I just don’t understand…

    • Anonymous
      December 3, 2007 at 4:36 pm

      … what is going on with my dad. Almost one month ago, my dad went back into the hospital after finally getting to a rehab for one week. He went back in for some unknown infection. They pumped him full of fluids, antibiotics, etc. He blew up- literally. He became so incredibly edemic. So edemic in fact, that his skin was oozing fluids because it had no where else to go. Then, about 3 weeks ago, his blood pressure dropped drastically, he was unresponsive and they called a code. He was revived and seemed to be stablizing. The put in a chest tube to relieve some of the fluid building up around his lungs that were collapsing from the outside. Then fever struck again and they still could not find the source of the infection. They said he was Septic(?). WBC was all over the place as was his BP. Soon, everything stablized, his color was good, his attitude was fine. He seemed like he was coming around. Even had more movement in his mouth and neck. And then… this morning, he crashed again! At 6am they called the rapid response team because he was once again unresponsive and have a very low BP. And again, they revived him to a somewhat stable state. Now they are suggesting that he has congestive heart failure, possible clotting in his legs, too much fluid in his 3rd spacing, and it doesn’t look too good.
      I just don’t get it. I don’t understand why a perfectly healthy 72 year old (who took less medication that I do at 40) is in this predicament! What is really going on here?!?!

    • Anonymous
      December 3, 2007 at 6:36 pm

      GBS can affect the autonomic nervous system as well as peripheral. That would explain the sudden drops in blood pressure. This happened to me. The doctors were just a heartbeat away from putting in a pacemaker on me. The retention of fluids can also be explained by the GBS. The fact the he isn’t moving contributes to the retention of fluids. I would suggest Lasix. That should help with removing some of the excess fluid. Make sure they give him pottasium with the lasix. They lasix will also make his pottasium levels drop. I don’t have any suggestions about the infection. That could be from anything.

      Tonya Correll

    • Anonymous
      December 3, 2007 at 11:13 pm

      I agree with Tonya. I had many of the symptoms that your Dad has had and doctoring for them still. Hang in there and keep looking for the possitive steps he is making each day!

    • Anonymous
      December 4, 2007 at 4:17 am

      I am sorry that your Dad is having so many problems, but as I read this, I thought–What a fighter he is!!!! He/his body is trying so hard.

      People are amazing in how beautifully bodies balance and work even after so many decades of life’s challenges. However, once one problem hits, it is harder to balance the rest and you can start seeing more of this type of health oscillation where it becomes so difficult to get back to “stable” and the balance is tenuous. When someone has a bad infection, the body tries to fight it and there is an intense inflammatory response. this can make inflammatory diseases (like GBS/CIDP) worse. The body sends out as many white blood cells as possible to fight the infection and the lack of reserves then makes the WBC low and the body more susceptible for a while. Third spacing is when fluid leaks outside of the blood vessels and this frequently happens with sepsis (even when the body acts like there is a bad infection, but no positive cultures for infection happen). The leaking is into the extremities (edema =swelling and puffiness) or into the lungs (as seen by the need for a chest tube to drain this “extra” fluid) or anywhere else or diffusely. All this extra fluid can also overload the heart and cause congestive heart failure. Whenever someone drops their blood pressure very low, doctors give fluids or “pressors” (medicines to recover the blood pressure–think of it as medicines to cause the blood vessel walls to press together to keep up the blood pressure) to bring it back up because the body needs the blood pressure to be high enough to make blood go especially to the very important brain. Kidneys are also very sensitive to low blood pressure and if the kidneys stop working as well, it is harder to get rid of the extra fluid after the body begins to stabilize. This fluid builds up in the lungs (which is dangerous), annoys the heart, swells the legs (which predisposed to clotting), etc. It is a “domino effect” where one thing leads to another that leads to another. It gets harder and harder for a body to re-balance it all. As the others have said, often the autonomic system that controls blood pressure and heart rate/function does not work normally in GBS/CIDP. This also makes it more likely to have greater swings from side to side and more challenges to re-stabilize. As well, it is harder to treat an infection if you do not know what it is and not treating well enough (because of this lack of knowing exactly what or how much is needed because one does not know the exact cause of the infection–bacteria type or place) can lead to relapse of the infection or to development of a second “resistant” infection. From what you have said about this being an abrupt onset after he was doing better, it sounds like it had to be treated as sepsis as it was. It also sounds like they and he are fighting hard to rebalance and get over this. Please expect that it will be slow. When there is a lot of serious backsteps in progress to recovery, often the approach is to try a slow and steady path rather than a quick one because it is far better not to have another significant step back. Nature (as a word for the awesome design of God) is the greatest healer. As a person who works in healthcare, I am so awed by this and know that in people as strong as your Dad, people in healthcare just are helping hands in this process. It may be flustrating that progress is slow or that there is no magic repair, but do not give up hope.

