39/M: Takayasu's Arteritis : Severe AR with CHD : AVR in a week's time!

[Nipun Shah]

Hello folks. This is my first post here, and I'm disappointed at myself for not having bumped into this community a few weeks earlier. I'm so impressed with the depth and width of first-hand valve-replacement experience-sharing here! So, thank you all!

Anyway, I've been asked to undergo Aortic Valve Replacement surgery within this month. I have met 5 surgeons over last 3 weeks and have consulted with 2 remotely, in the process of trying to figure out my options. The complexity of the matter is further enhanced by my specific condition.

I am 39.5 years old at present, male patient, from India, with good support system available in Mumbai and Delhi.

Here is my medical history, in brief, to set the perspective:

1) 2008: Exertional angina. Triple Vessel Disease detected at 32 years of age
2) Nov 2008: CABG (using LIMA RIMA Y Graft)
3) Feb 2009: Exertional angina again. Stenosis developed in LIMA leading to PTC-Angioplasty with stenting. Mild AR detected in Echo
4) April 2009: Developed claudication trouble in both legs, and CT Angio revealed blockages in right and left Common & External Iliac arteries
5) Dec 2009: Diagnosed with Takayasu's Arteritis (TAK). CHD & Iliac blockages attributed to Takayasu's Arteritis
6) May 2014: Underwent multiple peripheral angioplasties in the Iliac Arteries, 2 stents in right and 1 in left
7) June 2014: Developed exertional angina again. LIMA Stent found to be re-stenosed (in-stent restenosis). Repeat PTC-Angioplasty done with new stent placed inside the old stent. Moderate AR detected. LVEF = 56%
8) Early Dec 2015: Fresh symptoms of Exertional angina, dizziness, shortness of breath. AR progressed to severe! LVEF reduced to 45%!
9) 11th Jan 2016: Yesterday! Underwent another coronary angiogram! The angina and other symptoms are being attributed to dual causes: Severe Aortic Regurgitation (AR) and new stenotic activity in the coronaries.

Thus here I am! One thing is certain, I am going to be opened up within this week or the next for an AVR surgery. Surgeon is still reviewing the angiography results to decide if a re-do CABG needs to be done alongwith the AVR.


Current Medications:
For CHD: Atorvastatin, Aspirin, Prasugrel, Ramipril, Metoprolol
For TAK: Prednisolone, Tocilizumab, Methotrexate
Supplements: Calcium, Vit D, Folic Acid, Pantoprazole

With this breathtaking (pun intended) story, below are my questions for this august forum:

1) With active Takayasu's Arteritis, ongoing immunosuppression medication and simultaneous coronary artery issues, what type of valve should be considered for me???
2) Can active Takayasu's Arteritis cause faster degeneration of a Bioprosthetic Tissue Valve?
3) If I go with a Tissue valve, and if it need a replacement later on: Can Valve in Valve / TAVI be considered, especially since I have stenosis in the Iliac Arteries?
4) Since this is already going to be my 2nd open heart, a third one is something that I don't ant to even think about....
5) If I go for a Mechanical (metal) valve, will there be serious trouble handling the anticoagulation therapy, simultaneously with prednisolone and other immunosuppressants?
6) If mechanical: what brand valve?
7) If tissue: what brand valve?

Thanks for your attention, and looking forward to an engaging discussion!

EDIT!!!! : I forgot to add earlier that, my echocardiograms over the years have shown a "suspect bicuspid" aortic valve. The reason it is "suspect" is, that the third cusp shows up as "very small" in the echo. That is, two of the cusps are of good normal size, but the third one is inherently small, and hence problematic. It is not too sure whether the AR started because of this "3rd cusp is small" issue, or because of Takayasu's Arteritis. It is also not clear whether the AR progressed due to TAK or was it self-progressive.

 

[dick0236]

Hello folks. This is my first post here, and I'm disappointed at myself for not having bumped into this community a few weeks earlier. I'm so impressed with the depth and width of first-hand valve-replacement experience-sharing here! So, thank you all!

