August 7, 2013 at 1:03 am #74341
Shelley did they not put him to sleep???? Teddy had a lot of stent exchanges and they always put him to sleep. I am upset to hear this as he should feel nothing! On the other hand if they are SURE it is not the stent I guess you can rule that out. I feel so bad for all of you and wish there was something I could do. Hang in and Be Strong!August 6, 2013 at 11:48 pm #74340
Thanks for your reply. It’s true, he could be anemic. But, they just did a blood test to check for ammonia and I believe they checked his red blood cells too. I am assuming it is likely disease progression. He does not want any treatment. He saw his dad and grandmother suffer and chose no treatment. As for the stent, the one he has is working. It is flowing well into the bag. The hospice doc thinks there may be another duct blocked. He has had stent replacement. He just doesn’t want a new PTC with a new stent. He said it was the worst pain he ever experienced.
ShelleyAugust 6, 2013 at 6:10 pm #74339marionsModerator
Shelley….possibly your husband is anemic. A simple blood test would confirm this. Much of the symptoms you are describing appear to be related to diseae progression however; I am wondering why your husband has not agreed to a stent replacement? It is for palliative purpose only and may prove to be immensely beneficial in providing symptoms control.
MarionAugust 6, 2013 at 12:40 am #74338
Shelley, Teddy had days like that too. I think the mottled could also be ashen. Teddy never got that. Have you asked the Hospice Nurses if you should be home? I know they do a good job but sometimes it is so frustrating. But then they really don’t know. The day I had to take Teddy to a Hospice Facility (4 days before the end) no one would look at him and even think he was that sick. Must have been the olive skin. He seemed to understand this was it with no fright or anything. The hardest part for me was he agreed he needed to go but requested I drive him. I will NEVER forget that ride. Somehow we do what we have to and no regrets. You would have thought he was going to a hotel. Once settled he said to me, “Have you made plans?” Of course, everything you asked for. He says, “I should have known!” We both laughed! People who knew us could see this scenario happening.August 6, 2013 at 12:24 am #74337
Hi Lainy, you have sent me the signs before. So, I guess this must be #10, loss of circulation. I just do not see any mottling. His appetite is really decreasing too. I get so confused though because it is such a roller coaster. One day he is doing well. Then the next day he is really bad. Every time I think it’s time to take off from work, he surprises me and has a few really good days. When I try to talk to the hospice nurses, they just tell me that no one ever really knows. I understand that. I just want to know if I should be home. Right now he can still get things for himself.August 5, 2013 at 11:50 pm #74336
Oh Shelley, I am very sorry to hear this. I have a list of what to expect near the end, and though people are all different Teddy really followed it to a T. I would be happy to e mail the list to you so you will know what to expect. I am a firm believer that we know ahead of time, as the patient, when our time is near. Be very open with each other as it helps the rest of the terrible journey. Feel free to email me anytime and let me know if you would like the list. My Prayers and thoughts are with you. I am not a believer in sugar coating things as I feel everything hits harder when the truth is not spoken.August 5, 2013 at 11:40 pm #8715
My husband is getting palliative and/or hospice care since March. As some of you may recall, he’s had some issues. He is somewhat jaundiced because his stent does not seem to be working as well as it once did. It still clearly is draining into the external bag. But, his doctor thinks the tumor has likely grown and another duct is blocked. Al has chosen not to have another stent procedure.
I recently have noticed that the palms of his hands and bottom of his feet are kind of ashen or gray in color. It is quite noticeable since the rest of the skin has the yellow hue. Has anybody else ever seen this? Whenever I bring anything up to the hospice nurse, they just act like he’s doing great. I agree with the positive attitude around him. I just don’t have any idea why somethings happen. Also, I continue to work and I am trying to get a feel for an answer from them if it is time to take time off. Every time I feel I need to be home, he rebounds.
Anyhow, thanks for any answers or advise.
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