Status Report with Questions

[billr]

Hi all--

I had AVS at East Carolina Heart Institute (Dr. Chitwood) on September 18 this year.

I was admitted on an emergency basis to Aiken (SC) Regional Hospital on September 29th for a deep sternal infection. I had two debridement surgeries, sternal wires removed during second surgery, and a third surgery with CT and plastic surgeons to install 3 titanium plates/screws to stabilize sternun and permanently close. I was discharged from the hospital on Oct 17and received home IV (Cubicin) for thirty days.

I feel GREAT! I'm walking 3 miles a day at good pace, even up and down hills with no cardiac discomfort. I really can't say that I've had a particularly tough time of recovery/rehab although I think that maintaining a very positive outlook has more than a little to do with it.

HOWEVER--

The night before the first debridement my cardiologist took my wife aside and told her that he heard significant regurgitation in my mitral/pulmonary valve. He also told her that there was no reason to alarm me right before surgery as it would not serve any purpose so I was not told. The CT surgeon obviously concurred with this decision. Truthfully, I do not know how I feel about this withholding of information. As I was recovering from this first debridement surgery, I was told "the murmur is very pronounced."

During the second debridement, they did a T.E.E with my prior knowledge. My cardiologist said of the results, "it looks a lot better than it sounds".

During a follow-up after discharge I asked both my cardiologist and the local CT what could cause this regurgitation which WASN'T present before the AVS. They both said (independently) that they didn't know. My cardiologist also deflected my questions about how severe the leakage was according to the T.E.E.

I have a follow-up with my cardiologist on Monday.

Here are my questions---

- Has anybody ever had or heard of regirgitation of both the pulmonary and mitral valve being caused as a DIRECT result of AVS? If so, what causes this? Is this likely temporary as my bovine aortic valve adjusts or whatever?

- I like my cardiolist a great deal. I'm going to pressue him to tell me quantitatively what the situation is. I am a little concerned that he may (again) be with holding information so that I can fully focus on my AVS recovery before facing surgery again. (As for me, I'd rather know today. If I need another surgery so be it, just tell me so I can get physically and psychologically prepared.) Any questions you can think to ask him other than for the obvious cardiac metrics of my mital and pulmonary valves?

Thanks in advance and best regards to all==

Bill

 

[Nancy]

Sounds like it's time for a second opinion and not from the group of doctors who might be "friends". Find someone else who can offer you a good second opinion. It can't hurt, and you may trust what they say more. I would suggest finding the most excellent heart facility near you, even if you have to travel some.

 

[Cris N]

Before anything goes further with your concern you should get a FULL set of copies of all your medical records. And, be very careful what you post on a public forum if you think there might be any further action.

 

[tobagotwo]

Interestingly, I developed sudden mild regurgitation in my mitral and pulmonary valves, although mine happened before the aortic valve surgery, and seems to be tied to overprescription of two blood pressure drugs.

I wouldn't put up with being left in the dark about my personal health information. I fired one cardiologist for that very reason. The Health Information Portability and Accountability Act (HIPAA) has been in place for many years now, and doctors are required to give you copies of all of your tests and medical records. As such, it just makes sense for them to be straight with you in person, as you can find out about it later anyway.

If you are going to stay with this cardiologist, it seems to me that you need to make it known to him that under no circumstances is he to withold information like that from you again. And you should make an agreement with your wife that she should set him straight if he tries to do it again.

Best wishes,

 

[Philip B]

Pressure?

Pressure?

The only pressure you should have to put on you doctor is to ask him what's going on. Obviously, there are probably differing opinions, but I would queston the ethics of a doctor who intentionally withholds information. I could be wrong...aren't there laws that require medical professionals to provide full disclosure to patients.

I do agree with the comments concerning being careful about what you post. Should you discover that mistakes were made and appropriate information wasn't provided, posting this kind of stuff could complicate things should you ever pursue legal action.

-Philip

 

[billr]

Hi all—

I think my original post led to some misunderstandings which were not germane to my questions but should be corrected regardless.

1. My cardiologist did not tell me, but told my wife, of the significant murmur he heard but had not measured, the night before my first debridement. He did this because:
a. I was facing unrelated critical, life saving surgery within the next 15 hours
b. The valve issues were not on the surgical critical path, they were of secondary concern to the sternal infection. Also, nothing could or should have been done about them prior to the absolutely required debridement surgery.
c. I had been previously told that the infection was life threatening and the surgery complex. He obviously believed that telling me might have affected my psychological outlook (“what, I have to have another valve surgery!”) immediately prior to this surgery. Admittedly, if I had known, I may have thrown in the towel.
2. Given these circumstances, I think he made the right decision despite my normal obsessive drive to be told, and understand, everything. When does an obsession to know, particularly relating to timing of the disclosure, become detrimental?
3. I think in hindsight, he made the right decision in this situation. I also believe most other doctors would have made the same decision. Reasonable people might disagree with this assessment but for me, firing the cardiologist who saved my life or firing my wife who IS my life would be a strong over reaction.
4. However, once a doctor makes this type of decision ONCE, no matter how justified, it can put the doctor on a slippery slope with the patient.
5. This is not the main point of the original post even if the underlying ethical and intellectual issues are quite interesting to explore/debate.

