Post Hodgkins pts....need info on radiat problems, AVR Op and Post op? Healing etc

[Michellemar]

Hi, going into AVR surgery April 19th and a heart cat the day before. My Cardiologist can't say what he'll do because the radiation could have done stuff- it was 40 years ago. Have read some pts have fibrosed alot and that can be a game changer. What should I be looking for when he gives me his take on the trouble getting in, or whatever? What was anyone else's experience? The word "porcelain Aorta just comes to mind. Any experiences would sure help rest my mind. Also SOB if up too long, so am in bed now alot...dont know the BNP results, or even if i had my blood taken when i REALLY felt crappy. Scared silly, cause I don't have enough info about what to expect with this mantley radiated heart...even my thyroid tests could be wrong? As I take lots of aspirin? Help!

 

[New Guy]

Hi Michelle,

I had stage 2 Hodgkins in 1987 and was treated with radiation at Stanford University. Stanford at the time specialized in protecting the organs and joints from excessive radiation, but those organs and joints including my heart did receive some radiation.

I had BAV replaced last July at Mayo in Mn. One of the main concerns my Docs had was what would my pericardium look like when they got in there. Radiation can damage it and it can become rigid and inflexible. I consulted my Stanford Docs pre AVR and they suggested removing the pericardium completely to avoid the risks of endocarditis post surgery. My Mayo Docs felt otherwise because in case I may need another surgery, it becomes much more difficult for the surgeon because the heart will fuse to the chest cavity wall without the pericardium.

After surgery my Mayo surgeon said my pericardium was in very good shape. No signs of radiation damage. Thank you Stanford! He had no surgical complications from the radiation. He also said my aortic valve was very heavily calcified, so much so he couldn't even tell if it was BAV or just damaged due to the calcification. He also suggested my valve may have been damaged by the radiation and that may have caused my heart problems. I'll never know for sure, and it doesn't matter for me.

I'm doing great now. Feel good and back to work. I'm not quite 100% strong like I was pre surgery but I am 49 and expect to take longer to recover than when I was in my 20's during the Hodgkins. I do expect to be 100% a year from now. I am living a full and active life and glad to have this behind me now.

My work brings me often to Santa Barbara. My next visit will be a few days after your surgery, but I'd be happy to buy you lunch someday in future and discuss our similar histories.

God Bless and good luck!

Doug

 

[Michellemar]

Doug, thank you for your post. I was also treated at Stanford, in 1970. I was first stage, but had prophylactic splenectomy ( not what women usually mean when they say they want to lose weight!). At the time, Stanford was advertised as the only known "cure" at the Kaplan(you were there) institute, 80% cure rate. I'd been living in Canada, but the cure rate given me in Vancouver was 70%... so I went south.
Like you, I had those lead blocks. I had (?) a minute under that machine (linear accelerator(?)) face up 5 days/week for 4 wks.... Was in a test group.
I wish now I knew the rads, because occult damage occurs.... I'm 40 years out, and in my treatment day the mediastinal rad gets the openings of the RCA, LCA. I know you'd like to leave it all behind you... But google Hodgkins and radiation... You NEED to keep on the testing, I almost died because no one was looking for rad damage and my RCA in'04, was blocked 91-93%, caught by a prayer and ONE sharp doc...I was never watched ...that was a LITTLE hairy. You don't want to go there. I'm not saying go hypochondriac, but rad damage is always a concern for thyroid, all cor. Arteries, porcelain aorta, cardiomyopathy, pericardia everything you said. Very smart, your doctor, to leave your
pericardium alone!!!!
You are 17years behind me, probably had more rad as stage II, yet less because of refined treatments. But if you read
the lit, hodgkins and breast cancer mediastinal rad is still being targeted as a concern, even with the better techniques.

They saved our lives. Still... I want my pericardium, hello!!! Thanks so much for the post. I have a scar from the bottom of my sternum to bat an inch past my belly button. If I get the buzz saw... That's stem to stern!!!! I'm so scared of this surgery....remind me I wanted chicken salad after, for lunch??
Thanks. Michelle

 

[Lynlw]

Michelle , I would make sure your surgeon has experience with post radiation patients just to be safe. Not only because of your heart, but your concerns about your sternum healing etc.

