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breakingwaves

Well Hello! I haven't been here for awhile, I have been in a state of denial and came back to read but just browsed and ran off. My family was all to willing to accomodate my hiding and I put the heart situation on the shelf while I went about raising my three grandchildren. Of course I functioned business as usual and stayed on my meds but found it very easy to avoid all doctors except GP.

Well- wham! Tuesday night I hadn't been feeling too good all day, could have been from grocery shopping, getting ice melt for the snow that was planning to come and ignoring that my feet and hands became double sized. I been having alot of trouble with numbness lately. I foolishly thought it was just a foot injury due to chopping ice from the previous snow. At about 11 in the evening, I went to get up from my chair after tending to everybody, my husband travels so its me, the kids, ages 10, 11 and 13 and the dog, fish and turtle.

I could feel it getting black on the sides of my head and boy did I get scared! I called my nurse friend and she came, I struggled with going to emergency room because it was going to snow any minute and everybody I knew was already in bed, so therefore the kids would be left alone, she took my blood pressure and she said it was not bad, earlier it was reading really low at the grocery store.

Next day I did go to the GP and he said the swelling didn't seem too bad, but when he got to listening to my neck, got really concerned. SAid he could hear a very pronunced delay in the blood return to my vein there. so he stopped my Altace and told me just to stay on the one HCTZ and the generic Toprol XL. He did say that he felt I had entered a critical phase and scheduled an echo for the next day.

Now I am really scared and ready to hunt down surgeons and feeling pretty bad because I didn't care for my cardio because I don't know if you will remember, but way back when he said he didn't want to send me to a surgeon until I had lost 50 lbs. I have lost 10, but not 50.

Sorry its taken this long to get to the point but today the GP's office called and the nurse said the doctor had made an appointment with the old cardiologist for 6 weeks from now and when I said but can you tell me what the echo said, she said the doctor noted no great changes since my last echo but showing symptoms. So my confusion is, now what do I do? Just wait for more symptoms, continue with the surgeon search, look for a new cardiologist, breath a sign of relief, all of the above. I have never quite felt like I did that night before, I drive two hours a day to take the kids to their school and it made me think about what if I blacked out on the road? Is this normal behavior for aortic stenosis, or am I just really confused and not too bright?
 
I think I'd find another Cardiologist for one. Given this episode just happened and warranted a trip to the ER, why is the appointment 6 weeks away? It should be tomorrow if not today! I certainly wouldn't be waiting now. I don't know how many black out, but I came near plenty of times to scare me to death. Thank God it all stopped after replacement.
 
does your cardiologist work at a second office you could get into quicker? I live in Annapolis MD and I would have to wait 6-8 weeks for an appointment here. I objected to the wait for several reasons and when they checked their other offices my cardio had appointments in 1 week in another office only a little further away. They didn't offer an appointment there I had to ask for them to even look.
 
I agree with Ross. Something that sends you to the ER is definitely not something you want to wait 6 weeks to address. If you have any more such problems, head to the ER again. Don't start 2nd guessing yourself. Friends will not mind getting awakened to come look after the grandchildren. Good friends will be mad at you for hesitating to disturb their sleep. I also recommend that you choose a friend or two and ask them in advance if they would mind if you gave them a spur of the moment call to come stay with the children. This way you feel better for not sprining it on them.

I had this type of arrangement with a few friends before my MVR when my children were small.

Even if you just casually know your next door neighbors, hopefully they are people who would be willing to look after the kids until the arrange friend can get to your house.

Best wishes and welcome back!
 
swim Mom

swim Mom

He only has one, in fact all the cardiologists in our town work out of the same office, which makes it difficult if you don't feel comfortable with yours, which was my case. I noticed that you are from Maryland, I am only a half an hour from the Maryland line so I was also looking for another cardiologist in Maryland as well as the hospital. I would be willing to go to a good one even if it is travel.

The hospital in our town is not well received for heart operations. Do you have any good suggestions? I looked at the health grades ajnd they give some recognition for Sacred Heart Hospital, are you familiar with this. It had more overall stars than John Hopkins. Any advice would be greatly appreciated!
 
Karylnn

Karylnn

Thank you for your response. I have been paralized with fear which is why I have just been like a deer in the headlights.

I have been the most stable force in my grandchildren's life and I would like to stick around to see them raised safely. I am working on the support issue for myself, which is so hard for me to ask, I am the one usually everybody else depends on.
 
breakingwaves said:
I have been the most stable force in my grandchildren's life and I would like to stick around to see them raised safely. I am working on the support issue for myself, which is so hard for me to ask, I am the one usually everybody else depends on.

And this is the biggest reason for you to take care of yourself. It's not just something you do for yourself, more importantly, taking care of yourself is the best thing you can do for your grandchildren.

It was VERY hard for me to finally admit that I needed help with my children. It was not a very ego-boosting thing to have to ask for help. But the plus side is that it allowed me to take care of myself so that my children were able to finally get a healthy Mom back. I had a hard time relinquishing my care-giver time with them, even if for an afternoon, but I had to look at the big picture. And once I was healthy again I was able to repay my wonderful friends and family by doing things for them.
 
