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Another New Doctor :-(

HPRonhovde
Posts: 22
Joined: Feb 2013

Received a call from my Family Doctor that my kidney function numbers have been going bad the last two tests so he wants me to see a nephrologist (sp). (Why aren't words like that in the spell checker?Smile)  I said a "What?'.  Then he explained.  I guess it is to be expected when you loose one kidney the other one has to work harder and that could make things go bad.  Infact, I had been wondering about that idea for a while and now the question has been answered.  My numbers are boarder line right now 2.08 where last spring it had been 1.38.

I have no idea what to expect. I am bringing with me the last blood tests that were run and the one from last spring so he can see the trend.  Should I get a copy of the pathology report for him also? I want it for my records any how.  Is there anything else he may need or want that I can gather in advance?  Is there anything I should be sure to ask?

 

Thanks for your thoughts,

Ron

 

todd121
Posts: 515
Joined: Dec 2012

I also just saw a nephrologist this week. It was routine to talk about kidney health, diet and nutrition.

Have you been getting imaging followups since your kidney was removed? I have a small cyst in my other kidney. I've heard that cysts or additional tumors can cause problems with the other kidney. I wonder if he would want to see your imaging followups if you had a CT scan recently? I've never heard that they othe kidney can go bad just because we have one. In fact, I've heard the opposite. My nephrologist told me that people who donate a kidney tend to live longer than the general population, so one kidney alone is not an issue.

One thing he did tell me was to keep my salt low and do whatever I can to control my blood pressure, because unregulated blood pressure can damage the kidney. The other thing he told me was to avoid eating too much protein. He said high protein can damage the kidneys.

I hope you find the source of the problem and they can treat it for you.

All the best,

Todd

icemantoo's picture
icemantoo
Posts: 1481
Joined: Jan 2010

A major concern after RCC surgery is Kidney function. This is normally measured by GFR which eqates your numbers with whether or not you have CKD=  Chronic Kidney   Disease and its stage. At age 69 with 1 Kidney I have a 45 GFR (up from 41) which is Stage 3 CKD. My Nephrologist thinks those numbers are close to a normal at my age with 1 Kidney. The concern with CKD is how that relates to your general health. That is why high BP is important. Like the loss of a kidney or CKD it reduces your GFR. While you can not control how many kidney's you have or your age, you can control high BP.

 

Icemantoo

 

 

HPRonhovde
Posts: 22
Joined: Feb 2013

With your help now I have something to look for that can be quantified and something I can ask about.

 

Thanks

Ron

HPRonhovde
Posts: 22
Joined: Feb 2013

Todd,

It is amazing it is spelled like it sounds.

Thanks for the insight.  I will see mine on Tuesday.  The diet suggestions will not be a problem i'm on a low salt diet because of diabetes and congested heart failure.  The harder part will be low protein, I do like my meat.  My wife has been trying to get us on a more healthy diet and I think it is helping. 

This is all a life changing education with a very short and sharp learning curve.

I'm finding it hard to be patient.  I'm used to knowing what is going on and now I have no idea where any of this is heading. I've been a problem fixer, computers and networks, all my life so waiting on others to help goes against the grain. Being 'retired' and not having something important to look forward to everyday hard to take after 55 years of working. 

Thanks for letting me get that off my mind.

 

Ron

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Ron,

Even if you don't plan to alter your diet I would like to suggest that you read a document that I have prepared that explains the science and rationale behind doing exactly that.  There is much, much more to it than just cutting back on eating meat. There are many other things that you, in particular, should be focusing on (since you have mentioned that you also have been dealing with both diabetes and congestive heart failure).

If you will email me at: n.feldman@videopost.com

I will be happy to directly email you what I have learned about what should be considered a proper diet for RCC patients. In addition it explains why, even though I have been taking the maximum dosage of Sutent (50mg/day) since August, I have had no significsnt side effects.

It is a 51-page .pdf document so I can't just post it all here.

Best wishes,

-NanoSecond (Neil)

HPRonhovde
Posts: 22
Joined: Feb 2013

I'm sending you a quick message so you can send me you PDF file.

Thanks,

Ron

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

It's on its the way through the Luminiferous Aether.

