Newbie Introduction

[ALCapshaw2]

Jim,

Lyn makes some good points about your future treatment issues. The Bovine Pericardial Tissue Valve has the best record for durability of the tissue valves and a good record for low (but Non-Zero) incidence of early failures.

OTOH, some radiation treatment survivors have been told that a Second AVR would be Very Risky with a Low expectation for survival. I was intrigued that the elderly mother (70's?) of one of our members received TWO Bovine Pericardial Tissue Valves (Aortic and Mitral) considering her age and other Radiation Damage issues. TOUGH CHOICES that need to be explored thoroughly with your surgeon.

FWIW, I "have walked a mile in your shoes".

'AL'

 

[jamful]

Al-checked the profile and it does sound familiar! Thanks for the advice and help. Nothing new to post on my part until I have the PET scan later this week-JIM FULLER

 

[Bryan B]

Hi Jim,

I see that you are online at this late hour so I hope you see this message tonight. My message is not about your upcoming valve replacement or your past Hodgkins Disease, but about your current diagnosis of lung cancer. My Mom was a smoker for 20 years...BUT...she quit over 30 years ago (she is 77). She had been having problems with chronic bronchitis, asthma, allergies, etc. and her GP did a series of chest x-rays. They saw a spot on her lung and she then had a CT scan. During that scan they also saw a spot on her other lung. They did the PET scan and both spots lit up. She ended up having the upper lobe of one lung removed, and after she recovered from that surgery she had the lower lobe of her other lung removed. And guess what Jim...she is doing great!

I tell you that because your doctors have told you that they think the cancer is localized. My Mom's cancer in both lungs were localized and her prognosis after her surgeries is excellent. Get that "crusty" valve out ASAP and then get that lobe out ASAP! My prognosis for you is excellent! BTW I'm not a doctor or surgeon AND I didn't stay at a Holiday Inn Express last night.

Good luck and keep posting. This place...well it's hard for me to put in words how much this wonderful place has helped me before and after my surgery. And it looks like I might be leaning hard on the members again in the near future.

 

[mamanordy]

Hello Jim and welcome to the forum. I too had radiation to my chest when I had breast cancer many yrs ago. I had very aggressive treatment because my cancer had spread throughout my lymph nodes. Over a course of 3 months I had over 8000 rads of radiation to my chest. This was also in the late 70s when then radiation bounced all over the place. I am a high risk surgery because of all the scar tissue. My surgeon said he will make sure every single thing wrong with any valves or other wise gets fixed this time around because a second surgery would be too risky for me. Plus I have been on Coumadin for approx 5 yrs so there will be lots of bleeding. I am anxious to read my preop paperwork to see just how badly it was in there. The good drs at Cleveland Clinic first told me of my risks.
Jim, I am so sorry your cancer has come back. I cannot imagine what you must be going through. You are in my prayers. I also have multiple lung nodules, some calcified , some non calcified and I have to get CT scans every 6 months to make sure they are still the same size. I worry about lung cancer also.
Please let me know if you need someone to talk to . My email is [email protected]

God Bless you!!!

 

[Danny]

Jim, welcome, and many prayers coming your way. Your at an excellent place to get help and answers.

 

[COLLEEN S]

You have certainly been through alot. I hope the lung issue turns out well. I hope you can have your surgery. There is alot of good people on this forum. I'm glad you found us.

 

[ALCapshaw2]

Jim -

In the interest of 'Checking Everything Out' before they 'go in there', I'm wondering what the status is pertaining to your Mitral Valve. Some Radiation Survivors had MV issues simultaneously with AV issues and some developed MV issues 'later'. Some surgeons are now offering MV replacement to Radiation Survivors (along with AVR) if they show early signs of MV Stenosis as a means of avoiding a second (higher risk) surgery.

Also, I noticed that you did not mention GERD (GastroEsophageal Reflux Disease) issues. Those are also 'not uncommon' with Radiation Survivors as a result of damage to the Esophageal Sphinctor.

I hope you understand that I'm not trying to alarm you, just trying to be sure that your surgeon is aware of ALL the possibilities and checks them out before your surgery.

On a more encouraging note, EVERY member who reported needing Valve Replacement as a result of Radiation Damage SURVIVED their surgery and is still living as far as I know. Having an experienced and knowledgable Surgeon contributes greatly to a Good Outcome, not to mention maintaining a Positive Attitude. Hopefully you and your family will take some comfort in these statistics!

'AL C'

 

[marie]

I don't have anything to add but wanted to Welcome you here and with you the best possible outcome.

