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  • angiogram risks

    My wife has been diagnosed with non-obstructive HCM and doctors at Stanford University Hospital have scheduled her for an angiogram. Our daughter was diagnosed with IHSS 10 years ago. My wife is 56 years old and had no clear symptoms before chronic CHF episodes began over the past 3 years. She has been in continuous afib since being hospitalized for a week in November 2004. Attempts to cardiovert her by drug therapy and electrically were unsuccessful. She has been on Warafin since then, and several specialists at UCSF and Stanford determined this is a chronic condition and she has been advised of future prospects of transplant if her left ventrical enlargement continues over the next 3-5 years. Most recently, she was told by the head of the surgical team that ICD or alcohol ablation are unlikely to change the prognosis.

    My questions are, 1) how much greater are the risks of the angio procedures for an HCM patient in afib? 2) she will have to stop the Warafin for 3-5 days before the surgery, which in itself increases her risk of stroke, but there is no additional monitoring during that period; Is this common, and 3) are there alternatives or good reasons to postpone this?

  • #2
    I'm sorry about the prognosis, but why do they want an angiogram?

    She can transition from warfarin to Lovenox, which is a short acting blood thinner that you inject daily.

    I would only do the angio of there is a pressing need. If they are on a fishing trip, it may not be worth the risk.

    Comment


    • #3
      One good reason for an angiogram/catheterization is to measure pulmonary pressures as part of an evaluation for a possible heart transplant. If the pulmonary pressures are too high, such as may be caused by damage/deterioriation of the lung, then a heart transplant would have to be accompanied by lung transplant. This testing is a requirement for a potential transplant recipient.

      Regards,
      Rob Thomas
      --Living life on the edge .. of a continent!
      Charter member: Tinman Club

      Comment


      • #4
        .. as to the other part of the question about stopping coumadin, yes this is fairly common. Lovenox can be used for a day going into the procedure and for a few days following the procedure until the coumadin is "loaded" and regains it's affect on the INR.

        Since December I've been off coumadin several times for minor surgeries and tests. I don't like to do that but you do what you have to do..

        Be sure to get the INR-level back up to therapeutic level for at least 3 weeks following any surgery to ensure that any clots formed in the atrial appendages get dissolved before going off coumadin again.

        Rob
        --Living life on the edge .. of a continent!
        Charter member: Tinman Club

        Comment


        • #5
          Please call the office we can help provide you with additional information.

          Best wishes,
          Lisa

          973-983-7429
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Thanks for the replies to my posting. One reason that I question the logic of the procedure is that the surgeon told us my wife wouldn't be considered a candidate for a transplant regardless. Here's a little history:

            Since my wife began showing the first symptoms about 3 years ago, a consequence of the lung involvement was drastically losing her tolerance for physical activity, and her weight mushroomed. So much so, that she was scheduled to have a LAP-Band procedure just a week before she was hospitalized for the A-fib condition. Last year, we went down the long path of following the insurance requirements of getting approvals from several physicians (including her regular cardiologist and pulmonary specialist) to get laparascopic surgery as a medical necessity. It seemed that the catch-22 dilemma was she needed surgery to lose the weight, but she needed to lose weight to get surgery. All of her doctors were encouraging her to try to be more active to qualify for LAP-Banding, and she was given inhalers and asthma meds to help compensate for her diminished lung capacity. She does not have asthma. The cardiologist thought her fluid buildup was some pulmonary problem related to a past lung injury, despite a few years of chest X-ray reports stating evidence of chronic CHF. When her crisis landed her in the hospital, he was in total disbelief. Subsequently, she was put on Warfarin and a battery of meds (briefly including amiodarone), and the prospects of any such weight loss surgery has been universally rejected.