 

[Michellemar]

Lyn, SO thank you. My older brother chose him because of his incredible reputation; when we spoke he said quote "Don't worry, I do 7 or 8 JUST LIKE YOU each year". Now, ... I would prefer 700 to 800..... .... But Hodgkins radiated people aren't totally everywhere....he does many many AVR's every year, he's the Head of Cardiothoracic at USC. But 8 or 9 still sounds scary to me.... ?? Or is it just my shadow's scary-type thing, too??? Michelle

 

[Lynlw]

Honestly I don't know how many post radiation patients are large yearly, but understand your concerns since its tough to find surgeons that have operated on many people with my son's specific issues too. IF you have any doubts, you could call around some of the other centers and ask about getting 2nd opinions from them, or even their experience with post Hodgkins patients.
There are quite a few members here who've had Hodgkins, if you do a search you may find more.

Is Starnes your surgeon? If so he's very good.

 

[Michellemar]

Gees, not only are you knowledgeable, but you guess good! I do, indeed. This makes me in Awfully good hands, then...
You know something I found fascinating...as we were conversing I was practically mesmerized by his ability to let his emotions play over a pretty immobile face....fine small muscle motor skills...I have never seen that degree on a face before....even close(!). Now THAT gave me confidence...!

 

[ALCapshaw2]

Welcome to my world Michelle!

We have had around 20 or so Radiation Survivors who needed Valve Replacement Surgery as members of VR.org You are obviously better informed than most about the possible damage. (Very few even know about "porcelain aortas"). I *assume* that you had Radiation to your chest as part of your treatment.

I am NOT aware of any problems with Heart Catheterizations because of having had Radiation Treatments (i.e. none of our members had any problems that they ever mentioned and neither did I).

If your surgeon sees 8 or so Radiation Survivors per year, he is in the Highly Experienced Group.
A former Heart Surgery Nurse I know once told me that even at some of the Major Hospitals, they would only see a few per year. You need to know than some surgeons tell their Radiation Survivors that they will use a Mechanical Valve to hopefully avoid the need for a future re-replacement surgery. Some patients have been told they would likely not survive a re-replacement (so it is best to use a highly skilled and experienced surgeon who will get it right the First Time!)

FYI, the vast majority (90%?) of Heart Patients have Coronary Artery Disease. Valve Problems constitute maybe 10%. I'm not sure of the statistics for patients with arrhythmias. Radiation Damaged Hearts are a very small, but increasingly well known, population. Typical Radiation Levels used 40 years ago were 3000-3600 Rads (but I've been told these numbers may not be totally accurate due to 'measurement tolerances').

You may want to check out the Mechanical Valve Manufacturer's websites for more information on their valves. As an engineer, I am highly impressed by the technological advancements offered by the On-X Valves (see www.heartvalvechoice.com and www.onxvalves.com). On-X is the only valve that I am aware of with a built-in barrier to retard/prevent Pannus Tissue Growth from impinging the leaflets. The St. Jude Master's Series Valves hold the record for durability, having been around for over 30 years and counting, with good results for most patients. (see www.sjm.com)

 

[Michellemar]

Okay, now I'm going nuts. I had double hip replacement surgery (twofers) in '04 6 weeks before my 91-93% blocked RCA (radiation) was discovered, when I went to show my hips off to my arthritis Xr., who for some reason put a stethoscope to my heart and said you sound like a honking goose and sent me across the street to my Cardio, who ...I said..something. Jaw....my heart dr asked me if I was apprehensive, I said yes, he shoved me over out of my insurance to a Dr in one call... I was adenosine nuclear scanned the next day, a message was on my phone by the time I got home(30 mi away) to check in for an angio... They kept saying, were just gonna look (the nurses) and I thought, sure, things are happening THIS fast and you're looking, so prepared to stay the night which I did as the stenting was a bit more difficult than the Dr. Had anticipated, but he aced it.
I AM going on, here.! I think the moral to my story, was/is Hodgkin's mediastinal radiation pts, the rad can rough up the inside of the arteries and cause plaque, even if there's no family history. And now the breast cancer survivors are coming up, similar story. Al, sorry, forgot about the crazy part ( you can see why)... I figured (I'm 62) bovine, with the new percutaneous in ...?Ten years... I have VERY thin skin and got awful hematomas and 12hrbloody nose from just
plavix. So warfarin scares the heck out of me.

