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LuckyGuy

LuckyGuy

Active member
Joined
Apr 22, 2009
Messages
27
Location
Seattle, WA
Hello everybody,

I've been lurking for a while, and thought it's time for me to come clean. Thank you all for the great information you've already shared and I hope to be an active participant in the future.

I'm a 45yo male in the Seattle area. Like some others on here, I am a Hodgkin's Disease (Lymphoma) survivor. I was diagnosed when I was 18 and treated with chemo (MOPP). I had a relapse a couple years later which led to radiation treatment to the chest. Between the radiation and being congenitally bicuspid, that aortic valve doesn't stand a chance. :)

My stenosis was little more than a curiousity at checkups until this month, when I blacked out during exercise. A subsequent workup (stress test, etc.) and it's been reclassified as "severe," so looks like I'm slated for AVR now. My Mitral valve is thickened and stiff so that will be repaired or replaced as well (don't know which yet). According to my cardiologist, they might do a single bypass 'as long as we're in there.' I wonder if that's the cardiac equivalent of the mechanic that replaces your water pump whenever changing your timing belt.

Until the blackout I had no symptoms, except for a little fatigue and a frustrating lack of fitness (I've worked out 3x a week with a trainer for a year and never did get any fitter aerobically). Funny, now that I'm resigned to surgery, I'm noticing that my fatigue and other little symptoms (twinges and such) have been a factor in my daily life but I was ignoring them. So I guess it's time to go under the knife.

Based on some calls I made and the great information I found on here, I'm likely going to with Dr. Bruce Lytle at Cleveland Clinic for the surgery. He's well-known as the "go-to guy" for radiation-damaged valves. I grew up in the Cleveland area (Beachwood) and have family still there, so I'll have plenty of support during surgery and recovery. Plus I'll get my fill of Geraci's Pizza, which I still have dreams about. :)

I'm going to Cleveland in mid-May for a consult. CC said it wasn't necessary and we could do everything in one trip but I really wanted to meet Dr. Lytle and hear about my options (valve choice, etc.) in a pre-visit. I'll give an update when I know more from that trip.

Well, thanks for listening to my story and for all for your help so far. I'm looking forward to learning more and helping others when I'm on the "other side" of surgery and have input to share.
 
Hello LuckyGuy,

Just wanted to wish you a warm welcome to this great family. Glad that you 'came clean' and introduced yourself. Keep us posted on how things go in May. We are here for you. If you have any questions, ask away....there is always someone available to help out. Best wishes,
 
Hello, Luckyguy, and welcome aboard in an 'official' way...happy that you decided to come 'clean'! We all ignored the symptoms until the cardio old us it is time for surgery. Then we become more aware of them and we recognize them. I am sorry about your H Disease and I hope it is gone for ever now.

You are lucky that you discovered your problem in time! I heard a lot of good things about Dr. Lytle. Good luck. Having family in the area and eating the pizza you like will make everything much easier :D

It is a good idea to meet with your surgeon before hand and have some of connection before surgery. Lots of prayers.:)
 
Hi, and welcome!
As you mentioned, we have several members who underwent radiation for Hodgkin's only to end up with a damaged valve/valves. Congratulations on winning that battle, and best wishes dealing with this new one.
You've picked a great facility and a great surgeon, so I'm confident you'll do well.:)
Mary
 
Hi Lucky Guy.
Glad you posted your story and what's going on in your heart life.
I to I'm a Lymphoma surviror at the ripe age of 19. Went through both treatments radiation and chemo and also exploratory surgery. Back then they opened you up and I'm not talking about a small incision. My OHS incision is nothing compared with the exploratory surgery.
Sounds like your getting everything taken care of for now. It sounds like your having the same surgery that I had done with arota and mirtal valves.
The forum is full for great information and people so just ask away on any questions you may have.
Aagin welcome! :)

Crystal
 
Lucky Guy i would like to say hello and welcome
Sorry for reasons you found us but glad you did.

Enjoy that pizza,you deserve it:)

zipper2 (DEB)
 
Welcome to our World "Lucky Guy" -

As you probably have already determined, Johnny Stephens (in Seattle) and I share your background. He had St. Jude Mechanical Valves implanted in both the Aortic and Mitral Position. Have you read his "Story" which is (was?) listed on the Stories section on the VR.com Home Page?

Given your history, I would probably opt for Dual Mechanical Valve Replacement *at the same time* also (i.e. you know the MV is diseased, fix it at the same time to avoid a second surgery).

As you also probably know, I a Big Believer in the Benefits of the On-X Mechanical Valves over the older designs. On-X has recently been added to the 'option list' at Cleveland Clinic, but not all Surgeons have embraced On-X yet. Dr. Pettersson has the most experience using On-X at CC. It is my understanding the a couple of patients have requested On-X with Dr. Lytle but he has declined in the past. It would be interesting to know if he will agree to using On-X valves now.

While Dr. Lytle is known as the Radiation Guru at CC, I now realize that ANY Surgeon who has extensive experience dealing with Scar Tissue (typically anyone who does many repeat surgeries) probably has the necessary skills to deal with Radiation Damage.
 