4) Since this is already going to be my 2nd open heart, a third one is something that I don't ant to even think about....
5) If I go for a Mechanical (metal) valve, will there be serious trouble handling the anticoagulation therapy, simultaneously with prednisolone and other immunosuppressants?
6) If mechanical: what brand valve?

Welcome....Spend some time looking thru the older posts on this forum. Most every subject has been discussed in detail and should be a great help in making an informed decision regarding "living with a valve".

4) I would not like to go thru this surgery anymore than I had too.
5) ACT(anti-coagulation therapy) is normally not difficult but does require an easy to follow, but required, protocol......"take warfarin as prescribed and test routinely". I have no idea about possible interaction with your other drugs.
6) Several brands are available including St. Jude, Onyx, ATS to name a few.

 

[dornole]

Wow. I think you might be one of a kind, medically speaking. You might be lucky if a DOCTOR can answer all those very excellent questions to find the right path.

I have been told that my rheumatic fever history suggests that I would get very little life out of a tissue valve and my doc recommends mechanical when it's my time for that reason. I am guessing that any kind of chronic inflammation process is a bad thing but I do not know. Being as young as you are also increases chance of short valve life and more than one additional re-op if you go with tissue. Your questions about managing coumadin with your other meds are also critical though to see if mechanical is a viable option given your other health conditions. Hopefully it is, because mechanical will give you that best chance of avoiding re-op, which seems like a key outcome you want.

TAVI right now is reserved for patients who can't survive OHS (usually elderly), because it is more risky than OHS still for most people. Your question about the vessel stenosis is an excellent one, I think it would further diminish the likelihood that you could go that route in the future.

You can use the forum search bar to see if anyone in the past had Takayasu's Arteritis.

You seem very on top of things so I hope you'll get the info you need to decide wisely.

 

[pellicle]

Hi

welcome aboard

Anyway, I've been asked to undergo Aortic Valve Replacement surgery within this month. I have met 5 surgeons over last 3 weeks and have consulted with 2 remotely, in the process of trying to figure out my options. The complexity of the matter is further enhanced by my specific condition.

Here is my medical history, in brief, to set the perspective:

wow ... lots of data there, but you should keep in mind that while many of us here are quite technical in specific aspects we are not surgeons or cardiologists ... so I'll take those issues on board and sidestep to the questions

1) With active Takayasu's Arteritis, ongoing immunosuppression medication and simultaneous coronary artery issues, what type of valve should be considered for me???

the biggest question I have is "what role will those medications play in managing AC therapy? I expect it may be tricky, but you should search on each of your drugs and see what warfarin interactions there are. The key point to look for is anything which also is removed from the body using the P450 Cytochrome pathway.

2) Can active Takayasu's Arteritis cause faster degeneration of a Bioprosthetic Tissue Valve?

that part is unknown to me as I'd never heard of Takayasu's before .. if this page on wikipedia is at all useful to me (in my understanding of it) https://en.wikipedia.org/wiki/Takayasu's_arteritis

then I'd suppose its more of a morphology description than a thing which would effect the valve ... or AC therapy for that matter

3) If I go with a Tissue valve, and if it need a replacement later on: Can Valve in Valve / TAVI be considered, especially since I have stenosis in the Iliac Arteries?

probably, but only if you are so unhealthy and such a "high risk" patient that you would have a greater risk of death from conventional surgery.

4) Since this is already going to be my 2nd open heart, a third one is something that I don't ant to even think about....

I know how you feel, but I've had 3 and I know myself I'd rather not have a 4th ... the risks accumulate rapidly. 2nd OHS is harder to manage (but they are learning) and 3rd harder again ... 4th even harder again

5) If I go for a Mechanical (metal) valve, will there be serious trouble handling the anticoagulation therapy, simultaneously with prednisolone and other immunosuppressants?

first point ... no one has made metal valves for some time ... the modern ones for at least 10 years have been the pyrolytic carbon. There are some metal components in the frames of the tissue prostheses IIRC

trouble with AC therapy is possible, you'll need to research (or mention here) the specific medications for immuno suppression you're on.