Karlynn

Karlynn

Just being able to come here talk about it is good for me, I have a husband who is denial and so everytime I would bring it up for discussion, he would rather just tell me it was all in my head, even though he came with me to one of my cardiologist visit.

It eventually wore me down, we have been married for 30 years so he is a strong influence, even after this latest experience, he just brushed it off. He has always just been used to me doing it all, especially handling the household while he travels.

I know whatever decision I make is of my own doing, I will need to follow through for myself and probably not have alot of support from him. No close family either, so I have been pretty much an island, but I can see that it is going to shrink soon. Please know I am not feeling sorry, it was an island of my own making especially now that I primarily focus on the kids and their schedules. I will say that when I do call and ask my friends anything, they practically faint from the call, its that unusual for me to ask for anything.
 
I lived in Columbia Maryland for 15 years and saw a cardiologist at Johns Hopkins. His name is Kenneth Baughman, but I don't think he's there anymore. I know there are many very good cardiologists there though. You could call and set something up with one of them. There are many so I'm pretty sure they could get you in quicker than six weeks. It's worth a try. LINDA
 
I have a husband that likes to sail up and down the river Denial on occasion. He loves me, but when I was at my sickest it always felt like he thought I was exaggerating. But fortunately for me, he was there when I needed him most. You may be somewhat surprised at who comes through for you when you begin asking for help.

Also try to remember that asking people for help allows them the opportunity of being able to experience the satisfaction of knowing they are needed. It's a gift to help, but it's also a gift to allow people to help you. They will know that you are not the kind of person who is going to be a "taker".

I'm also sure that once you begin feeling like, with the help of others, that you don't have to go it all alone, you will feel a bit better just because you do have options and can see to your health without as much worry for who's holding down the ship.
 
twinmaker

twinmaker

Thanks for the info, I remembered when I was getting some additional educational classes at Goucher College in Towson Maryland, one of my fellow students was from John Hopkins. I had never looked up their track record for how many heart surgeries they do on a yearly basis though. I thought they were more of a research hospital, so thanks!
 
Karlynn

Karlynn

You have no idea how kind and important your words are to me, I know I need to keep working at this and maybe it will help some of the fears I have as well.

I am glad that your husband was there for you, I know that once I find my way, mine will be somewhere in the background trying to read the map I have laid out for him. He seems to need lots of breadcrumbs, to follow.
 
The Denial Thing

The Denial Thing

Don't beat yourself up over the denial thing. I suspect a lot of us have been there and done that. Personally, I managed to dodge cardiologists and doctors in general for about 27 years. Unfortunately, these things have a tendancy to catch up with folks.

There's little point in repeating the good advice others have offered here. It sounds like you like your life. The first step is to get hooked-up with a good cardiologist who can give you an accurate picture of what's going on and the information you need to make decisions. Doing this sooner rather than later will help your mindset.

They tell me the fear thing is pretty normal too. For me that's a good thing as I still encounter moments of extreme anxiety as the date for my AVR surgery quickly approches. The folks who post on this forum are an extremely supportive bunch. I've found it also helps to look to friends, family, and collegues for support as well.

-Philip
 
In my opinion, being at a research hospital is a big plus! If you type in Johns Hopkins Hospital on your search engine and go to the CardioVascular page, you will find a wealth of info about the heart surgeries and other things they do at Hopkins. If I have to ever have OHS again, I would certainly consider going to Hopkins. LINDA
 
John's Hopkins is a first rate hospital in downtown Baltimore. They are highly ranked in many specialties including cardio.

You need to take care of yourself if you expect to be able to take care of everyone else. Don't be a martyr, get the answers you need.

Best Regards,
Ruth
 
Philip B.

Philip B.

It is very easy for me to get more involved in stuff that keeps my mind occupied on something other than myself, a lesson I learned as a kid. I was raised on a farm where there was always something to do.
I have always been a workaholic , I have just switched occupations so to speak, as now full time care giver. Kids have an amazing way of keeping you busy. My parents never went to doctor's either so the medical enviroment was foreign to me. My Dad is 92, and just had his first experience with a doctor in a hospital situation. Its funny how those things sorta lead you into adulthood.

I do love taking care of the kids and sometimes I have to work at taking the time to talking to others, never was someone who could pick up the phone very often.

I have learned as I get older though that we are a village of people who come into each others lives for good reasons, and many times I have enjoyed just reading the family attitude of those that come to find and give comfort here. I haven't known how to do family well, but I am always willing to learn.

Thank you for taking the time to make me feel like less of an odd man out with wallowing in my anxiety! I appreciate your words!
 
twinmaker

twinmaker

Thanks, I will follow up with that information.
 
ruth

ruth

I am familiar with the name and I think I have even gone on site for an entirely different reason, but good information
 
Hi,
As you can tell from the responses you are not alone in pre-surgery fear. I found out about my 'heart murmur' in my late teens, then forgot about it until 13 years ago, in my early 30's, after I had my son. During the 13 years my cardiologist went from using the word 'may' to using the word 'when' in discussions about future surgery. Over the last couple of years I knew my mitral valve condition was pointing toward surgery and finally got myself mentally at a place where I could have a honest conversation (on my part) with my cardiologist about it late last year. Here I am now sitting on the post surgery side after my MV repair on 02/21, doing well. When it comes down to it, you will find you are stronger than you think you are.
 

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