Quantcast

St Judes Valve Repair or Replace

Help Support ValveReplacement.org:

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
A fluoroscopy today was successful after multiple echos, a TEE, and previous fluoroscopy which did not clearly indicate a problem. Today, it did. The hinge of my valve is not working and my heart function has gotten worse in the past two months. The pressure gradients were not good and now worse. The options discussed today was a slow IV of TPA. (Tissue Plasminogen Activator) This has risks of a brain bleed. It was done at my hospital last month and was successful. They know this after three days even though it requires a 2-3 week hospitalization. This is done to dissolve blood clots on the valve. In my case, it is believed to be scar tissue and I wonder if its from osteoporosis injections I took for 15 months and rebuilt bone. Maybe it targeted my valve. I am checking with the FDA on this one. They are not sure if the TPA would work on scar tissue or whatever it is. Do risks make this worthwhile?

The other option is a new valve which at age 71 has many inherent risks also. What to do? I am waiting for the surgeon and cardio to consult. I am wondering if I had to go the route of a new valve, could it be a tissue valve after a mechanical one. Also, concerning me is can this happen again? I have also had hemolysis for years after this valve was installed 12 years ago.

Symptoms are increasing and can barely breath to do routine things. I think I have some A fib also.

Any information, ideas or similar experiences would be much welcomed.I hate to go on the "Pre Surgery Site" although that may be where I belong. It has amazed me to see how many VRC members have had more than one op. They all seem to be much younger than I am going for a reop. Thank you for anything you can suggest.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
Firstly I'm sorry that the challenges are this difficult and that there are no straight answers. I was pleased to hear that the TPA has sort of gone somewhere but at the same time hasn't

What you ask are all difficult questions. I know I can't provide much on the issue of " In my case, it is believed to be scar tissue ... They are not sure if the TPA would work on scar tissue or whatever it is. Do risks make this worthwhile?"

however on the question of: " I am wondering if I had to go the route of a new valve, could it be a tissue valve after a mechanical one"

I would wonder if there is any real difference for you and your metabolism at this point. To me it would be flip a coin with the fact that you mention you have some aFib so you may need to continue warfarin therapy anyway ...

How many valve ops have you had in total?
 

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
Thanks pellicle. I know you initially found the TPA option and posted it. Little did I know..... how pertinent it would be. I have had just one surgery for a St Judes mechanical valve. I am in awe of those who have had multiple valve replacements. Its shows much of the human spirit how one can handle so much trauma.I have not adjusted to the thoughts of another reop, especially when you know what it was like. I have been told there has been a vast improvement in these surgeries in the past three years? The alternative of doing nothing is not appealing either. Thanks again.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
Hi

djacq;n850020 said:
I have had just one surgery for a St Judes mechanical valve.
well that's encouraging. I would say that puts you in good stead for resurgery. Its when you've had 3 by that age (like I've had 3 already) that a reop will be a challenge for the surgeon (all that scar tissue to mask things you don't want to cut and all that leftover stuff in there from the last operation to harbour infections ... and yes they leave things in there)

I am in awe of those who have had multiple valve replacements. Its shows much of the human spirit how one can handle so much trauma.
to be honest I don't think the whole thing is as big as people blow it out to be (the trauma stuff). I see this reflected in the anxiety of 'first timers' who after their first suddenly seem to be ready to front up to multiples ... to me the hard thing is the bits that are hard on your body (which you perhaps don't feel).


The alternative of doing nothing is not appealing either.
exactly

best wishes for a good outcome :)
 

epstns

Premium User
VR.org Supporter
Joined
Dec 26, 2002
Messages
5,155
Location
Chicago area
Hi, djacq,

Sorry to hear that things are "going south" for you.

Like most here, I cannot help with any info regarding potential medical treatment for your valve.

I can, however, relate some anecdotal information regarding the potential re-operation. All I have been told by my surgeon and others I interviewed indicates that the docs believe a "first" re-operation carries only slightly elevated mortality risks when compared to the initial implant procedure. Yes, it is a greater potential, but statistically not so great as to speak against a re-op. When I had my tissue valve implanted at age 63, we discussed the potential for re-replacement at a "more advanced" age, and both surgeons I met seemed perfectly confident in the profession's ability to safely operate on elderly patients, even into their 80's. True, recovery would possibly be slower and take place over an extended period, but as you've already noted, the outlook if you do nothing is even worse.

As for valve choice, the docs will need to advise, but if there are no physical reasons to the contrary, I would believe that you would have your choice of either tissue or mechanical valve at your age. When my valve was replaced, they advised me that even Cleveland Clinic was, as of early 2011, implanting tissue valves in patients as young as their mid-50's with good service lifespan expected for the implanted valve. As pellicle noted, depending upon whether or not your afib settles down, you may need to continue warfarin - but I'm pretty sure the INR targets for afib are lower than those for mechanical valves, so you might get some relief there.

