I should write a book on how to have heart surgery

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Brian,

Thank you!! I'm positive the nerves will return, but it will just take some time. In fact, a day after my surgery in 1991 I noticed a strange, burning pain on the top right corner of my head. Each day when the surgeon made his rounds I would ask him why I had pain in my head - on the skin, and would not get a reply. Eventually, after asking a 3rd or 4th time he told me he thought I had come to the hospital with some sort of injury. I told him I woke up with the pain. Over the next 6-8 weeks, possibly longer, the pain eventually covered 3/4 of my head before receding, and then finally disappearing completely. I believe that was nerve damage as well. The Phosphatidylcholine you recommend looks interesting and could be very helpful, thanks for the tip - I'll definitely check it out. I am planning on writing such a book. No reason not to start somewhere and possibly branch it out into specific areas. I am still amazed at how many people, even those who need heart surgery, do not have clue about what is going on. When I met Dr. Coselli, he asked me, "So, tell me Mr. Read, why are you here?" I explained my situation and he seemed pleased with my answer, though I was a bit miffed by his question. His nurse told me he asks everyone the same question and often receives the reply, "Ah doen knoooowww, Ma dokter told me ah needed surgery." I think that is sad, and if there is a chance to improve the level of understanding all the way around it could be beneficial for patients, doctors, and possibly even the medical industry.

Wanna hear something scary? I returned from a 20-year trip to Switzerland in March 2007 where I did my own INR testing and medication since 1999. Roche made me go to school for a week to learn all the details, etc. Anyway, the insurance took care of most expenses, with a deductible of around $450.00 per year. Last month, after arguing with my idiot internist, I called Roche in Switzerland and asked them about the special deal on the new Coagucheck XS. They told me it would be no problem at all, but could not send the device to the U.S. I had someone nearby take delivery, who kindly brought it back to me. I only paid $600 for the device. Here in the U.S. the same device is something like $2,950 or so? What a rip-off!! I have also heard the insurance companies here do not cover much of this expense. I'll save for later more of differences I've seen between the Swiss and U.S. insurance costs.

I'd like to hear about the recall of your Bjork-Shily valve. Did you receive the valve in 1984 then have to get it replaced with something else in 1985? That must have been awful.

Regards,

Roderick
 
Brian,

Thank you!! I'm positive the nerves will return, but it will just take some time. In fact, a day after my surgery in 1991 I noticed a strange, burning pain on the top right corner of my head. Each day when the surgeon made his rounds I would ask him why I had pain in my head - on the skin, and would not get a reply. Eventually, after asking a 3rd or 4th time he told me he thought I had come to the hospital with some sort of injury. I told him I woke up with the pain. Over the next 6-8 weeks, possibly longer, the pain eventually covered 3/4 of my head before receding, and then finally disappearing completely. I believe that was nerve damage as well. The Phosphatidylcholine you recommend looks interesting and could be very helpful, thanks for the tip - I'll definitely check it out. I am planning on writing such a book. No reason not to start somewhere and possibly branch it out into specific areas. I am still amazed at how many people, even those who need heart surgery, do not have clue about what is going on. When I met Dr. Coselli, he asked me, "So, tell me Mr. Read, why are you here?" I explained my situation and he seemed pleased with my answer, though I was a bit miffed by his question. His nurse told me he asks everyone the same question and often receives the reply, "Ah doen knoooowww, Ma dokter told me ah needed surgery." I think that is sad, and if there is a chance to improve the level of understanding all the way around it could be beneficial for patients, doctors, and possibly even the medical industry.

Wanna hear something scary? I returned from a 20-year trip to Switzerland in March 2007 where I did my own INR testing and medication since 1999. Roche made me go to school for a week to learn all the details, etc. Anyway, the insurance took care of most expenses, with a deductible of around $450.00 per year. Last month, after arguing with my idiot internist, I called Roche in Switzerland and asked them about the special deal on the new Coagucheck XS. They told me it would be no problem at all, but could not send the device to the U.S. I had someone nearby take delivery, who kindly brought it back to me. I only paid $600 for the device. Here in the U.S. the same device is something like $2,950 or so? What a rip-off!! I have also heard the insurance companies here do not cover much of this expense. I'll save for later more of differences I've seen between the Swiss and U.S. insurance costs.

I'd like to hear about the recall of your Bjork-Shily valve. Did you receive the valve in 1984 then have to get it replaced with something else in 1985? That must have been awful.

Regards,

Roderick

KInd of OT but when Justin was about 3-4 his surgeon AND cardiologist left CHOP and went to Switzerland, (YES I almost had a panic attack) BUT they sent this letter about how they could still follow Justin and the Carlos Casteneda clinic was only minutes from the airport AND overlooked lovely Lake Geneva. I would have loved to go and see it and (and buy chocholate and clocks) but Somehow I didn't think I'd get insurance to cover the appt not to mention airfare twice a year.
Then when they came back to the US they opened a Center in Delaware so we took Justin there, the first appt the orgderred a cath and he had surgery the next day, BUT they said IF we were in Switzerland we could just open this with a stent in the cathlab, but the one we need isn't approved here yet, so we have to operate, but luckily when the conduit was blacked again 2 years later they were able to use the stent.
 
Roderick, They recalled the valve just months after my surgery, but said they wouldn't replace it unless they detected problems with it. So I still have it ticking away. I was very anxious about it for years, but have felt better after my last two echos. They show it to be in very good shape. I have health insurance through Tufts HMO, they cover my INRatio machine, and all testing supplies completely. I feel very fortunate! All the best, Brian
 
Brian,

Thanks for the update. I can imagine what it would be like worry day-in and day-out about something like that, but glad to hear you are getting good echo results. Even better that your INR machine and supplies are completely covered - still cheaper than going to the physician and letting them test your blood.

