Nick's Remaining Kidney & Blood Pressure Issues

TerriNick

We had to see a cardiologist about Nick's blood pressure. His BP has not been controlled with either Amlodopine, Felodipine, Ramipril or Losartan although at least with the Losartan there were no side effects. However finally the Oncologist suggested that Nick should see a cardiologist - this was during his 3rd cycle of Sutent.

 

We saw him and I was a little concerned that he mentioned very casually about a secondary tumour in the pericardium which has never been mentioned by his Oncologist. All we have been told is that he has a secondary in his lung with mets also on the pelvic bone and collarbone. We have an appointment to see his oncologist on Thursday at which time I will be asking more about this.

However, with the BP he was asked to wear a 24 hour BP monitor and yesterday we received the copy letter from the cardiologist. Can anyone help decipher it please?

"Average daytime BP is 161/105 and no nocturnal dip with a blood pressure of 160/105. The urine albumin creatinine ratio is elevated at 3.74 indicative of the present of end-organ damage. U&Es again are slightly abnormal with a creatinine of 114. Thyroid function is normal. NTproBNP is normal so no evidence of heart failure at this stage. The echocardiogram shows some mild LVH with an IVSD of 1.3, posterior wall of 1.2, there is mild aortic sclerosis but in other respects the heart is normal."

Now when he had an echo and ECG in November 12 we were told that he had the heart of a healthy 40-45 year old (Nick is 58). Nothing was said when he was in hospital in December 12 for the nephrectomy either.

Nick completely freaked out yesterday when he read the words 'end organ damage' especially as the cardiologists secretary also told him over the phone that his only remaining kidney had end-organ damage. He is now terrified that his kidney is failing and that he will end up either on dialysis or dead.

The cardiologist has suggested Losartan 50mg BD with  a small dose of Indapamide (diuretic) - does BD means 50mg twice a day or 50mg in a day ie 25mg morning and 25mg evening? He is currently taking 25mg morning and 25mg evening.

Any help, clarification or advice that anyone can give would be so helpful and very gratefully received.

It was bad enough that he only realised in the last two weeks that Sutent will not last forever and he will have to (at some time in the future) move to another TKI or hopefully a PD1 if they are (a) around and (b) Nick is still alive (as he puts it). 

He is feeling really down and reeling from the cardiologists report.

Please help....

Terri

Texas_wedge

Sutent, BP, kidney function

Terri, doesn't it just show how poor some doctors are at relating to their patients?! 

Most of us here don't have any medical education - I certainly don't - so you must give primacy to what Nick's docs say.  However, a few thoughts that may be of some cheer.  First is that there are indeed other drugs for Nick but there are people who've been on Sutent for many years so it's far too early to get dispirited. 

You'll want to press his oncologist for more detailed information, following the cardio report.  There's a difference between noting an indication of some end-organ damage and talking about incipient organ failure.  His BP is obviously too high and getting that under effective control is a matter of urgency.  Has he been on a cocktail of BP meds? It's well known that for the majority of patients good control calls for the use of several drugs at the same time (usually ones with complementary modes of action).

His creatinine level is no great cause for concern (mine has come down from 122 to 110 in the last few weeks - these figures do fluctuate quite a bit.

In your shoes, I'd be getting the lowdown in more detail from his onc, ensuring that his BP is brought down to a better level and then seeing how everything looks at next labs reports.  His high BP is bound to be exacerbated by anxiety.  Does he do any meditation, guided imagery, positive affirmation, progressive relaxation or any such to help to keep stress down?  If not, seeking some counseling about this aspect could be very helpful.

alice124

Blood Pressure

Terri,

Blood pressure historically takes some trial and error before getting it under control and it certainly sounds like Nick's experience is one of the  difficult cases. BUT there are lots of BP medications out there. One friend of mine takes three different drugs every day or a BP cocktail as Tex says. Uncontrolled blood pressure has a negative impact on all of our organs and it is critically important to get it under control. But cardiologists have a huge toolbox and will use it if they need to use it. Don't panic yet; it will just work against you.

When John was getting ready for the trial he is on (a year ago), he had gone through the tests and everything was fine. Then one physician's assistant (PA) picked up on a pulmonary branch blockage that freaked us both out. We had no idea. Plus the PA was pulling the plugs on everything saying there was no way he would get in trial. John was despondent; I was holding back tears; and we were both in a hold status. Once his doctor received the report, he pretty much dismissed the branch blockage as something he had probably had since childhood (hereditary). Described it as "no big deal."  Advised John to see a cardiologist down the road, but pretty much dismissed it. I say this because I'm guessing Nick's doctor wouldn't be too happy with his secretary evaluating the numbers. Wait until you talk to Doctor.

