Chest Pains and Arm Numbness Scared!

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L

Lisa45

Hi,
I am 45 years old and just been newly dx. with Aortic heart
valve problem this. It is moderate regergitation and I have gone to one
cardiologist and he said I will need to have a non stress test and a heart cath.

I also have pulmonary fibrosis (either UIP or IPF) and I am in the process of getting worked up for a double lung transplant through Baylor Medical downtown Dallas.

I was on Phen Phen for almost 2 years straight a few years ago. I was trying to
get in touch with others that are going through the same type situation as I find I need someone to talk to that can relate to this feeling of not being in control and it is scary! We have one living child 22 who goes to school at Texas. Tech. She is a blessing and a delight but she is 6 hours away and she has her own life to live as it should be.
Thanks a lot for listening and feel free to email me directly.
 
Welcome, Lisa, to a wonderful web site, filled with people who understand heart valve problems. About a year ago, I was finding it progressively harder to breathe, even though I followed by GPs prescriptions to the letter. It took a while to find the real problem, and get a St. Jude valve put in. Now, I find it difficult to believe the difference in the way I feel.
I don't know anything about the lung problems you mention, or the phen phen; perhaps someone else does.
Have you had an echocardiogram?
 
Hi Lisa-

Welcome to this terrific site. I'm so sorry you're going through these problems. But you have found a very helpful site for your valve type problems. Everyone here understands what it's all about. And we'll be happy to help you through whatever you are facing.

My husband is the patient here. He's had 3 valve surgeries, 2 lung surgeries, has a pacemaker and has had tons of other medical problems. He's 71 years of age and still here and doing OK.

I hope we see you here often. Please feel free to post any questions you might have. We have lots of members with a variety of heart valve problems and there are a couple with lung problems as well. You'll get lots of answers.

Take care
 
Hello Lisa,

Yes, a Heart Catheterization (sounds much more scary that it is...no big deal really...I've lost count of how many I've had) and an Echogram (or Transesophagael Echogram which is even better) will tell your cardiologist exactly what is going on with your Valves. These tests are very SAFE when performed at a hospital that does them routinely. I've never experienced any pain with any of them and I've had LOTS of tests!

I strongly recommend getting tested ASAP. It is far better to determine the condition of your valves and get them repaired or replaced BEFORE any irreversible damage is done to your heart.
As you expect, this is MAJOR surgery, but the surgeons have it down of a fine art with very high success rates. Everyone here on VR.com has either survived valve surgery or has a family member who has. There are thousands upon thousands of survivors leading healthy and productive lives. GO FOR IT !

'AL'
 
Lisa - It is great to have you with us. There is a large body of knowledge here and seems like everyone is willing to share. Let us know about the cath and ask valve questions as much as you like. I don't know a thing about double lung transplant, but it sounds serious and I wish you good luck and hope it goes well. I have a daughter age 24 (very independant) and she was with me (all the way to Cleveland) when I had my valve surgery in 2001. I think your daughter will want to support you through this difficult time. Don't hesitate to ask for her help. Also, don't be afraid of being scared, it happens to all of us going through these major surgeries.
 
Lisa

Lisa

Welcome to this site. I have a little to tell you about myself. I was born with congetial heart murmur, a leak in the aortic valve. When I was eight years old, had a repair on this valve. About 28 years later, exceeding the 15 year guarantee, I had the valve replaced with a St, Jude's valve. I am doing so much more better now than I was when it was time for surgery. I know nothing about lung surgery, but I wish you luck in getting better soon. Come in anytime when you have questions. We are here for you. Take care.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve
 
Hi, I had nothing like the problems you are having, just needed a valve job for a congenital problem. But we have one friend who drops in now and again who has had a heart transplant...don't remember if her lungs were involved or not. Perhaps she will see your post or someone else will remember her name and send you her way. Mainly wanted you to know, that we are a group with a lot of power and support for you. Join us if you like.
 
Jessica B has had the heart transplant.

Mimidoe (Ticktock) has 5 valves, one in an apico conduit on the outside of her heart (man made).

So we've got it all, no artificial hearts yet.
 