Best of luck to you!!

Roderick
 
If you ever do write that book, I would also include how emotional it is when you are waiting to have your surgery or when you are 2 days away from it and it gets pushed back another month. I think the emotional part of it is just as bad as the actual surgery
 
Hi Laura,

That's a great point. I am working on the book, and really trying to put together something from the perspective of someone who may or may not have had surgery, and to give a really good overview of how to go about it, from insurance, doctors, lifestyle, support, psychological issues, pre-op, post-op, recovery, etc. I think it will be a lot of fun and hopefully useful.

Regards,
Roderick
 
You seem to have lived quite a life, Roderick, and have already inspired a number of us. I'm only now getting around to catching up with posts that showed up here while I was in hospital, and was delighted to find this thread. I love the fact that you're able to be in Houston with your mom.

My daughter (to whom I bequeathed many of my lousy coronary genes) is all hopped up about writing a cardio-cookbook based on my experience with the CABG and AVR, and dispelling some of the stupid notions about coumadin that are out there. Since I write quite a bit anyway (three blogs and science fiction), I'll probably use the former as an outlet rather than writing a book--but we could always use the experiences of articulate, well-informed people in a world increasingly populated by heart disease. I say go for it.

Oh, and since you clearly know how to use "y'all" appropriately, I dub you an honorary Texan. This is high praise from an exiled Cubs fan.
 
Pssst, BigOwl, thank you for the compliment, but I am the only 'true' Texan in my family. I was born in Corpus. When the Houston economy soured in the mid-80s I hightailed it to Switzerland, thanks to the passport I earned by having a Swiss mom. After 20 years in Switzerland, Altria's (Philip Morris) spin-off of Kraft got me transferred to Chicago in 2007. I feel so fortunate that I had the opportunity to come to Texas and have surgery. It's especially wonderful to spend time with my mom down here in Corpus while we both recuperate. LOL. However, I'm headed back to Houston to see my new cardiologist (Dr. Attar) on April 29, then back to Chicago the day after.

I think this site is wonderful, informative and crawling with so many interesting 'patients' and supporters. Putting together a book is really just a way to say thank you to everyone and will hopefully lend some guidance, support and information to others.

Regards,
Roderick
 
Pssst, BigOwl, thank you for the compliment, but I am the only 'true' Texan in my family. I was born in Corpus. When the Houston economy soured in the mid-80s I hightailed it to Switzerland, thanks to the passport I earned by having a Swiss mom. After 20 years in Switzerland, Altria's (Philip Morris) spin-off of Kraft got me transferred to Chicago in 2007. I feel so fortunate that I had the opportunity to come to Texas and have surgery. It's especially wonderful to spend time with my mom down here in Corpus while we both recuperate. LOL. However, I'm headed back to Houston to see my new cardiologist (Dr. Attar) on April 29, then back to Chicago the day after.

I think this site is wonderful, informative and crawling with so many interesting 'patients' and supporters. Putting together a book is really just a way to say thank you to everyone and will hopefully lend some guidance, support and information to others.

Regards,
Roderick
 
I am working on the book, and really trying to put together something from the perspective of someone who may or may not have had surgery, and to give a really good overview of how to go about it, from insurance, doctors, lifestyle, support, psychological issues, pre-op, post-op, recovery, etc.

Cool! Any further progress on this? Definitely an interesting project to undertake.


And....I see MORE people in the Chicago area. :)



Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...Chitown #2 = 07/25/09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Happiness is something we create" ... Sugarland ... 'Something More'
 
Ross, coming back after my initial post about the Heart/Lung entry point just under my right collar bone, it seems the nerver damage is repaired, but......

The right pectoralis muscle is lame; if I raise my right arm above my head it looks like a gunshot scar or a divot. I'm just trying to figure out how to rebuild the chest muscle, if there is a way. I seem to have the strenght, but the muscle is definitely atrophied and makes the right side of my chest look like I'm emancipated as you can easily see the outline of my rib cage. It's a bit frustrating since no doctor wants to discuss it. Hmmm.

Cheers,
Roderick
 
Heck we are all writing books. My book, "The Good Hearted Patient" will be out later this spring.
 
Roderick, I also went to THI at St. Lukes.... cant say enough great things about the place, and the care i received there. My surgeon was Dr. J.Michael Duncan, I would recommend him and THI to anyone. Glad your doing well.
 
Hell, we all could write a book, since it seems that everyone had some sort of dif. experience in the time leading up to surgery, during surgery, post op hospital experiences and the crazy times at home, rehab, getting INR's straight,...yada, yada, yada. A guy by the name of Adam Wick had the right idea. The book " preparing for heart valve surgery" had to be a money maker for him. I bought it and read it and then discovered this great forum. Then read his book again and then got jealous that I didn't have valve surgery acouple years ago and was the one to write a book. All one would have to do is follow this forum for awhile and be able to write a fantastic book on heart valve surgery. The guy is making money on a book I found rather lame. Anyway,...... Thank good for this forum and Guys like Ross, catwomen, and so many others, sorry hard to remember all the nick names. It has been great for me and along with everyone else, if any newbies have a question I would be happy to share my thoughts on the past 9 weeks post op.
Later,
Mac , from the frozen shores of lake Superior
AVR, single by-pass 11/19/09
Dr Suri
Mayo Clinic
 
Hi Roderick, maybe a sports doctor or physical therapist could help you out with an exercise regimen to rebuild your chest muscle. Assuming the muscles "work" you should be able to regain the strength.

Good luck with the book. :)
 

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