I know all of this is very unsettling, but wait until you meet with your doctor.  I don't think it will sound nearly as dismal.  When is your next face-to-face meeting? I hope soon. The blood pressure issue needs to be addressed ASAP.

Hang in there!

icemantoo

alice124 said:

Blood Pressure

Terri,

Blood pressure historically takes some trial and error before getting it under control and it certainly sounds like Nick's experience is one of the  difficult cases. BUT there are lots of BP medications out there. One friend of mine takes three different drugs every day or a BP cocktail as Tex says. Uncontrolled blood pressure has a negative impact on all of our organs and it is critically important to get it under control. But cardiologists have a huge toolbox and will use it if they need to use it. Don't panic yet; it will just work against you.

When John was getting ready for the trial he is on (a year ago), he had gone through the tests and everything was fine. Then one physician's assistant (PA) picked up on a pulmonary branch blockage that freaked us both out. We had no idea. Plus the PA was pulling the plugs on everything saying there was no way he would get in trial. John was despondent; I was holding back tears; and we were both in a hold status. Once his doctor received the report, he pretty much dismissed the branch blockage as something he had probably had since childhood (hereditary). Described it as "no big deal."  Advised John to see a cardiologist down the road, but pretty much dismissed it. I say this because I'm guessing Nick's doctor wouldn't be too happy with his secretary evaluating the numbers. Wait until you talk to Doctor.

I know all of this is very unsettling, but wait until you meet with your doctor.  I don't think it will sound nearly as dismal.  When is your next face-to-face meeting? I hope soon. The blood pressure issue needs to be addressed ASAP.

Hang in there!

Blood Pressure

Terri,

 

Most if not all of us with 1 Kidney have Stage 3 CKD (Cronic Kidney Disease) ie moderate Kidney damage. It sounds a lot worse than it is. We just have to accept the fact that we have to watch and take care of our Kidney more. HBP adversely effects your Kidney and loss of Kidney function adversely effects your heart. It is therefore important that he get his HBP under control sooner rather than later. Loss of Kidney function is much more likeky to cause a heart condition than Kidney failure. A GFR reading between 31 and 59 is  considered  Stage 3 CKD. Additionally as my Neprhrologist explains 1/2 the normal population has Stage 3 CKG by the time they reach 70 anyway sp it is age related as well..

In summary  loss of moderate kidney function goes with the territory. Keeping HBP in check improves our heart and kidney as we go forward.

 My GFR went as low as 41, but improved to 47 as my HBP was under better control.

Icemantoo

NanoSecond

Kidney function

Hi Terri,

This is from Wikipedia ( http://en.wikipedia.org/wiki/Microalbuminuria ):

"To compensate for variations in urine concentration in spot-check samples, it is helpful to compare the amount of albumin in the sample against its concentration of creatinine. This is termed the albumin/creatinine ratio (ACR) and microalbuminuria is defined as ACR ≥3.5 mg/mmol (female) or ≥2.5 mg/mmol(male), or, with both substances measured by mass, as an ACR between 30 and 300 µg albumin/mg creatinine.For the diagnosis of microalbuminuria, care must be taken when collecting sample for the urine ACR. An early morning sample is preferred. The patient should refrain from heavy exercises 24 hours before the test. A repeat test should be done 3 to 6 months after the first positive test for microalbuminuria. Lastly, the test is inaccurate in a person with too much or too little muscle mass. This is due to the variation in creatinine level which is produced by the muscle."

NanoSecond

icemantoo said:

Blood Pressure

Terri,

 

Most if not all of us with 1 Kidney have Stage 3 CKD (Cronic Kidney Disease) ie moderate Kidney damage. It sounds a lot worse than it is. We just have to accept the fact that we have to watch and take care of our Kidney more. HBP adversely effects your Kidney and loss of Kidney function adversely effects your heart. It is therefore important that he get his HBP under control sooner rather than later. Loss of Kidney function is much more likeky to cause a heart condition than Kidney failure. A GFR reading between 31 and 59 is  considered  Stage 3 CKD. Additionally as my Neprhrologist explains 1/2 the normal population has Stage 3 CKG by the time they reach 70 anyway sp it is age related as well..

In summary  loss of moderate kidney function goes with the territory. Keeping HBP in check improves our heart and kidney as we go forward.

 My GFR went as low as 41, but improved to 47 as my HBP was under better control.

Icemantoo

Kidney damage

Hi Iceman,

Are you sure about this?

Although those of us with only one kidney may be "classified" as having Stage 3 CKD I don't believe that means that it is actually suffering real damage.

In fact, the remaining kidney is perfectly healthy.  And for many people it usually grows slightly larger to help make up for the lack of a second.

However, finding albumin in the urine DOES indicate kidney damage of some sort.  It indicates that protein in the blood serum is not being filtered and/or recycled properly.

dhs1963

NanoSecond said:

Kidney damage

Hi Iceman,

Are you sure about this?

