I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: tigtink on October 10, 2018, 02:01:00 PM
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Apparently, the results of the creatinine blood test are very sensitive to the time delay from time drawn to time processed. This has happened to me twice this year: Friday I had labs drawn at about 2 PM. According to the lab, they were not actually processed until about 8:45 PM. The results showed a dramatic increase in creatinine from the prior month, from 2.75 to 3.61, with a drop in gfr to 13% from 18%. I was pretty freaked, as was my nephrologist, but I wasn't having any symptoms and nothing else had changed (and I knew I was not dehydrated) so it made no sense. Monday my doctor called and wanted me to get them done again. I was in a seminar all day yesterday so I did not make it in until today.
Just got the results--the blood was drawn at 11 AM and processed at 2:30 PM. Creatinine was 2.8 and gfr was 17%, pretty much where it had been for the past several months. What a relief!! The same thing happened back in March. Just another reminder never to jump to conclusions based on one lab result.
I had the results by 4 PM today. In the old days I may have had to wait days for the results. Fortunately I did not have long to sweat it out. Apparently, that particular test needs to be processed promptly in order to come up with accurate results. Thought I should share since we should all be aware of that when looking at results.
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It makes you mad when you stressed out of nothing. But, yes, don't freak out until the second test comes back.
My monthly flow study came back at 600. It was 850 last month. I hate fistulagrams. So I think I will ask for another one instead of waiting a month. UGH
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It makes you mad when you stressed out of nothing. But, yes, don't freak out until the second test comes back.
My monthly flow study came back at 600. It was 850 last month. I hate fistulagrams. So I think I will ask for another one instead of waiting a month. UGH
Rerun also take your BP when you have the gram. Low or high makes a real difference in flow.
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I am incredibly exhausted today. Even though I knew better than to panic based on one test result, it still meant 5 days of anxious waiting to get the second set of results. I've been living with the uncertainty for years, with monthly blood tests, but these false alarms still take a lot out of me. I did communicate with my transplant coordinator from WI this week and they have released their latest estimates of average wait times. In January 2017 when I last went there the average wait time for type O was 1975 days. Now it is 1976 days, so no real change. I feared it would have increased by now since it went from 956 to 1975 in my first 3 years on the list. At least the goalpost hasn't moved since then. I have 1732 days accrued now. I know the estimate is only an average and does not necessarily mean much, but at least it gives me hope that I am getting up there on the list. These are the kind of head games that keep me going. It is taking a toll on me emotionally, but I can only take it one day at a time. Some days seem longer than others!
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I am type O and was on the list for about 6 years and 3 months (about 2283 days). It was all worth it when the surgeon called and said "I have the best kidney you will ever be offered". Female, 24 years old, KDPI 33.
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Simon, I've been a bit absent on this site. Are you in the process of getting a kidney transplant?
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http://ihatedialysis.com/forum/index.php?topic=34758.0
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Tigtink, have you considered asking your doc for a script for Xanax for the situational anxiety you are feeling? Many years ago I mentioned to My neph the anxiety I felt in exactly the same circumstances that you have described. He immediately have me a prescription and told me to take it as needed. He also told me that just knowing I have it near by might make me feel better, and he was right.
Since then, I have had this exact same conversation with my tx coordinator. She told me that it was important to use it if I felt I needed it.
Do you think this might help you? I hate knowing you are feeling this way as I am all too familiar with the concept.
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Thank you, Simon Dog, for sharing all your experiences. I was so excited when your call came through. And you provided such good information on KDPI that has helped me prepare for mine. It will come, and the stories I read here really help me keep hope going.
Thanks for the suggestion, MM, but that is not a great option for me. I am under a care of a psychiatrist already and take mood stabilizers. Our strategy has been not to add new medications since I have been stable for so long. The reason I am dealing with kidney failure is due to medications I used to take years ago, so adding even more is not something I am eager to do unless my psychiatrist strongly recommends it. I will bring it up next time I see him, but I am not inclined to go that route.
I've been in stage 4 for going on 10 years now and up until recently I've handled the anxiety fairly well, with the help of vigorous exercise and the support of friends and family. I think what has increased my stress level lately is that even though my labs have been pretty much stable I have had symptoms I didn't have a couple of years ago and it seems to take more and more effort to function in daily life. Also, much of my focus has been on doing things to manage my health, and I am at a point now where there is nothing else I can do that I have not already done. One of the ways I manage the anxiety is by always finding something new to do that will help, and I don't really have any options that I've not already put in place. So I am just going to have to use all the tools I've learned over the years to manage the anxiety. Mostly I do okay, but I was triggered by the bad result. I think that is not surprising given how long this has been going on for me.
If I have to do dialysis before transplant, I will, and I will make the best of it. I could have had a transplant by now had I gone with Toledo, but I made a conscious choice not to have it done there. So I will deal with whatever I need to deal with, but there will be moments of high anxiety. I have been on the list going on five years now and it has gradually worn me down. But I am closer than I have ever been so I take comfort that I have given it my all and have come this far.
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I understand entirely.
I have just remembered one thing that helped me. My husband bought me some courses on dvd that helped distract me. At this point, it is all about the mind. I watched courses on music, linguistics and The Middle Ages. All these years later, we're still ordering these courses and are still enjoying them! I'm getting so smart!! If this idea appeals to you, I will find out the name of the company that produces the dvds. The Learning Company or something like that. Right now we're watching a course on ancient Native Americans.
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https://www.thegreatcourses.com/
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Yes, that's it! Thank you, Simon Dog! Maybe I need a course on Memory Retrieval!