I'm guessing the reason(s) why we are pos considered a no-go the second time around, but I'd sure like to hear it from
what YOU'VE gathered.!
Also, a Big Thank you for the heart cath report. Hope you can post more info re second.... Michelle

 

[ALCapshaw2]

Michelle -

Please send me an e-mail (with your screen name in the Subject Line or address) through VR and I will give you some more info (my PM mailbox is way overloaded and no longer accepts incoming messages).

Some of our members have had more Bleeding Problems with Plavix than Coumadin.
The KEY to successful Coumadin management is PROPER up-to-date Management.
Home Testers have the BEST results (using the latest management guidelines and more frequent testing, i.e. every week or two vs. every month with Doctors / clinics.) Dedicated Coumadin Clinics have the next best results. Stand-Alone Doctors / Nurses results vary all over the map from Horrible to Excellent, depending on their training, experience, and understanding of how Coumadin Really Works.
(The CRNP's at my Coumadin Clinic are EXCELLENT)

'AL'

 

[Lynlw]

Okay, now I'm going nuts. I had double hip replacement surgery (twofers) in '04 6 weeks before my 91-93% blocked RCA (radiation) was discovered, when I went to show my hips off to my arthritis Xr., who for some reason put a stethoscope to my heart and said you sound like a honking goose and sent me across the street to my Cardio, who ...I said..something. Jaw....my heart dr asked me if I was apprehensive, I said yes, he shoved me over out of my insurance to a Dr in one call... I was adenosine nuclear scanned the next day, a message was on my phone by the time I got home(30 mi away) to check in for an angio... They kept saying, were just gonna look (the nurses) and I thought, sure, things are happening THIS fast and you're looking, so prepared to stay the night which I did as the stenting was a bit more difficult than the Dr. Had anticipated, but he aced it.
I AM going on, here.! I think the moral to my story, was/is Hodgkin's mediastinal radiation pts, the rad can rough up the inside of the arteries and cause plaque, even if there's no family history. And now the breast cancer survivors are coming up, similar story. Al, sorry, forgot about the crazy part ( you can see why)... I figured (I'm 62) bovine, with the new percutaneous in ...?Ten years... I have VERY thin skin and got awful hematomas and 12hrbloody nose from just
plavix. So warfarin scares the heck out of me.

I'm guessing the reason(s) why we are pos considered a no-go the second time around, but I'd sure like to hear it from
what YOU'VE gathered.!
Also, a Big Thank you for the heart cath report. Hope you can post more info re second.... Michelle

Michelle, Valve choice is something to talk with all your doctors about. There have also been members who had radiation and got tissue valves. Now with Sapien valve- percutaneous valve- TAVI being a strong possibility for FDA approval, and already NOW people who are not able to have surgery can get a percutaneous valve in the US. That might play a role, as you thought in which kind of valve they reccomend.
By the way, what is considerred too high risk for surgery as far as being eligable for a percutaneous valve with out having to go thru the trial and get put in a random group (between just meds or TAVI) is "only" 15% chance of mortality..I was surprised I thought your odds would have had to be much worse than that, to be considerred too high..

Be sure to discuss ALL your health issues,including your bones problem because some of them might play a role in what kind of valve they reccomend and wether or not Coumadin could complicate some of them for example if you would have to stop for various procedures etc.

At least you know you are being seen by one of the best doctors, who has alot of experience with more complex surgeries. Since he does alot of the Children with Congeital Heart Defects that usually rank at the top of the list of most complex heart surgeries.