Although those of us with only one kidney may be "classified" as having Stage 3 CKD I don't believe that means that it is actually suffering real damage.

In fact, the remaining kidney is perfectly healthy.  And for many people it usually grows slightly larger to help make up for the lack of a second.

However, finding albumin in the urine DOES indicate kidney damage of some sort.  It indicates that protein in the blood serum is not being filtered and/or recycled properly.

The proem is medical definitions.

By definition, we have CKD....most of us only have one kidney, so we have reduced kidney function.  Typically, our kidney function is fine.  But it is reduced.   I know my Creatinine level defines me as Chronic Kidney Disease.   The nephrologist said I have a log way to go before worrying about it.  

Now, with only one kidney, there are issues:  we have lost the redundancy in kidneys, so we need to protect them more.  With blood pressure, it must be under control.  With Diabetes, it must be under control.  Rugby is probably not a good idea.

Now, the blood pressure may have damaged the kidney.  

For most of us, the CKD is not a big deal.  For me, the only real impact is with the contrast for the CT.  The Dr's really want the contrast.  This time, they will do other tests to see if I can have it.  With mRCC, they want to see my insides better.

 

NanoSecond

dhs1963 said:

The proem is medical definitions.

By definition, we have CKD....most of us only have one kidney, so we have reduced kidney function.  Typically, our kidney function is fine.  But it is reduced.   I know my Creatinine level defines me as Chronic Kidney Disease.   The nephrologist said I have a log way to go before worrying about it.  

Now, with only one kidney, there are issues:  we have lost the redundancy in kidneys, so we need to protect them more.  With blood pressure, it must be under control.  With Diabetes, it must be under control.  Rugby is probably not a good idea.

Now, the blood pressure may have damaged the kidney.  

For most of us, the CKD is not a big deal.  For me, the only real impact is with the contrast for the CT.  The Dr's really want the contrast.  This time, they will do other tests to see if I can have it.  With mRCC, they want to see my insides better.

 

CKD

Yes, we have reduced kidney function simply because we have one less of them.  But the remaining kidney did not become unhealthy or damaged simply because the other one was removed.  "Disease" to me means unhealthy.  Albumin in the urine is unhealthy and does indicate "disease".  CKD because we simply have 1/2 the "normal" amount of them is just a classification.

Otherwise, I fully agree with you.  We need to take care of the kidney and protect it.  But it should not be thought of as "diseased".  Not unless it is, of course.

My creatinine level has remained steady at 1.0 mg/dL ever since my left nephrectomy.  My wife, with two healthy functioning kidneys, has a creatinine level of 0.8 mg/dL. So why should I be considering mine to be "diseased" or even of "reduced function"? 

Yes, others may have high levels of creatinine - and they should certainly acknowledge that they have reduced function.  But I object to making a blanket, generalized statement about the entire population of RCC patients.  Kidney function varyies patient by patient (and can also change based on age and other factors, of course).

icemantoo

NanoSecond said:

Kidney damage

Hi Iceman,

Are you sure about this?

Although those of us with only one kidney may be "classified" as having Stage 3 CKD I don't believe that means that it is actually suffering real damage.

In fact, the remaining kidney is perfectly healthy.  And for many people it usually grows slightly larger to help make up for the lack of a second.

However, finding albumin in the urine DOES indicate kidney damage of some sort.  It indicates that protein in the blood serum is not being filtered and/or recycled properly.

Am I sure of this?

Neil, this is basically the view of my NEPHROLOGIST which is take the CKD stage 3 definition with a grain of salt, but make sure my GFR level does not go down any further so as to avoid Cardiac and Kidney issues in the future. And a big part of that is HBP as I can not do anything about my age and the fact that I have only one kidney.

 

Icemantoo

NanoSecond

icemantoo said:

Am I sure of this?

Neil, this is basically the view of my NEPHROLOGIST which is take the CKD stage 3 definition with a grain of salt, but make sure my GFR level does not go down any further so as to avoid Cardiac and Kidney issues in the future. And a big part of that is HBP as I can not do anything about my age and the fact that I have only one kidney.

 

Icemantoo

Thanks

Yes, that makes more sense.  I think the CKD classification is only there to serve as a serious "heads-up" - to pay attention to keeping that remaining kidney healthy.  High blood pressure is the most serious (and common) threat.  Keeping adequately hydrated is another.

But the reason that it is important not to consider the orphan kidney as "diseased" is because there are other warnings that do not apply. For example, there is no reason to cut back on eating proteins when your kidney is healthy.  Nor for ingesting sufficient magnesium, etc.

TerriNick

Texas_wedge said:

Sutent, BP, kidney function

Terri, doesn't it just show how poor some doctors are at relating to their patients?! 

