79 year old 1.5 months on ventilator GBS/CIDP

    • October 16, 2013 at 3:40 pm

      My father was diagnosed with GBS August 22, 2013, admitted to the hospital that day and had a rapid decline requiring intubation 1 week later. Over the next month, he received three IVIg treatments the first consisting of 5 days the others only 3 days each. He was showing progress in attempts to wean him from the ventilator and was on CPAP 40% oxy for 2 days before the doctors order a transfer to an LTAC ICU. The 30 minute ambulance ride was hard on him and required a return to full breathing assist from which he has never recovered. A week later there came a day where he was no longer breathing over the respirator settings and showed other signs of decline including facial weakness. The nurse talked my mom into signing a dnr. My brothers and I convinced his doctor to try a corticosteroid treatment thinking that he really has CIDP. The day of 1st dose 500mg Medrol, Dad showed signs of alertness, moving his eyes focusing on us, closing his mouth and nodding appropriately in response to yes/no questions. Yesterday, 6th day of Medrol dose now down to 250mg he seemed less alert and had increased facial muscle weakness around his mouth. There are still no signs of recovery from limb paralysis. His pulmonologist and respiratory techs keep asking if we have made the decision to pull the plug yet because of his age and being on a ventilator for 1.5 months he probably will never recover. The worse part is that dad was awake, alert and no doubt heard them saying these things. This is really upsetting and seems that he hasn’t been given enough time to see if he will recover from such a slow moving disease. He is due for another treatment of IVIg next week. The staff is telling us that if he can’t be weaned from the ventilator (which is impossible right now) that he will have to be moved to a nursing home that can handle ventilator patients. There are none in our area which would mean another arduous trip to another city. If it comes to that point, would like to find out if it is possible to get the necessary in home care instead.

    • October 16, 2013 at 8:00 pm

      Home healthcare may be an option to consider. Ventilator-dependent patients can be treated at home through this approach. Your doctor must write prescriptions for the durable medical equipment, supplies, and the home healthcare services required. Medicare partially covers home healthcare of this type. Coverage may vary depending on what supplemental insurance your Dad has.

      The Medicare website is not being maintained due to the government shutdown, but here is a link to their home health pdf guide: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=1&cad=rja&ved=0CEkQFjAA&url=http%3A%2F%2Fwww.medicare.gov%2Fpubs%2Fpdf%2F10969.pdf&ei=feReUq0VybCJAre3gKAM&usg=AFQjCNEu033rX7W-n2QvuBa1C3GR3bYYlg&bvm=bv.54176721,d.cGE

      I have used 5 home healthcare agencies in the LA area (including 2 for IVIG) and can say that prices and services vary, as do the quality and quantity of equipment and supplies (they tend to give too many supplies so they can bill for them). You may wish to research home healthcare agencies in your area and provide a recommendation to your doctor (or he/she will use whatever agencies they have a relationship with).

      Here is a good article covering things to consider when transferring a ventilator-dependent patient to a home environment: http://www.medscape.com/viewarticle/514735_2

      I was on a ventilator for almost 3 weeks after getting GBS/CIDP/MFS. I could hear almost everything that was said around me, but couldn’t talk or feed myself. Then I was weaned off the ventilator and became able to breath on my own again. Feeding myself took several months longer and I was at risk of getting food in my lungs if I swallowed wrong. I had daily breathing treatments and exercises for nearly a year before I was back on my own.

      I hope your father recovers quickly.

    • GH
      October 17, 2013 at 3:33 am

      End-of-life issues are the most difficult, particularly when family members disagree. I’m no expert, but I think the spouse is the person responsible. If she has any doubts, I would encourage her to discuss them with neutral persons who are accustomed to dealing with them. The hospital chaplin, certainly, and her own pastor if she has one. There are other counselers that can be consulted.

      I do have a concern with a DNR for someone with GBS. Such a person is usually only temporarily unable to breathe without a ventilator, so it is not all the same as someone who will never be able to breathe again. Even more important, as you note, a person with a severe case of GBS can be fully aware of his situation but be paralyzed so unable to communicate his own feelings and desires. A person with extreme GBS is not dead as a practical matter and only being kept alive by extraordinary means — he is alive but severely disabled. To turn off his ventilator would not seem appropriate to me and could be considered cruel, although I do not know the particulars in this case.

      Finally, six weeks in this state does not seem to me to be extremely long for persons with the most extreme cases of GBS paralysis. I would definitely seek an expert medical opinion on this.

      Another thing to consider is his age. Although most people recover from GBS with modern treatment, a few do not. He may be too weak to survive this ordeal so you should be prepared for it. If he does succumb, it does not necessarily mean that he did not receive all the appropriate treatment.

      My thoughts are with you in dealing with this very difficult matter and I pray that your father recovers.