Newbie Introduction

[jamful]

Hello all- I want to say first that I have been reading and learning so much and that this site is a Godsend. I am a 61 year old male with a complex history waiting to be scheduled for aortic and bicuspid replacement along with 3 re-bypasses. I had Hodgkins Disease when I was 28 and in those days they gave massive doses of radiation with minimal effort to preserve heart and lungs. 33 years later, you can see the pattern of the radiation in the hair on my chest! I had an MI at 37 and 4 bypasses at 40. This September I retired from 33years teaching high school English. last year was tough because I was always tired and eventually short or breath. I Went through the usual series of doctors and tests ending with a caterization that showed an aorta stenosed to .8 cm2. Hooked up with Dr. Alan Hartman at North Shore/LIJ Hospital (head-cardiothorasic surgery) and he wants to operate within three weeks. He feared what he called a "porcelain Aorta" and ordered a pre surgical CT scan. Unfortunately the scan shows a "spot" on the right lung towards the front mediastinum. I'm scheduled to see Dr. Heartman's Pulmonologist (The guy he works with in the OR) in two days to determine if the spot is scarring from the radiation or-something worse. the surgery is on hold pending outcome of review and possible biopsy. I actually found this site by searching for "aortic valve and Hodgkins Disease" found many references to the great frequency of heart valve and artery damage as well as lung scarring being the main side effects of the radiation. This might sound like a series of complaints, but believe me, I'm grateful for the wonderful 33 years the treatment gave me, not to mention 33 years of marriage to a wonderful wife and 3 wonderful children. I guess it's time to pay the piper once again-but I do it with a smile and tell you I must be one of the very few who hopes I CAN have valve replacement surgery soon! best wishes to all- Jim Fuller

 

[Star54]

Welcome. I am sorry to hear all you have been through, and sincerely hope you can have the surgery. This is a really good site with a lot of very well informed people...as you will see when others post.
Welcome again fellow NY'r ....wishing you lots of good thoughts and prayers!

Linda

 

[jamful]

Thanks for the good thoughts and especially the prayers- JIM

 

[skeptic49]

Welcome to VR, Jim. I hope thge lung issue turns out in your favor and that you can proceed with surgery. Keep that optimism going!

Best wishes,

Jim

 

[hensylee]

Well, bless your heart, what a wonderful life you have in spite of what happened so long ago. You definitely have reached the right place to be when you face valve surgery. I had quad bypass in 2000, landed here while searching for 'what in the h*** happened to me', and found lots of info that was very helpful, even tho I did not have valve replacement. Welcome to VR. it might be your home for awhile - and maybe longer because, as you can see, lots of us made this our home away from home and then stayed around.

 

[Cooker]

Jim, welcome to the zoo ... wishing you all good reports and smooth sailing ... Godspeed

 

[Duffey]

Welcome, Jim.
I hope we're soon offering best wishes for a successful replacement. My thoughts are with you while you wait.

 

[hall]

Prayers for a good outcome for your lungs. You have been through a lot. God Bless.

 

[davidswife]

Welcome, Jim! Sorry that you had to find us but glad that you did. I hope you get an answer soon to your lung issue and that it is absolutely nothing and you can move forward with your valve replacement. There are so many knowledgeable and caring people here so don't hesitate to ask any question that comes to mind, you will be sure to get lots of answers and lots of support. Stick around and please keep us posted!

Nadine

 

[Kathy McCain]

Hi Jim,

Welcome to the forum! You've found the right place! We have a very knowledgable, and caring group of people. A prayer for you and yours, that you may have another wonderful 33yrs with them!

Please keep us updated.

 

[escargome]

Welcome Jim. Sending you tons of positive vibes. I hope you lung issue is resolved in a good way and you can proceed with the valve replacement. You seem to have a wonderful attitude. Please keep us updated as you move through this maze in front of you. God Bless You

 

[jax]

Welcome Jim. I am sure that you will find as I did that this is a wonderful place to come full of caring and supportive people. Here's hoping that your lung issue proves to be nothing and you are able to get those valve's replaced and have another 33 years with your family.

 

[Mentu]

Jim, welcome aboard. My AVR was 3 weeks ago so the anxieties that build while one is waiting are fresh in my mind. Here, at least, you can share them with several hundred friends who can appreciate much of what your are experiencing. Let us know how things are going with you as the next weeks pass. Here in VR we cry sometimes and rant and we heal together.

