pre op first post im glad i found this forum!!!!

[RZG]

Hi! this is my first post, I have radiation heart disease from mantel Radiation i received 30+ years ago. Developed valvular disease approx 15 years ago. I have been getting more symptomatic in the last year. I am scheduled for AVR MVR June 21st at the Cleveland Clinic. I've had a sternotomy at age 16 and breast ca with bilat mastectomies 5 years ago. ca free but facing a redo sternotomy. Anyone like me? I am a RN working full time in critical care. very anxious waiting

 

[kfay]

Hi and Welcome. We have a couple of members who have had to have their valves replaced due to radiation damage and many more who have had more than one sternotomy. There was one member whose story is very similar to yours. She also had radiation damage for treatment of Hodgkin's when she was young. As an adult, she had to have her aortic valve replaced, had breast cancer, and needed surgery on her other valves when it was discovered last year that she had cancer in her upper spine. She has been undergoing treatment for that cancer and it has obviously placed the need for heart surgery way down the list. She also was an ICU nurse. She doesn't come on here anymore because her fight against her cancer has become much more of an urgent matter.

I'm sure going to the CC that you are in very good hands.

Kim

 

[ken taylor]

WELCOME When I was diogonosed ,I was scared to death. Now after a few years of being a member here I have no fear, Glad you found us, You can find out more here in one day than the doctors will tell you in 3 years!!!!

 

[drivetopless]

Welcome!!!

 

[RZG]

Thanks kfay!!! your reply makes me feel less alone. I have a friend with a similar story as mine who had AVR secondary to radiation but it wasnt a redo. I'm hoping the scar tissue wont make entry to difficult. As far as the ca so far so good. one hurdle at a time. Did she have any of her valves replaced? do you known when she had radiation and was it mantle, any info would help. Thanks RZG

 

[kfay]

RZG, I really don't know what kind of radiation she received, and I think it was about 35 - 40 years ago now that she got it. Here is a link to one of the most comprehensive posts on here about radiation damage:
http://www.valvereplacement.org/for...es-you-had-over-the-years&highlight=flowergal

You can do a search on here for radiation damage if you haven't already and see many threads. You can also do a search for her, Flowergal, and see some of her posts when she had re-joined looking for info for her surgery she needs now.

By the way, statistics for re-ops are as good as they are for first time surgeries in most patients. I don't know if your radiation damage puts you at any greater risk.

Kim

 

[Jeri]

Welcome RZG.....This site has been a Godsend to me when I found out that I needed an AVR. I am almost 4 weeks post op. I have had a couple "bumps in the road" but I am healing fine and on my way to getting back my life. There is still alot of information for me here and I am thankful for all these wonderful people for their posts and responses to my questions. I am sure this will be informative and comforting for you. You have really been through alot for a very long time and you sound like a very strong person. Stay positive and keep the faith. God bless.

Jeri

 

[Greg a]

Hi! this is my first post, I have radiation heart disease from mantel Radiation i received 30+ years ago. Developed valvular disease approx 15 years ago. I have been getting more symptomatic in the last year. I am scheduled for AVR MVR June 21st at the Cleveland Clinic. I've had a sternotomy at age 16 and breast ca with bilat mastectomies 5 years ago. ca free but facing a redo sternotomy. Anyone like me? I am a RN working full time in critical care. very anxious waiting

Thanks kfay!!! your reply makes me feel less alone. I have a friend with a similar story as mine who had AVR secondary to radiation but it wasnt a redo. I'm hoping the scar tissue wont make entry to difficult. As far as the ca so far so good. one hurdle at a time. Did she have any of her valves replaced? do you known when she had radiation and was it mantle, any info would help. Thanks RZG

RZG, a heart felt WELCOME to our OHS family glad you are getting some of the information about radiation that you are seeking and there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[nngbwh]

Just want to say Hi and welcome you aboard !

 

[Jkm7]

RZG.... Welcome. Happy you found us.

I have had two OHS, four years apart. The second was three years ago.
My Mass General Surgeon did both surgeries and for him, opening my sternum was 'another day at the office'. He was not concerned with a second opening and I healed great.

You're going to a great facility and should expect top notch care, but you know that.
The anxiety during the wait really is difficult but somehow we all get through it.
All best wishes.