6) If mechanical: what brand valve?

To me there is little difference between St Jude (longer history) , On-x (a new boy but showing well over time, has some interesting features which are as yet too early to call as to their effectiveness) and ATS / Medtronics which is a bit like the other two (longer service history) but with a different set of subtle "selling" features.

Feel free to hit back with other information / questions

Best Wishes

 

[Nipun Shah]

Thank you for the responses, and sorry for not logging on here in last 2 days, as was busy at, you know where, the hospital.

So, the update is: I got discharged from the hospital yesterday. The surgeon has "chickened out". Ok, I'm kidding! The real thing is, the surgeon has asked me to wait and watch for a few months before plunging into a surgery.

The surgeon's reasons are:
1) The repeat Echo at the hospital has revealed that even though my AR is severe and even though I have symptoms, the heart function seems not too deteriorated. LVEF this time was measured as 55%. And LV dimension as 5.6cm. He thinks we might still have some time in hand before the surgery becomes a must!
2) It might be too risky at this stage to undergo an AVR surgery because it might make me vulnerable to endocarditis due to my immune-system being suppressed by all those immunosuppressants. He asked me to work with the rheumatologist to get the Takayasu's activity down and get the medications lowered.

So, I returned from the hospital like a damp squib! Sounds like a spoil-sport, doesn't it?

I will still continue to participate and read here from the Waiting Room, because sooner or later the ghost of AVR is going to haunt me again.

So, moving on the the above very kind responses.

@dick0236:
Thank you. Yes I agree I need to spend more time reading through the discussions here.

@dornole:
Thanks! Yes I indeed am one of a kind, the kind from whom the doctors run away! Your views about mechanical v/s tissue, TAVI's applicability etc. match with my recent discussions with various doctors. If and when in the next few months when I do undergo AVR, the choice is gonna be a mechanical valve!

@pellicle:
Thanks for the warm welcome and the thorough response.
* Yes, I recognize that most here are not doctors, but I surely do value the info here due to so many first-hand experiences.
* I will research further on the P450 Cytochrome pathway matter. Wonderful tip!
* Wow youv'e had 3 OHS already! That's a brave warrior! Since this will be my 2nd OHS, I have chosen a surgeon who is known to perform re-do OHS' with very high success rate. Hoping that he will take care of all the complexities. Of course, first, according to him, we need to arrive at the right time for the surgery, which is not now.
* Thanks for clarifying that mechanicals are made of pyrolytic carbon, not metal! And also about St.Jude v/s On-x v/s ATS.
* I had mentioned the medications that I am on in my first post above. I will research further about trouble with ACT...

 

[dick0236]

Coumadin is the brand name and Warfarin is the generic name. Dupont Chemicals patented the drug many years ago under the name Coumadin. When the patent expired several drug companies began marketing the drug as Warfarin. The active ingredients of the two drugs are identical but there may be some small difference in the inactive ingredients such as dye. Some here can give you a more precise definition but the gist is.......they are the same except that Warfarin is much cheaper than Coumadin.....at least it is in the USA. I've used both and find no difference.

 

[pellicle]

Hi

@pellicle:
* I will research further on the P450 Cytochrome pathway matter. Wonderful tip!

you don't really need to know too much detail about it, its just one of the "liver" pathways for removal of toxins (your body regards anything not food as a toxin)

This is probably enough as an overview
https://en.wikipedia.org/wiki/Cytoch...450s_in_humans

some other handy reading:
http://www.aafp.org/afp/2007/0801/p391.html

Cytochrome P450 enzymes are essential for the metabolism of many medications. Although this class has more than 50 enzymes, six of them metabolize 90 percent of drugs, ... Cytochrome P450 enzymes can be inhibited or induced by drugs, resulting in clinically significant drug-drug interactions that can cause unanticipated adverse reactions or therapeutic failures. Interactions with warfarin, antidepressants, antiepileptic drugs, and statins often involve the cytochrome P450 enzymes.