 

[jamful]

Thanks again to all-Met with pulmonary thorasic surgeon today and he confirms CT shows cancer on right lung. He doesn't think I'd survive a biopsy so has ordered a PET scan to confirm degree of tumor and spread-thinks it's localized and has informed Dr. Hartman that I should have the valve replacement surgery quickly so that about one month later he can remove the upper right lobe of the lung. He seems relatively optimistic about extending my time here and I'm trying to remain the same. As I've said before, I'm grateful for the 30+ years I've had since the original cancer and can only hope that my luck holds a little longer. The family is taking this hard because we lost my mother-in-law one year ago to lung cancer. I remain the optimist I've always been and I'm sure it will rub off and make things easier for all of them. We sometimes forget that the family and friends who are our caregivers suffer more than we, and consequently attention MUST be paid to them! I should be added to the surgery schedule quickly and will keep you all informed. I also repeat that I'm grateful to have found this site and appreciate all everyone here does. If things can work for me I think it will be a powerful message to all. Best wishes-Jim Fuller (jamful)

 

[hall]

Lots of prayers for you Jim. Keep that positive attitude.

 

[hensylee]

if you ever thought that members here don't care about our fellow heart friends, please know that you have had some more tears shed for you. I am so sorry about your cancer. your family is surely devastated. My dear Joe had lung cancer so I am familiar with their feelings. Joe's doctor told us that a good attitude is one thing that is so very important. he told us he had one patient who lived as if nothing was wrong and last I heard this man was still going - even after years. So place your faith where you need to, carry on, and live well. You will be at the top of my prayers list and please know that we hold you closely in our hearts as you travel this dangerous path. Blessins....

 

[Johan]

So sorry about the cancer, Jim. My family has recently been through this roller coaster ride with me, and we are all, each in our unique way, keeping you in our thoughts, through prayer, meditation and mustering your guardian angels. Keep your spirits up and we wish you a very sucessful series of operations and a smooth recovery.. Johan

 

[ALCapshaw2]

Welcome to my World Jim.

We have at least 20 fellow Radiation Treatment Survivors who have had Valve Replacement Surgery. You can probably find even more related posts by doing separate searches for "Hodgkins" and "radiation" on VR.com.

You are fortunate to have found a Surgeon who is familiar with the complications of Radiation Treatment to the chest and knows what to expect Beforehand. Knowing about the possibility of a "Porcelain Aorta" is a Real Plus!

From my understanding, you have ONE SHOT at getting it right. If you have read my posts in the Valve Selection Forum, you know that I am a Big Believer in the Technological Improvements provided by the On-X Valves (see www.heartvalvechoice.com and www.onxvalves.com). I would urge you to discuss this valve option with your surgeon after familiarizing yourself with it's attributes. It is also wise to have a Plan B, 'just in case' your first choice is not viable for some reason. My preference for a second choice is the St. Jude Master's Series Valve (and NOT the St. Jude Regent which can have some 'implantation iissues' that would not be good for someone with a Porcelain Aorta).

'AL C'

 

[Lynlw]

I am very sorry to hear you do have cancer again, I can just imagine what a blow this is for both you and those that love you right after finding out you need heart surgery. But I AM sure your great attitude will only help get you thru all of the battles that are ahead of you. You and your family are in my prayers.
I know you have alot to discuss with your doctors about what choices will be best for YOU, including valve choice. I'm sure your doctors, knowing more about you than we do, and certainly knowing more about everything you will be going thru in the next year or so, will have their preferences and reason for them. I know with everything going on and the fact you already had OHS there are no "easy" clear cut answers, But maybe we could help you with questions to ask all of your doctors. I'm NOT a doctor or medical professional, just a Mom, but I'm not sure I agree with Al's first choice of the ON-X or any mechanical valve for you. One concern I would have that would lean me more toward a tissue valve is you are 61 and you know you will be having at least 1 major surgery shortly after you get your valve. I would definately find out how dealing with coumadin would not only affect your lung surgery, but also any treatments you will be having as you kick this cancer's butt. I KNOW you can succesfully bridge for surgery ect if you have to ,and it is done all the time, but I would think coumadin would be a concern for future biopsies, ports ect and I would think going thru chemo (IF you will be) and all the side effects of that like nausea, vomitting COULD make keeping your INR stable tougher. Also IF the chemo wipes out your blood cells, and especially your platelets, I would think THAT could also be a concern. I also would ask the doctors if there are any interactions between the meds you will be needing or might be needing and coumadin. I KNOW if you already had a mechanical valve before your latest diagnosis of cancer, the doctors would deal with it, but not sure if that would be the best choice with all that is ahead of you. I hope all your doctors agree on what would be the best for you now, so it would be easier for you to decide what to do in ALL of your treatments.
Good Luck and please keep us posted.

 

[jamful]

Thank you all for the advice and prayers. Have to schedule PET scan on Monday and then contact cardiac surgeon for scheduling. The sooner the valve is replaced the earlier the lung can be worked on. Have shown this site to family member so they too can find answers to questions only they need support with. They suggested I should tell my entire story but I'm afraid it reads too much like fiction! Lots of tragedy has strengthened my resolve and made me someone who, I hope, is a positive example. Again, thanks to all for the help and guidance- but most of all for the encouragement. JIM