010 at 8:11 am
Hi everybody, Miguel was released from the hospital last night!!!His stay was of 5 months and 1 week.
He is cleared from infections and he is going to be treated for the Lupus.
The physical therapist has been standing him up everyday this week and he actually walk his first steps yesterday with the aid of a walker.
He is a miracle just like all of you are!!
He is staying with my Mom and He will continue with his physical therapy at home. I will let him know how to get into this forums so he can start talking to you and ask you about all his thoughts and concerns.
Thank you all and I will be in touch.
Veronica:D 😀 😀
AnonymousSeptember 4, 2010 at 2:39 pm
Veronica…..that is really great news about Miguel……taking his first steps with the walker is huge. With much patience, good therapy, faith and loving family, I am convinced that he will continue to progress. The steps to a healthy recovery may seem painstakingly slow, remain positive and share in the smallest of victories. May good things continue to happen for your brother…….
AnonymousSeptember 29, 2010 at 11:53 pm
Hi you all!!!
I hope everybody is doing well.
The latest news about Miguel. He is at home now for about 1 month. He goes to therapy to the hospital twice a week and he gets also therapy at home another 2 days. He is walking with the aid of a walker all over the house. He goes downstairs and upstairs with the help of someone else but he is actually getting stronger. He is so happy! It is talking time but I think he is doing great. We have to remember that he was in the hospital for 5 months and paralyzed completely for 3. I am telling him to get into the forums but I guess he is busy with all his therapies and he end up being exhausted. I want him to get connected with you guys so he can ask questions and share his concerns. I am sure that he will feel better and he will get in touch with you all.
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