Cath done now what??

[skimomck]

The cath is done. They were basically unable to do the valvoplasty of the pulmonary valve because the stenosis is not in the valve leaflets but the narrowing was from scaring where the homograft was stitched and connected, referred to I think as the conduit. They tried to balloon it with very minimal success. We are also now concerned the manipulation done at the point of stenosis will fuel the scarring process(hopefully not) but when asked that question the answer was "we are concerned about that too" At this point we are a little frustrated because we don't have any idea what the plan is and with just three weeks until Teddy is to leave for college, so time is limited. From what I have just learned on the internet this is the most common problem with the homografts at this stage post-op. They can become calcified which is what they thought had accured but that doesn't happen this quickly. I have had a few phone calls this mornignand there are doctors working on a plan and analyzing the data. Any ideas or thoughts from any of you would be helpful.
Cindy

 

[Bryan B]

Gosh Cindy, I wish I could give you the answers you need. I know when I was discussing this general issue with the homograft with Dr. Jaggers he said without hesitation that if the stenosis became critical he would replace it with a tissue valve. What critical is may be different for me at 43 than Teddy at 19. I'm sure he is much more active than me, therefore he may be affected more by symptoms since he is pushing his body harder. Then there is the thought that postponing surgery as long as possible (without causing damage to the heart) may lower the number of resurgeries you need down the road. It doesn't seem fair to ask Teddy to completely change the way he lives his life in order to prolong the life of his current valve. This is such a difficult situation to be in. I would still recommend giving Dr. Jaggers a call. Even if you don't plan on using him for surgery, he's the type of person who would probably give you his expert opinion "gratis".

 

[surfsparky]

Hi Cindy,
I've just replied to your other post in the "pre-surgery" section. Glad to hear that you have a few doctors working on a plan. It's is a bit dsiconcerting though isn't it, when there is no clear cut answer. At my last surgeon's appointmet he said that if/when I need the pulmonary homograft replaced, they would probably use another homograft and try to blood/tissue match it. After reading some of Bob's (tobogotwo) comments though, about the porcine and bovine having less "rejection" issues, I'll be talking about that with my surgeon. Hoping and praying that you guys have the answer you need soon.
All the best,

 

[tobagotwo]

Pulmonary Valve Replacement choices...

Pulmonary Valve Replacement choices...

Cindy and Chris,

There is little (as I?m sure you know) to be found on the internet directly regarding pulmonary valve replacement. Nearly all of it is related to pediatric cardiology, either for Tetrology of Fallot patients, or childhood Ross procedure recipients.

And some of it clashes with information that we have assimilated over time through research, such as this gem, from a 2001 treatise on pulmonary valve replacement for ToF patients, ?Pulmonary valves at some point require replacement. The authors note that the life span of a bioprosthesis or homograft pulmonary valve on average is from 7 to 15 years. The small series reported of re-replacement of the pulmonary valve did not show mortality to be significantly different from first-time PVR.? ([nb: first time rate was 2.1%] Dr. Carl Backer, original article at: http://www.ctdigest.com/Jul01/rev1/rev1.asp ) and another with a similar story, ?Cassidy did receive a valve from an organ donor to replace the pulmonary valve that is now her aortic valve, and that may need replacement in about 10 to 15 years. However, pulmonary valve surgery is a much easier procedure than aortic valve replacement.? This was from a press piece for the Orange County Children?s Hospital ( http://www.chochospital.org/pressroom/kids_story.cfm?id=12 ).

Seven to fifteen years? We know that homografts generally last far longer than that on average, and most heterografts (xenografts) as well. Or are these numbers skewed by the very tender age of these recipients? At least they do both mention a lower risk potential for the pulmonic valve replacement procedure.

So, what are the real numbers? Who can we trust?

Well, that's the thing, Chris. The homograft valve you have may have been a bad match, and/or it may have been an aortic homograft valve, put in the pulmonary spot (an indicator for failure in pulmonary homograft replacement).

You may be someone who won't tolerate any homograft, or you may just have gotten a highly reactive mismatch. The same goes for Cindy's son. One of the beauties of the Ross procedure is that everything is a perfect, human match. That's probably why your doctor is suggesting a tissue-matched homograft valve for a retry. I wish I could find some statistics for success on that.

