I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Vicky on February 23, 2009, 08:43:59 PM
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I got the transcript from Dave's last visit with the nephrologist and I had had his urologist send over their office notes so the Neph had all information. Last year he has 24 ounces of fluid removed from a sac surrounding a cyst on his right kidney and he knew at that point that his GFR was 23%!!!!!!!!!! Why the "BLEEP" didn't he say something then, this would have been a little more gradual and a lot less in your face for Dave. He did realy well today, he still had to leave the room towards the end of it. He keeps thinking this is the begining of the end of his life and I can't get him to understand it's not the end, it's actually the beginning of feeling better and getting better, but I know that will all come with time, but we could have had a year to adjust to all of this instead of two months of intense in your face let's do this this this and this. :rant;
There I feel a little better now!! :2thumbsup;
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I'd be pissed, too! Geez, I knew this was coming for 10 years, and dialysis was still hard to deal with!
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That sucks! You could have used the time to wrap your mind around this whole thing. At 20% he could have been listed!!! Now he has to go through all that BS too.
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Such a lack of communication between so many doctors and ther patients.
I would be upset as well. Not only could you have prepared for this day you also may have been able to put it off for a period of time with certain diet restrictions if you had known.
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Geesh - Sorry to hear about the total lack of communication. I also had years to adjust to the gradual decline of my kidneys (although I must admit I was in denail for part of that time). After a while I routinely asked for copies of the office visit notes and I had to become my own best advocate.
Good luck.
Sandyb
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That is awful that they didn't tell him. Like Jbeany said it is already hard to accept knowing for 5-10 years and not knowing makis it harder. Word of the day COMMUNICATION!
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I've been through a lot over the years and have fought with everything I have to survive. When I was still in the hospital after my last kidney was removed in September, I was devastated because I had a feeling that I never had before. I felt "It was the beginning of the end" for me. This feeling terrified me and threw me into a depression. If it wasn't truly the beginning of the end, then surely just because I was thinking it, it would be the beginning of the end. It was awful. I have an amazing relationship with my oncologist (because he is an amazing man). He's fought hard right along side of me. I shared with him what I was thinking and asked him if over the years he has had patients who also felt that way before the end...and if they were right. He answered that sometimes they were, sometimes they weren't. With that answer, he gave me hope. Hope that my dark thoughts aren't always the truth. He didn't tell me not to feel that way. He also gave me permission to feel what I was feeling and to go through it. It's a very difficult place to be in but it's part of the process.
I don't feel that way today. I am used to the dialysis thing and I feel very hopeful. I am still aware of the battle I face with bladder cancer but no longer think I will be responsible for my death simply because I have some very human thoughts of losing the battle at times. Sometimes God wins in spite of our humanness. I take comfort in that.
Your husband will get through it. This is part of the process. There is a lot of grieving and natural fear and I don't think we should skip over them. In my opinion, I think you need to allow him those feelings while always keeping the window of hope open.
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I've been through a lot over the years and have fought with everything I have to survive. When I was still in the hospital after my last kidney was removed in September, I was devastated because I had a feeling that I never had before. I felt "It was the beginning of the end" for me. This feeling terrified me and threw me into a depression. If it wasn't truly the beginning of the end, then surely just because I was thinking it, it would be the beginning of the end. It was awful. I have an amazing relationship with my oncologist (because he is an amazing man). He's fought hard right along side of me. I shared with him what I was thinking and asked him if over the years he has had patients who also felt that way before the end...and if they were right. He answered that sometimes they were, sometimes they weren't. With that answer, he gave me hope. Hope that my dark thoughts aren't always the truth. He didn't tell me not to feel that way. He also gave me permission to feel what I was feeling and to go through it. It's a very difficult place to be in but it's part of the process.
I don't feel that way today. I am used to the dialysis thing and I feel very hopeful. I am still aware of the battle I face with bladder cancer but no longer think I will be responsible for my death simply because I have some very human thoughts of losing the battle at times. Sometimes God wins in spite of our humanness. I take comfort in that.
Your husband will get through it. This is part of the process. There is a lot of grieving and natural fear and I don't think we should skip over them. In my opinion, I think you need to allow him those feelings while always keeping the window of hope open.
Dave also thinks this is the beginning of the end of his life. He has so many emotions going on and he doesn't always talk about them, but I can read him and know when is enough and I send him out of the room to chill for a few minutes and gather himself back together and get his thoughts straight. This would have been so much easier if we'd had time to "ease" into this instead of here ya go!! I try to get him to talk without pushing him. I work at our local hospital and there are some free services available to us, I just have to find the right time to approach it with him about seeing someone to talk to about everything. He's lacking family support on his side big time, they're pretty much ignoring it. he gets more contact with his old work friends then his own family so my side of the family takes up the slack for his side. He is upset because in his words, " I didn't sign up for this when I married him last year", guess what I signed up for all aspects of him, including his kidney when I married him, just have to get him to understand that. It will be a slow process but we will get there. It's nice to have this place to come and sound off and get advice when I need someone to talk to.
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Tell Death to take a back seat and then get on with whatever treatments he can have.