if you get super interested (and have the right background):
http://www.ncbi.nlm.nih.gov/pubmed/9014207

[h=3]Abstract[/h] The anticoagulant drug warfarin occurs as a pair of enantiomers that are differentially metabolized by human cytochromes P450 (CYP). R-warfarin is metabolized primarily by CYP1A2 to 6- and 8-hydroxywarfarin, by CYP3A4 to 10-hydroxywarfarin, and by carbonyl reductases to diastereoisomeric alcohols. S-warfarin is metabolized primarily by CYP2C9 to 7-hydroxywarfarin. Potential warfarin-drug interactions could occur with any of a very wide range of drugs that are metabolized by these P450s, and a number of such interactions have been reported. The efficacy of warfarin is affected primarily when metabolism of S-warfarin is altered.

* Wow youv'e had 3 OHS already! That's a brave warrior! Since this will be my 2nd OHS, I have chosen a surgeon who is known to perform re-do OHS' with very high success rate. Hoping that he will take care of all the complexities. Of course, first, according to him, we need to arrive at the right time for the surgery, which is not now.

I'm cautious to receive any praise, like the alternative to having surgery would mean I would not be here typing this. Anyway its good to hear you're in good hands

* I had mentioned the medications that I am on in my first post above. I will research further about trouble with ACT...

Knowledge is more than power, its confidence and peace of mind

Best Wishes

 

[rakesh1167]

Hi Nipun,
Which surgeon have you chosen for redo? Is he Dr Panda?
I am going for AVR with 3.8 aortic root. I know that i will be a candidate for redo soon due to aorta size.

 

[Nipun Shah]

@ pellicle : I hear you...

@ rakesh1167 : Hi Rakesh, Yes Dr. Ramakant Panda it is! 3.8 aortic root is big! What's the history? What type of valve are you going with and when is the surgery planned? Where in India are you from?

 

[rakesh1167]

Nipun Shah I have BAV. Aorta increased between 2007(had an echo in 07) and 2013 when i had high BP, used to do workout (squats, deadlift etc). In 2013 BAV was caught and i changed my lifestyle after that. It has been stable since then. Doctor says that it could grow within 5 years or it may never grow, just wait and watch. But seriously i wish it was > 4.5 already, it would have been taken care of along with the valve.
I am going with mechanical ON-X , cardiologist is against tissue at my age(32). Although surgery was planned for 19th Jan but had to delay it due stomach ulcers. Need to sort out that first. Never in my life had ulcers, all the bad things are happening at once ... Although i am from Haryana but working in Bangalore currently. I am going for surgery in Medanta, my surgeon would be Dr Anil Bhan.

 

[Nipun Shah]

rakesh1167 All the best with your healing of stomach ulcer and subsequent surgery, and I can understand how frustrating it can be to constantly find some or other hindrance in way of good health.

Dr. Anil Bhan is known to be one of the best valve surgeons in North India and Medanta has great setup. I had consulted with him too and had a hard time trying to decide between Bhan/Medanta and Panda/AsianHeart. Again for my case, these two differ in opinion. Panda wants to delay the surgery, Bhan says it should be done now.

Rakesh, would it be feasible to get in touch on phone? I messaged you my number.

 

[Nipun Shah]

rakesh1167 All the best with your healing of stomach ulcer and subsequent surgery, and I can understand how frustrating it can be to constantly find some or other hindrance in way of good health.

Dr. Anil Bhan is known to be one of the best valve surgeons in North India and Medanta has great setup. I had consulted with him too and had a hard time trying to decide between Bhan/Medanta and Panda/AsianHeart. Again for my case, these two differ in opinion. Panda wants to delay the surgery, Bhan says it should be done now.

Rakesh, would it be feasible to get in touch on phone? I messaged you my number.