 

[Michellemar]

Lyn, thank you once again I almost DID get into the trial @USC till Dr. Wells there ( family friend) realized rad, NOT ankle spondylitis was my main oops, and got me right in with Dr. Starnes. OOhand, ankylosing LOVES certain molecular- shaped conn tiss to go to town in, my art dr was concerned for pericarditis and wants me smartly back in his office 2wks
Ost-op., Cardio here May 9, this will be 130 mi journey. Don't get why I can handle smothery feeling lying down, worst is if I'm up more than I hr in the house, my systolic drops ( and may I say I'm glad it's not the diastolic). The PA at USC did s rot when I coughed while being helped to sit up, with a (ha!) as in surgery now for obv reasons but I thought he was just being a grumpy old lady, like ive posted. Dr. Starnes said also the thickened bit from pumping doesn't always go back to earlier....(oh great). Don't know WHAT morbidity I'm considered, how do ya ask that one ??? That fraction is good-32-33%, ejection had been 70% on real treadmill 6 mo ago.... To the pt local Cardio doesn't think my heart is messing with me get THAT! While three Card at USC say NOW or yesterday. But has okayed me to go down there... A d stick around USC for a while after because as my art dr says, you come back here, no Card will touch you if something happens that's comforting, so finding friends, O e you ger caregiver to be with me in that lavish hotel for post-op.
Yeah, I don't BEND ot twist...bamboo spine to c2. With double hip rep, am walking bionic!!! I am sounding like such a downer!!!! Have always been a fighter...Al (caps haw) thank you for your plavix tip. Will check out your sites posted for more of that Hodgkins rad pts info. So much to do before surgery! Power of atty, legal guardian, will to live( off Priests for life website) no living will, thank you. But right now, hair done. To my waist...that and my voice ...the 2 things that actually DO work on me!!!! Gees, sorry, getting tired already. No I can do this
, you just lie down in the chair anyway!!! (yawn, didn't get mt... 12 hrs sleep in...), thanks all, Lyn and Al Esp. Thank you!!!!! Michelle

 

[Lynlw]

One totally different kind of suggestion, with hair that long, I'd put it in a braid before you check in for surgery, one less thing to worry about AS for asking you mortality rates, We don't ask anymore. Since Justin's had 5 open heart surgeries (and his chest open 2 other times at least partly) AND the last 2 Open heart we knew going into it his heart was fused to his sternum so opening his chest safely would be a little more difficult we don't ask, just make sure we go to the best surgeons for what he needs
The only reason i mentioned the 15% is because when alot of people hear only people who aren't candidates for surgery right now qualify for TAVI..often they picture someone close to deaths door, but actually having an 85% chance of doing well is highest risk
and right now today for to be high risk enough to be in the trials is a 10% mortality rate..since its a trial you still have to meet the other inclusion criteria, just because it IS still trials for high risk.
Make sure you talk to all your doctors, for example, i had a bad back..which isn't normally a big deal, but if you need to get spinal blocks every couple months for pain, you have to go off Coumadin for a few days, and other medical problems could have other things your need to take into consideration.
But you made a great choice as far as a doctor with alot of expertiece, before to ask him any questions you have.

 

[Michellemar]

Lyn, a braid it is! Thank you!
When I had the double hip replacement in '04, the nurse tried several times for a spinal block... But couldn't get a needle in. She kept apologizing, but my morphine was fine, thank you! I think if they HAD to, they could do a some kind of guided way to get in somewhere. Till now I WAS getting steroid shots 4/yr max... I wonder will I have porcelain aorta, the description Dr. Starnes gave me of my later yrs I believe included lovely chunks of calcium/bone to my head, and etc. He said during the procedure he'd be filtering, to keep this stuff from going north. I would think a whole new aorta sounds.great, do they make those..???? But I don't even know if I HAVE calcium up there. And I don't care to lose my pericardium, either? TAVI is sounding better, all the time...but I know so darned little...and after the heart cath, as I lie not moving, I have till the NEXT DAY to figure, considering what he finds, where we're going with all this...

