CT scan tonight

MikeK703
MikeK703 Member Posts: 235
in Kidney Cancer #1
I posted earlier that my urologist had once told me that I would eventually need a CT scan with dye. I wrongly assumed he meant that he would order one as part of my follow-up. But what he actually meant, I have learned, was that someday, for another medical reason, I would probably need one. He has no intention of ordering a CT scan because, he says, it was a radical nephrectomy. With my pathology report, there is no reason to believe it has spread so a CT scan with dye is not necessary. However, since the surgery, I have developed a weird circulatory and blood pressure problem. Blood is pooling in my feet and my blood pressure changes when I change positions (i.e., sitting, standing, lying down). The highest blood pressure is when I lay down, but even then it is only around 125 over 82 or so. When I sit it goes to around 115 over 75 and when I stand it really goes down. Once it was 80 over 58. That scared me. On rare occasions I get dizzy because of this. Some people pass out. The BP problem is called orthostatic hypotension. Originally I was told this was a side effect of having taken my blood pressure medication for so many years. Anyway, not to bore everybody, after a lot of tests, they have run out of ideas as to what is causing these problems and have come up with two possibilities: some (Latin word) vein or something in the stomach may have become restricted due to the nephrectomy; or there is a cancer (renal cell or otherwise) in my stomach blocking the blood flow. They are really grasping at straws, I think. I’m told that the pooling of blood should not cause any long-term serious problems but there is that possibility of a cancer. I’ve decided that a CT scan with dye is not worth the risk to my remaining kidney, even though on a nephrologist’s advice they were going to give me some kind of medicine for a couple of days before and a couple of days after the scan to lessen the risk. That didn’t reassure me. So after my urologist said that from his perspective I didn’t need a CT scan with dye, my doctor and I agreed that I would go for a CAT scan tonight using that distasteful barium stuff and see if anything shows up. The CT scan will be ineffective for the restrictive vein possibility but it could possibly show a cancer. When they first diagnosed my kidney cancer, it was after one of these CT scans with barium. It was fuzzy so a scan with dye was done hours later and it confirmed there was a mass. So we are working on that same scenario. If something shows and it is unclear what it is, I guess I’ll go back for a CT scan with the dye. If nothing shows we are going to forget about the CT scan with dye completely. In the meantime, my feet are red and blue and I don’t have to worry about high blood pressure. Orthostatic hypotension can lead to heart problems eventually. I am just hoping that they can come up with another cause where I don't need that CT scan.
Mike

Comments

  • Beingbless
    Beingbless Member Posts: 46
    #2
    All the best
    Mike, all the best, you are in our prayers.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    Beingbless said:

    All the best
    Mike, all the best, you are in our prayers.

    BP etc
    Mike, can you tease out the problem a bit more? It sounds as if the nephrectomy was a success but your doc was already aware of another condition that would call for a CT with contrast and something has high-lighted that condition now. Is that correct so far? If so, is it the BP behaviour that has prompted the speculation? If it is, I feel constrained to offer some thoughts.

    You've mentioned fluctuations of BP, occasional dizziness, pooling of blood and anxiety about the dye. Working back through these:- is there any particular reason for fearing kidney damage from the contrast? (There are known to be real hazards with contrast so emergency equipment and procedures are at the ready but for all sorts of reactions unrelated to kidney crisis.) My situation is much more dire and I'm nearly 70 so the risk::benefit balance will be different but there has been no suggestion that I shouldn't have contrast.

    The pooling of blood is something you've been told not to worry about because it isn't associated with any long-tem problems.

    That leaves the dizziness and the varying BP. The dizziness with sudden postural change from lying/sitting to standing is very common and not something to be too alarmed about. I've experienced it all my life. Is this phenomenon dramatically different from what you are used to?

    Finally, your BP. An elderly neighbour of ours asked me for my thoughts about her BP a couple of weeks ago. She is over 80 and exhibits your pattern of behaviour. She has fainted and fallen down a number of times recently which is alarming. However, she had low BP throughout her life but now her systolic sometimes shoots through 200 and, obviously will be accompanied by a very large pulse pressure. It sounds as though your pulse pressure is really excellent and at our sort of age this is more important than either systolic or diastolic values, but, in any case, your ranges of systolic and diastolic sound fine.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #4
    Texas_wedge said:

    BP etc
    Mike, can you tease out the problem a bit more? It sounds as if the nephrectomy was a success but your doc was already aware of another condition that would call for a CT with contrast and something has high-lighted that condition now. Is that correct so far? If so, is it the BP behaviour that has prompted the speculation? If it is, I feel constrained to offer some thoughts.

