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Robin Shares About Aortic Stenosis And Cancer (Hodgkin’s Lymphoma)

Posted by Adam Pick on June 11th, 2008

There never seems to be a shortage of inspirational emails waiting for me in my inbox.

Recently, I exchanged emails with Robin, a fellow patient recently diagnosed with aortic stenosis. As you can read, this is the second major health issue for Robin. Several years ago Robin fought cancer (Hodgkin’s lymphoma).

Robin Harding With Her Golden Retriever, Griffin
Robin With Griffin (Her Golden Retriever)

In her note to me, Robin mentioned something that I had never heard before – the negative impact of radiation on heart valve function. Specifically, Robin noted that her medical team believes that her stenotic valve was caused by radiation treatments used to fight the cancer.

I thought you might want to read more about Robin, so I received her approval to post her email in this blog. Here it is:

Adam,

I just found your website yesterday upon scouring the internet for information about aortic valve replacement. I just got the news yesterday that my aortic stenosis is now in the severe category and I will probably need surgery within the next year. This came as quite a shock to me. I’ve known about the aortic stenosis for about eight years now but I’ve always been in the mild to moderate category with no symptoms and no limitations. It was shocking to me to learn how far the aortic stenosis has progressed since my last echocardiogram in August, 2007. I am scared to death and can’t get my mind off of what lies ahead for me.

I am a 47 year old married woman with a loving husband and a 13 year old son. I developed Hodgkin’s lymphoma when I was 19 years old for which I received radiation therapy. The docs think that the radiation caused my stenosis. I am very healthy and active. I go to the gym at least 5 days a week and, up until yesterday, did pretty strenuous exercise.

I have no symptoms of aortic stenosis. My doctor says that they hesitate to operate until I start developing symptoms. However, he does want me to severely limit my exercise. This represents a huge change in my lifestyle and I am very depressed about it. My feeling is, if I have to have the surgery within the next year, why not do it now while I’m still feeling good rather than living in limbo until I start feeling bad. I visit my cardiologist in two weeks and will discuss my feelings with him.

Regards,

Robin Harding
Manchester, NH

P.S. I received your book yesterday and read it cover to cover. I can’t tell you how much better I feel after reading your story and knowing that there is light at the end of the tunnel. My husband is reading it now and it should prove to be most helpful to him since he will be my primary caregiver. I feel so fortunate that I found you, your website and your book. Thank you!

Adam Pick
Written by Adam Pick A dad, a husband and a patient, Adam Pick founded this website in 2006 to educate you about heart valve surgery from diagnosis to recovery.
You can get the latest updates about heart valve surgery from Adam at his Facebook, and Twitter pages. Click here to email him.

 


Maribel says on June 11th, 2008 at 6:31 pm

Robin: You’re right in your feelings, waiting can get awful and your stress and anxiety levels will be up high when you do it. Muy husband had 4 months ago a mitral valve replacement and he was completely asympthomatic and excercising a lot, spinning, swimming. Doctors told him NOT TO WAIT FOR SYMPTHOMS they said: do it now you’re feeling well, the recovery is going to be easier and it did, he didn’t had trouble excercising again after the recovery and now he is cycling, working and looking great, as if nothing ever happened. So don´t be afraid, you’re going to be fine, you seem to be a warrior so if you beated cancer this is going to be a piece of cale for you, believe me. Good luck and keep us posted.

 


Kathy Mccain says on June 11th, 2008 at 11:43 pm

Hi Robin, I understand COMPLETELY what you are feeling! I lived with my aortic stenosis for 4 years before I had my surgery. Feb 11th of this year. I had known I had a murmur since I was twenty two, but did not know the exact cause. Well four years ago I was officially diagnosed with stenosis, but it was mild to moderate. This past year my cardio told me I had a bicuspid aortic valve, which became calcified. I too, have always been active with walking,and gym workouts. I was pretty much asympthomatic , and it really progressed quickly to severe this past year. They recommended I have the surgery. My exercise was limited for 2 1/2 mos before the surgery. I found it extremely depressing, so I decided it was time to go with it. I have had complications with PPS. The pericardial fluid is gone, but I am still experiencing some inflamation. I am walking my 2 1/2 miles several times per wk. I also, am starting to exercise at the gym. The surgery was a complete success, but we still need to resolve the inflamation. I am VERY HAPPY THOUGH to have the surgery BEHIND ME! Things can only get better for me now.