      It is late and I may not be clear, but the main points again are that your Dad is trying hard, that although it is really hard to rebalance he has on his very positive side both that he was previously healthy and that he had rebalanced after the previous setbacks (he has resilience). Our thoughts are with you.

      With Hope for cure of these diseases.

    • Anonymous
      December 5, 2007 at 10:54 am

      Jam, Wow! He is such a Fighter! and You are a Wonderful Support person! Stay Positive, You All will get through this Together! You All are in My Thoughts and Prayers! Please Keep Us posted! Hugs!

    • Anonymous
      December 7, 2007 at 9:01 am

      well, with a very heavy heart i am sorry to say that my dad passed away wednesday night. at around 11pm his nurse found him unresponsive and could not get a pulse. they discovered that his heart had stopped and tried for 20 minutes to revive him. unfortunately, they were unsuccessful. i am not sure what to make of this. i thought most people recover from GBS- I should have known all along that my dad was not most people…i am terribly sad as are my mom, sister, kids and everyone else who knew and loved him.

    • Anonymous
      December 7, 2007 at 6:59 pm

      i am writing this with a very heavy heart. my dad passed away on wednesday night from what would seem like complications from GBS. his heart stopped and after 20 minutes of trying, they were unsuccessful in reviving him. we are terribly sad, extremely confused and in a state of shock.
      thank you to all who offered their advice and support. in exchange, we would like donations to be made to this foundation. does anyone have any information on how to do this? i know that when people make a donation, they can make it in his honor/memorial but do we, as his family, have to set up some sort of account?
      again, thanks for all your help.

    • December 7, 2007 at 10:08 pm

      I am so sorry for your loss. Please accept my sympathies and prayers for you and your family at this difficult time. How kind of you to be thinking of others in this sorrowful time.

      dawn Kevies mom

    • Anonymous
      December 8, 2007 at 12:24 am

      Please know my sincere condolences are with you and your family during this time. It’s so hard losing a parent especially this time of year and due to this terrible disease that so hard to understand. My family (and I’m sure everyone on this list) will be praying for you and hoping you will be safe and healthy during the days to come. My heart is truly with you so please “Take Care” and may God Bless you and those around you during this sad time.


    • Anonymous
      December 8, 2007 at 5:19 am

      You and your family have my sympathy. There are many times we don’t understand how fragile life really is. Your family was a witness to a very strong person that had a good life and his body just gave out before we thought his time was up. Our hearts are very heavy due to your loss. I hope that you continue to help families on this forum understand how to take care of our loved ones with GBS. I am sure you can find the information on the main page of this website. What a great gift to continue to educate people about this illness. Thank you for sharing your father’s story with us, we know he will be missed dearly.

    • Anonymous
      December 8, 2007 at 7:58 am

      Dear Jam,

      You and your family have my deepest sympathy…I am so sorry.

      To set-up a Memorial Contribution go to [url]www.gbs-cidp.org[/url] for complete instructions.

      You may want to stay with the “Mail-in Checks” because the credit cards may get a little complicated for some people (my opinion).

      Warmest regards.


    • Anonymous
      December 8, 2007 at 8:57 am

      Dear Jam ~ I am so sorry for the loss you and your family are experiencing. There is no way to understand all the “reasons” this happened. Please know that this is a loss to the GBS family here. My prayer thoughts are with you.

    • December 10, 2007 at 9:20 pm

      Im so sorry for your los, and I would like to stay close to you and give you a good Icelandic hug and your family.
      Stay strong this is big los and I feel so in my heart how difficult it is to loose a parent.

    • Anonymous
      December 10, 2007 at 10:09 pm

      Jam, I’m Very Sorry for Your Loss. Please know You and Your Mom are in My Thoughts and Prayers.