    You've mentioned fluctuations of BP, occasional dizziness, pooling of blood and anxiety about the dye. Working back through these:- is there any particular reason for fearing kidney damage from the contrast? (There are known to be real hazards with contrast so emergency equipment and procedures are at the ready but for all sorts of reactions unrelated to kidney crisis.) My situation is much more dire and I'm nearly 70 so the risk::benefit balance will be different but there has been no suggestion that I shouldn't have contrast.

    The pooling of blood is something you've been told not to worry about because it isn't associated with any long-tem problems.

    That leaves the dizziness and the varying BP. The dizziness with sudden postural change from lying/sitting to standing is very common and not something to be too alarmed about. I've experienced it all my life. Is this phenomenon dramatically different from what you are used to?

    Finally, your BP. An elderly neighbour of ours asked me for my thoughts about her BP a couple of weeks ago. She is over 80 and exhibits your pattern of behaviour. She has fainted and fallen down a number of times recently which is alarming. However, she had low BP throughout her life but now her systolic sometimes shoots through 200 and, obviously will be accompanied by a very large pulse pressure. It sounds as though your pulse pressure is really excellent and at our sort of age this is more important than either systolic or diastolic values, but, in any case, your ranges of systolic and diastolic sound fine.

    BP etc (continuation)
    There is a vast wealth of papers on BP topics which, to me, collectively show how little we really know in this area. My observation is that most doctors and nurses who take blood pressures from us don't have the first clue about blood pressure. The conditions for taking meaningful readings are totally flouted. The advice that measures should be taken on both sides is honoured more in the omission than in the observance. A single measure is taken, once in a while, often with old and inadequately calibrated equipment, probably with an inappropriate cuff size and with no regard to the ambient conditions or individual's current status and treated as though it is highly informative. This is all quite ridiculous.

    Have you been using an ambulatory sphygmomanometer? Your BP is bound to vary in the sort of ways you have observed and I doubt whether what you are seeing is any genuine cause for concern. (Of course, I'm not saying that there isn't anything wrong with you - i would be crazy to say so - just that the figures you have quoted shouldn't scare you.)


    Now, maybe I'm entirely misguided and you should be worried, in which case I ought to be terrified. For a while now, I've been recording my own heart rate, systolic, diastolic and pulse pressures one or more times a day, under carefully observed, consistent conditions, with time of day recorded every time, and with 2 different makes of new, brachial sphygmomanometers and 1 radial one. I've systematically changed the order in which I deploy the 3 devices and left adequate refractory intervals between measurements. For some time I measured on both arms and wrists but currently do only left arm.

    I now have a large corpus of data that I hope I live long enough to analyse fully. I'm interested in many aspects, such as circadian patterns, particularly diurnal changes between day and night and the relationships between the four parameters.

    The one thing I can say is that, with me, the measurements can change quite dramatically in the course of 5 minutes, while sitting quietly, to a degree that makes the random, once in a blue moon, in uncontrolled conditions, measurements taken by our doctors or nurses not very meaningful.
  • MikeK703
    MikeK703 Member Posts: 235
    #5
    Texas_wedge said:

    BP etc (continuation)
    There is a vast wealth of papers on BP topics which, to me, collectively show how little we really know in this area. My observation is that most doctors and nurses who take blood pressures from us don't have the first clue about blood pressure. The conditions for taking meaningful readings are totally flouted. The advice that measures should be taken on both sides is honoured more in the omission than in the observance. A single measure is taken, once in a while, often with old and inadequately calibrated equipment, probably with an inappropriate cuff size and with no regard to the ambient conditions or individual's current status and treated as though it is highly informative. This is all quite ridiculous.

    Have you been using an ambulatory sphygmomanometer? Your BP is bound to vary in the sort of ways you have observed and I doubt whether what you are seeing is any genuine cause for concern. (Of course, I'm not saying that there isn't anything wrong with you - i would be crazy to say so - just that the figures you have quoted shouldn't scare you.)