 

[ALCapshaw2]

We have had at least 20 Radiation Treatment Survivor members who have had to have Valve Replacement Surgery, mostly due to treatment for Hodgkins Disease. You can find their posts by doing a Search on VR for keywords "radiation" and/or "Hodgkins".

Scar tissue is 'not a problem' for Surgeons with lots of experience doing 're-do's.
One of the most prolific 're-do' surgeons at CC is Dr. Pettersson (one of the Top Rated Valve Surgeons in the World).
The Radiation Guru at CC is Dr. Lytle. He operated on the Cancer-Nurse who was also a Radiation Survivor.

'AL Capshaw' (see my member profile for more info)

 

[bdryer]

RZG

It's cool that you are a critical care nurse, even so, it just goes to show ya that VR.ORG is the place to hang when you need comfort, support and advice for heart valve replacement from those that have been their. Welcome!

 

[Lynlw]

Just wanted to say hello. It's nice to meet someone we live pretty close to each other, We live in Camden county. Justin goes to CHOP for most of his heart care and surgeries, as others said as long as you go to surgeons and centers with lots of REDO & complex surgeries experience, REDOs usually have very good stats. Was your Sternotomy when you were in your teens for heart surgery? If so I was wonderring if you go to Congenital heart defects / Adults w/ CHD doctors?
I'm glad you were able to find us before your surgery.

 

[RZG]

Thanks for all you replies I am so grateful!!!! I had Hodgkins disease at age 16, i am now 50. My first sternotomy was in 1977. I am scheduled for AVR MVR at the Cleveland Clinic June 21st with Dr Lytle as my surgeon. I 've been aware that this was coming but the reality has been difficult.
I am hopeful, and anxious.

 

[Natina13]

RZG
Welcome to the "Waiting Room" !! Best of luck on your upcoming surgery. Sending positive, caring thoughts your way.
Renee

Go Team 2011 !!!!

 

[Michellemar]

RAG, welcome to the best site around. Had Hodgkin's (mantle treatment) in 1970... We were watching for trouble for years (I also have full blown ankylosing spondylitis) and we darned near missed...in 2004, the obvious...rad LOVES the ostium of RCA's, mine was 91-93% blocked with a material called "apatite", a kind of rock, similar to teeth. Nuclear adenosine scan, one stent, and good to go!!! Whole new life back. Then the malformed aortic valve, we could've all sworn we saw a ring of pearl-like calcium surrounding what was left of the valve...wrong again!! No calcium anywhere...!!! Also-and this will more closely (or not!) apply to you..no scarring, fibrotic or otherwise when he went in. Now it's very possible the tissue LOOKS great, but may be "older" than it appears...my tricuspid took a lot of the backed up system pressure, and we'll see if time gives the tissue (along with very good nutrition) a bit more-well, "liveliness". So this is a bit of peek at what I might have done sooner..... Do watch yourself, rad is darned sneaky and just stay darned well on top of things.
So glad you found us, hope we can aid you as much you (will be!) giving us with your reports! It's a terrific place. Welcome! Michellemar

 

[RZG]

Michellemar,
I also have a 100% occluded RCA with good collareral circulation to the inferior wall. my surgeon may or maynot bypass the artery. He will most likely replace the Aortic and Mitral valves they appear to be very calcified. I also have TR which may improve if the other valves are replaced or he may put a ring around it either way your right radiations is sneaky and cruel!! Glad to hear your doing well. Mantel radiation also causes breast ca.so keep a close eye on that!!! I am so grateful for all the wonderful information and caring this site has given me and others!!!! stay happy and healthy!!!!!
RZG

 

[Exoself]

RZG -- best of luck to you. I have AVR scheduled with Dr Lytle on may 27th. Pre-op tests and checkin have been smooth and professional at CCF. Best to you!

 

[ALCapshaw2]

RZG -

I see that you tried to send a PM to my hopelessly overloaded PM mailbox.

You can send an e-mail to me through VR.org. Just be sure to include your screen name in your address or Subject Line.

'AL'

 

[RZG]

One week to go till Im out of the waiting room. still working until Thursday, keeping busy to keep from loosing it. My son graduates Friday from High School and my youngest graduates from 8th grade and oldest son home from college so not to much time to worry. reading posts and enjoying this forum helps so much!! Thanks for listening!!

RZG Rachel