Good luck,
Kathy Mccain

 


Robin Harding says on June 13th, 2008 at 7:08 am

Thank you, Maribel and Kathy! I really appreciate your advice and encouragement! Robin

 


Kathy Mccain says on June 13th, 2008 at 10:20 am

Hello Robin,

Please let me know how you are coming along. Once you make your decision, and are on the road to recovery, you will have more peace of mind!

Sincerely,
Kathy

 


Sherrye Coburn says on July 25th, 2008 at 5:56 pm

Hi Robin,

Thank you for your post. I too have had Hodgkin’s and am facing aortic valve replacement along with coronary artery bypass x 3. It was comforting to me to see your message since I was feeling like the only
person with this scenario. My cancer was almost 40 years ago. I am 63 years old. My diagnosis of aortic stenosis was 6 years ago
and all seemed fine till my most recent 6 month check up in June.

Waiting is very difficult. You will be in my thoughts and prayers.

Sincerely
Sherrye

 


Jil says on November 7th, 2008 at 6:54 am

Hi Robyn,

Yesterday I went for my checkup at my cardiologist and found out that my surgery for my aortic stenosis was sooner rather than later. I had radiation treaments when I was 16 years old that contributed to my current condition. At 43 and a mother of 2 young children, I’m not looking forward to this proposition, and I’ve been hunting for information on the internet ever since.

Thank you for your story. I wish you well!

 


Keith Ebden says on May 28th, 2009 at 5:06 am

Hi Robin
Adam pointed me to this blog when I asked him about other heart valve patients who had had Hodgkin’s. My story is very similar to yours.
I am a 54 year old man and had Hodgkin’s when I was 15 for which I received radiotherapy. (Amazing the number of hits you will get if you search for Hodgkin’s / Aortic Valve on google). I didn’t really have any symptoms of Aortic Stenosis (I kayaked regularly) until quite recently but I understand that once you start to get them, things progress quite quickly and in the last few months they have! But here is where my story departs from yours – I have prostate cancer which needs an operation. I can’t have the anaesthetic for this until after the heart is fixed so I am booked in to have my aortic valve replaced on 10th July. My big decision is deciding on which type of valve to have – mechanical which will last for ever but require Warfarin or a bovine one that may need replacing in the future but apparently is the better bet if I ever need more radiotherapy in the future.
It is a while since you posted your story on this blog so Robin I wonder whether you have taken that big step? And also Jil from the last entry who appears to have another similar story – have you had yours?
I would like to keep in touch – it’s always nice to know you aren’t the only person in the world suffering!

All the best

Keith
Orewa, NZ

 


Robin Condon says on July 4th, 2009 at 3:45 am

Robin – I googled “Hodgkin’s/Aortic Stenosis” and found your entry. I know it’s been awhile since your entry, but I feel compelled to comment. I’m a 49 year old female, married for 25 years with two adult children. I had Hodgkin’s when I was 20 years old.

Ten years ago I had Thyroid cancer – had it removed and treated and have been fine. Two years ago I had a bacterial infection that went to my bloodstream. One test lead to another and I was told that my aortic valve would have to be replaced (in 0 to 10 years), and that my lung has a bad area. Last year I had a bowel obstruction caused by adhesions in my small bowel. Last Tuesday I had a mamogram, a 2nd mamogram, an ultrasound and a biopsy, and was told that I almost certainly had breast cancer. (All within less than two hours!) The next day, pathology verified that I have two primary invasive ductal carcinomas – one of which is very aggressive.

In each case, the doctors specifically call-out the mantle cobalt radiation I had in 1980 as the cause. Of course, without the radiation, I wouldn’t even be here to have these long-term side effects. I’m grateful, but can’t help but feel a little…well….disheartened.

Three months of chemo starts next week, followed one month later by a mastectomy of the left (bad) breast, another month of rest, five months of chemo (I believe), then mastectomy of the right breast and full reconstruction. I can’t have any more radiation, so they have to take both breasts. So in about a year I’ll have a new set of TaTa’s, a new head of hair and, hopefully, a new lease on life.

