Heart Valve Replacement

My brother was diagnosed with Scleroderma about 10 years ago. Anything that I have learned about the disease, has come from my own research, as he will not talk about it. That leaves me with a ton of questions, often. His scleroderma has affected his lungs and his heart at this point. He was told by his doctor that he needs an aortic valve replacement. I started looking it up online and I havent found one single article, or blog, that discusses open heart surgery in a patient with scleroderma.....we have also learned that his primary doctor is having a difficult time finding a surgeon that will perform the surgery and it was an 'emergency' 7 days ago....does anyone know anything about this situation?

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I would guess that the valve has been damaged by pulmonary hypertension. Otherwise, I can't help. Sorry for his situation. Hopefully, he can find a surgeon who can and will do his surgery.

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I will pray for him, that's all I can do. Sorry.

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Thank you for your prayers. Of course, I was hoping that someone had experience with this situation and would tell me who he should to go to and that this was a procedure that was performed with some regularity. (I didn't truly expect that result, but I certainly was hoping)I will definitely post any change on the situation, or the name cardiologist who decides to take this on, if there ever is one, with the hopes that it may help even one person down the line. Prayers are definitely welcomed!!

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Is your brother under the care of a scleroderma specialist? Here's a link to the Scleroderma Foundation's list of treatment centers:

http://www.scleroderma.org/medical/centers.shtm

The doctors at these centers would be in the best position to know of surgeons who are willing, and qualified, to help your brother. You could try calling a few of them, or maybe someone at the Scleroderma Foundation. Good Luck!

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I would definitely go with the scleroderma society. I had lung surgery (trachea and bronchial tube stents) in New York. My doctor is a great doctor. I had my surgery in NY Hospital. I have had wonderful care in NY. incredible doctors that have/are saving my life literally.

I live in Henderson (suburb of Las Vegas) and had the opportunity (my husband's insurance worked in NY) and I am now using this insurance... I knew some doctors in NY as my parents lived here for quite some time and then my Mom moved back to NV when my Dad passed away. That is my connection to NY. There should be a great place in any teaching hospital: Boston, St. Louis, Houston, UCLA, USC, Stanford, any teaching hospital should be helpful in advanced technolology and teaching; i.e. scleroderma. So.......

I will pray for you and PLEASE! if you have the time.......... let us know how you and your husband are doing! We are thinking of you. This website is very interesting and you can always glean info or just vent............

Take care,
Stacey ;)

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OOPS! I meant your brother not your husband. sorry for the typo..... that is my typical mistake per day.......

Take care,
Stacey :0)

Thinking of you! always remember that you are being thought of by many people.......

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I know that Sclerodderma will attack the heart, lung so on. If you can't find anything on it, go right to the doctor for more info. Maybe your brother will let you go with him next time he go to the doctor. I realy hopes he lets you, you sound like a caring sister.

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I have lung problems that are quite devastating, and my husband is with me at all times, for support. It is so helpful and I know a lot about medicine (I wanted to be a doctor before I got too sick, lol! and wanted to help people who are in hronic pain, again LOL!) interesting how life works out sometimes.. anyway, please go with your brother, just show up at his appt. if he is reticent, or just find out when hie appt. is by calling his doctor and checking his appt. time(s)... he will appreciate your support even if he does not appear to want it in the beginning. He may want your support, but does not want /know how to ask for it..

LET us know how you are all doing........... we are praying for you............

In friendship and ih love,
Stacey ;)

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My brother keeps his feelings, disease and any findings all to himself. I wish that he would join a group like this, such supportive and informed people. I only get occasional updates, through my mom. I have sent him emails that i thought would be helpful....such as a company called Comfort Foods made specifically for people who cannot take in enough food/nutrients, to keep themselves strong. This was when i had heard that he couldnt digest or eat much food. I know he got the information, and was probably grateful to know he has that support, but he never responded or spoke of it, which is ok with me. I wish so much that i was able to go with him, or speak to a doctor myself....but it is his life and his wishes. All i can do is make suggestions from research, and hope that they help him. I will pass along the suggestions that you all have shared here with me, thank you! I will definitely keep you updated, if and when i hear anything. I admire your strength and dedication to trying to help others...knowledge is power:) I will continue to pray for you all as well and will post an update when i have one!

