Hematuria and Aortic Valve Replacement

[BionicBuddy]

Hello. I'm not really new here. I last posted almost 10 years ago. My 64 year old husband has a bicuspid aortic valve which has now progressed to severe aortic stenosis. We have been in the waiting room for 22 years. He is asymptomatic, but the cardiologist asked me 3 times during the last visit, if I knew CPR. We don't climb up steep mountains in the boonies anymore (even though he could do so and leave me in the dust). We just do easy gentle hills to err on the side of caution.

Barring some miracle, we're mentally preparing for SAVR this year. We understand that the following are questions for our cardiologist and future cardiothoracic surgeon, but perhaps someone on here has some experience with these issues? Previous posts related to my question are very old and I'm looking for newer info.

My husband also has BPH. He is pretty much asymptomatic - no problem with urination, erection, ejaculation and no discomfort. He is on no meds because he doesn't need to be. He just has recurrent and periodic episodes of microscopic hematuria that he knows about because we use Chemstrip dip sticks to test for blood from time to time. He had only 2 episodes of gross hematuria last year.

During the last appointment, the cardiologist mentioned to us, - because he is in such great shape and in great health - that a mechanical valve would best suit him for longevity, plus my husband never wants to do this again.

We are concerned about Warfarin, especially with his pre-existing hematuria. Has anybody else had these issues?

What about future Valve-in-valve replacement with a tissue valve when the tissue valve wears out? Thoughts?

Also, anybody from Vancouver on this site? Does anyone have any names of great, skilled and very competent cardiothoracic surgeons in Vancouver?

Thanks so much in advance for the consideration of my questions.

 

[Chuck C]

Hi and welcome back to the forum!

During the last appointment, the cardiologist mentioned to us, - because he is in such great shape and in great health - that a mechanical valve would best suit him for longevity, plus my husband never wants to do this again.

At age 64, it is somewhat of a coin toss as to whether to go mechanical or tissue. Between the ages of 60 and 70 most guidelines indicate that either valve choice is reasonable, based on best outcomes for longevity following surgery. For what it's worth, there was a major study which found that under 65 that mechanical has an advantage, but that advantage goes away at about 65. So, he's right there where it is a coin flip.

My husband also has BPH. He is pretty much asymptomatic - no problem with urination, erection, ejaculation and no discomfort. He is on no meds because he doesn't need to be. He just has recurrent and periodic episodes of microscopic hematuria that he knows about because we use Chemstrip dip sticks to test for blood from time to time. He had only 2 episodes of gross hematuria last year

This could tip the scales for him to choose tissue valve. I really don't know how serious the bleeding is from his BPH hematuria, or how much warfarin will affect this. Hopefully there will be another member with this condition who can share. Also, his urologist and surgeon should be able to give guidance here.

At 64, he would likely get 15 to 20 years out of a tissue valve. The Inspiris Resilia valve has an anti-calcification treatment, which could push that closer to the 20 year range. So, doing the math, that would take him to 79 to 84 probably. At that point, TAVR would probably be a good option. The Resilia is built to accomodate a future TAVR, with an expanding ring. However, being eligible for a TAVR is not a certainty, so there would be a real possibility that he will need a future open heart surgery with a tissue valve.

One suggestion that I would have, regardless of valve choice, is to not wait for symptoms. When my aortic stenosis became severe 2 years ago, I was given the choice to get surgery soon or wait for symptoms. I chose to get it done in 3 weeks. There have been studies done showing better long term outcomes if surgery is done before the onset of symtoms.

Some studies pertaining to getting early surgery with severe stenosis, or waiting for symptoms:

https://www.jacc.org/doi/abs/10.1016/j.jacc.2015.10.001
https://www.nejm.org/doi/full/10.1056/NEJMoa1912846

Best of luck in your decision and in your husband's procedure. Please keep us posted.