I don’t mean this to be a downer. It’s like playing Whack-A-Mole — just keep knocking them down one at a time.

I hope everything is going well with you now. I’ll visit the site soon hoping for an update on your situation. Peace.

 


Shannon says on July 10th, 2009 at 9:56 pm

I too had Hodgkin’s at age 18 and now 20 years later am facing aortic valve replacement, possibly mitral also. All of this is due to radiation. We (my parents and I) were specifically told that there were blocks made to make sure this did not happen. I just feel really betrayed by the whole medical system and now, once again, I have to put my trust in them for this surgery. I have also had a significant amount of thyroid disease following this also.

 


Angela Braxton says on June 9th, 2010 at 2:13 pm

OMG OMG I am reading my own life expereinces in all of yours. To both Robin’s and Steve.

I am almost 56. I had a non Hodgkin’s lymphoma at 21. Had large doses of radiation and chemo.
At age 35 had thyroid CA
At age 50 picked up heart murmur and the aortic valve was moderate until now,
I need 2 replaced. Aotic and Mitral valve.
Needless to say I was in such shock.. Ido not want to go thru all this pain again, I have been ill so much and know as you what it is like to feel yucky !
I am very active and exercise, thou I know my limits.

My kids are grown so that is a blessing. Still I would rather not add this to THE LIST of medical issues.

So glad to know I am not alone.

I live in Poughkeepsie, NY but will go to Mesa AZ to have surgery and recovery time. Lived there for 30 yrs. have a huge support system there.
Will come back to NY for the Rehab.

I bought this book the day after I found out and have made it the BIBLE for now. I am grateful for the different blogs, found a surgeon on the surgeon web site already.

If any one expereinced issues b/c of radiation plus let me know.

nyangela1954@hotmail.com is my email also.

Thanks,
Angela Braxton

 


Michelle says on April 1st, 2011 at 1:43 am

Well, here we are. At 22, in 1970 I was diagnosed with and treated with the mantle radiation treatment for, Hodgkin’s disease. I am now on calendar for aortic valve replacement at USC, on April 19, 2011 (about three weeks from now. I keep Adam’s book pretty close. I am not feeling very “up” about this surgery because having had the radiation, my Cardiologist…the same one that Adam had, the amazing Dr. Starnes- has said that scarred (was that the right word?) tissue in there can make this …like the OTHER radiated-for-Hodgkin’s surgeries. I also have ankylosing spondylitis which is big on putting calcium in places, too, so this was a double crosshairs.
My RCA was found “by accident” (by prayer) and stented in 2004; but other than that I have been so very lucky…and got 40 years more and they saved my life. I am apprehensive because radiation makes us all “unique” in this. Hope to get back on later to tell you all how it worked out for ME so, like Adam says, at ,east there will be a little MORE personal info for us guys to not be taken by surprise…and fear…about. Hope Adam does a writing on the radiation phenomena; a doctor interview that are on his blogs. Thank you Adam, for your work!

 


Heidi C. says on September 4th, 2011 at 8:20 pm

Wow…Reading these stories is deja vu! I was 19 when I was treated with mantle radiation (1989). I’m now 41 years old and have five children. I had an echo done a few weeks ago for a preop and they said I have moderate aortic stenosis. I have no symptoms. I also have been diagnosed with breast cancer (dcis) stage 0. Fluke that we found the breast cancer so early, negative mammograms, negative ultrasound, positive MRI. MRI was suggested by an Oncologist as an after thought. I was researching treatments for aortic stenosis when I found this page and will be talking to someone ASAP about this!!