So, maybe they do a tissue match and the next homograft goes for thirty years. Or maybe three to five.

Conversely, I have finally found a mention of immunological response to a heterograft in the pulmonary position: http://ats.ctsnetjournals.org/cgi/content/abstract/70/3/717 . This is striking, as there is no complementary literature regarding any immunological response to xenograft replacements in the aortic position, although it is an extremely common procedure, with much study and data. (For clarity: xenograft and heterograft are synonyms, meaning animal tissue valves.)

Sounds not so good at first, but there are reasons why it may not be applicable in current cases. It was a single study, it was done in Germany, and they were using an unspecified tissue product, likely not one in common use in the US.

Several other articles are cited on the page, but most were of so few patients as to be anecdotal, rather than useful in a larger sense. No other articles that I have found elsewhere refer to this phenomenon, including those that specifically discuss prosthetic calcification.

However one more article does cover 100 pediatric patients. It is from the US, employing the Medtronics Freestyle product. Here is a quote from it: ?Actuarial freedom from redo PVR at 8 years was 100% for porcine valves but 70% for homograft valves (p = 0.17). For children younger than 3 years at PVR, freedom from reoperation was 76% at 1 year and 39% at 8 years compared with freedom from redo PVR at 8 years of 100% for children older than 3 years. On latest echocardiogram 97% of porcine valves had mild or no pulmonary regurgitation compared with 72% of homograft valves.? This was from a review of http://ats.ctsnetjournals.org/cgi/content/abstract/73/6/1801 . It continues: ?Conclusions. PVR after RVOT reconstruction can be performed with low risk. Porcine valves may be superior to homograft valves although this advantage may be due to older age at time of PVR.?

And therein seem to lie the differences: the manufacturer (and treatment process) of the valve, and the age of the recipient.

I also emphasize the difficulty of getting usable information, when the pool is largely very young children, mostly toddlers. Age is a critical factor in valve longevity. The difference shows in the results above, varying greatly even between one-year-olds and three-year-olds. As children at that very young age are highly reactive, negative effects on valves are far more pronounced than in older recipients.

Another comparison of homograft vs. heterograft functions can be found in: http://216.239.39.104/search?q=cach.../7602a5.pdf+pulmonary+valve+replacement&hl=en : ?Pulmonary homografts were found to have significantly lower peak velocities (average, 1.8 ± 0.6 m/s) than all heterografts combined (average, 2.4 ± 0.5 m/s; P=.002). Prosthetic regurgitation was more common in pulmonary homografts (88%) than in heterografts combined (29%; P<.001).? Hmm. Ying and Yang...

There are some mechanical replacements done, but they are in the small minority, and it has not been the preferred choice in this lower-flow area. There are also indications that if mechanical, the valve should be of the bileaflet variety to minimize associated clotting and infection risks, even though warfarin anticoagulation must be used as well. Additionally, INR levels may be set higher for mechanicals in this position.

And eventual replacement options may be improving. New things are coming up with percutaneous implantation (implantation of a valve through a catheter during cardiac catheterization). It has some issues in the difficult aortic position, but is already becoming more successful in the lower-pressure pulmonary position. This is important to young pulmonary recipients especially, as it may be how their next valve is delivered when needed 20-30 years from now: http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=15028370&dopt=Abstract and http://www.ctsnet.org/doc/8271 and GOS 01 Annual Review front AW.

There is one ToF experiential summary that seems to indicate performing pulmonary valve replacement may be done in a beating heart environment, which I would have said was not possible. Here is the article, to allow you to interpret that on your own: http://www.thieme.de/thoracic/abstracts2003/daten/v3.html.

Basically, the takeaways I get from this are:
- Once you?ve passed puberty, your options and their performance capabilities expand dramatically;
- Homografts and xenografts are both acceptable (noto bene: don?t have it done in Germany);
- Rejection of homografts may be reduced by the use of tissue-matched homografts;
- Rejection of xenografts in adult patients is not referenced in any articles;
- Rejection of xenografts in children is not noted in the US, specifically in Medtronics porcine (Freestyle) or Edwards bovine (Perimount) tissue valves.