 

[pellicle]

Hi

During the last appointment, the cardiologist mentioned to us, - because he is in such great shape and in great health - that a mechanical valve would best suit him for longevity, plus my husband never wants to do this again.

while at 64 you'd likely get over 15 years from a bioprosthetic, if you have family history and good current physical health then 84 is not out of the possibility. Also by ones 70's its possible that you need (for one reason or another) to be on blood thinners (AntiCoagulation Therapy or ACT) anyway.

If that eventuality arises then well managed INR is superior in outcome to any present ACT (Pradaxa or Dabigatran) and has better (more broadly known) reversal protocols should you (heaven forbid) find yourself in an ER due to some accident.

Warfarin needs to be managed, but in the main its often "no change" with dose, unless indicated by the weekly testing. This process is a weekly one, unlike diabetics who need to monitor blood glucose multiple times per day and administer potentially varying doses of insulin to account for the situation.
Managing INR is in contrast quite simple.

The only problem with Full Self Management of INR is if you live in the USA, where the system seems to want to steer your towards an expensive option of being managed(and they do a worse job of managing you unless you're totally mentally incompetent).

In this list of posts about warfarin and my experiences (as well as a collaboration or two).

https://cjeastwd.blogspot.com/search/label/INR
There are in there description os some situations for procedures I've managed myself around since I've been on warfarin, varying from surgery for arthritis to a colonoscopy (quite a bleeding risk that one). All went well.

I'm in the process of finalising a book on INR self management, so when published (hopefully in time for your husband) you may find that valuable. If its been held up for some reason, feel free to tap my shoulder for any help if you'd need it.

Lastly, don't worry about the boogey man of warfarin that you get the feeling of anxiety or doom from many medical professionals. Its mostly a combination of BS and scare tactics (which I hope are to attempt a poorly reasoned position of encouraging you to take your warfarin properly once you've stareted.

Best Wishes

 

[tom in MO]

When it comes to warfarin and BPH, there's no connection good or bad. That's per my urologist and I have BPH. Warfarin did lengthen the recovery for me after a TURP for BPH but that's just the anticoagulant interfering with scabbing. But your husband is not even on medication for BPH yet.

However he should ask his urologist about why he has hematuria. I am on warfarin and if I see blood in my urine, my urologist wants to know and sees me within a day or two. He pretty much wanted to know if I have blood in my urine before I was on warfarin as well. For me the most dramatic cause of hematuria was a bladder stone, but it can be prostatitis especially with an enlarged prostate.. You should be able to get a handle on the hematuria within a week.

 

[BionicBuddy]

Thank you to everyone who responded. Your replies were excellent and much appreciated. I have more questions/comments for each of you. I don't know how to reply with snippets in boxes, so if I can't figure it out, I'll do it the long way with quotation marks.

 

[BionicBuddy]

Hi and welcome back to the forum!

Thanks!

One suggestion that I would have, regardless of valve choice, is to not wait for symptoms. When my aortic stenosis became severe 2 years ago, I was given the choice to get surgery soon or wait for symptoms. I chose to get it done in 3 weeks. There have been studies done showing better long term outcomes if surgery is done before the onset of symtoms.

My husband would not read this forum years ago because he was too scared. Then I showed him your posts, that were so positive and inspirational, and he is starting to read this forum with me now.

Of course there is fear because everything doesn't always work out as planned, but it sure helps to see others thrive, live a fantastic life and continue on.

It's tough as you know, unless you read the stats and studies, to undergo a procedure like this when one is feeling phenomenal and can race up mountains like they did when 35 years younger.

We look forward to reading your continued successes and progress.

PS - Those were some pretty "mean" teammates whipping your back in a congratulatory fashion. You're obviously tough enough to handle it!

 

[BionicBuddy]

If that eventuality arises then well managed INR is superior in outcome to any present ACT (Pradaxa or Dabigatran) and has better (more broadly known) reversal protocols should you (heaven forbid) find yourself in an ER due to some accident.