 


Michelle says on September 7th, 2011 at 2:53 pm

Robin- or Adam… I also had Hodgkins, in 1970, and this last April had a new aortic valve put in, by Dr. Vaughn Starnes at USC. Amongst other reasons he was specially chosen because he is familiar with the problems radiation for Hodgkins can do to one’s heart. Also an RCA or LCA can be blocking, ossified at it’s OPENING to the aorta… A prayer got that diagnosed for me, it is now stented.There are many other concerns ‘re mantle radiation; read up on it- or choose Dr. Starnes to go in- the is the best!!! And checks out for possible future radiation-caused damage. Just don’t think God does coincidences. Good luck! Michelle Marrs
There

 


Deborah says on September 23rd, 2011 at 12:40 pm

My Husband (Russell)had Hodgkin disease at age of 14. They also did Radiation on him then and removed his spleen also. But Today 9/11 he has been diagnosis with Heart aorta valve disease and They say it was due to this Radiation he had in past.. We didn’t realize this was so common today. But Russell is still scared to death knowing what is going to happen next. They are doing a Arterial-gram on him first, but Doctor said may have to continue to Open heart surgery to repair this problem. I hope and pray all that has this problem can understand back many years ago they only knew to Help safe Lifes was Radiation. I really don’t think they expected this in the future. Or I hope not anyway..

 


Zach says on September 29th, 2011 at 12:24 am

Same Hodgkin’s disease story as most all of you before me. My doctor Is considering to treat me with a transcatheter aortic valve replacement procedure. I am sceptic because of all the calcification of my aorta caused by the radiation. Some say a thoracotomy is the best approach for the aortic valve replacement. Does anyone have any knowledge regarding this. Also, is there a particular hospital or surgeon recommended? Thanks in advance for your input. Scared out of my mind!

 


Ann Green says on October 4th, 2011 at 10:25 pm

My husband is 45 and had Hodgkin\’s 20 years ago. He just had a cardiac cath last week. We found that he has 4 vessels blocked and needs his aortic valve replaced. He is being evaluated at a University Medical Center right now but he feels like he should get a second opinion somewhere like Cleveland Clinic. We are just so scared because of the scar tissue caused by the radiation. Where is the best place to go for surgery?

 


Deborah says on October 8th, 2011 at 5:07 pm

Well , All has come True so far, As my first comment about Russell’s test and artery gram . We know due to radiation given for Hodgkin’s disease, it has harden the valves and also sac around heart. He is in Hospital today 10-8-11 awaiting Open Heart to replace maybe 2 to 3 valves(aorta , mitral valves) and do 3 by passes on arteries to and around heart.. If any one has had cancer in early 70′s, Please keep a good check up every year on things like this… But no matter what, you can be damaged due to lack of study or acknowledgment in the 70′s and early 80′s of Cancer and radiation treatments. They have and Do know more about it Now than they did back then…We are at UAB Hospital in Birmingham , Alabama. which is one of the best known hospitals in USA.. So we feel comfortable with our Doctor.. but also worry about complications..

 


Robin_California says on April 9th, 2012 at 4:51 pm

Another Robin here, April 2012. I am 58. I had Hodgkins 20 years ago, with radiation therapy. I was diagnosed today with a heart murmur and aortic stenosis. I will go in next week to see if it is mild, moderate or severe. My husband died 4 months ago of cancer, so this is a little much to take in. I would love to hear more about the original Robin’s journey since her post. Thanks to everyone for their stories and to Adam for his book and this blog.

 


Chris says on July 21st, 2012 at 6:48 pm

Just found this site. I also had chemotherapy and radiation starting at age 18 and ending at 21. I just turned 50. At 44 I had to have vocal cord surgery for polyps that had developed. At 46 I had surgery to open my left carotid artery and found out my right was completely blocked. Two years later I went in for a stent and woke up 60 days later out of a coma with a 6 way bypass a metal aortic valve and a pacemaker. When they went to do the stent they found all the major blockage and did the emergency surgery. The day after I was doing ok but then they gave me a blood transfusion. My body rejected it and shut down every major organ. I died twice for over a minute each time. The doctors were shocked I made it through. It’s taken me almost two years and lots of rehab, but I am doing very well today. Walking 3 miles a few days a week and working out with weights also. It wasn’t until after all of this that anyone made the connection of the radiation with my heart issues. I would have handled things much differently if I had known this was going on with others who had hodgkins. My dilemma is no doctors can give me an answer on what the life expectancy would be after all this. I played soccer all my life and I feel like I’m into penalty time, you know the ref is going to blow the whistle and end things but you don’t have a clue when. Single dad with two of my three kids still in high school so I really have to make sure I have my ducks in a row just in case. If anyone knows of any more information or a good place to go for information, I would love to know.
Thanks
Chris