As you may have anticipated, it?s Hobson?s Choice, Chris and Cindy. I might be leaning to the heterograft side, if I had already had a failed homograft, even if the new one is tissue-matched. Maybe the doctor will talk you into it, though, if he has had successful experiences with this type of reimplantation.

Finally, Chris, here?s a link to an article about Australia?s valve collection and tissue maintenance/processing system: http://www.menziesfoundation.org.au/conferences/tissue 1999/it02ireland.html .


Best wishes,

 

[surfsparky]

Thanks mate!

Thanks mate!

Bob,
You are a legend! Thanks so much for all that research and info - it will be my bedtime reading for this week! I've always been in awe of your knowledge when reading your other posts, but now I feel even more awed that you took the time to research this area for Cindy and myself, as it's an area which seems to be unchartered territory, where we are both trying to find some answers in.
I really appreciate it....thanks again,

 

[skimomck]

Wow Bob,
The research you have done here is amazing. I have just started to read through it but the knowledge you have and what you did for Chris and I is beyond words. I had done some searching myself with little success and lack of relevance to our cases, but I think as Chris put it, this area is somewhat unchartered territory. I did find one relevant piece in a Ross Web site put together by Stelzer

The fate of the homograft in the right ventricular outflow tract has been the subject of much interest since the very beginning. A small percentage (1-2%) of pulmonary homografts has developed an early narrowing problem just beyond the valve itself to the extent that replacing it becomes necessary. This may be due to a type of rejection phenomenon. This has led to re-operation in 1-2% of patients in other series. Some others develop just enough narrowing to produce a pressure gradient and murmur. This pressure gradient is well tolerated up to about 50 mm Hg and can be assessed by echocardiogram, which can be used to follow the status of this situation fairly accurately. Because so few patients develop this problem, it is not reasonable to prescribe anti-rejection medication to everyone (Dr. Stelzer has not needed to replace the homograft in any of his patients.).

I am also interested in learning more abut the percutaneous implantation of the pulmomary valve.

I have lots of reading to do thanks to you Bob and I can't thank you enough for all your work.
Cindy

 

[Mary]

Cindy,
Have you considered the possibility of contacting another surgeon? Bryan mentions his surgeon in North Carolina, and I'm thinking of Dr. Stelzer in New York.
Bryan indicates that Dr. Jaggers is very approachable, and I know Dr. Stelzer is.
Mary

 

[tobagotwo]

Researching Considerations

Researching Considerations

I really wish there were more clear-cut adult studies. There are Ross Procedure sites, but the ones I've run across don't seem to provide much access to independent research, and are very big on promotion, which makes me a bit uncomfortable. I strongly agree with the Ross Procedure concept, but like to approach things with both eyes open, rather than from a supporter viewpoint that might color my perceptions. Things change rapidly in this field, and some new technology may overtake all of the current options at any time. I would want to remain open to that possibility.

For anyone researching, some caveats and considerations:

• Try to "weight" studies, based on their relevance, size, and appearance of accuracy.
• Look to see how many patients are in the study. Too few means you must treat the information as anecdotal. It doesn't mean the results are flawed, but it means you may want to consider them as "less compelling," when compared to other, larger studies.
• If the author is strongly espousing an outcome, look more closely at the study results, as they sometimes may reflect what the author wants them to, rather than what is really shown by the data. Some real indicators are when the conclusion appears to be a leap from the data, when parts of results are not listed or seem to be glossed over, or when the word "significant" is used in place of actual numbers or percentages.
• Look for "apples vs apples" in studies. Common approaches, nomenclature, age groups, and methodologies all help you compare studies, or weight their results more appropriately.
• Don't jump at the "right" study. Be very careful of an internal desire to overemphasize a study because it stikes a chord with you for some reason. If you're excited about a result, be all the more careful to validate it independently.
• Age is an immensely important variable in valve studies. Pediatric subjects have extremely pronounced immunological and histological reactions to things that adult bodies do not even seem to notice at all. The appearance is that there is a drop-down of reactivity at about age two, and again after puberty. There is another break point at about age 45, where reactivity drops even further.
• Unconsidered age groups can unintentionally unbalance a study. As an example, the mean age of tissue recipients is older than that of mechanical recipients, so a raw comparison of successes or complications is not an apples-to-apples comparison. If the groups have equivalent results, then the appropriate conclusion might well be that the tissue results are actually superior, when adjusted for age.
• Be on the lookout for incorrect or invalid assumptions, such as "tissue valves are known to last only 6-8 years" or "reoperations are to be avoided as they have an increased risk". Urban Valve Legends can poison a study, if they affect how it's carried out or its conclusions.
• The age of the study itself is important, as we're always looking at historical data. In the fast-changing technology of valve replacement, sometimes even a large, well-run study can be rendered merely anecdotal by the introduction of newer products or techniques (e.g. the newer, amended Ross Procedure technique is only about a decade old, but makes recent Ross operations successful far more often than previous ones).
• Look through as many studies as you can bear to. If you approach them as open-mindedly as you can, you will begin to get a "gut feel" for what the results normally are (an expectation, not a prejudice). Then you can adjudge the validity of variant studies, by focusing on what makes them different. They may be aberrent throwaways, or they may actually wind up being more relevant to your case than the more prevalent studies, depending on what makes them different.
• Does it make sense? You read these forums all the time. These are real people, relating real experiences (albeit not always in a highly scientific manner). If what you're seeing in a study doesn't jive with what you have seen consistently in the forums, try to determine if there is a logical reason why the perception would be different. If you can find no way to reconcile the two, you need to dig deeper, post for more opinions, or make a judgement call.