Good to know. I forgot that other anticoagulants didn't have a quick reversal plan.

The only problem with Full Self Management of INR is if you live in the USA, where the system seems to want to steer your towards an expensive option of being managed(and they do a worse job of managing you unless you're totally mentally incompetent).

I live in Canada. I do not know what is available here. I would probably need to purchase something from the US. If we end up going the Warfarin route, I'm really hoping that I can purchase something that we can manage on our own. I believe you are from Australia? Maybe we can purchase something from Australia?

https://cjeastwd.blogspot.com/search/label/INR

I look forward to reading this. Thanks.

I'm in the process of finalising a book on INR self management, so when published (hopefully in time for your husband) you may find that valuable. If its been held up for some reason, feel free to tap my shoulder for any help if you'd need it.

If we end up going with the mechanical valve and requiring Warfarin, I am absolutely buying your book.

Best Wishes

Thanks!

 

[BionicBuddy]

However he should ask his urologist about why he has hematuria. I am on warfarin and if I see blood in my urine, my urologist wants to know and sees me within a day or two.

Thanks so much for your post. That was really helpful and informative.

My husband has hematuria due to a protrusion of prostatic tissue into the bladder (moderate BPH). I was fortunate to be in the room and observe the screen during the cystoscopy procedure and see the mild inflammatory swelling in the prostatic urethra that was the source of the bleeding.

He no longer sees blood in his urine at present, it's just invisible now and only occasional (mostly after intercourse - sorry too much info I know). The only reason we know there's "invisible" blood in the urine, is because he tests his urine twice per week and it occasionally shows up on the dipstick.

It's so good to know that Warfarin didn't affect your BPH adversely (except a bit longer recovery with the TURP).

I'm just curious. Why didn't you get a HoLEP (Holium Laser prostate surgery) instead of a TURP? I would have thought this minimally invasive procedure would have produced less bleeding?

Also, when you reach out to your urologist if you should have hematuria because he knows you are on Warfarin, what does he do exactly, given that you have already had a TURP and have had your bladder stone removed? Ultrasound? Further cystoscopy? Medication? Of course this depends on the cause, but the reason I ask, is because the root of your causes have been addressed, then what's left?

Thanks so much again for being specific with me.

 

[Chuck C]

PS - Those were some pretty "mean" teammates whipping your back in a congratulatory fashion. You're obviously tough enough to handle it!

I agree, they were mean! lol

I never liked that tradition. If you watch the video, you will notice that some people barely touch you with their belt, while others literally try to take off some flesh. When I'm one of the people in the line, I always just touched my belt to the person, without putting any force behind it. I always felt bad that they were in pain and would never want to add to it. But, now that I have the video, I can see the ones who really tried to put it to me with all their might, and when it comes time for their promotion, I can't promise that I'll be so nice,

 

[pellicle]

I live in Canada. I do not know what is available here.

free INR testing at a clinic (ok if youre retired and can afford the time) and they usually (from what I've heard from my canadian valver friends) test with a Roche Coaguchek.

I use a Roche Coaguchek (as do many of the self testers here on VR)

https://www.valvereplacement.org/threads/freedom-to-roam-or-unusual-inr-testing-locations.877523/
The unit costs about AU$600, but as I've had it since 2012 and done as a minimum 52 tests a year that's worked out so far to $28 per year "rental". Strips are about AU$150 per bottle of 24.

When I was working to deviate from my path to work and not be late to work would cost me something like $30 per event (parking, extra travel but not even factoring in that lost time of working back later to cover being late).

Add in that I've been able to do all the study and learning that I have makes even considering the price of the machine moot.

Oh, if you look at my blog on a phone you may miss some of the links out and some of the embedded video, especially if you (shudder) use an iPhone.

Best Wishes

 

[tom in MO]

Thanks so much for your post. That was really helpful and informative.