As with any of these valve issues, we know intuitively that doing nothing is definitely not going to render the best outcome. Once we get past the emotional baggage of that point, making the choice of what to do next is another of those situations where the only bad choice would be to do nothing. (Of course, that's my opinion, and it is worth every bit of what you've paid for it. . . )
 

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
Thank you epstns. That was useful info. I was glad to hear I may have a choice, or maybe not. Depends on the surgeon I guess and as of now, not sure who will do the replacement. I wouldn't want a case like mine! Seeing your post reminded me of Christina Winkleman back in the early days. I can't imagine she had to have a reop close to a month after her initial AVR. I can't remember why. She was such an inspiration and support to us all and its hard to believe we lost her 12/12/2009. Thanks for giving me better odds than I was giving myself! Donna
 

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
Consult was done with cardio and surgeon and the recommendation is to go the IV TPA route. The reasoning being it is lower risk than OHS. It has risks which are scary to me .He e mailed me two papers done on this procedure. Looks like I will be coming off Warfarin and onto Heparin. My cardio made it sound like a 2-3 week procedure. As far as I have been told, this has not been done on panus before. My age is against me with OHS so praying this works. Is anyone here over 70 that has had a second valve replacement? Thanks again pellicle for giving me the heads up on this procedure.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
Hey there


will keep my fingers and toes crossed for you.

For what its worth when I was in having my mechanical fitted I was chatting to an knarly old fella who was in his late 70's and had just had a triple bypass done, he was doing well ... I commented that he was doing better than me and about 30 years older and he told me to not make him laugh cos that hurt to much ;-).

I was wondering about your condition and suspected panus ... your post confirms that it was.

here's hoping that this works for you.
 

hensylee

Well-known member
Joined
Jun 10, 2001
Messages
11,656
Location
snowy - Sharpsburg, Ga USA
I wish you well but have no advice for you. Except on age. Last year my cardio found one of my bypasses was functioning badly and chastised me for not checking in. He replaced it with a stent via groin input and al l serms well. I was nearly 81 at the time and fair.health. i know yhis.is an apple vs orange statement but just goiving the only input I have. Blessins to you as you strugglr slong with your hard choices. You know we wish you all good.
 

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
Thanks Ann for your support. It is so good to hear from you. It is like old times. You have had your share for sure but glad you are up and running at VRC again!
I confirmed the procedure today with my cardio and as soon as my INR goes down, they will admit me to Cardiac ICU. Not sure when that will be. I guess the procedure is new there, they have the staff familiar with the process and the monitoring ability. I hope its not for the whole time I have to be there. I will have ICU psychosis. Someone may have to sneak some Haldol to me, if its longer than a week. They want to get this going before the week end. Thankfully, as I want all hands on deck for this one.

Take care of yourself Ann. It is truly good to hear from you.

Thanks pellicle for the good wishes but jeez drinking oil???? How about whale blubber? Isn't that how the Eskimos do it?
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
djacq;n850128 said:
but jeez drinking oil???? How about whale blubber?
:)

quick tip ... don't drink it all at once ;-)

I haven't tried whale blubber but salted pig fat (browned quickly on the pan) is great!!

and btw my triglicerides are good as is my arterial condtion :))
 

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
Well, symptoms indicated the need for quick intervention. I was suffering from air hunger and fatigue. I was admitted 11 days ago to Cardiac ICU for seven days when
I received TP-A in six hour infusions ever day for 6 days. I had to remain on bed rest and had neuro checks every hour advancing to every two when infusion not running. Heparin was administered in between infusions and I needed a PIC line as my arms were bruised beyond recognition! They then transferred me to a step down unit on Plavix, ASA and Heparin IV. It was expected they would see some improvement in 3-4 days but nothing happened and they were considering stopping the TP-A but did do a last sixth dose. I had a fluoroscopy 2 days after completion of the last dose and shockingly it had worked!!!! The valve is closing albeit maybe not tightly. My "Click" is back but not to the degree it was originally. My medical Team was pleased as I believe I was the 3rd one who had this done and was not at risk for a thrombi on my valve. There are varying causes being discussed. I am still sorting this all out in my head and not sure of discharge plan. They started my Coumadin 12/10/14 and I am only at 1.4. I had one 5mgm dose, one 7.5 (my usual dose) and now two days on 10 mgm. I have to be 3.0 for a few days before going home. My monitor (InRatio 2) synced with the hospital labs so I know that did not cause my valve malfunction. Still wondering if this is a long term fix or will I have to enter the Pre Surgery Forum. Well, pellicle you did call this one!!! I feel good and breathing has greatly improved. I am very grateful for all the support and good wishes. Will let you know more on the outcome. I understand you can have more series of TP-A at a later date.

