A newbie being confused (what else is new)

[Gina Priore]

Hi everyone my name is gina and as you will soon see a big newbie. So new that my surgery is just going to happen this thursday nov.17th. I wish i would have found this place sooner but at least i have found you guys now problem is i just dont know what to ask. I am posting in this area because almost 4 years ago i was diaginosed with lupus, r a and a host of other auto immunes and thats when i found out i had aortic valve stenosis with calcification.all the docs i had seemed to think it was caused by one or the other until i met my surgeon 2 weeks ago dr. Gleason the director of the aortic valve diseases of the unni. Of pittsburgh. After my feet had swelled to the size of cantelopes and the swelling went to my knees my cardio said it was time. It had worsened last november in a matter of 2 weeks when my gyne who i had only seen one other time couldnt believe how bad my murmur had gotten. I was in california taking care of my parents and due to matters beyond my control was forced to move back to pittsburgh. But blessings come in many disguises as i was and still am on disability but medi-cal in calif. Is the worst medical system i have ever seen. I dont believe i would have gotten the medical care i am getting today had i stayed out there. I might not be writing this right now.

But what my surgeon has told me, what i can remember is i have a normal flow 50 to 60 . The ventrical has mild thickening my arteries are normal. I am reading off notes a friend took so i hope you all understand it. I was born with only 3 flaps and 2 of them have calcified and closed. Making sense so far? Good. He said i will be in the hospital 5 to 7 days maybe rehab considering i live alone but will find out more in the hospital. Home health care will happen also and i will have to give up my water bed for awhile in place of a hospital bed. Yes a old hippie i am 56 years old so please answer any questions i dont know how to or what to ask. I just wish i had found my newest family sooner

peace and love gina

 

[Duffey]

Hi, Gina.
I think you're doing real well for someone who has been given such short notice on upcoming replacement.:smile2:
You might ask the surgeon what his recommendation is for valve type--either mechanical or nonmechanical (tissue). He should explain the pros and cons of each, but you should have the final decision.
I'm glad you're swapping your water bed for something else. The thought of a water bed post-op makes me cringe. :eek2:You really do have limited arm/chest movement for a bit, so it can be a bit of a hassle getting in and out of bed. If you have a recliner, it will become your best buddy for awhile.
Best wishes and keep those questions coming!:smile2:
Mary

 

[hensylee]

the main think is that you did find VR and welcome to our place. we are glad to have you among us. The members are really good with information and support. Don't be shy about asking whatever you want to know and somebody here will be along to give you answers. You will be in our thoughts this Thursday as you climb the mountain to the good side. Blessins..........

 

[Greg a]

Hi everyone my name is gina and as you will soon see a big newbie. So new that my surgery is just going to happen this thursday nov.17th. I wish i would have found this place sooner but at least i have found you guys now problem is i just dont know what to ask. I am posting in this area because almost 4 years ago i was diaginosed with lupus, r a and a host of other auto immunes and thats when i found out i had aortic valve stenosis with calcification.all the docs i had seemed to think it was caused by one or the other until i met my surgeon 2 weeks ago dr. Gleason the director of the aortic valve diseases of the unni. Of pittsburgh. After my feet had swelled to the size of cantelopes and the swelling went to my knees my cardio said it was time. It had worsened last november in a matter of 2 weeks when my gyne who i had only seen one other time couldnt believe how bad my murmur had gotten. I was in california taking care of my parents and due to matters beyond my control was forced to move back to pittsburgh. But blessings come in many disguises as i was and still am on disability but medi-cal in calif. Is the worst medical system i have ever seen. I dont believe i would have gotten the medical care i am getting today had i stayed out there. I might not be writing this right now.

But what my surgeon has told me, what i can remember is i have a normal flow 50 to 60 . The ventrical has mild thickening my arteries are normal. I am reading off notes a friend took so i hope you all understand it. I was born with only 3 flaps and 2 of them have calcified and closed. Making sense so far? Good. He said i will be in the hospital 5 to 7 days maybe rehab considering i live alone but will find out more in the hospital. Home health care will happen also and i will have to give up my water bed for awhile in place of a hospital bed. Yes a old hippie i am 56 years old so please answer any questions i dont know how to or what to ask. I just wish i had found my newest family sooner

peace and love gina

Gina WELCOME TO OUR VR FAMILY OF BROTHERS AND SISTERS IN OHS we are all here to support you and will be on the 17th as you are on the family calendar

Godspeed Gina

 

[Bina]

Hi Gina and welcome !
Your heart situation sounds alot like mine did.....auto immune problems, stenosis, calcification, BAV, and yet the
ejection fraction of the heart remained in the 50-60 range which is not bad, but suddenly the heart just can't keep
up anymore. Mine was replaced when I was 46.
Peace and Love back atcha.

 

[CATDOG]

Hey Gina,
My story is similar as well. Lupus diagnosed 4 yrs ago (probably had it a lot longer) and found out about aortic stenosis a month or so later. I've just met with one surgeon as all the docs are now saying time to get it done. So I guess it will be my turn in a few months too. Be sure to ask enough about valve-type options and the docs' opinions about the best choice if they were you--considering your other problems and current meds. If you have had any issues with blood clots, kidney problems, endocarditis, etc. those issues might affect their advice. Hopefully you will have enough time to figure out what you are comfortable with. Good Luck and keep us posted.
Cat

 

[normofthenorth]

Welcome to "the family", Gina! FWIW, the normal (majority) Aortic Valve has 3 flaps or cusps, but ~1-2% of us is born with two of them fused together = "bicuspid", or BAV. Those BAVs tend to deteriorate more quickly than the more common TRIcuspid ones, and they deteriorate by calcium formation (NOT related to high dietary calcium intake). There's lots of techie info here and elsewhere online if you're interested.

