Newbie, Finally online

[MarkAlan]

Hey everyone! I've been reading your posts and trying to get on this site for months. Better late than never. I had OHS in May and it's nice to know there are others who have gone through the same thing.

My story in a nut shell...
I'm 46 yrs old. Had radiation and chemo for Hodgekins at 25.
After 20 yrs of ignorant bliss I started getting symtoms last fall(2005).
I am an avid cyclist(3000 to 4000 miles a yr.) and I thought it was just middle age catching up with me. After months of testing for other things(I had anemia and low thyroid) with no answers I went to a cardio. Past the exercise stress test. Was given the "option" of waiting to see if the symtoms got better or having a heart cath. I had the cath done because I felt there was somthing not right and it was'nt going to get better on it's own. Results showed a bad aortic valve, some stenosis on the Mitral and I needed triple bypass. Needless to say my wife and I were in shock. They shipped me off to the heart center at Spectum Health and I had surgery the next day(May 2, 2006).

I have expierienced many of the same things you all have in these six months of recovery. Recovery has been slower than I hoped but I am moving foreword. I am still waiting to feel like an 18 yr. old as promised by my cardio! I will be in the active lifesyles site for the most part and look foreword to sharing thoughts and questions with you all.

Mark.

 

[PJmomrunner]

Welcome, Mark! It sounds like you got the works and are working on bouncing back. You 've come to the right place for support of that endeavor.

All the best to you.

 

[Mary]

Welcome to the forum, Mark!

We have several members who had radiation treatment and later developed valve problems. We also have many members from Michigan, and my best friend lives in Coldwater . . . it must be a great state!

I think that you will feel closer to the promised age of 18 after another six months of recovery has rolled by. It's a tough surgery to recover from, but once you do, the benefits can be astonishing!

Best wishes, and once again, welcome to VR!

 

[Phyllis]

Welcome, Mark. Interested to know which aortic valve you got and if you got a mitral valve as well or just a repair. You are young and in good shape and you will feel like 18 again one of these days! Glad to have you with us.

 

[CathyK.]

Also wanted to welcome you!! You will get alot of support here and alot of hugs!! Sounds like you are doing good so far. Let us know what type of valves you have. Keep in touch!

 

[Marguerite53]

Welcome to this great place. And congratulations for surviving all that you have!! It is a testament to your personal strength and resilience!

I'm sure you will find many new people to share your story with. Please check the active lifestyles section as we have many avid cyclists.

Good luck and feel free to post more about your experience. It really helps to ease the anxieties of those who are waiting for their surgery.

Best wishes! Marguerite

 

[ALCapshaw2]

Welcome to our world Mark!

Yep, 20 years seems to be when symptoms from Radiation Damage begin to appear. The Radiation 'Guru' at the Cleveland Clinic, Dr. Lytle, recently reported the 20 year delay at a meeting of Thorascic Surgeons.

If you do a VR.com SEARCH for "Hodgkins" or "Radiation Damage", you will find posts from at least 12 other Radiation Survivors, including myself. Have you read Johnny Stephens history in the STORIES section (under 2 valves)? "Perkicar" is another member who has written about her post radiation surgical experiences.

You are NOT alone in feeling disappointed in your recovery. I had the same feeling and continued to improve for a full 18 months. I recommend that you continue to have Echocardiograms at least every year to watch for possible further deterioration of your Mitral Valve.

I urge you to contact your Radiation Treatment Center and supply them with an update on your Heart Issues. It will be interesting to see what they have to say

Where did you have your surgery?

'AL Capshaw' (a displaced Michigander)

 

[MarkAlan]

Thanks for replies

Thanks for replies

Obviously I left a lot of details out. So much has happened in the last six months it would take forever to go through it all.
I had my surgery at Spectrum Health in Grand Rapids, Mi. They have a large and respected heart center - not that I had time to choose.
They put in a Medtronic Freestyle aortic root valve(29mm) and did a mitral valve repair(ring).
The funny thing about my choice for a valve is I chose it to continue my active lifestyle and not worry about Coumadin. Turns out I'm prone to clotting(probably for radiation damage to veins). So I'm stuck taking Coumadin for life anyway. This does not bother me much. I will continue to bike and yes I wear a helmet! I had a TIA about a month after surgery and a nasty DVT in my neck about four months post op. I'd rather be safe than sorry. Stroke is my biggest fear at this point.

Mark

 

[Karlynn]

Welcome Mark! Sounds like it's been a whirl-wind of a year for you. Although May2, 2006 was my 25th wedding anniversary, so I'm pretty sure that the day will prove to be good in your life as well.

I don't know if you have a chance to read this thread, but give it a look.http://valvereplacement.com/forums/showthread.php?t=17116

You had a lot done to your heart so I'm not surprised that you still don't feel 18. I'm pretty certain you will.

At what point did they figure you are prone to clotting - the month after surgery with the TIA, or not until the DVT?

Read our active lifestyles forum and I think you'll see that Coumadin really won't stop you from pursuing any physical activity you love.

Best wishes.

 

[kodi]

Welcome Mark. Don't you just love the surprises life holds for us? Like you, I knew something was going wrong with me. I'm a distance runner (a lot older than you) and my running was getting worse all the time. I just thought it was old age and accepted it until my PCP started getting worried about what was going on. Thanks to him, I'm still here.
You will feel 18 again, just give it time.

 

[KAJ]

Welcome to the family Mark ! We are glad you joined us. It sounds like you been down a rough road. Over time, I think you definitely see an improvement. I think my surgery improved my overall health. I have never felt better. Before my surgery, I would usually get sinus infections every 6 months like clockwork. So far, I have been to the GP only twice.

Karl

 

[lynn]

Welcome Welcome!!

 

[AlonnolA]

Welcome

Welcome

Glad you joined Mark! It sounds like you are a pretty fit guy. What level of activity ARE you able to do now? Are you back to biking at all yet?