I'm feeling scared

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Laura R

Well-known member
Joined
Sep 1, 2008
Messages
60
Location
California
Hi. My name is Laura.
I'm facing mitral valve replacement surgery and I'm scared. Im hoping you can help.
My medical history is that they tell me I must have had rheumatic fever as a child which I don't remember. I live in northern California and three years ago, Dr. Alan Yeung at Stanford Hospital did a valvuloplasty to open my narrowing mitral valve. But my most recent echocardiogram on 8/15 showed that it's getting worse and I'll probably need valve replacement. I'm going to have another echocradiogram on October 21st to confirm.
After the 8/15 echo, Dr. Yeung added Lasix to my usual Toprol, flecainide, coumadin and vasotec, but I had bad reactions to it, got a throbbing headache and dizziness, and a dark purple circular bruise on my arm that hasn't cleared up. He said I could stop the Lasix on 9/2, and then I felt much better. On 9/11 my INR was 3.9, much higher than my usual 2-2.3. I was told not to take coumadin this past Friday, and my dosage was lowered. I'll be going back for my next INR check in two weeks rather than 4.
So, that is my basic story medically. I joined this group and have been reading your wonderful informative and supportive posts. For some reason, I can't seem to get emails from this site, so I just come back and check regularly.
I'm writing now because I woke up in the middle of the night feeling a bit off balance, kind of dizzy more on the right side of my head, and I got worried that it might be a brain bleed. I called my cardiologist and his answering service woke him up, which I mention because now I have one more worry, that I don't want to be seen as a patient who calls and wakes him up for nothing. He told me that a brain bleed would have much worse symptoms.

I feel frightened. I've been trying to feel more in control by educating myself but it doesn't seem to help with the growing fear. I don't want the fear to grow to the point where every little thing has me worried. Did others feel like this? What can I do? I just feel like crying.
Thanks.
Laura
 
Thanks for answering so fast

Thanks for answering so fast

Hi Jim. Thanks for answering right away. That alone is reassuring.
I feel so silly being this frightened. I feel like, if I'm this scared before I even have a date for surgery, how am I going to be over the next several months.
Anyway, thanks!
Laura
 
Welcome Aboard Laura!

Your fears are perfectly normal. We ALL had them.
Fortunately, or unfortunately, most report that the 'waiting' is the Worst Part of the whole Valve Replacement Surgery experience.

Several members have reported reaching a 'sense of calm' as they come to accept their fate and begin to look forward to Life after OHS with a new and better heart.

Keep reading about others experiences in the Pre-Surgery and Post-Surgery Forums.

You may want to start thinking about Valve Choice. Start with the "stickys" at the top of the Valve Selection Forum Listing. After you understand the differences between Mechanical and Tissue Valves, you may want to start interviewing Surgeons. Dr. Craig Miller at Stanford is a well known Aortic Specialist. I'm not sure about his MV skills but a call to his office could answer that question. Or he might give you the names of other Surgeons who specialize in MV surgery.

Remember, Knowledge is Power.

Good Luck on your journey and please feel free to ask any Questions as they come to mind.

'AL Capshaw'
 
Laura, hopefully the more you read here and the better informed you become, you will feel more confident and empowered in the decisions that will need to be made in the near future. We are here and happy to help. Everyone has been this scared and there are many success stories to inspire your confidence.
 
Laura, I only found this site one week ago and the decrease in the anxiety level is amazing. I thank God for the people on this site who answer to quickly and kindly.
 
Welcome Laura. It's only nature to be scared. For what it's worth, now that I've been through it, I can honestly say that it wasn't nearly as bad as I had feared. Best wishes and good luck.
 
Hi Laura and welcome. Everyone was scared. Wayne is right, not as bad as I feared either. I have to admit, I was lucky, I did not have time to think about it. I went in through ER and had an AVR. You will have a lot of time to do research. Just ask any questions, somone will answer. Good luck to you.
 
Wow, I can't believe how many people answered. Thank you all for your kind words and encouragement!
I'm pretty sure I'm going to get a mechanical valve. It sounds like the St. Jude's is the tried and true one, but the On-X seems pretty good and won't require (as much) coumadin, and that might be good so I don't have to worry about brain bleeds in the middle of the night! The surgeon that Dr. Yeung said he's going to send me to is Dr. Craig Miller, and I figured I'd ask him what he suggests and why. Am I right about those two valves?
I've been cutting and pasting a lot of the ideas I've gotten here, but I haven't researched doctors.
It all feels so overwhelming.
Laura
 
From what I've read here, Craig Miller is one of the TOP Heart Surgeons on the West Coast, if not in the country. Do a 'Search' (see blue line at the top of the page) for "Craig Miller" and you will find links to posts where he is mentioned by others on VR.com

As an Engineer, I am highly impressed with the technological advancements offered by the On-X Valve. It is my first choice for a future MVR, with the St. Jude Masters Series as my Backup Plan 'just in case' there is some reason the On-X cannot be used.