HPRonhovde
Posts: 22
Joined: Feb 2013

Saw the nephrologist this afternoon and in a very calm voice he said "at my age the reduced kidney function was to be expected".  He did something no other Dr has done and that is to take my BP twice, once sitting and one standing.  That was a very good explanation for my getting dizzy when I stand.  My BP sitting was 126/53 when standing, immediately after taking it sitting, it was 108/53 a drop of 18 points. To combat that issue he took me off my BP meds, Losartan. I was on a minimal dosage as it was. He also change my diuretic, furosemide, water pill, from 3 per day to one every other day.  He said both of them are 'not kidney friendly'. If I have to go back on them I will have to ask for Kidney Friendly Versions. :-) 

He scheduled me for blood tests before I return in a month to see how much the kidney function has improved based on both the change in meds and continued recovery after the surgery. 

I as very happy with the results of the visit after lamenting about how bad things could be earlier.

Oh Yes, one other thing, I had been taking my BP several times a day after the first med change last month. Now he wants me to take it twice a day but in both the sitting and standing positions at each test.  With a minor change to my spreadsheet I'm ready to start tomorrow.

Thanks to all who listened.

Ron

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Ron, sometimes the lifestyle changes one goes through are hard for those not used to taking medication, or having blood work ,scans, and living with the dreaded cancer diagnosis. You sound very well adjusted. Good work. Fox.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

All very interesting Ron!  I am keen to learn as much more as your nephrologist cares to vouchsafe about BP measurement.  I believe that very few doctors or nurses know much about accurate BP measurement or its significance.  A great deal more has been learnt, even in the last year or so, that makes a nonsense of what most medics think they know about it. 

Could you ask your nephrologist for guidelines as to typical normotensive and hypertensive (and hypotensive!) values when measured in standing position and the relationship to heart rate?

I'd also be interested in learning more about your spreadsheet.

HPRonhovde
Posts: 22
Joined: Feb 2013

I have another appointment with the nephrologist in a month and will pass on your questions.  Provided my memory last that long. :-)

 

The spreadsheet is something I thru together to keep track of my BP after my first med change.  I enter the BP and Pulse and it computes the other fields and the stats at the top.  The Pulse Pressure and Ratio came from some research I did on BP which indicated doctors are looking at those numbers now also.  It was done with Open Office Calc, a free Java product that gives you most of the tools you need to run and office.

 

                BP        Pulse    Pulse Pressure   
Median     139/58        60    80   
Average    138/59        62    79   
Mode        140/58        60    82   
Max          157 - 71     73    95   
Min           119 - 49     60    54   
                           
Blood Pressures                           
Date    Time      Sys/Dia  Pulse   Pulse Pressure    Ratio
01/29/1315:00    130/57    61    73        2.28
01/29/1318:00    136/54    62    82        2.52
01/29/1320:00    130/61    66    69        2.13
01/30/1308:25    120/58    60    62        2.07
01/30/1312:34    137/52    60    85        2.63   
01/30/1314:22    134/58    65    76        2.31
01/30/1316:50    139/58    64    81        2.40
01/30/1319:04    152/57    67    95        2.67
01/30/1321:00    139/58    62    81        2.40
01/31/1300:25    140/55    62    85        2.55
01/31/1310:02    151/65    60    86        2.32
01/31/1311:59    130/58    62    72        2.24
01/31/1314:50    130/65    60    65        2.00
01/31/1318:15    142/62    60    80        2.29
01/31/1321:00    137/58    67    79        2.36

 

If you would like a copy send me your email address and I will send you a clean file.  You would need to download and install OpenOffice from the web, here is the url:   http://www.openoffice.us.com.

my email is: hpronhovde at gmail dot com

 

Ron

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ron, many thanks for the info. and I'm glad to see you opt for non Micro$oft products.  [If you're interested, I'll maybe send you a batch of articles, studies and websites on recent advances in knowledge of BP - too busy currently but I guess it's not urgent!?]

I presume the figures you've recorded are all in a sitting position?  Are you now recording BP when standing also? It will be easy to follow many of the rules for the seated position  (on an empty bladder,  a good time after a meal, alcohol, coffee, a hot bath) but may be more problematic in respect of stability of the system?  Will you take the standing measure after standing still for, say, 5 minutes?

I'm a bit alarmed by your pulse pressure which looks very high.  I don't know whether you're aware, but at our age (I'm a little older than you) pulse pressure is the most diagnostically important measure and ideally won't be much over 50 or so.  I'm watching mine closely at present, since it's been out of kilter.   When yours reached 95 it looks as if systolic was too high plus diastolic was too low. 