This is, of course, just my own approach. I apologize if the post sounds didactic. I am trying to learn all I reasonably can about valve replacement issues, and also trying to learn how to learn in the process.

Best wishes,

 

[Gemma]

You know, I've just remembered something - Jim's 23-year-old cousin had something done to her pulmonary valve when she was 4. I'm pretty sure it was replaced but have only met her once at a family party so didn't have time to grill her on it (also it would have seemed a little odd at our first meeting ). I'll see if I can find out if she did have a replacement, and if so - what type of valve it is. Not sure it would necessarily be of any help to Teddy but may be interesting to know what valve she has that has been going strong for 19 years and counting.

 

[Shine_on_Syd]

Yes Cindy, you may want to consider talking to Dr. Stezler directly about his opinion. He was a partner of Elkins in Olkahoma City.

 

[tobagotwo]

Cindy and Chris: you will notice some minor format changes to my earlier post. They are for readability only, and do not change the meaning or content of anything that was originally written.

I do that sometimes with my posts, because I spot awkward phrases or typos when I reread them. If I feel I need to change the content or message, I usually post about it, or place the "why" information right in the post itself.

Best wishes,

 

[skimomck]

Bob,
Thanks for educating us re:research considerations, all of it very helpful. I was aware that the stat I quoted was part of a Ross informational and promotional site but its only relevence was not the percentage of occurance but the type of pulmonary stenosis which is generally proximal to the valve leaflets and that it is seen in the pulmonary homograft and its probable link to some type of rejection phenomenon and is also somewhat rare. As you stated, things change rapidly in this field which for Chris and Teddy hopefully will be a very good thing. Thanks again Bob you are amazing.
Cindy

 

[tobagotwo]

Cindy, Just so you know: I wasn't taking a shot at your quote. I was just thinking about the general pitfalls of trying to research things, especially something as difficult as this topic, with so much semiusable information. Your quote post actually showed up while I was off writing that piece on researching, so I wasn't even aware of it when I posted.

This just seemed like a generic thing that might use some clarification. I thought of doing it while I was in this thread, so that's where it wound up. It is so easy to get a false impression from the kaleidescope of assorted data that gets presented. I wondered if it really wasn't enough to just tell people to take the things they find with a grain of salt. Sometimes, it's good to depict what salt might look like. Or something like that - I think that metaphor got away from me somewhere along the way...

Anyway, it was just a list of pitfalls I've fallen into or watched others wallow in, and I thought it might be useful. I put a more formal version in the Reference Sources forum this afternoon. I hope it helps someone out.

Best wishes,

 

[skimomck]

Bob,
I didn't think of it that way and I am still reading through the research you found and educating myself. There isn't much data out there as you discovered but you certainly did a great job finding what you did and it is appreciated.
We hope to hear some feedback and plan today re:Teddy. The cath results were faxed to several surgeons on Friday who plan on communicating with us today.The questions remains, what do we do to prevent this in the future when time comes for re-op. Thanks Bob.
Cindy