DEAR LISA ,hi im chris im 47 i had a arotic valve replaced two yrs ago and i have know one to talk to about it i have a 23 a 15 and a 13 and the 23 has her own life too .i had a heart murmur when i was born and the dr said it took this long to develop into something he said if my parents had taken me to a dr it would have been provented and i became angry at my parents anyway i was terrifed i cant even talk about the fear i had i stoped watching trama life in the er i saw one and it was one that they weere repairing or replaceing a arotic valve of all things lol......... anyway i still have numbess in my left arm sometime sthe dr said it was nothing perhaps a nerve damage when the operation occured .and many times when i walk my left side of my chest hurts its like when you go out and its really cold it hurts that way do you know what that is should i take it serious thanks for listening and you will be in my prayers i want to tell you when i came out of the or i was still under anstheic the nurse said she cant hear you but you know what i heard everything my mother said i was scarming inside mom i hear you i just cant speak
 
Welcome Persian Lady

Welcome Persian Lady

Is it Chris..so glad you found this site. Whenever you feel like a chat..don't be shy..Post under Post-surgery..Like if you wonder if anyone else has a pain, ect. We will answer..How long since your valvereplacement? It has been 5 1/2 months for me but I am still sore at times, like walking the dog on a leash, ect...What type of valve do you have? Come on line anytime. :) :) Bonnie
 
Hi Persian Lady-

You've found a wonderful website. Everyone here understands what valve surgery is all about and we are all very supportive before surgery and afterwards. You are among friends.

I urge you to use this site to its best advantage. If you go to the top of the page, you will see a big logo with yellow letters. Click on that and it will take you to the main page which has a personal stories section. Try and read through some of these. It will give you comfort to know that you are not alone and that others have walked the path you find yourself on. It will also serve as a very informative tool in the understanding of the condition you have. As you read more and more about your problem, you will find that your fears will diminish to a great degree. Open your mind for information and it will help you in coping.

My husband is the patient here and has had 3 valve surgeries, plus a ton of other difficult medical problems. He had rheumatic fever as a teen. He's 71 years old now and still going and doing.

So keep in mind that this surgery is a life saving event and is something which should be celebrated. Without this surgery, heart valve patients would not be here.

I wish you all the best and hope to see you here often.
 
Hi,
I was jsut wondering did your heart problems cause the lung problems or is it all connected. I also livein Texas near Houston actually.
How did they find out about your lung problems? I'm just curious and I ask a lot of questions. I guess us Texans are talkers so to speak!

C-YA
Sonya
 
Hi Sonya-

I'm not sure who you wanted to answer this question. There are a couple of people on this thread with lung problems. Hopefully they'll all answer. And maybe a couple of others who have lung problems will answer also.

My husband has had two lung surgeries. One for a benign tumor which became symptomatic. He had a partial pneumonectomy. It was an amyloidoma, not related to his heart. The second one was for a "trapped lung" pleural peel, causing his lung to partially collapse. Unknown etiology. That required a decortication. He also had secondary pulmonary hypertension, related to his heart condition.
 
DEAR DAVE thanks for sending me a reply when i was born i had a heart murmur it wasnt bad so yrs past and then at 45 i began to have a dull ache in my left kidney and found out i had stones then i got a infection and was in the hospital for 10 days my blood count went down to 3 i never found out why so my urglistwho was very compassionate said lets send you over to find out if you have some vegitation growth near your heart sometimes that causes infections in the body ,so i went to get a echocardiogram and the tech said to me oh my gosh ! you arotic valve is so narrow a small pencil would not go through it i was in shock i couldnt belive it i went there because of my kidneys and if it wasnt for that uroglist i would have dropped dead anything well after that i still hada infection that took mths to get rid of and was i sick my gosh it was worse than the heart surgery.lol..the heart dr said the minute the infection clears up call me and we will admit you into the hospital and do the open heart surgery it took 2 mths finally i was so scared like a big baby and that tube down the throat to help you breathe is terrible i started to throw up with the tube down me and the nurse said chris the tube with get it i hated it anyway this is the first time i have talked about it with anyone that can relate i get numbness in my left arm i think that is from nerve damage do you know about that ? i think so much emotion i still feel is that normal its been two yrs i cant even go to the dentist now and my teeth are in need of repair im so firghted iwent one time and they shot me 7 times with meds to kill the pain but i hyerventlated and did not go back the ironic thing is the dentist her husband was my heart dr and she was going to call him in to give me something to calme me down i said oh my gosh this is getting scary so i left anyway bye chris
 
Chris,
My wife is a dental hygienist -- so what, I still don't like dentists! She cleaned my teeth Monday, and I go back for the dentist to repair something tomorrow.
You may feel that you have strong emotional reactions to these things, but there is only so much the body can take. I have given six gallons of blood in the past twenty years in Michigan -- I used to enjoy watching the nurse stick the needle in to start me giving my pint -- but after a few days in the hospital getting stuck with needles everywhere, I couldn't watch anymore, and I dreaded the nurse walking in first thing in the morning, needle in hand.
Please feel free to talk about all your concerns here; we don't mind listening at all; most of us share many of them.
 

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