            Fast forward to today: many months and tests later, the Stanford teams have ruled out primary pulmonary hypertension and made the HCM conclusion based on LV wall and septal thickness. A transplant seems to not be a question of "if" but "when". However, without the ability to tolerate exercise, diet alone will still take up to 3 years to shed the 100 pounds they require to even be a candidate for transplant. So, the question is whether it is worth the elevated RISK TO LIFE by having the angio TODAY if in the best case scenario it cannot result in any decision about course of action for YEARS?

            Comment


            • #7
              I'm still not clear on why they want an angio. Have you talked to Lisa yet?

              I highly recommend seeing an HCM specialist for an opinion about next steps.

              S

              Comment


              • #8
                Sarah is right a specialist in HCM would be the best.

                FYI , I had a myectomy in 2003, left with residual difficulties because of the ventricle stiffness. Almost impossible to tolerate very much physical activity . Grocery shopping is my olympic event and I get a lot of help doing it . I need to have colon surgery, to prepare for this (dangerous for me surgery ), I am soon having gastric bypass surgery because due to my poor physical exercise tolerance I cannot exercise enough to reduce the weight by just dieting. I started the classes , eval's etc in early June , have lost 16 of the required 20 lb weight loss and as soon as all the doctors connect and make a plan ( same hospital that I had my myectomy at, so the HCM specialists are here too), I will have the surgery. They said I will lose 150lbs which will take me back to 3rd grade. I said no way they said yes way . I will then , hopefully be in much better shape to face the other surgeries I need.

                Get on line and read about The Obesity Center at Tufts New England Medical Center. It is world renowned and people move there to get the help they need. I have met some of them. All the surgery is laproscopic with a 3 day stay.

                I am thinking here that your wife possibly needs another opinion, by an HCM specialist.

                Best wishes,

                Pam
                Dx @ 47 with HOCM & HF:11/00
                Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                Lead failure,replaced 12/06.
                SF lead recall:07,extracted leads and new device 2012
                [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                Genetic mutation 4/09, mother(d), brother, son, gene+
                Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                Comment


                • #9
                  Wow. Complicated situation and you have a very legitimate question. I would certainly put a very direct question to the physician's requesting/ordering the angiogram as to why they want it done. The reason for the test might be to check for blockages in coronary arteries (something that they *perhaps can* do something about.)

                  I've thought of an item I'd like to add since my previous reply to my own reply (somewhat tacky). (I am certainly not a physician so you should keep that fact in mind.) The "exposure" coming off of warfarin is something shorter than four days. Warfarin (coumadin) takes a few days to "load-up" to have an affect on coagulation and has a finite half-life as well. It takes some number of hours once the warfarin has been stopped before there is an effect on INR / Prothrombin Time (PT).

                  The goal is for the surgeon "catch" the INR "on the way down" but at a sufficiently low-level to support the surgery and then get the INR moving back-up to therapeutic level as quickly as possible. Injections of lovenix (containing heparin) may be used to reduce the period of exposure, as well.

                  I need to shut-up now, because this forum is intended for the HCMA staff and moderators to be posting replies--and I am neither staff nor moderator.

                  Good luck,
                  Please keep us posted!

                  Rob Thomas
                  --Living life on the edge .. of a continent!
                  Charter member: Tinman Club

                  Comment


                  • #10
                    I seem to be making a habit of this, but...something I forgot to include:

                    The reason a check for blocked coronary arteries might be important is to determine if there is any *additional* heart attack risk associated with exercise/activity.

                    Rob
                    --Living life on the edge .. of a continent!
                    Charter member: Tinman Club

                    Comment


                    • #11
                      My wife is still trying to reach Lisa. We talked more with our GP about our concerns. She's been helpful throughout, and agrees if there are lingering questions and concerns, we should not rush to get this done. It's scheduled for the 20th, but we'll try to arrange a consultation with the surgeon at Stanford before moving ahead.

                      As far as we can tell, there's concern about CAD, and in addition to the angiogram, they want to do coronary angiography. It was also suggested that stent insertion may be necessary depending on if / where they find blockage.

