Well folks, after my husband was readmitted to Medical ICU 3 days ago, his condition has deteriorated. His blood pressures have been in the 88/53 range since Monday. He’s got gram negative infection in his ascites, most likely E. Coli and is receiving Rocephin. He finally got tapped for 5 Liters today. However, he doesn’t wake when I talk to him, he sleeps with his eyes open (only since this exacerbation started in September!), but tried to bite the mouthcare swab, so I know he’s still in there. I had a frank discussion with the Medical ICU Fellow and asked him, is he or is he not a transplant candidate? I feel in my heart that he is not. Answer? No, with his deterioration, he is not. So after,discussing fact that Jim wanted to go home if no possibility of transplant, we are making necessary arrangemnts to have him transported home, 270 miles. My very generous brother is paying for that,since insurance very likely does not. Hubby was very aggitated this am when I arrived in the ICU, so nurse gave him .125 of Xanax. He didn’t really calm down much so we discussed hiving him a half a dose 2.5 mg of Oxycodone because he kept complainng “ow.” That was,at 10 am today and he is still snowed at 5:30 pm…His bacterial peritonitis is being treated with IV Rocephin and white count almost normal. Liver #'s are crappy, but they always are so nothing new there. They tapped him for 5Liters this afternoon with intent of giving him comfort.
So, I’m waiting to hear about getting the home services in order and when they say go, we’ll go. Its a 4 -5 hour drive back but I keep telling him I’m making the arrangements to take him home and to hang in there. In retrospect, the “rehab” was not realistic, but the Hepatology team gave us the hope that it would be. If we had gone back home 2 weeks ago, he still would’ve gotten sick and we would’ve most likely had to come all the way back here to Cleveland for what is going on now, because he refused to go back to the hospital in Rochester where he had such a horrible 7- week stay during Fall of 2014. So, we were really between a rock and a hard place.
I’ve cried a lot of tears this time because I now know this is it…he’s not going to get better, that everything we had such high hopes for are not going to happen. He will not see our beloved grandsons graduate from high school, we will not take that trip acrss the country pulling our new A-liner camper behind our new van, never see Ireland, never sleep together again and hold hands and talk, never go to the movies like we used to like to do on Mondays (my day off), never read the paper on Sundays while having our coffee together, never look out the back window at the big Pileated Woodpecker who showed up at the feeder every morning and every afternoon this summer, never go to the 1000 Islands or the Adirondacks or to Maine…My God, the list goes on and on. We’ve had 28 years together and have gone through all kinds of changes, good and bad, but mostly good, and we still had things to do. He knows this is it. He’s just kicking back, taking it all in, waiting for me to take him back home for however long it’ll take for him to complete the hard work of dying from this terrible disease, PSC. God Bless you all for your support. I hope when this is all done, that I can find the strength to bring more awareness to people about how devastating this disease really is. Maybe one day, it can be prevented or treated in ways that don’t require people to be half dead before they can get a lifesaving surgery. I will pray for that, and hope that you all do too.
Gma , that's a heartbreaker. I hate that this is happening to you and your husband. I feel the love you have for him. Consider a 1000 hugs sent to you.
We pscers hope that there will be a liver available when we need it, and before it is too late. That thought lies in the back of my mind and it hurts knowing that the timing of transplantation is a moving target, and not all of us make it. There are too many times that one is not available or it becomes too late, as it was with your husband.
Please be strong for both yourself and your husband.
Jeff
Dear GMATD53,
No words can suffice to tell you of our heart-felt grief for you and your family at this time. Please be assured of our thoughts and prayers for you both during this very difficult time. I pray that his last days will be peaceful and that he will not suffer. I wish there was more that could be said to comfort you, but I pray that God will be with you through it all. Rest assured of our concern and prayer.
Mark
I am so sorry for your disappointment and pain. This is a very difficult road. May you find some strength in these days ahead through the remembrance of your wonderful memories together… it sounds like from what you wrote that you have had such a good life with your husband. Many of us, including me, appreciate what you have shared. Thank you and bless you, GMaTD53.