My name is Rachel, and I am writing on behalf of my Uncle Lou, from his home in Albuquerque, NM.
Lou has been fighting a long and difficult battle with MALS. He was finally diagnosed in 2017, after years of struggle and misdiagnosis. In 2018 he underwent the procedure to correct the pinched nerve and ligament, and remove part of the Celiac nerve ganglia. This successfully restored blood flow to his stomach, but did not help ease his pain. Over the last year, he has undergone two additional treatments of nerve blocker injections through the ABQ pain clinic.
Unfortunately none of these treatments helped and the pain has persisted, and even increased over time. He continues to suffer painfully when he eats, from what I understand is classified as severe and therapy‐resistant neuropathic pain.
Like many of you, after surgery the doctors have said that there is nothing else that they can do for him, and the ABQ medical system is very poor.
A few months ago he was briefly hospitalized. The emergency room physician who treated him told him that in her opinion his undernutrition was so severe that he had only months to live.
Currently, Lou is living at home and receiving hospice care, with in home care throughout the day. The services are extensive, and have helped improved his quality of life tremendously, and include many of the things he has been asking his doctors for and not receiving. Better pain and anxiety medications, hospital bed, wheelchair, an on call nurse and 24 hour hospice access, medical alert system, personal grooming, home cleaning services, and on going support.
He is 6'2", 73 years old, and currently weighs 102 lbs. We have him on a regimented diet of Resource 2.0 in addition to one to two small meals throughout the day, but have not been able to get him to consume more than 1,600 calories in a day.
We are very lonely with our struggles to help him, and I have found considerable comfort in reading through this forum over the last few days.
* Are there other people out there who are struggling after unsuccessful treatment that we can connect with – even just for solidarity?
* What are your most successful meal plans for maintaining weight?
* Are you on IV fluids, and/or GJ feeding tubes? (These will be hard for us to get right now because he is on hospice, but if there is hope we would like to know)
Dear Mark (@ukmalsman),
I have been reading your posts and have found them so useful. Would you be willing to share what your meal plan looks like for the week? Already I fear I may have been overfeeding Lou sold meals, and want to switch to a liquid diet as you suggested, but I don't know where to start.
Thank you for all that you have already contributed, I am just beginning to dig in to this forum and the MALS PALS on facebook and I feel better equipped than before.
Thank you all