 


frank says on July 27th, 2012 at 3:38 pm

Hi Chris
I had testicular cancer in 1970 at age 30. I had a small tumour removed. I was given about 20 radiation treatments as a precautionary measure. I had a heart attack because of a 100% blockage in an artery in 2008. A stent solved that problem. I had my aortic valve replaced with mech valve and an aortic aneurysm repaired in 2010. I never made a connection between the radiation and my heart problems. I have had skin cancers remove (many over the years) in the areas where I had radiation. The doctors claim no connection. My recovery has been smooth except for the warfarin checks. I am sorry to here of your problems but I never considered a radiation/heart problems connections. Good luck.
Frank

 


Donna says on October 1st, 2012 at 9:27 pm

My husband is 37 and he has been fighting Hodkins Lymphoma for the past year and a half. He took 6 months of chemo and they said he was cancer free. We went back for a pet scan 3 months later and the cancer was twice as active. His tumor is on the pericadium and now wrapped around his aoerta. He didn’t want to take radiation because of the damage it could cause to his heart. His doctors response to him was, what good is a good heart, to a dead man? Les finished his radiation and had a pet scan, we will know the results Oct 8. He has had complications from his radiation, heart related, and last week he had pnemonia. Please remember our family. I didn’t mention he also a dad of a 14 yr old and 16 yr old, he is a great dad and wonderful husband. It does sometimes feel like your the only ones going through this but we are not. Prayers going out to all who have posted.

 


Joanne says on October 3rd, 2012 at 6:23 pm

Hodgkins in 1977 (I was 15 and a half). Chemo & mantal radiation. Breast cancer in 2009 caused by the radiation – say the doctors. Double (skin saving) mastectomy at UC San Francisco. I just got back from the cardiologist an hour ago, (2012). Moderate aortic valve & MVP. It will need to be replaced – open heart surgery. I have severe asthma and a high heart rate (102 BPM in the AM before activity) and low blood pressure (94/62 today). I am a personal trainer and work out daily. Docs putting me on Digoxin because the other meds would make my asthma worse. It’s soooooooo frustrating to now have this heart issue! I was having a little pity party all by myself. I read all of your posts & I am now encouraged. I honestly thought I was almost alone as a Hodgkins survivor experiencing these new challenges. I’m still fighting back tears but my paradigm has changed because all of you shared. A big hug and thank you to you!

 


Chris D. says on October 16th, 2012 at 7:52 pm

This is a great blog I was lucky to stumble on to. I was 18 when I found out I had Hodgkin’s. Took 9 month regiment of chemo each year for three years. Didn’t work so they gave me radiation. This was 1980-1983. I’m 51 today. Over the years the radiation has played a part in health. I have had 2 vocal chord surgery’s, have one completely blocked artery and the other was opened to 40%. A little over 2 years ago I went in for a small stint and woke up 62 days later from a coma with a new metal aortic valve, 6 way bypass, pacemaker and feeding tube. Couldn’t walk or speak and lost almost 40 pounds. My doctors told me I flatlined twice and they gave me a 5% chance of survival. I’m a single Dad and they had also told my teenage kids that the chances were slim I would come through. When hearing the percentage my 16 year old was quoted as saying ” well someone has to be the 5%”. He was right …….. Today you would not know I had anything wrong. I was asked if I was bitter about the radiation, actually it bought me another 30 years. Although the longterm results are not appealing, they are still ” long term ” results. Live life in hope and not in fear …… Be the 5% !

 


Maureen says on April 14th, 2013 at 8:32 pm

37 yrs ago I was diagnosed with breast cancer. I was 26 yrs old. Had radiation. I am now being diagnosed with aortic stenosis and told I need it replaced. I am so scared of having this surgery. Has anyone had this surgery and are their procedures that are less invasive.? Can someone live a normal life and duration they would have lived pior to this surgery. I am so confused, worried, and have done so much research. Would like to hear from others on this subject..thanx