See www.heartvalvechoice.com, www.onxvalves.com, and www.sjm.com for more information on those valves.
 
Hi Laura, i havn't been through the surgery myself, my ten year old son as. He had surgery at the end of july and now its like it never even happened, he is doing so well. He hasn't had the mechanial yet but will be sometime in the future. It is natural to be afraid and i was terified before both of my sons surgerys. As strange as it sounds it can be more scarey waiting for a date and the operation. Sometimes getting a date can be a bit of a releive. The build up can be very stressfull and then once the surgery is over, you can get on with making a good recovery. Wishing you all the best.
 
Thanks for the info and links, Al. I'll be checking them out. I feel better knowing that Dr. Miller is so well respected.
Laura
 
Hi Laura....

Very happy you found us but sorry for the reason.

All of us who have had OHS know that fear and worry. You are behaving in a very normal manner and I'd worry were you not scared. The wait truly is the worst part.
I am just over 6 months from mitral valve replacement (bovine) and that was my second OHS in four years. The wonderful, knowledgable people on this site were wonderful in educating and helping me through the process of 'getting over the mountain' as we call having our surgeries. I don't know where or how I would have learned all I learned here were it not for this site.

Ask all your questions. There is sure to be someone who will be able to help.

You can and you will get through this!
 
Here's the info page from Standford's website
http://www.stanfordhospital.com/search/physiciandetail?doc=627 (which also has his picture)
(found by Google Search ...note there are a LOT of Dr. Craig Millers!)

D. Craig Miller, MD
Professor

Make an Appointment

Clinic: Cardiothoracic Surgery
300 Pasteur Dr
A265 MC 5319
Stanford, CA 94305
(650) 725-3826


Fax: (650) 725-3846


Physician Referrals: (800) 756-5000


Office: Cardiothoracic Surgery
300 Pasteur Dr CVRB MC 5407
Stanford, CA 94305
(650) 725-3826


Specialties: Cardiothoracic Surgery


Sub-Specialties: Aortic Aneurysm
Valve Repair and Replacement
Marfan Syndrome


Professional Education:

Stanford University School of Medicine, Stanford, CA, 1972


Residency: SUMC - Graduate Medical Education, Stanford, CA, 1975
SUMC - Graduate Medical Education, Stanford, CA, 1977


Board Certification:

Vascular SurgeryThoracic Surgery, American Board of Thoracic Surgery

Years on Staff: 30 (Note: Experience Counts!)
 
Hi Laura really glad you found us...sorry for the reason
Scared is normal without this fear we'd have nothing to
worry about!!!!
I had surgery 16 years ago and 2nd round coming up
real quick for me,will have word on Tuesday and as busy as
iv'e kept myself....it's not working for me at all.The tears roll
I go to work on call this weekend so can't fully occupy self
at work till i get a call,but you know i've narrowed it down to
the waiting,thats very difficult on me and i mean tuesdays
definate phone call isnot far...Still it's the wait because i just
wanna get it over with,and been done this road once already
so i know what to expect the scared of the (unknown) 16 years
ago is my scared of the known now and i,ve developed this
extra 16 years of age...so that scares me,alot of things scare
me and why? Because we sit and think about the unknown,things
in our mind at least i have and i've narrowed it down to the wait
not only me but my family and their wait for this to be over with.
It's very normal to be scared and thats where this site is sooooo
valuable along with my family,my prayers i can do this.I'm glad you
joined theres always someone to put an arm out and give you a cyber
hug or a quick answer as you said,even if it,s not the answer yet,the
response times all we need (fast) it works.Looking forward to your
posts here and questions.I'm still :)ing so whats bugging me is the
wait.

zipper2 (DEB)
 
Hi and welcome to the zoo:D ... a wonderful place for information and support ... we are not a replacement for medical professionals but there is much you can learn here ... You will hear this many times and it is true, or was in my case " it is not nearly as bad as you are thinking " ... fear is normal ... we will help you walk through it.......
 
Your feelings are normal. I was very scared and had lots of anxiety. The wonderful people on this site helped me every step of the way.

I had AVR almost 7 months ago and I was 66 at the time of my surgery. I'm doing as well as any 67 year old can.:D
 
Hi Laura
I would like to wish you a warm welcome to this wonderful and supportive site. As others have mentioned, it is completely normal to be frightened when you get 'the news'. When I was informed this past spring of the changes in my echo and discussion on "imminent" surgery, I remember trying to stay awake for a number of nights for fear that I "would not wake" up if I went to sleep. A week later I scheduled a second appt. with my cardiologist hoping that he would relieve some of my anxiety. You have taken a positive step, you are gleaning as much information as you can, arming yourself with knowledge and seeking the support of others. I, too believe that the waiting is probably the hardest part. I will keep you in my prayers and wish you nothing but the best outcome.
Wanda
 
HI Laura and welcome to this wonderful site. I see that one of your medications is flecainide. Do you suffer from a.fib, and has this medication helped ?

Best wishes.
 

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