My husband has hematuria due to a protrusion of prostatic tissue into the bladder (moderate BPH). I was fortunate to be in the room and observe the screen during the cystoscopy procedure and see the mild inflammatory swelling in the prostatic urethra that was the source of the bleeding.

He no longer sees blood in his urine at present, it's just invisible now and only occasional (mostly after intercourse - sorry too much info I know). The only reason we know there's "invisible" blood in the urine, is because he tests his urine twice per week and it occasionally shows up on the dipstick.

It's so good to know that Warfarin didn't affect your BPH adversely (except a bit longer recovery with the TURP).

I'm just curious. Why didn't you get a HoLEP (Holium Laser prostate surgery) instead of a TURP? I would have thought this minimally invasive procedure would have produced less bleeding?

Also, when you reach out to your urologist if you should have hematuria because he knows you are on Warfarin, what does he do exactly, given that you have already had a TURP and have had your bladder stone removed? Ultrasound? Further cystoscopy? Medication? Of course this depends on the cause, but the reason I ask, is because the root of your causes have been addressed, then what's left?

Thanks so much again for being specific with me.

My BPH most likely caused the bladder stone and various bouts of prostatitis over the years getting more frequent. The TURP was called for because of the amount of tissue he wanted remove (I think).

I have had two bouts of hematuria since the TURP. I told him about it at my 6-m checkup and was chastised for not telling him when it happened. It can also be a sign of prostate cancer. He ordered a variety of tests including a CAT (or possibly MRI). We left it at unspecified cause and stopped testing when prostate cancer and other things were ruled out by imaging and tests.

The only thing he's ever said about warfarin, is that with my INR at 2-2.5, this causes more blood to be present in my urine, which can be thought of as a better indicator that something is wrong upstream.

 

[BionicBuddy]

The only thing he's ever said about warfarin, is that with my INR at 2-2.5, this causes more blood to be present in my urine, which can be thought of as a better indicator that something is wrong upstream.

Again, thanks a bunch!! That was really helpful .

Like you, everything has been ruled out for my hubby with US, CT, blood tests, semen analysis, and cystoscopy.

I just love the positive slant on taking Warfarin that you imply! It's like you have a sensitive indicator on a dashboard to get something checked or treated way before there's some big problem.

I'm assuming when you say you had 2 bouts of hematuria since the TURP, you are actually seeing red or orange in your urine (macroscopic) and not pale yellow urine (microscopic), correct?

 

[tom in MO]

Yes I see orange and red when I get hematuria. Even a tiny clot sometimes.

Warfarin can help in many ways outside of mitigating mechanical valve problems. When researching valves ~12 years ago, for people >65yo with tissue valves ~25% wind up on warfarin for another reason. My mil was on warfarin and had her valve replaced with a tissue valve at ~80yo and kept on the warfarin. She wasn't taking it for the valve. You may never get that stroke that's waiting for you since you're on warfarin.. Supposedly it helps mitigate problems (lung clots I think) from really bad Covid.

 

[Protimenow]

With mild, occasional hematuria, I probably wouldn't expect that anticoagulation would cause much (if any) additional hematuria - but you'll have to check with a urologist for her opinion.

Warfarin increases the time that it takes to clot - but for small bleeds (nicks, small cuts, etc.) the extra time seems to be a non-issue. For example, when I incise my finger for INR testing, the small incision closes quickly (usually). I suspect that a small, microscopic bleed, like that in hematuria that only shows up on a test stick, would probably not take much (or any) longer to stop, or won't flow any more rapidly when you're taking warfarin. But, again, check with a medical specialist.

Self testing and self management is something I do - I've been self-testing since 2009, and actively managing my INR since around 2010 or so. It's easy (and if you have questions, Pellicle can help), and a lot less hassle with clinics that probably know less than you do about self management. My current meter of choice is the CoaguChek. (I've given up on the Coag-Sense, which I once trusted more than it deserved, and consistently reports results below those of the CoaguChek.)