Do I get to EAT after the heart cath, but before midnight??? I'll have not eaten since midnight the day before. And what is a "normal hospital stay for my "type"... 4 days? 6days? 2 bloody weeks???? I know ZIP. Sorry, I am going
on...but it's so hard to prepare when I'm the family I consult for these decisions, and I do believe I won't be at my
critical best......and can I get real tea, or coffee, after my heart cath but before midnight for the surgery the next day?
Oh, also, I'm Catholic, but a Protestant friend just told me I'm having surgery on Passover...for us Catholics, Passover is
commemorated on Thursday. I dunno, I just keep lurching from one thing to the other!!!!
Michelle

 

[kfay]

Michelle, I had a cath done the day before my surgery and as soon as I was out of the cath lab, they brought me a lovely dry turkey sandwich to eat. I was also allowed to eat dinner that night, just had to stop eating by a certain time that night ( I don't think it was as late as midnight since I had the first surgery of the day and had to be back at the hospital at 5:30).

There is no such thing as a "normal" hospital stay! I thought I would be out in 5 or 6 days based on what my surgeon's scheduling person told me and of course I was there longer, which meant rebooking airplane tickets, etc. So, hopefully, you'll be out in a week, but, in reality, you'll be out when they feel it's safe for you to be out.

Kim

 

[ALCapshaw2]

More Tidbits / recollecitions re: operating on Radiation Survivors

Someone mentioned that some surgeons consider operating on / opening a Radiation Survivor to be equivalent to doing a "Re-Do" because of the probabability of Scar Tissue in the radiated areas. Therefore, it is wise to be sure your surgeon has lots of Re-Do experience and is comfortable dealing with Scar Tissue.

One surgeon told me that cutting through scar tissue is like "chipping through concrete...everything is uniform and you can't tell where you are the way you can in 'fresh tissue' which has layers" (that can presumably be differentiated).

I can only recall ONE Radiation Survivor Receiving Tissue Valves (both Aortic and Mitral), the 70/80 year-old mother of xxxx1234 who also had lung damage / complications.

Tissue Valves last longer in patients over age 60 so that is in you favor BUT there is always a (relatively low) possibility of an Early Failure. That would NOT be good for a Radiation Survivor.

I would be concerned about sewing / attaching a tissue valve via catheter placement.
How would they attach to a "porcelain aorta"? Be sure to explore ALL of the ramafications of Radiation Damage if you consider a catheter placed tissue valve.

I recall One Patient who mentioned an interesting option. His surgeon discussed replacing his aorta with a 'sleeve' and then doing the valve replacement through a cut in the sleeve. Interesting idea.

FYI, the Radiation Guru at The Cleveland Clinic (#1 rated Heart Hospital) is Dr. Bruce Lytle.
I believe he is now the Chief of Cardiothoracic Surgery at CC.
You may want to research his publications. He has written and spoken about Radiation Damaged Hearts. I know he has operated on some of our members.

 

[kfay]

Al, We have another member on here, Flowergal (Hiafa) who chose a homograft for her valve replacement due to radiation damage from what was thought at the time to be Hodgkin's disease. I can't remember exactly how long she has had that valve now, but I want to say it has lasted 12 years and the last time we talked about it, it wasnt causing her any problems. Unfortunately, Hiafa doesn't come on here now due to the fact that she is fighting cancer in her upper spine, which they also believe is a result of that radiation all those years ago.


Kim

 

[Michellemar]

You guys are something. I had to drop out of my love... Performing concerts with our local Chorale, they are family, all55-60 of them. Grrr....and our spring concert is 10 days post op!! Not for me. But you all do the same, hang on in there, give of yourselves, and keep pushing. BLESSINGS to you, kim, for the mention of that turkey sandwich!! And Al, I'm bombed I'm so tired but I will follow that lead tomorrow. Lyn... Amazing Lyn... Had yet more time for me but the email I wrote her back went somewhere into that great circular file in the sky... You're all so darned helpful. I had my EMT training, once, I remember grim and I can do that. But I can do such fun, helpful compadres so much better. This world is a better place with you-all in it. Thanks from my heart. (the REAL one, that it's so turning out this is all about, anyway! Michelle

 

[RZG]

I feel blessed to have found this forum. You all have been so helpful esp kfay!!! the link you provided me with was so informative. I am keeping the hope and faith. Im hoping to connect with Al C. we have a lot in common.
RZG