For now, you should probably be focusing on participating in the choice of a valve type (or maybe even a brand or a model) for yourself. The big choices are mechanical or tissue, with sub-choices in each category. Lots of discussion here and elsewhere, with some marketing and lots of studies and Heart Association guidelines and such thrown in. In simplest terms, mech gives you a good chance of avoiding a re-op, tissue gives you a good chance of avoiding Warfarin/Coumadin (anti-coagulant pills, and monitoring). The younger you are, on average, the sooner a tissue valve can be expected to deteriorate and need re-replacement.

Good luck! Either kind of new valve will work way better than what you've got now, so there's no "wrong answer" other than denial and hiding.

 

[Mentu]

Hi, Gina, and welcome to our VR community. As you can see from the responses, there are others with similar problems who are doing well now. Bina is an old hand.

I would say first that you are likely to feel much better after the AVR. I was 59 two years ago when my aortic valve was replaced and I also live alone...Oh, and I have a waterbed. My biggest concern for recovery was that I would be unable to care for myself after surgery so I asked a friend to come stay with me for a few days. As it turned out, Gina, my anxiety was unnecessary. It was nice having my friend here while I was in the hospital (four and a half days) and for a couple days afterwords. My first day home, I didn't do much except walk in my neighborhood and let my friend pamper me. Second day home, I fixed breakfast as he is what one might charitably call an indifferent cook. By the time he left three days later, I felt quite comfortable by myself. There was never any need for home health although if you have concerns that might be a good idea. Recovery is mostly taking it slow and easy, eating, sleeping, and then beginning to do chores around the house. My waterbed is not one of those that slosh around so I had no great difficulty getting in and out of bed other than doing it without using the arms for support. You will probably be surprised at how well things go.

By the way, it is almost always difficult if not impossible for doctors to tell us "What started this?" because the process of valve calcification is not well understood. In this also you are not alone. Often there may be an underlying genetic component that increases one's likelihood of developing stenosis. My Mother's Father two of her brothers had the same problem. Don't spend much time worrying about how it started. Your goal now should be doing the things you need to do before surgery and beginning to plan your recovery. Surgery takes a few hours and doesn't really involve you, however, your recovery is in your hands and will take several months. Do the things you need to do, Gina, and let go of the rest.

As for questions, there is a list of questions in the Presurgery forum "Sticky: Pre-surgery consultation - list of questions" you can look at and you can always ask about other issues here. Valve choice is a much discussed topic but you really can't make a final decision until you discuss it with your surgeon to see if there are special considerations that would suggest a particular type of valve. You might also discuss with the surgeon the type of surface closure to be used. My doctor used no stitches or staples and I never had a problem with the incision site which healed very neatly. In your case, you might want to ask about any special issues that need to be considered because of your other problems and how those might effect your recovery.

For most of us, the need for heart surgery is the most serious health problem we have encountered. That was certainly true for me. Preparing can lead to a lot of unnecessary anxiety and much of that is probably unavoidable. Still, take some time to think about the better future that surgery opens to you. Let us know how we can help, Gina.

Larry
Tulsa, OK

 

[njean]

Hello Gina and welcome to the forum!

Glad that you ran into us even if it is short notice. That said, hopefully by our mere presence, support and acknowlegement, you will face your new challenge head on with renewed awareness and hope of what OHS (open heart surgery) has to offer you.

As others have adviced, ask your surgeon what type of valve is the best choice for you and then take it from there.

Wishing you all the best with your upcoming surgery!
Godspeed!

 

[piglet]

Hi Gina,
Glad you found us, better late than never. Sounds like you have a lot on your plate. I have RA also and had my aortic valve replaced with a tissue valve last April due to endocarditis. This is a great site and the people here give wonderful support and great advice. I can't add a whole lot to the great advice you've already gotten, but I did want to chime in and say WELCOME. I would keep a note pad with you to jot down questions that you have and take it with you to all your appointments. Try to take a notes when you are talking to the surgeon. Getting rid of the water bed is a good plan, I don't think I'd want to be trying to get out of one of them after surgery, the less effort the better. I had a hard enough time with mine when I was healthy.
I'll be thinking of you on Thursday and sending healing vibes your way.

 

[Bina]

It appears that Gina's surgery is still on for Thursday Nov. 17th....sending good vibes and best wishes !!
Let us know how you are doing as soon as you are able.

 

[Ovie]

Going through older posts, anybody know how Gina's surgery ended up going? Hopefully well but this felt like a ghost post, being new here, does this happen often? People come and go without answers? :/

 

[Lynlw]

Going through older posts, anybody know how Gina's surgery ended up going? Hopefully well but this felt like a ghost post, being new here, does this happen often? People come and go without answers? :/

Gina hasnt logged in since the 14th. Yes it is pretty common for people to only post once or twice and dissapear. Sometimes they might do a couple posts during recovery then slowly dissapear when they feel better.

 

[SB42]

Let's send her a private message (should go to her email) and find out how she is doing and encourage her to send an update?