 

[Lynlw]

Jim, I wonderred how you are doing and if you've heard anything

 

[jamful]

I have not posted because I've been so busy WAITING! Had the PET scan and had to wait over the weekend for the surgeons to get together. Dr Hartman, my doc and the head of cardio-thorasic surgery At North Shore/LIJ Hospital, finally called at 8 tonight to tell me the PET showed no signs of cancer spread beyond the one mass in the right lobe of the lung. I can't tell you how relieved I was. He wants to do the valve surgery next week. I got a lump in my stomach and the anxiety level rose! I've been waiting for this surgery and now it's finally here-and very scary! He said he wanted to talk, again, to Dr. Glassman, the cancer thorasic surgeon, about plans for after the heart surgery-he was thinking brancoscopic biopsy before I leave the hospital followed by radiation (again) and then possible lung surgery at a later date. Dr. Glassman had originally proposed lung surgery one month after valve work. I guess we'll work that out-but-it's great to be thinking about anything AFTER heart surgery. I want to thank you all, especially Mamanordy. You, here, have done more to make this easier than you can possibly know. I can't help but remember the first time I had open-heart surgery 21 years ago. I had three kids, one only a month old (my wife recovering from her third C-section) a great job teaching, and a mortgage. I had lost my father at 12 my brother when he 18, and my best friend at 25. I had survived Hodgkins Disease (when it was still a killer of young adults) a heart attack at 37 and here I was, again, it seemed, challenged. I didn't see how my luck-good-or-bad- was going to work out. I was filled with fear going into the OR. But I came out! I feel better going into this than I ever felt about any of the previous events. I am reassured and hopeful about all the advances in medicine in the last 21 years. I'm told my surgeon is a "Castle-Connoly Top Doctor" and am encouraged by the fact that he does only the "tough cases" every day- all day. He plans to schedule ONLY me on the day of my operation-just in case. All I hope for is the chance to fight cancer again. The more I think about it- the more positive I become. The more I read here, the stronger I become! Thanks to all you wonderful people! I'll write when Dr. Hartman calls on Friday to give a definite day. JIM FULLER

 

[Danny]

Hi Jim, prayers are with you, please keep us informed.

 

[Lily]

...I can't tell you how relieved I was...

Thanks for the update. Very glad to read this and continuing to hope for the best .

 

[Cozycat]

Jim, sounds like you've had a life full of challenges but you're here still willing to face more head on. May your courage carry you through what you still must face, but this time you have the added support of all of us here and a multitude of prayers and good wishes being sent your way. My thoughts and prayers are with you.

Midge

 

[njean]

Jim,

My gosh, you have faced so many challenges in your life, it leaves me almost breathless & full of awe at your bravery & dignity with which you faced & have overcome all that you've been dealt!

You are a walking miracle & I applaud you for your tenacity & the fact that you don't wallow in self-pity but face things head on!

And I have no doubt that you will prevail from this latest blow.

I will keep you in my prayers for a safe & positive journey!

 

[jamful]

Here we go again- Dr. Hartman called tonight and left a message: After consulting with Dr. Glassman, the lung doc, they've decided to NOT wait on the cancer. They plan to do the lung biopsy FIRST. Dr Hartman the cardio-thorasic surgeon will be in attendance. I, obviously, didn't get a chance to ask any questions-but am concerned and will ask why-when they originally told me the lung biopsy would be too hard on the heart. Dr. Glassman will call with date and time, and I'll ask him. It's my hope that they want to change the order of things because they feel strongly that the cancer if very treatable and don't want to an lose an opportunity to cure. I, again, have that lump in the pit of my stomach, but, can wait the 24 hrs to hear from the doc. JIM

 

[Lynlw]

Here we go again- Dr. Hartman called tonight and left a message: After consulting with Dr. Glassman, the lung doc, they've decided to NOT wait on the cancer. They plan to do the lung biopsy FIRST. Dr Hartman the cardio-thorasic surgeon will be in attendance. I, obviously, didn't get a chance to ask any questions-but am concerned and will ask why-when they originally told me the lung biopsy would be too hard on the heart. Dr. Glassman will call with date and time, and I'll ask him. It's my hope that they want to change the order of things because they feel strongly that the cancer if very treatable and don't want to an lose an opportunity to cure. I, again, have that lump in the pit of my stomach, but, can wait the 24 hrs to hear from the doc. JIM

I am sorry things are changing and you have to wait to ask questions. My first thought like your was maybe they don't want to give the cancer any time to spread ect, but I would be curious what chnged since earlier when they didn't think you'd survie the biopsy. So would the remove the lobe before the heart surgery too then? I will pray you get your answers tomorrow and the answers bring you some peace.

 

[jamful]

North Shore Hospital tomorrow 7:30 am for bronchoscopy. Hope to get out the same day but don't know whether they're doing full anesthesia or not. I'm not looking forward to this-but-at least it's progress twords a final diagnosis and, then a treatment plan. I'm tired of being in the DARK! Have to go to bed-and sleep is not gonna be easy.

 

[buncle]

good luck tomorrow-prayers to you.

 

[Ross]

Sarah I'm so sorry to hear this. He will have his rightful spot in our "In Loving Memory" forum. I'll attempt to contact you for further information.

Thoughts and prayers to you and the family.


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