Valarie 's Journal

Kimberly Eisenhut  Valerie,
Good news! Who did you get in with? Please keep us posted, and wish you a great meeting with your surgeon! You may want to bring someone with and/or record your meeting. I know I tend to forget some things when I am stressed. This way, you can still be "present" when at apt., but go home and have all of the answers recorded. I had a virtual apt a few years ago with a surgeon, and I could not write his answers fast enough, much less remember everything he said. I will be recording next time.

Richard Munson  Good thought. I bring my beautiful young stenographer with me to take notes. Nancy does not like her but it works. Kidding of course. 

Kimberly Eisenhut  Oh Richard, I love your comments, makes me smile :)
Some days we just really need it! I took shorthand in high school, but was not very good at it

Robert Miller  Richard beat me to it but I was going to say exactly the same thing. Most importantly, read the learning center section of this forum. As you read it, write down your questions. When you go into the consultation, you probably will have an open discussion with the surgeon but at the end, make sure all you questions have been addressed. I also liked to leave some space (on the sheet) for each question so I can write down notes just below the question. 

Adam Pick  Woo-hoo! Great to hear! And... No need to thank me Valarie. Instead... Thank you for being part of this wonderful community!!!  By the way, which surgeon are you meeting with? 

Valarie Sullivan   I am meeting Dr Fahad Javed. He was in Brownwood, Tx but has recently joined the cardiology clinic in my town! Woohoo! No going to Houston! 
I have a notebook with all my questions (so far! lol!) with space to write answers and I am bringing my mom to help me remember. 
And I have read all the articles and watched the videos and gone on my own rabbit trails lol!

Suzette Schear  I understand.  It’s annoying. Just rest in between and do the best you can.  I also learned how to ask for help.  I think that was the hardest because my ego was bruised. But I learned.  It’s only temporary’. 

Robert Miller  When did you have surgery? And was it open heart surgery? If so, you need to watch how much you lift. And while the heart rate can be elevated after surgery, 137 is rather high. But I guess if your resting heart rate is low then it's probably ok. 

Valarie Sullivan   I haven’t had surgery yet. Just got told by the doctor it was time to start talking about it.
I did rest, though. Got everything into the house and sat down for a few hours. I’m an independent sort that likes to do things herself, and the fact I live alone doesn’t help! lol! But not to worry, when I finally get the surgery, I will be surrounded by help and not left alone for probably 2 weeks, hahahaaha!

Robert Miller  It's manageable even if you are by yourself. But it sure helps a LOT if you have someone supporting you. Be prepared. I probably mentioned it already but check out the learning center. It helps preparing for what happens after (or before) surgery. https://www.heart-valve-surgery.com/learning-center.php

Robert Miller  Before heart surgery, they check your blood type so they can keep blood available if necessary. You probably also have to sign a form if you agree to blood transfusion, if necessary. But as far as I know, in normal cases, you don't get any blood transfusion. You will be on a lung/heart machine during surgery but no transfusion. At least that's to my knwoledge.  

Marie Myers  I got one unit, but many times a transfusion is not necessary. You will be quite anemic from blood loss after surgery, which contributes to the exhaustion. Your body will make more blood cells during recovery to replace what has been lost. So nutrition is quite important for healing and replacement of lost blood cells.

Pamela Gregory  I had 2 blood transfusions after the surgery because of complications. I think my kidneys were not happy.

Valarie Sullivan   Thanks ya’ll! I guess everyone is different, lol! Have you heard of anyone “banking” their own blood? For just in case? I got specific reason for asking these questions, but it may be a sensitive subject for some. 

Susan Lynn  You can't definitively know if you may need one, but my surgery was called a bloodless procedure. Everything went as planned and I didn't receive a transfusion.

Yumiko Ishida  I looked into banking my own blood but did not do it. It makes you anemic going into the surgery, which makes your recovery worse, plus it’s expensive. I think it used to be a thing when quality control of the blood supply was questionable, but not anymore. I think I got 2 units of blood during my surgery but was still quite anemic. 