 


fschilling says on April 15th, 2013 at 4:24 pm

Hi Maureen,
I had cancer 40+ years ago. I had surgery and radiation. In 2004 I was diagnosed with aortic valve stenosis and an aortic aneurysm. I had yearly follow-ups. In 2008 I had a slight heart attack due to a 100% blockage of an artery. It was corrected with a stent. In April 2010 I had to have the aortic valve replaced and the aneurysm repaired. The surgery was done 4/28/2010. I had the valve replaced with a St. Jude’s mechanical valve and the ascending aorta repaired. I was leaning towards a tissue valve but the surgeon suggested the mechanical valve. He said that my arteries were that of a 40 year old man(good condition with little blockage). I come from a family with a history of longevity and he felt that the mechanical valve was a better choice(longer life). The only problem I had was the monthly blood work to check my proteome. It is not a big deal now. I am very active-golf several times a week, wood working, maintaining a 10 acre property. The recovery from the surgery took about 2 months. I was back play golf and feeling good within the 2 months. The mechanical valve is loud at night when trying to sleep in certain positions but I have adjusted. I hope this gives you some information that you can use. Good luck.

 


Lori says on April 20th, 2013 at 10:10 am

Hi all
I also had radiation therapy for hodgkins disease when I was 14. I am now 47
I have know I had aortic stenosis for about 20 years. I’ve had yearly echos since diagnosis.
We thought I could wait until TAVR ( trans aortic valve replacement) become more widely available. I had all the work up for TAVR. I wasn’t a canidate for the Edwards Sapien Valve (not enough calicum in the right spots to hold it on place)
This past January I started having chest pain, I had another heart cath and the stenosis was down to 0.82 and the reguargitation was worse also. I was sent for a consult for the Medtronic Core Valve (another TAVR valve) but since it’s a randomized trial Medtronic turned me down. So I am looking at aortic valve / aortic root and partial ascending aorta replacement.
The surgeon said he would only place a mechanical valve do to a repeat operation would be even higher risk when the bovine would have to be replaced in the future.due to all of teh scar tissue from the radition therapy and valve operation.
the extent of the surgery is scaring me. Has anyone else had to have all of that done? I am looking at surgery in teh next 3-4 weeks

 


Klosy says on April 23rd, 2013 at 10:12 pm

My husband had Hodgkin’s disease when he was in his early 20′s and at 44, 1 1/2 years ago he had chest pain. He had blockages requiring coronary bipass and he also had aortic stenosis requiring a valve replacement. Despite Cat scans & echos they were not able to know whether they would encounter significant scar tissue caused by radiation. He had his surgery at Columbia Pres in NYC with Dr Craig Smith. Dr Smith said that when he saw his heart and surrounding tissue, he would have never know he had received radiation. My husband really didn’t have any notable scar tissue and chose to have a Bovine valve. We were also shocked to learn that he had a bicuspid valve. (2 leaflets instead of 3. This bicuspid valve contributed to his stenosis.) still not sure why they didn’t see it on an echo before hand.
I wish you all of the best. It is quite a difficult time in your life but you will make it through. Before you know it your surgery will just be a memory. Best wishes to you.

 


Karla says on September 11th, 2013 at 3:15 pm

Hello, fellow Hodgkin’s survivors! I had cobalt mantle radiation for HD in 1977 at age 17 and am now looking at some ugly echo cardiograms over the last few years. My doctor recognizes that there is a large gap between the appearance of my tests and my syptoms and fitness level, but he is pushing me toward surgery for the mechanical valves. Currently I am seeking alternative therapies including vitamins K and D, serrapeptase, magnesium lactate, and Ondamed treatment. Has anyone tried these?
Robin, regarding limiting exercise, my experience tells me exercise as hard as you can while you can. Your fitness will carry you through when you do have late effects from the treatment. I am a little older than you are and I suspect I had much more radiation. Now, 36 years out (who could have predicted 36 years?!) I am certain that my refusal of treatments and agressive fitness program were very beneficial.

 


Mary Jo says on March 23rd, 2014 at 2:50 pm

Hello Hodgkins Survivors! Similar story…diagnosed when I was 15, and with mild aortic stenosis 10 yrs ago. I am 54 and scheduled for double valve replacement (aortic/mitral) next week. Scar tissue and calcification are the anticipated complications. Only recently, we determined that radiation was the cause. I would like to know of your experience and if surgery went without further complication. I appreciate the past 38 yrs that allowed me to be a wife, mother and grandma, and I will get through this too!! Best of luck to you for many more healthy years!!

