New to forum-advocate for Rochester, NY patient

[Soylange]

I just discovered you people last night and am so impressed by your compassion and willingness to share your experiences! Very inspiring and.....well, heartwarming!! This my first post and I am writing on behalf of my 61 year old "friend," who has had a bad AV (stenosis) for 30+years. He had a stroke at 30 (that's when bad AV discovered), with resultant speech after-effects and a controlled seizure disorder. He landed in the hospital a month ago because of previously undiagnosed severe anemia (Hgb 7/HCT 19) missed by doctor who ordered blood tests last July (we guess he never looked at the results of the tests he ordered--talk about inept)! We NOW know he was on the downslide at that time with Hbg 9/HCT 29! So until he can conquer the severe anemia, he has to wait for AVR, tho his AV is "severe insufficiency," very elevated RHR, and he has a newly diagnosed atrial fibrillation (hopefully AF because of the anemia). Anyone here had severe anemia issues pre-surgery? He has had iron infusions and the blood numbers are improving, but he still feels just AWFUL (very weak/hard to breathe/depressed). He lives in the Rochester, NY area; I will be there on Thursday for a week (was also there post hospitalization for 2 weeks in January) and will try to get his "numbers" that I've seen here from several posters. Anyone have good/bad to report about cardiologists/surgeons in the Rochester, NY area? Have noted nickd's (from NJ) praise of Cornell's facility, which isn't too far. Thanks so much for any input/advice you can give--what a great group!

 

[Ross]

Welcome to the forums. Sorry to hear of your friends problems.

Do they know the primary cause of this anemia? Seems to me, they are going to have to figure that out before they can do anything.

 

[Soylange]

anemia in heart disease

anemia in heart disease

Yes....first things first! Lots of testing under way past few weeks. Off work for 4 weeks now--another stressor with this economy!

 

[hensylee]

welcome to VR. Stick with this site. There will be lots of posters soon - this being the weekend some folks aren't checking in as much as during the week, but they'll be popping in before the night is over. Yes, I agree with Ross that the reason for anemia must be found first. Thanks for being his advocate. We all need one. Blessins........

 

[Nancy]

How nice that you are an advocate for your friend! Make sure that he signs papers allowing you to be able to speak with his doctors on his behalf, or they won't talk to you at all.

But maybe you already have addressed this issue. HIPPA laws make it so hard.

 

[WayneGM]

Welcome to VR. Glad you found us.

 

[Soylange]

Thanks, Nancy. Yes, have addressed the HIPPA issues with his main doctors. Wish I could be there in person for ALL of his appts (I'm in CA), but we do try to schedule as many as possible for when I can be there. It's going to be a tough year, I'm afraid. Thanks for the support!

 

[tprice54]

Here is a web site from New York State showing the latest (2003-2005) stats for heart surgeries....it can be useful in picking a surgeon/hospital.
http://www.nyhealth.gov/diseases/ca...ease/docs/2003-2005_adult_cardiac_surgery.pdf

 

[kpearse]

Welcome, I'm kind of new here also. Now I come here everyday to see whats going on and what info I can use.

 

[briansmom]

My son's anemia was discovered before his dissection and subsequent heart attack. We have never really figured out why he was anemic but it finally seems to be getting better. Brian got ProCrit injections and iron infusions when his blood count was low.

 

[Rich]

It's really nice you are there for your friend.
We all needed someone to be there for us.
Since you are in Rochester have you considered the Cleveland Clinic?
It's really not that far away from Cleveland(I have been to Rochester when I still resided in Cleveland).
Rich

 

[gerriann]

I am from Rochester,NY. I am a medical professional myself and I recently had aortic valve and root replacement.

My cardiologist is Tom Curran and my surgeon is Peter Knight. I did lots of research and interviewing before I chose these two. My experience was as positive as open heart surgery could possibly be.

 

[Mary]

Hi, and welcome, Gerriann.
How long ago was your replacement? Have you had any significant post-op problems or has it been a smooth recovery?

 

[gerriann]

Hi, Mary. Thank you for the welcome. I had my surgery this April (on tax day) and my recovery has been easier than I expected. I went back to work at 4 weeks and took a driving vacation with some friends at 8 weeks.

My biggest problem continues to be neck and shoulder muscle pain. My poor son is a massage therapist and I need him to work on my shoulders almost every night!


Have you had surgery yet? I wish that I had known about this site before I had surgery. It was a long 5 years from diagnosis until surgery--I think that I was actually relieved when I was told that it was time.

 

[Mary]

Hi, Mary. Thank you for the welcome. I had my surgery this April (on tax day) and my recovery has been easier than I expected. I went back to work at 4 weeks and took a driving vacation with some friends at 8 weeks.

My biggest problem continues to be neck and shoulder muscle pain. My poor son is a massage therapist and I need him to work on my shoulders almost every night!


Have you had surgery yet? I wish that I had known about this site before I had surgery. It was a long 5 years from diagnosis until surgery--I think that I was actually relieved when I was told that it was time.

You're lucky to have a son that's a massage therapist! I bet you do keep him busy; post op shoulder pain is very common.
I had avr four years, but like you, I had a four year wait from diagnosis until surgery. I joined VR a year before the replacement, and it truly kept me from losing my mind.

 

[gerriann]

I hope that you are doing well!

 

[CATDOG]

Hi gerriann,
Did you save any of the stats on your surgeon PK? How many AVRs does he do per year? Did you go with a mechanical or a bioprosthetic valve, and which one? Did you get a choice--did the surgeon ask you what you wanted, or did he just tell you what he likes to use? How good (really) is the cardiac unit at that hospital?

 

[Greg a]

Hi gerriann,
Did you save any of the stats on your surgeon PK? How many AVRs does he do per year? Did you go with a mechanical or a bioprosthetic valve, and which one? Did you get a choice--did the surgeon ask you what you wanted, or did he just tell you what he likes to use? How good (really) is the cardiac unit at that hospital?

you may want to PM or email gerriann as they have not been on the forum in 13 months