Do you think the ratio figure is worth recording - presumably laid on by the s/w designer (typically having a 'good idea' without actually knowing about the content domain).  It is a good deal too bland, I think, compared with the pp figure which tells the story more dramatically.

I've been recording my own BP for more than a year, with three different monitors, one radial and two brachial, sometimes several times a day, each - a lot of data.  I do so in a strict rotation and also at various times of day and night. (Are you regular or a reverse dipper?)  I also try to record relevant factors, such as time after a hard workout, after change of meds, following a night with very little sleep, and such like.

Your central tendency measures are all very similar (and another instance of s/w design without proper requirements capture!) and so just one would probably suffice? The summary figures appear to relate to a larger corpus of data than comprised by the individual measurements you've listed but I wonder whether it's a good idea to pay much attention to them anyway.  Doctors tend to be swayed too much by average figures while the actual variability is lost in that condensation, although it is very important - more so, it seems, than has been realised until very recently.

Could you be so kind as to clarify what the max 157 - 71 and min 119 - 149 reflect?

I tend to throw up anomalous phenomena (like the other day finishing a hard rowing workout gasping for breath but with a heart rate (for the full minute) of 43,  a few minutes later, which I still can't account for).  Your measures look fairly consistent, day on day, but I'd be glad to know whether that holds for consecutive measurements close together in time.  I find that my diastolic holds steady most of the time but my systolic can easily change by twenty or thirty points up or down in the space of five or ten minutes, without any change of posture, activity etc.  I'm not a standard product in most respects but I wonder whether such variance is common among humans/cancer patients or whether it's something I should be concerned about.  Do you have any personal data to compare, to give any informal indications about this?

Thanks for saying you'll try to remember to put my earlier questions to your nephrologist and I'm delighted that he is disposed to investigate in the way he is doing.

HPRonhovde
Posts: 22
Joined: Feb 2013

You have asked some very good questions and I will try to answer them all. 

First, yes, I am not a big fan of Micro$oft.  They have not had an original product or the best product, they just market better than others. IMHO.

I would be interested in some of the BP information you have.  This whole process has me learning about things I just took for granted or never thought about. Life's lessons learned.

Now on to the spreadsheet.  You are correct the data I showed in the post was only a small subset of what I had collected. I was trying to show what I was doing. When I originally started recording it was so that I had something for my cardiac dr to see what was happening since he originally prescribed the meds.  The stats at the top were only my trying to see if I could get meaningful summary data out of all the entries. 

Rignt now I am taking the standing BP just like the DR did.  Right after the seated test the only difference is I'm standing and my are is hanging down rather than on the arm of the chair.

The pulse pressure was something I read about and the article said DRs are looking at it more now the they used to.  The article did not give background on good or bad numbers.  You seem to be very knowledgeable on this so I will add a bit of my medical history.  I was diagnose with congestive heart failure about 12 years ago and diabetes about 8 years ago.  I had an ICD implanted almost 4 years ago, my goodness time if flying, so my heart rate will not drop bellow 60.  When the ICD was implanted I had an ejection fraction of approximately 30%.  My old Dr in Georgia used to watch that very closely but the Dr here in Florida has not mention it after any of the tests. Guess I need to ask. 

The ratio was another measurement in the same article as pulse pressure I did not see it as really showing much to my limited knowledge. I had another number I did not put on the sample data I showed you, it was my simple attempt to see if the numbers came anywhere close to the ejection ratio I had been given.  All that data seemed to run much higher than I expected but I will have to ask my cardiologist at my next appointment.

All my BP check are with an inexpensive automatic BP machine.  I am not familiar with your comment about regular or reverse dipper.

The summary stats at the top of the page were just that.  I know if you show someone a list of 100 tests done over a period of time that will look and say.  OK.  The Min and Max numbers were just that, the min and max pressures measured. It was something I added to get an idea of how wide a swing my pressure were going through.  The other stats, Average, Mean, and Mode were not actual measurements but the statistical value of each.  I thought they were more representative of actual tests so I displayed them in the same format. The Min and Max value I did not want to be thought of a test values so I displayed them differently.

I have not gathered any data on BP taken at short intervals.  I may look into that after I get the data for the nephrologist.  I will ask him about the why's and expected results of taking the BP sitting and standing.  I am as curious as you but at the time it came up we were beginning to get into other peoples time with him. 

 

If I have failed to adequately cover a question please let me know.  This started out as something to verify result after a med change and keep me occupied tweaking it afterwards.  I do it because it is fun.

 

Ron

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