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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Update on severe PSC exacerbation

My husband had a severe exacerbation of his PSC in early Sept. As I’ve posted previously, he was scheduled for Transplant evaluation testing for the week of Sept. 14th at Cleveland Clinic,mbutmwasmgettingnvery sick a few days before, so we left on Friday Sept. 11thmand he was admitted on the 12th. He spent 2 days in MICU, then another 23 days on Transpant Services Unit G101 getting stabilized.,Whilemthere,mhe developed terrible constipation, had a small bowel ileus complete with NG tube for 5 days & only ice chips (so lost about 10 lbs. that week, also hadmt have a Cardiac Cath due to his Dobutamine Echo test being " inconclusive," had the cardiac cath & passed with flying colors, had an MRI that showed a 1.3 cm mass at junction of Left & Right bile ducts, then had to undergo an EGD with Endoscopic U/S & Fine Needle Aspiration of 3 lymph nodes. Nodes were negative for malignancy (Thank God!), but he lost a total of 20 lbs in 5 weeks and is incredibly weak. He was discharged to a SNF near CC where he goes to PT/OT M-F and gets his medications. He’s now, after being here 10 days, able to walk to the bathroom with a walker, but has trouble feeding himself due to weakness. He sits in the chair twoce a day for about 10 minutes because he has no fat on him any more. He lost all the muscle & weight he gained back after last year’s 7 week hospital stay for his very first exacerbation ever He definitely looks cachetic and that is depressing him terribly. So, he has another ERCP on the 19th for stent change puts and repeat brushings formFISH test. Themone they did on 9/14 did not have adequate cellularity so they couldn’t run it. We’ve been in Cleveland 5 weeks and we both are terribly homesick. I am exhausted coming to the SNF every dY for 12-13 hours a day, tying tmhelp him in whatever way Imcan. I hate tomsay it, but if I was not here, he would be a worse mess than he is. The people here at the SNF rehab facility are used to taking care of the Pre & Post Transplant patients from CC, but he is very very sixk and needs 1:1 care, so thats why I’m here for 12-13 hours a day. His anxiety has gotten worse (can’t blame him what with evrything that has happened in such a short period of time). To be honest, I am not at all sure if this is what happens to a lot of PSC patients when their livers are severely trashed and transplant needs to happen real soon. I’m afraid that they’ll say he’s too weak to have the surgery, even though his heart and everything else is ready to go. I saw how sick he was last year and how long it took him to get better, but this is much worse. He is 65 years old and was always in great physical condition, wasn’t overweight, always worked out & had good nutritional habits. I hate seeing my strong healthy husband slipping away, looking and feeling like a 90-year-old man. Any words of wisdom would be appreciated right now. Thank you for listening.

I apologize for all the typos in my discussion. It seems that the iPad likes to type the letter “m” in there a lot. I really can type, folks!

GMA,

I hate that your hubby is having such a hard time (and you too!) I know that caregivers pay a toll as well.

One thing that got me through uc was to focus on the future-long term. Yes, the daily stuff needs to be dealt with, but knowing there was a future was very comforting.

I hope you have a lot of hugs being sent your way.

Jeff