 


Lori says on March 24th, 2014 at 6:40 am

mary Jo
I had Aortic Valve replacement May 6th 2013 with a Soren mechanical valve I was off work for apprx 13 weeks. My surgeon thought he was also going to have to replace the aortic root and part of the aorta due to scare tissuse but he did not. He did have to do a paracardial stripping as the sac around the heart was also calicfied causing the heart not to beat properly.
I did have some complications post surgey, I kept getting plural effusions (fluid around the lungs) I had to have several thoracentisis’ after one of the procedures to drain the fluid I had some bleeding in to the plural space and the fluid becoame loculated this caused me to have to have a 2nd surgery to clean out teh fluid pockets anf blood.
that was actually worse than the open heart suegery it’s self. But I am now feeling great and cannot believe the energy I have. all the pain and discomfort I had after surgery was worth it. I would do it again if I needed to. Ididn’t relize how bad I felt until I started feeling better.

 


Karina Paape says on May 11th, 2014 at 1:11 pm

Wow! I take comfort from all of the foregoing, so similar sounding stories post radiation. I was diagnosed and treated for Hodgkin’s at Johns Hopkins in 1978 (at age 21), full mantel field radiation at very high doses. I’ll be 58 next month and have always considered myself healthy. Thyroid went on the blink 12 years out, breast cancer and double mastectomy 24 years out, and now – 36 years out, I’ve been told I have only 52% kidney function due to aortic stenosis that has been closely monitored since 2009 by a cardiologist. So, now it’s time to step up to the plate and face the whole heart valve replacement/repair issue. In 1978 my oncologist warned me there’d be side affects, “we just don’t know what they are yet. But 66 treatments with radiation has bought me a pretty good last 36 years. I am bummed because I am very active. Good luck to all!

 


Donna Craft says on May 16th, 2014 at 1:20 pm

Comraderie! Love It! I am a thirty-two year Hodgkins survivor this year, diagnosed at age 25, (ruined that year) and then diagnosed w/ blocked coronary arteries and a failing aortic valve at age 50 (ruined that year). Living w/ makeshift surgery of LIMA (Left Internal Mammary) currently feeds my blocked left descending artery and two stents in circumflex. This is seven years later and becoming more and more symptomatic w/ aortic stenosis. Mechanical vs. Bovine is that a decision made when they are in there, based on scarring? Wondering how bad I am feeling, (physical limitations and fatigue) and if should just do the BIG SURGERY and repair a 100% blocked right descending and the valve (s). What do people think about going to the bigger centers for second opinions and/or care i.e. Cleveland Clinic vs. my local Detroit hospitals.

 


Chris says on June 2nd, 2014 at 2:34 pm

Hi Everyone,
I was quite excited to discover this discussion as I have been trying to do some research on Hodgkin’s Lymphoma and heart bypasses. In New Zealand it seems that very little is known about this link between heart issues, appearing years later, and radiotherapy treatment. Hence, I had difficulty being diagnosed as I was fit and slim and “didn’t fit” your typical heart patient, very little weighting appeared to be given to my history of radiotherapy. My surgeon with his extensive experience immediately recognised that my heart damage was caused from the radiotherapy. Unfortunately they are too busy to ever see you again so I have had little advice that was specifically based on my needs and was treated like an ordinary patient from that point. I was proactive and wrote to my radiotherapy oncologist who researched extensively for me and has provided better advice. She is keen to set up survivorship clinics in NZ which she said are common in America to monitor patients so my situation has triggered a potentially positive outcome for patients who follow me. I was not told about this possibility following my treatment and hence did not spot my symptoms neither did my medical advisors.

I am now 6 months post op from a double bypass and I am still experiencing excruciating stabbing pains which are not localised and therefore I cannot say it hurts when I move to the left I suspect it is nerve pain. I have been back to my cardiologist who did not appear to know but with our small population he is not that familiar with masses of patients in this situation. I was wondering if anyone out there has information on if recovery is complicated by the previous calcification etc from treatment. I seem to be taking a long time to come right and it is impacting significantly on my ability to return to a full time work load – I love my job.
Any advice would be appreciated or any links to potential readings.

Thanks
Chris

 

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