~donna
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
Hi

djacq;n850389 said:
... they were considering stopping the TP-A but did do a last sixth dose. I had a fluoroscopy 2 days after completion of the last dose and shockingly it had worked!!!!
that is excellent news ... I'm so happy for you. I truly hope this removes the need for a reoperation

...My medical Team was pleased as I believe I was the 3rd one who had this done and was not at risk for a thrombi on my valve.
sometimes the bleeding edge is the leading edge! Well done!!

There are varying causes being discussed.
I would be interested to hear those ... I have a mechanical valve too :)


Still wondering if this is a long term fix or will I have to enter the Pre Surgery Forum.
fingers crossed mate that you don't!!

best wishes
 

hensylee

Well-known member
Joined
Jun 10, 2001
Messages
11,656
Location
snowy - Sharpsburg, Ga USA
It's so good to hear t h at you have had some successand are breathing better. Maybe you wwill better enjoy the season at home. Good wishes and prayers for contnuing improvement.
 

ottagal

VR.org Supporter
VR.org Supporter
Joined
Aug 8, 2008
Messages
2,519
Location
Can.
Great news that your breathing has improved. May you continue to get better every day.
Thinking of you~
 

djacq

Premium Level User
VR.org Supporter
Joined
Oct 26, 2002
Messages
188
Location
Rhode Island
I am in my 16th day in the hospital post series six of TP-A for reported clot on my valve. Interesting as I self tested religiously and closely monitored my INR, bridged with care and wish I knew what happened. Unfortunately, the Dr is feeling my machine was not giving correct readings and now I am looking at going to labs. I had to get a new machine which came last week as I went on Medicare.

I brought my old machine with me which registered within .1 of lab reading. That was before starting any treatments. Then the Dr wanted me to verify more results with the lab and that's where it all went down. I was getting 2.3 per lab and one machine 4.0 and my older one 3.8. It later wouldn't even register. This seemed to prove to them that my machine must have been testing inaccurately. They denied it could be the IV Heparin I am on BUT I read last night that Heparin causes "unexpected results". Now to sell that one to all concerned. I don't have the package insert with me to know the particulars but I will be a unhappy camper if I get tied to labs!!!

My INR seems to be dropping instead of rising. I think my dose has been too low. They want me to be 3.5 for two days in a row and then get weaned off heparin and go home on ASA, Coumadin and Plavix. I am feeling like a permanent resident here now. I am not even going to try to prove my machine until I get home and can use the lab to compare my machine and hopefully be able to home test again. I have been assigned a Coumadin Clinic to work with now.

Hospital food is tiresome and looking forward to salted pig fat that pellicle recommends even though I don't ski!

~donnaI
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
Hi

djacq;n850553 said:
... Unfortunately, the Dr is feeling my machine was not giving correct readings and now I am looking at going to labs. I had to get a new machine which came last week as I went on Medicare.
that's possible ... Protimenow is one member here who feels strongly about this.

For my memory what are you using as your testing machine? I seem to recall its an INRatio



...This seemed to prove to them that my machine must have been testing inaccurately. They denied it could be the IV Heparin I am on BUT I read last night that Heparin causes "unexpected results".

indeed it does ... sorry to drop a slab of reading on you, but (in case this wasn't what you found) I thought this was a good summary with a source of some veracity

http://www.pathologystudent.com/?p=6519

Q. I have a question about the coagulation lab tests. I saw that an increased PT would result from Coumadin and Heparin. Do these both work to activate ATIII and therefore effect the extrinsic pathway? I then saw that PTT can be increased as a result of heparin as well, so I am confused as to where heparin works and what effect is has on the coagulation cascade.

A. Great question! Although both Coumadin (warfarin) and heparin inhibit the coagulation cascade (and thus the formation of fibrin), they have different mechanisms of action.

Coumadin works by inhibiting the vitamin K dependent coagulation factors. Several factors in the cascade (II, VII, IX and X) need to be carboxylated in order to bind calcium (which is intimately involved in the cascade). The thing that performs the carboxylation is vitamin K; it goes from a reduced state to an oxidized state during carboxylation, and it is recycled back to its reduced state by an enzyme called vitamin K epoxide reductase. Coumadin inhibits this enzyme – so vitamin K can’t carboxylate the coagulation factors, which then are unable to bind calcium, and are rendered ineffective. Whew.

Heparin works in a totally different fashion. It works by binding to antithrombin III (ATIII), which as you will recall is a natural anticoagulant that acts on a bunch of different factors on both sides of the cascade, but seems to have more of an effect on the intrinsic arm than it does on the extrinsic arm of coagulation. Heparin binds to ATIII, causing a conformational change that activates ATIII and potentiates its action.