Rita Savelis  If you have time and bank your blood early enough beforehand, it's fine. I was asked to do that for another surgery years ago. It wasn't mentioned this time.

Yumiko Ishida  Rita, it’s actually discourage now. Blood has to be fresh to be viable. I think I was told within 3 days, which doesn’t give you enough time to replenish.

Susan Dunne  I had blood transfusion during my surgery Due to excessive bleeding and the fact that they had problems with the first valve they wanted to use.  I got three units of blood and have had no side effects.  I am doing great almost 8 months the post surgery.

Valarie Sullivan   Thanks, ya’ll for the input! 
I had heard a long time ago that one could freeze and store your own blood for future use, but I think Yumiko Ishida is right. These days they think fresh is best. And taking it too close to surgery date will make you too weak. 
Ah well. Back to the drawing board! Hahahhaha

Kimberly Eisenhut  Welcome Valerie! You are in the right place to ask questions and make some new heart valve friends! It can be intimidating, but finding a surgeon and the right care is important, so just keep looking and making those phone calls until you find someone you are comfortable with. I have not had my surgery yet for my Tricuspid, but I do know a thing or two about fighting to find the right care. Are you seeing a cardiologist who specializes in valves? If not, please find one (1st step). What testing have you had done so far and what are the results? These are things this community and site can help you with. Navigating the best Drs and hospitals is so helpful with this site Adam Pick has created for us. I also would suggest getting his book and asking any questions you may have, as there are always people here that are more than happy to try to answer them with kind, open hearts
https://www.heart-valve-surgery.com/free-ebooks
https://www.heart-valve-surgery.com/adam-pick-book-2016-35.php

Valerie Allen  Hi Valarie -yes, just jump in anytime. My aortic valve was stenotic but I also had an aneurysm and enlarged aortic root. My valve was judged too stenotic to have a repair, which is the first choice. So I had a replacement along with repair of the other two problems. Check the SurgeonFinder under the menu on the top right to identify surgeons who perform the type of procedure you need. Or cross-check them against your healthcare coverage. Keep asking what’s on your mind!

Rose Madura  Jump in! We all make fast friends here because we share our commonalities.  Ask questions and we will answer.  I had my OHS over 7 years ago and even though I had a myriad of complications post surgery, I'm doing great now. The doctors know what to do because they do this every day. Your story is very similar to mine.  But so choose a great surgeon who has done many surgeries on people who have your specific issues. God bless you on this journey. 

Valarie Sullivan   Thanks, ya’ll! I was feeling a bit lonely til I found this site. So much better when you find people you can relate to!

I have had echocardiograms, that test thing where they put a camera down your throat to look at the back of the heart, and twice had the catheter camera go up my vein from the groin and look inside at the valve. Sorry, can’t remember what those are called. The camera tests showed moderate stenosis, but not enough to be worried about. This was over a year ago. Then two months ago, the echo showed more stenosis. Not severe, yet, but edging up to it.

Been having dizzy spells, tire more easily and of all things, double vision. Heart related? Been researching and it’s not common, but possible. 

My current heart dr is a cardiac interventionist. I used to have a valve Dr but he is now out of my network. I quit work because I couldn’t keep up ( custodian at a large university) and have to buy my own insurance now. Get what ya pay for! Ha!

Valarie Sullivan   @Kimberly: thank you for the book suggestion! I reads his book and have practically devoured all the links associated with it! So grateful Adam Pick has put this out there!🥰

Valarie Sullivan   Hi, Valerie Allen! Nice name! Teehee! That sucks about your aorta and aneurysm. How are you doing since all the work you got done?

Susan Lynn  Welcome Valerie! You had a trans-esphogial echocardiogram (TEE) and a cardiac catheterization. So much medical jargon, it's hard to remember it all! If you had to give up your job, I suspect your regurgitation is worse under exertion. See if your cardiologist will order a cardiac stress test. You might also want to see if you're eligible for short-term or long-term disability from your university. Usually they have a comprehensive benefit package and I'm sure you'd qualify.