    Now, maybe I'm entirely misguided and you should be worried, in which case I ought to be terrified. For a while now, I've been recording my own heart rate, systolic, diastolic and pulse pressures one or more times a day, under carefully observed, consistent conditions, with time of day recorded every time, and with 2 different makes of new, brachial sphygmomanometers and 1 radial one. I've systematically changed the order in which I deploy the 3 devices and left adequate refractory intervals between measurements. For some time I measured on both arms and wrists but currently do only left arm.

    I now have a large corpus of data that I hope I live long enough to analyse fully. I'm interested in many aspects, such as circadian patterns, particularly diurnal changes between day and night and the relationships between the four parameters.

    The one thing I can say is that, with me, the measurements can change quite dramatically in the course of 5 minutes, while sitting quietly, to a degree that makes the random, once in a blue moon, in uncontrolled conditions, measurements taken by our doctors or nurses not very meaningful.

    BP etc.
    Hi Tex,
    I surely wasn't expecting a response from you today considering what you are facing tomorrow. I thank you greatly for that.
    I can't go into a lot of detail right now but I'll try to answer a couple of questions and we can continue this when you return and are feeling up to it.
    The urologist was unaware of any problems after the nephrectomy. My GP has been dealing with me on the pooling and BP problems for a year now and has run out of ideas. He consulted with a specialist or two and they came up with the possibility of an inferior vena cava (IFV) problem -- either something exterior to the vena cava is causing it to constrict or perhaps a tumor within -- I think it's called tumor thrombus. The CT scan with contrast can answer both questions but without the dye the second one will go unanswered.
    As far as the dye is concerned, I was told by my GP that the radiologist he consulted said the dye is not a concern for somebody with one kidney if their GFR is above the standard, i.e., 60. Mine is 56 and considered at risk. The dye can cause my kidney to fail, thus my reluctance to agree to one. I don't know if the BP problem existed before my surgery or after it. When my BP was high, I never took it standing or lying down. I have been told that there is no concern unless the top number increases by more than 20 points when changing positions. It has done that a number of times. Lately, it has been a bit better. I was getting dizzy whenever I stood up before they figured out it was orthostatic hypotension. Now the dizziness is rare and not as bad. Maybe the problem is working itself out.
    I'm not sure if I have answered all your questions but I have to run now. Wishing you the best tomorrow. See you when you get back.
    Regards,
    Mike
  • littledarlin
    littledarlin Member Posts: 102
    #6
    MikeK703 said:

    BP etc.
    Hi Tex,
    I surely wasn't expecting a response from you today considering what you are facing tomorrow. I thank you greatly for that.
    I can't go into a lot of detail right now but I'll try to answer a couple of questions and we can continue this when you return and are feeling up to it.
    The urologist was unaware of any problems after the nephrectomy. My GP has been dealing with me on the pooling and BP problems for a year now and has run out of ideas. He consulted with a specialist or two and they came up with the possibility of an inferior vena cava (IFV) problem -- either something exterior to the vena cava is causing it to constrict or perhaps a tumor within -- I think it's called tumor thrombus. The CT scan with contrast can answer both questions but without the dye the second one will go unanswered.
    As far as the dye is concerned, I was told by my GP that the radiologist he consulted said the dye is not a concern for somebody with one kidney if their GFR is above the standard, i.e., 60. Mine is 56 and considered at risk. The dye can cause my kidney to fail, thus my reluctance to agree to one. I don't know if the BP problem existed before my surgery or after it. When my BP was high, I never took it standing or lying down. I have been told that there is no concern unless the top number increases by more than 20 points when changing positions. It has done that a number of times. Lately, it has been a bit better. I was getting dizzy whenever I stood up before they figured out it was orthostatic hypotension. Now the dizziness is rare and not as bad. Maybe the problem is working itself out.
    I'm not sure if I have answered all your questions but I have to run now. Wishing you the best tomorrow. See you when you get back.
    Regards,
    Mike

    CT tonight..
    Wishing you the best with your CT tonight. Hoping you get the answers you are looking.