                      The overall goal is for discovery with possible stenting to improve flow to give her an OK for moderate exercise, and be able to tolerate activity better. This answers the "why" but I don't know if anything can alleviate concerns about the risk/benefits considering her present condition. The risks directly associated with the procedures include sudden death, dislodging arterial plaque that might lead to clotting/stroke, hemorrhage, and latent complications if stents are inserted and develop scar tissue. So I think we have to be pragmatic and ask: are there any non-invasive options that may accomplish the same benefits over time? The idea of discovery is great, and lets them know flow pressures and see blockages, etc., but I'm still thinking that's irrelevant if transplant isn't an immediate option regardless.

                      Comment


                      • #12
                        I'm glad you've gotten more information to work with regarding the "why".

                        The conundrum you're left with is a classic. It seems to me that people take one of three approaches, one end of the spectrum seems pretty fatalistic to me (whatever happens will happen for a reason, either divinely inspired or not), the other end is absolutely risk-adverse, and the middle course is something more pragmatic. You're working at the pragmatic approach which my personal favorite.

                        The following is probably a statement of the obvious, if so, I apologize in advance.

                        In order to evaluate your own situation you have to ask often do the bad outcomes occur. Has anyone quantified the risks associated with the procedure? What is the success rate of the surgical team in similar cases and what kinds of negative outcomes have they actual seen? What measures does this team take to avoid negative outcomes. There's alot to be said for experience in these matters.

                        There must be positive reasons to undertake the surgery, too. What are the likely negative outcomes if the surgery isn't undertaken and there is a blockage? There may be some quality of life affects, too.

                        Good luck. I'd be writing down my questions for that surgical team consultation!

                        Rob
                        --Living life on the edge .. of a continent!
                        Charter member: Tinman Club

                        Comment


                        • #13
                          Non-invasive alternative to angiogram

                          Just wanted to say thanks for the replies. My wife and I spoke with Lisa, who gave us great suggestions we discussed with our regular cardiologist. We're continuing to follow up, but he feels the angiogram is worth the risk given her present condition.

                          One thing I came across that we'll be checking on ASAP is a CT angiogram. It's pretty new, and only a few hospitals have the new multi-slice CT scan devices (e.g., the Siemens Soma Sensation 64) that can image fast enough to be a real-time alternative to the invasive angiogram and coronary angiograph. It can measure flows and give resolution enough to make angiograms osolete. The advantage of this is that she would not have to stop taking Coumadin for 5 days, which can be deadly for someone in continuous a-fib. It also eliminates the risk of arterial damage, plaque displacement that can cause clotting, infection risk, and the list goes on.

                          Even the new generation of CT angiogram devices can't replace angioplasty and stenting, if needed, but can be a great time-saver as a pre-operative procedure so the surgeons can know what to expect in advance, get in and get out. The only problem is, we're not sure Stanford has the device (they certainly did not to us) and we've only heard in our area that UCSF got one last fall and only brought it into their Radiology department in March 2005. The expected places (Cleveland Clinic, Mayo Clinic, Johns-Hopkins and UCLA to name a few) have started using them. I'll share any info I get for the benefit of others.

                          Comment


                          • #14
                            Interesting stuff. The technology just does not stop!

                            Good luck and please keep us posted!

                            Rob
                            --Living life on the edge .. of a continent!
                            Charter member: Tinman Club

                            Comment


                            • #15
                              I chose to have a CT Angiogram over a traditional angiogram. As explained to me, the CT angiogram is most appropriate when the physican feels the results will be negative. If the doctor really thinks there is a blockage, they need to be physically in the vein to stint or clean out the obstruction. In my case the doctor was right-- the suspected obstruction did not exist. The CT was about a fourth of the cost of the angiogram and other than a slight reaction to the radiopathic material, was pretty painless. The clinic even sold me a CD which has a three dimensional image of my heart which is useful for clever Valentines day cards.
                              Jall

                              Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
                              Graduated to obstructed HCM by Dec, 2008.

                              Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

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