I think your plan sounds good. I know for me the thing that kept me spirits up was that I trusted my cardiologist and surgeon. Post-surgery I still do. Having confidence in them going in makes it much easier to deal with the whole situation. I hope that you like Dr. Lytle and the CC is probably the best place you could go for surgery.
 
Lucky guy...welcome...glad you posted....I met with Dr Bruce Lytle last fall....he is amazing!! As I "only" have the mitral valve issue I opted for the robotic repair......Dr Lytle referred me to Dr Gillinov....he told me that with the entry "from the back" they would get a better view of the problem I have. I agree with what you have said Dr Lytle is the "go to guy".....I believe you will have "instant" confidence after you meet with him. I have been to CC twice and was not aware of the great pizza......I'll have to look that up. I grew up in an area south of Cleveland and am staying with my son who still lives in the area...I will be eager to hear the result of your consult with Dr Lytle keep us posted.
 
Now Cooker - play nice!

Just kidding. I do want to welcome Lucky to The Waiting Room, even though it seems that he will not be waiting very long. Lucky, the people here are here to help, and they are (IMHO) the very best resource on valve surgery, its implications and complications. Please feel welcome and ask all the questions you can think of -- it helps to keep down the anxiety and keep your mood under control.

Above all, the people here are the most wonderful group of caring support-givers I have found, and I've been here waiting a while!
 
More on the Mitral Valve issue:

Personally, given the Radiation Damage to your valves, I would opt for Mechanical Valve Replacements of BOTH the Aortic and Mitral Valve at the same time, "Even If" the Mitral Valve doesn't technically meet the "Surgical Criteria".

Given that Radiation Damage seems to continue to deteriorate the valves (admittedly at a slow pace), NOT replacing the MV seems to just be an "Inviation" to having another surgery when it DOES meet "Surgical Criteria", and that can be Way Sooner than one might want / expect, not to mention deteriorating Quality of Life Issues while waiting for the other shoe to drop.

IF Dr. Lytle (or whoever) 'thinks' he can "Repair" your Radiation Damaged Mitral Valve, I would then want to know "How Long does he think this repair might last".

Again, since you WILL be getting a Mechanical Valve in the Aortic Position, you WILL be on Coumadin / Warfarin for the rest of your life, Why not just get a Permanent Fix for the Mitral Valve "while he is in there"?

And YES, the Mitral Valve is more prone to Clot Formation than the Aortic Valve. This is where the Technological Advancements (90 degree Valve Opening, Reduced Turbulence, smoother Pivots, smoother/harder leaflet surface) available in the On-X Valve show their advantage in Reduced propensity for Clot Formation. Another Plus is The Built In Barrier to Retard/Prevent Pannus Tissue Growth reduces / eliminates one of the Primary Causes of Valve Failure.

I'm sure several of our members will be interested in what you learn after your visit to The Cleveland Clinic.

'AL Capshaw'
 
Wow!

Wow!

Thank you all for the warm welcome and words of support. What a great resource you all are. It's especially gratifying to hear about the experiences of other lymphoma survivors.

Crystal, I too had that "staging" exploratory surgery where they look for involved lymph nodes, etc. You're right, that incision is longer than any OHS incision. Maybe my surgeon will line up the new one with that and I'll just have one loooooong scar.

Al, your advice about replacing (instead of just repairing) the mitral valve sure makes sense to me. I willl certainly bring this up with Dr. Lytle when I see him. I will also ask about On-X versus the usual valves.
 
Hey LuckyGuy....based on your story I would indeed say your moniker is well deserved. I had one blackout episode about a year before I finally saw a cardiologist but I chalked it up to a panic attack. I had no clue I had a heart issue. I also had an instance a few months later in the gym where I felt like I was about to blackout. I went to the cardiologist with the intent on ruling out heart issues.

The fact that you've been with a trainer for the last year is going to really serve you well post-surgery. I was in the gym at least 3 or 4 times a week doing something prior to my AVR. While the surgery is significant for certain, its something you will bounce back from very quickly. At 2 weeks I was walking on a treadmill, by 4 weeks I was starting to jog for 2 or 3 minutes intervals, and by 6 weeks I was running 3 miles. Keep in mind that pre-surgery I couldn't run 2/10ths of a mile on a treadmill before chest pains and SOB. Recovery does take time but you will be amazed at what you will be able to do once this is dealt with.

I was also in CC, you picked a fantastic facility with a great staff. I had Gosta Pettersson as my surgeon and he put in an On-X. I've heard of Dr Lytle and his rep is first rate. Your in very good hands.
 
Hello and welcome! I had AVR at the CC last November. You'll be very impressed with their efficiency and expertise. I used Dr. Petterson abecause I was told that he could handle any kind of complication that occurred. And he did. I'm sorry my family and I didn't know about your pizza place--we could have used some good pizza.
 
Welcome Lucky - sending you a big wave from the base of the mountain

I have no technical advice to offer - I'm a newbie myself (caregiver to DH). Just sending you and those adorable munchkins a big hug.
 
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