Well, I am back on IVIG after a life threatening attack in December. I April I needed a foot of my small intestine that the doctors feel may have died due to the heart attack , bleed and stroke that occurred during the attack. My recovery is going slow. I am wondering if anyone else has had this type of complications?

 

I'm so sorry to hear this, Rita!

I am glad that you survived, and I wish you a complete recovery!

Please keep Dr. Druey completely informed of what happened, and ask him the same question.  It's important for him to learn exactly what happened in which order back in December, and what the hospital did about it.

The best thing for you to do -- for your future safety as well as ours -- is for you to request that a copy of your December, initial hospitalization records be sent to him ASAP.  As part of that, hospitals prepare a "Discharge Report" which explains what transpired between the time of admission and the time of discharge.  Get one of those also for yourself now that you have gained some perspective.

Please also update your profile page with whatever details you can share with us.

Hi Rita, So sorry to hear of your life threatening episode but so happy you survived. The reason my brother Allen Overland passed away from his final episode was in part due to severe bleeding from DIC ( a clotting disorder) which was due to the rhabdomyalysos from the swelling. He had never had any type of bleeding in the past and this came on quickly and the doctor was hand pumping blood into him to try and keep up with the loss. Unfortunately he had several severe strokes and that is what caused his death. I do not wish to scare anyone and I know you have had problems with IVIG but consider yourself extremely lucky!!! Dr Druey was there when all this happened with my brother so any information you can give him as Arturo mentioned will not only help you but others as well. It took some time for them to figure out what medication to give him to stop the bleeding and even though that may not have saved my brother I know Dr. Druey has that information in case it happens to someone else. Please take care and be well!! Linda

Hello Ritz,

     I'm sorry you had to go through that.  I skipped the heart attack, and stroke but I did have an attack that caused part of my bowel to be removed, and two other attacks where my abdomen was opened up to check for it.  I was in the hospital for 2-4 weeks each time, and another two months to approach normal.  I do hope the IVIG treats you better this time, and there's a community that understands whet you're going through.

Jeff

Sorry to hear of your troubles. My first episode was extremely severe. My whole body shut down. Multi-organ failure, multiple ischemias, compartment syndrome - all that stuff. There is life after a severe episode. I lost an eye, and ear and a lot of muscles and nerves (don't freak out. I'm an extreme case!) but I'm still kicking and fighting. Even with fairly frequent ER visits, I've managed to maintain and even expand on my dark sense of humour and deep sarcasm. Keep your chin up!

I have had a second intestinal surgery. This time it has to fix an adhesion and a twist of the small intestant. I am working with NIH to go out for another visit. They did give me IVIG right after surgery. So far my new dosage is working.

 

 

Hi 

does anyone else have trouble with diarrhea after their IVIG treatments? I just had another colonoscopy to see if there is another cause. I am wondering is this is just a reaction.

 

Hi Ritz. My husband (user name is monkeyracing) had a severe episode at the end of 2017 that resulted in persistent inflammation and ulcers in his intestine (five months in hospital). They think it's ischemia from the blood loss but are investigating to be sure it is not Crohn's. 

Hello Rita, how do you continue with your Ivigs infusions?