Help Fund Kate Sholly's Healing and Recover

Posted on June 4, 2018

The latest Kate update:

Kate is still having a hard time every day with many symptoms, especially the intestinal gas, but the antidepressants are working pretty well and she is more “herself” again, although her quality of life is still very poor. Her nervous system is still too sensitive for her to use email or do much reading or to watch TV. Some of her secondary symptoms have improved (her edema is better but not gone) and her metabolism and energy seem better, possibly due to our supplementing with iodine to help her thyroid meds work better — we found out that the TPN (IV nutrition) does not include any iodine whatsoever, along with missing some key trace minerals. Now we need to continue to reduce stress and support her adrenal function. She has been on TPN since January, but this week we are trying to slowly introduce chicken bone broth (diluted in water) to see how her digestive system handles it. Just drinking water has caused belching, but she has managed to stay hydrated, partly because the TPN contains water.

Kate has had four "visceral manipulation" sessions (it is like deep massage for the stomach, diaphragm, and intestinal area) which gave her some uncomfortable cramping in her gut, but it also seems to be fixing her hiatal hernia and hopefully repairing some structural issues that were made worse by the all the stress of the last 6 months. The endocrinologist we saw in May wasn’t much help, though.

Two weeks ago we sent off a urine sample to a lab in Kansas for the Organic Acids Test, to determine if there is a particular yeast or bacteria creating a lot of the gas. Results due back now any day. And the UCSF GI department did not accept Kate as a patient, but they pointed us to a particular neuro-GI doctor at CPMC in San Francisco, and the referral has been made there and now we are awaiting scheduling to see him, possibly in 2 or 3 weeks. So watch for another update later in June. Thanks again for all your caring and support; Kate has been so down and out for so long that anything that lifts her spirits makes a huge difference.

Posted on April 30, 2018

As of April 29, Kate is benefiting from the antidepressants and is in a better frame of mind than a month ago when she started them. However, the relentless gas persists and creates a lot of discomfort, and in the last 2 weeks, just drinking water causes belching. We are hoping to try her on small amounts of broth by mouth again as soon as possible. She is still on TPN nutrition (since mid January) but not gaining much weight, and still sleeping upright on the couch every night, and her sleep is not very deep. Her edema is better lately, though, and her digestive system seems more “awake” then before.

She had to have her IV access line (called a picc line) replaced on April 23 because it had moved too much over time; that was a successful (but super-stressful) two-hour procedure at the hospital. Her most bothersome symptoms are a horribly dry throat and mouth (which prevent her from sleeping reclined), along with the gas creating a tight chest feeling, some neuropathy and “burning” sensations in arms and legs, edema, general weakness from poor nutrition, and cold feet. Her thyroid meds have been adjusted recently as well.

As you can imagine, all this over the last 7 months has worn her down emotionally and she feels completely trapped in her horrible quality of life. Although she can go for short walks, her only trips out of the house by car since November have been for medical appointments. She is interested in reading and having conversations, but her nervous system can’t handle more than brief periods. Tem is printing any encouraging emails that are sent to Kate, and she is reading them and occasionally able to respond.

The UCSF referral process is moving very slow. Right now, Kate’s doctor sent the referral off, and the GI department head at UCSF is in the process of deciding whether to see Kate; it took quite a bit of assertiveness just to make sure the UCSF doctor even looked at the referral, because Kate doesn’t have an official diagnosis of IBD, Chrons disease, or Ulcerative Colitis (she doesn’t fit into their usual boxes), and their policy is not to accept patients without one of those diagnoses. In fact, if we were to just show up at the UCSF E.R., they said they would send Kate back to her local GI docs, even though they were the ones who “fired” Kate as a patient, telling her to go to UCSF or UCDavis because they couldn’t do anything more for her here in Grass Valley with their limited testing methods. The local medical people have done a CT Scan (without contrast) a colonoscopy, an endoscopy (back in December), they also tried motility drugs and Prilosec. Kate has an appointment with an endocrinologist/internist on May 11, someone she hasn’t seen before, to address her chronic low sodium levels and hopefully get some better testing done on her overall condition.

Visiting nurses come every week to change Kate’s picc line dressing and take blood samples. Kate is also getting visits from 5 or 6 friends on a regular basis, and one of them is her regular therapist. Tem is her primary caretaker, of course. Thank you all for your kind supportive comments and for your concern and prayers.

Posted on April 4, 2018

Update: Because she has grown increasingly depressed in her highly uncomfortable and limited life, Kate is now trying an antidepressant on the advice of a well-respected local psychiatrist. After it starts working, we are hoping it will also relax her body in a way that will reduce her anxiety and her intestinal gas. After the depression is mitigated, we’ll be more easily able to leave the house to see specialists to help with her digestive problems. Thank you all for your continued good wishes and financial help.