Back to the tests. Since both Coumadin and heparin affect factors on both sides of the coagulation pathway, giving either Coumadin or heparin should cause the prolongation of both the PT/INR and the PTT. However, the PT/INR is a better test for monitoring patients on Coumadin, and the PTT is a better test for monitoring patients on heparin, for the following reasons.

Coumadin affects all the vitamin K dependent coagulation factors. However, these factors have different half-lives. It turns out that of all the factors (II, VII, IX and X), factor VII has the shortest half-life. So if you give a patient Coumadin, the first factor to show a decrease in activity will be factor VII (the others will drop off too, but not until later on). When you give someone Coumadin, it’s important to go slow and only give as much as is necessary. So it’s best to monitor therapy by taking a look at the extrinsic pathway (using the PT/INR), since that’s the pathway that will be affected first. You wouldn’t want to wait until the PTT becomes prolonged before adjusting the patient’s dose, because by that time, the patient could be over-anticoagulated.

Heparin acts on a whole bunch of factors on both sides of the cascade – but it seems to have more profound effects of the factors of the intrinsic arm than those in the extrinsic arm. So if you were picking between ordering a PT/INR and a PTT, the PTT would be the more sensitive test to order.
my underlines

so ... to wit:
Now to sell that one to all concerned.
the above link and details may assist that .. in conjunction to bringing in the hospital pathology specialist ...

I don't have the package insert with me to know the particulars but I will be a unhappy camper if I get tied to labs!!!

My INR seems to be dropping instead of rising. I think my dose has been too low. They want me to be 3.5 for two days in a row and then get weaned off heparin and go home on ASA, Coumadin and Plavix.
really ... coumadin and Plavix


Hospital food is tiresome and looking forward to salted pig fat that pellicle recommends even though I don't ski!
no responsiblity assumed on your cholesterol figures if you start getting into the salted pan fried porkbelly fat.

:-D

good luck with the discussions

PS: I like my Coaguchek XS and reading here has somehow tilted me away from the INRatio, with some people even reporting formula to apply to their output data to bring them inline with lab results. I'd suggest that you go buy an XS and (once off Heparin) consider testing side by side with lab draws on occasions. You can then put that into an Excel sheet and look at the results.

I normally get yearly lab draws to compare with myXS (get the needle, then go home and test, get the results of the lab from the Dr later) and so far have been no more than 0.3 away
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
also from here:http://www.frca.co.uk/article.aspx?articleid=100101

Artefactual prolongation of the APTT may be due to the presence of heparin in the sample

with respect to the CoaguchekXS

http://www.coaguchek.com/coaguchek_h...us_system.html
* Results unaffected by heparin at therapeutic levels
* INR corrected for hematocrit within specified range

also, this Australian gov site (I'm Australian)


https://www.tga.gov.au/alert/alere-i...monitor-system

15 December 2014
Consumers and health professionals are advised that Alere, in consultation with the TGA, has initiated a recall for product correction for its Alere INRatio PT/INR monitor system.

image of the Alere INRatio PT/INR monitorAlere INRatio PT/INR monitor systems comprise an INRatio or INRatio 2 monitor and INRatio or INRatio 2 test strips. They are used by health professionals and for self-testing by patients who are taking anticoagulant medicines, sometimes referred to as 'blood-thinners', such as warfarin.

It has been identified that, in certain cases, Alere INRatio PT/INR monitoring systems may provide an incorrect INR result that is clinically significantly lower than what it would be if obtained using a laboratory INR method.

This can occur if the patient has certain medical conditions (details of the specific medical conditions are available in the 'Information for health professionals' section below) or if instructions provided in the labelling for the device are not followed.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,419
Location
Queensland, OzTrayLeeYa
just quickly, warfarin and plavix should be ok ... I didn't know either way,but this seems to suggest its safe:

http://www.ncbi.nlm.nih.gov/pubmed/12719782

The effect of concomitantly administered clopidogrel on anti-coagulation status was investigated in patients receiving long-term warfarin therapy. Forty-three patients with non-valvular atrial fibrillation who were receiving long-term warfarin and had a stable international normalized ratio (INR) between 2 and 3 were randomly assigned to clopidogrel 75 mg daily or placebo for 8 days (Days 1-8). INR (primary endpoint) and plasma levels of warfarin enantiomers (secondary endpoint) were evaluated at Days 3, 6, 9, 13 and 22. Mean INR remained extremely stable in the clopidogrel group, the maximum percentage change from baseline being 0.6% at Day 6. Plasma levels of R- and S-warfarin also remained very stable in those receiving clopidogrel. No serious adverse events, premature discontinuations of study drug or bleeding occurred with clopidogrel. In conclusion, the stable anticoagulation status of patients receiving long-term warfarin therapy is unaffected by concomitant administration of clopidogrel 75 mg daily
 

Latest posts

Top