    LD..
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #7
    MikeK703 said:

    BP etc.
    Hi Tex,
    I surely wasn't expecting a response from you today considering what you are facing tomorrow. I thank you greatly for that.
    I can't go into a lot of detail right now but I'll try to answer a couple of questions and we can continue this when you return and are feeling up to it.
    The urologist was unaware of any problems after the nephrectomy. My GP has been dealing with me on the pooling and BP problems for a year now and has run out of ideas. He consulted with a specialist or two and they came up with the possibility of an inferior vena cava (IFV) problem -- either something exterior to the vena cava is causing it to constrict or perhaps a tumor within -- I think it's called tumor thrombus. The CT scan with contrast can answer both questions but without the dye the second one will go unanswered.
    As far as the dye is concerned, I was told by my GP that the radiologist he consulted said the dye is not a concern for somebody with one kidney if their GFR is above the standard, i.e., 60. Mine is 56 and considered at risk. The dye can cause my kidney to fail, thus my reluctance to agree to one. I don't know if the BP problem existed before my surgery or after it. When my BP was high, I never took it standing or lying down. I have been told that there is no concern unless the top number increases by more than 20 points when changing positions. It has done that a number of times. Lately, it has been a bit better. I was getting dizzy whenever I stood up before they figured out it was orthostatic hypotension. Now the dizziness is rare and not as bad. Maybe the problem is working itself out.
    I'm not sure if I have answered all your questions but I have to run now. Wishing you the best tomorrow. See you when you get back.
    Regards,
    Mike

    CT scan and contrast dye
    Good luck Mike. As I said, my situation is a lot more dire (pun not intended!) than yours so the criteria may be evaluated differently but they had no qualms giving me contrast again, notwithstanding my eGFR being recently (path report) taken to be 53. Must also dash. Bath then drive to hospital.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    Texas_wedge said:

    CT scan and contrast dye
    Good luck Mike. As I said, my situation is a lot more dire (pun not intended!) than yours so the criteria may be evaluated differently but they had no qualms giving me contrast again, notwithstanding my eGFR being recently (path report) taken to be 53. Must also dash. Bath then drive to hospital.

    hypotension
    Mike, your numbers are not much out of whack. Have you had a change in your medicine or it's dose? Your pooling may be a result of your change in activity. Are you less active? Sitting around more than you did? I felt somewhat the same for about 2-3 months after my nephrectomy and had to cut my BP medication in half. I have since returned to my previous normal. I'm getting my scans with dye every 6 weeks. They just cut down on the dose. Hope you solve your problem.
  • MikeK703
    MikeK703 Member Posts: 235
    #9
    foxhd said:

    hypotension
    Mike, your numbers are not much out of whack. Have you had a change in your medicine or it's dose? Your pooling may be a result of your change in activity. Are you less active? Sitting around more than you did? I felt somewhat the same for about 2-3 months after my nephrectomy and had to cut my BP medication in half. I have since returned to my previous normal. I'm getting my scans with dye every 6 weeks. They just cut down on the dose. Hope you solve your problem.

    hypotension
    Hi Fox,
    Thanks. My sitting and lying down numbers have been closer to each other lately but for a while there was a 30 point difference between the two. That's, say, 130/80 lying down and 100/70 sitting. Standing was much lower. As low as 80 over 58. The times I was getting dizzy it must have been even lower. I was told that eventually I would pass out if it got much lower. I could have had this before surgery. I never checked my BP three ways, only sitting, and it was usually 125-130/80-85 WITH medication. They weaned me off of medication because of my dizziness expisodes, saying it was a long-term side effect of the medication. At the same time I went on a low-sodium diet which helped to keep the sitting numbers low. Unfortunately, the standing numbers went down too. My pulse rates are too high also. Standing (although BP is low) the pulse rate is between 100 and 120, and lying down it is sometimes in the 70s-80s. Sitting, it's in the 80s and 90s.
    Scans with dyes are necessary for folks who are at risk for mets. With somebody like me, having been diagnosed with chronic kidney disease (low GFR), and put in Stage 1 category after surgery, with less of a chance of mets, they don't want to take the chance of using the dye unless it is absolutely necessary, and then with some kind of medication to cut the risks. But that dye can harm the kidney if you are already diagnosed as having chronic kidney disease. If your GFR is good then they don't worry so much about it.
    Regards,
    Mike

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