I have an appointment with my cardiologist on Monday. I will ask for, and he will freely provide all p/m valve test results. But these will not answer the questions why or how.

I was not neither implying nor do I believe that my AVR surgeon did anything to create the mitral and pulmonary valve leakage. In fact, another valve surgeon and cardiologist NOT responsible for my care, and my local CT surgeon who performs valve repairs though bypasses are his main thing all have told me that it is virtually impossible for ANY AVR surgeon to cause leakage problems in BOTH the pulmonary and mitral valves. My AVR surgeon is internationally respected. For the sake of this post, please rule out any causal relationship between my AVR surgeon and m/p valve leakage.

Thank you for the well intentioned but unnecessary legal advice on HIPAA and other matters. For personal reasons, it brought a wry smile to my face.

The infection was NOT the cause of the valve problem … this strain of evil-doers do not affect the valves.

I am puzzled, but more importantly, my CT and cardiologist are puzzled what caused my perfectly functioning mitral and pulmonary valves on September 10th (and for 60 years prior) to exhibit considerable regurgitation on September 29th.

There are some very smart people on this forum with a GREAT deal of collective knowledge, at times painfully learned, which may be the equal or even surpass the patient experiences of a cardiologist particularly in regards to rarely encountered occurrences/conditions.

With this as a preface, here are my questions, narrowed down from the original post:

1. Is it likely/possible that dramatically improving the aortic valve function could trigger the creation of m/p valve regurgitation OR the surfacing of a latent problem with the m/p valves??
2. Is it likely/possible that the procedure itself, e.g., being on a heart lung machine trigger the onset of m/p valve regurgitation OR the surfacing of latent issues with the m/p valves??
3. Is it likely that the successful AVR and the inherent stress/trauma on the heart could disrupt the functioning of the heart as an ENTIRE organ/system and that m/p regurgitation may be a transient phenomenon??

My medications are the same with a few exceptions. I was taken off Norvasc on discharge from my AVR, and a diuretic, potassium and iron supplements were added. I am today still on the same 100 mg a day dose of Atenolol that I’ve been on for years.

My blood pressure since AVR has been very consistent: 120s to low 130s over low 60s to low 70s. HR is in the 60s.

Any ideas???

Best regards and Happy Thanksgiving to all—
Bill

 

[Ross]

I don't know that I'd be worried. Your only two months out and your heart has a whole lot of healing to do at this point. Couple that with the infection and subsequent surgery, I'm not surprised at these findings. Now if 6 months down the road, things haven't improved, then I might be getting a little concerned. At this point in time, it's really too soon to say what, if anything is causing it. Most of the time, this phenomena goes away on it's on.

 

[Lily]

This may not be germane to questions either. . .

This may not be germane to questions either. . .

.
I really enjoyed your outline format, Bill. I don't know the answers to your questions. And there may be nothing new here. So you may need to disregard my effort at a reply.

I'm not one of the "brains" on this site and I'm trying to fire up a few grey cells to brainstorm here but could that serious life-threatening sternum infection have somehow spread enough and entered and possibly infected and/or scarred your heart, your valves? Oh, I reread your post more closely and see that you specifically addressed that as not being possible?

My other thought was in regard to a med contributing to the issue somehow, which has already been alluded to. It's amazing, the side-effecting injuries some relatively simple medications can cause or contribute to. I don't know the specific cause, possibly a med, but something related to my valve replacement caused my bp to excessively drop and my kidneys didn't want to work for a few days post-op.

Anyway, I hope your issues will resolve. Best wishes .

 

[Lynlw]

I don't know that I'd be worried. Your only two months out and your heart has a whole lot of healing to do at this point. Couple that with the infection and subsequent surgery, I'm not surprised at these findings. Now if 6 months down the road, things haven't improved, then I might be getting a little concerned. At this point in time, it's really too soon to say what, if anything is causing it. Most of the time, this phenomena goes away on it's on.

I tend to agree with Ross. You heart has been thru alot, and many things may change in the next couple months as your heart heals and remodels itself, both from the surgery and living life with brand new valve instead of the older valve. I know it is impossible NOT to worry, but hopefully in a couple weeks/months everything in your heart will function much better. (i'll add THAT to my huge "specific prayer" list )

FWIW I can't imagine anything surgery related including the bypass machine, causing problems to both the pulm valve and the mitral

I am so happy to read even tho you went thru alot in such a short time, over all you are doing so well and able to do so much walking ect with out a problem.

 

[Smiley2000]

Bill, sorry that I only reply on your thread now (hope you are doing a lot better these days) but I want to give you my 2cents worth:

1. The findings of a T.E.E. is very accurate. Don't worry to much about what they have heard on a stetoscope. My advice to you is to go for a follow-up T.E.E. around August 2010. Then your post-op probs should have cleared.

2. If you become SOB or notice swelling around your ancles/tummy then you should be allarmed and go to your Cardio sooner, but again insist on a T.E.E. and get an accurate look at those mitral and pulmonary valves.

I can remember that my Cardio told me, a few months post-op that I had leak in Aortic valve, but now, almost 2 years down the line, al 4 my valves are looking great!