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Hi,
I had aortic valve replacement in 2010. I have diffuse scleroderma, and had mild PH. The surgery went fine, the complications I had afterwards was that the heart took longer to heal (outside scars healed like a charm), and because of that I had lots of fluid retention and went into congestive heart failure. This in turn shook up the PH which went from mild to severe. It took me almost a year to recover from all that, but I am fine now, still on O2 but could go back to most activities, even swimming.
Your brother has to make sure to have a scleroderma specialist involved, my heart surgery team was closely involved with my sclero doctors.
Hope this helps, and good luck.

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I will pray for you and your brother <3

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I am definitely glad to know that someone has had the surgery, and though challenging no doubt, has recovered. If you do not mind my asking, what part of the country did you have your surgery? Our family lives in Ohio, but my brother is currently living in Nashville. Not that those are the only two options, obviously, but just as a point of reference. My brother has systemic scleroderma, not sure if that makes the situation different than diffuse schleroderma....

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I live in Canada (Ontario), so that will probably not help you.
The challenge, as I have been told, is the Pulmonary Hypertension, and that is exactly what happened. Scleroderma makes the whole thing unpredictable. Fortunately my heart surgeon never wavered, and his team worked with the pulmonologist, who is a specialist in PH and Scleroderma. He treats me for ten years and has never steered me wrong.
Diffuse and systemic is just about the same. Because doctors usually don't know what scleroderma is all about, your brother has to find a scleroderma center and get to a specialist, if he has not done so already. It is absolutely necessary, all the other non-sclero doctors usually don't know what they have to do and the sooner he gets into the right care, the better his chances for survival and better quality of life.
I usually live in Florida in the winter. So I have the best of both worlds.

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Thank you everyone for your attempts to help, i really do appreciate it. I am certainly glad to know that someone has had this surgery successfully....thank you for telling me your story. I want to provide him with information and suggestions that will help him and save his life. When Doctors don't have the answers, or are unsuccessful in finding a solution, i feel that you should arm yourself with as much information as possible and try to take a bit of control of the situation. Maybe I was being overly optimistic, or maybe it is just because i haven't physically battled this disease for 10 years...but no matter, I do not think that my brother currently has the same mind set. Perhaps he is doing everything that he can, but just not sharing it with us, although I am starting to doubt it. I am afraid that he is too tired to search or maybe he has been told there is nothing that can be done and just doesnt know how to tell us. I felt pretty hopeless when I first posted here, but then I was so energized by everyones stories of survival and strength and dedication to finding a cure, I became completely inspired and felt that he could lick this thing. The reality of the situation is that he has retracted even further from family, and isn't interested in "help", I havent even been able to share one single thing with him that i have learned. I am ashamed to admit, but i have been pretty angry the last two days...but it isnt my fight to fight and I need to step back. It isnt healthy for me to walk around mad at the unfairness of the world, and crying every 10 minutes. It is his fight to fight, or not fight and i need to respect that, albeit painfully.

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We have all been there. The denial, the"why me" stage, the depression, etc. So. don't give up on him. He has to come to grips with it himself. Just support him and love him and be there when he finally comes around. I think men are even worse for sharing their feelings, so give him time.
However, I would send him the information on the nearest scleroderma center. What he does with it is up to him. There is Dr. Rick Silver in Charleston, South Carolina. I met him at a user group meeting in Tampa, and he seemed very knowledgeble . I don't really know how far away that is from your brother, but I would travel to get to a sclero center. I think there are quite a few patients of Dr. Silver's in this group. All the information on scleroderma centers are on the scleroderma.org website.

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The good news is that my brother will be undergoing aortic valve replacement surgery on Friday. I am so grateful that someone is willing to perform this procedure and give him a chance:) He still has not communicated, but I am going to make the four hour trip to nashville, and I know that he will be glad I am there (even if he wont ever admit it:)) Any and all prayers are welcome and appreciated...I hope to be posting news of his recovery within the next weeks!!

God Bless

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We will be praying for him and all of your family....also for safe travel mercies.

Please keep us updated.

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Hi, I will keep you in my prayers and I will be looking forward to the good news of the new health reports............

God Bless!

Peace and Blessings to all,

Stacey ;)

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