Most of us here don't have any medical education - I certainly don't - so you must give primacy to what Nick's docs say.  However, a few thoughts that may be of some cheer.  First is that there are indeed other drugs for Nick but there are people who've been on Sutent for many years so it's far too early to get dispirited. 

You'll want to press his oncologist for more detailed information, following the cardio report.  There's a difference between noting an indication of some end-organ damage and talking about incipient organ failure.  His BP is obviously too high and getting that under effective control is a matter of urgency.  Has he been on a cocktail of BP meds? It's well known that for the majority of patients good control calls for the use of several drugs at the same time (usually ones with complementary modes of action).

His creatinine level is no great cause for concern (mine has come down from 122 to 110 in the last few weeks - these figures do fluctuate quite a bit.

In your shoes, I'd be getting the lowdown in more detail from his onc, ensuring that his BP is brought down to a better level and then seeing how everything looks at next labs reports.  His high BP is bound to be exacerbated by anxiety.  Does he do any meditation, guided imagery, positive affirmation, progressive relaxation or any such to help to keep stress down?  If not, seeking some counseling about this aspect could be very helpful.

BP issues

Hi Tex

We saw his Onc last Thursday who told us not to take what the cardio had written too literally. She did suggest that Nick do what the cardio suggested and increase the Losartan to 50mg twice a day but the cardio also suggested that if that dose didn't work to add in Indapamide. Nick and I talked about it and decided to keep him at 25mg twice a day of Losartan to keep the risk of side effects to a minimum. We asked his GP yesterday for Indapamide and he starts that today at 1.25mg in conjunction with the Losartan. So fingers crossed that it works and lowers his BP.

As for the visualisation / counselling etc. I have already got him 3 CDs from the Simonton Institute, And I am a psychotherapist and counsellor by profession specialising in stress, depression and anxiety - whilst I don't treat him for ethical reasons I am there if he needs to talk and offload, but I have to say that he isn't the type that will go for counselling. It was hard enough to get him to try the CDs out and he isn't using them any more. I need to find some new ones I think, but they cannot be too 'out there' or 'spiritual' because he just won't listen to them. He is a scientist type and needs more concrete visualisation for him.

If you have any suggestions for where to look for CDs then I am all ears

GSRon

NanoSecond said:

Kidney function

Hi Terri,

This is from Wikipedia ( http://en.wikipedia.org/wiki/Microalbuminuria ):

"To compensate for variations in urine concentration in spot-check samples, it is helpful to compare the amount of albumin in the sample against its concentration of creatinine. This is termed the albumin/creatinine ratio (ACR) and microalbuminuria is defined as ACR ≥3.5 mg/mmol (female) or ≥2.5 mg/mmol(male), or, with both substances measured by mass, as an ACR between 30 and 300 µg albumin/mg creatinine.For the diagnosis of microalbuminuria, care must be taken when collecting sample for the urine ACR. An early morning sample is preferred. The patient should refrain from heavy exercises 24 hours before the test. A repeat test should be done 3 to 6 months after the first positive test for microalbuminuria. Lastly, the test is inaccurate in a person with too much or too little muscle mass. This is due to the variation in creatinine level which is produced by the muscle."

Not unusual

Oh yes.. sometimes when a Dr goes outside their primary area of expertise it can be interesting...  And that is why your Onc referred you to a Cardio Dr... a good choice, but your Cardio Dr, well.. maybe went a bit too far.. just maybe.   But I am a bit surprized your Cardio Dr did not give you more sample readings from different times of the day, both the high and the low.   

OK, here is what little I know..  I have severe sleep apnea, but in my 12 day hospital stay I showed no symptoms, zero.. in fact I was told I was wrong..  The body is an amazing thing... while under all those drugs and all the tension etc, I was pretty much OK, and besides, I got woken up each hour for testing...  My Pulmonary Dr just laughed and said let's do a "real" test... and sure enough, there was a big issue..   But with my RCC, my Pulmonary Dr also referred me to a Cardio Dr.   My Cardio Dr is all over my RCC in terms of how she treats me..  She looked up the Votrient and then made a list of drugs to avoid and a short list of drugs she can use with me.. And her follow up is directly aimed at how my blood pressure is doing, based on the Votrient, NOT based on just what would be normal on no RCC drugs.  So, yes your BP is high, and your Cardio Dr should be treating you accordingly, while considering you are on Sutent.  And not just looking at you as a high BP person..!

If you do not already have one, I suggest you get your own BP monitor, one that records the data, and use it at least twice a day, maybe three times at first and look for patterns yourself.  For me, my BP is highest in the morning, normal throughout the day, and sometimes very low just before bedtime..  This is my pattern and my Cardio Dr is fine with it, as I take my BP drug in the morning and am fine most of the day..  We are a TEAM, and I like it...

Good Luck

Ron