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Christina..
I am sorry that you are going through all of these confusing symptoms right now.
I really have no advice/ or wisdom for you as I am only 6wks out and am still dealing with pericardio effusion..
but I can say I understand the nervousness..and uncertainty.. that is what I try to supress daily, and focus on the positives.. like GeeBee said.. each day is a gift..and really truly All of us VR and Not..only have today:)

I wanted to congratulate you on the upcoming adoption!!! that is very very exciting!
You are a special person who has a heart for a child out there waiting for a home.. Bless you and your husband for wanting to love and provide for an unwated child..
YOU will be a Wonderful Mother:) and for whatever time God allows..you will bless that childs life!!( and grandchildren, and great grandchildren)

NONE of us know how much time we have.. so keep your eyes on the positive.. and that babe that will be coming your way soon!!
I do hope you get some answers and some peace of mind soon.. the guessing game can be quite stressful.
Hugs to you.
 
Hey Christina! First let me say that you are not a whiner. You are simply telling us (your friends) what is going on with you. If you didn't tell us then how are we to know and possibly help? I have had some CHF since my mitral valve replacement almost 25 years ago. I take Lasix and Aldactone every day. Sometimes, it's a little worse than others and at those times, my diuretics are adjusted accordingly. I certainly can understand you worrying about the future and about the adoption plans, but please continue to pursue your plans unless a doctor forbids it. My husband and I raised three very active children. After my first OHS (a repair), I couldn't wait to get pregnant. We were blessed with a daughter and twin sons. They were 5 and 3 when I had my valve replacement. We've never met face to face, but after reading your posts over the past year that I've been a member here, I know you to be a sensitive, caring, genuine person and definitely MOM material. I understand you being worried about the future...I struggle with that also. None of us know what tomorrow holds, so we just have to go day to day. I do believe that God has already chosen a child for you to care for and love. I will pray that your tests have a good outcome and that God will lift your worry. Please keep us posted. We care. LINDA
 
Hi Christina-

CHF is indeed manageable with several medications and a low sodium diet and careful monitoring by you and your cardiologist. Joe has lived for a long, long time with it.

Please don't self medicate with your thyroid medication. It is a powerful medication and if it builds up in your system, that alone could cause heart problems and other medical problems. BIG no-no!

I actually know a man who passed away from thyroid medication overdose, and the increases were done by his doctor, for goodness sake. He developed heart problems, and this particular doc didn't recognize it, kept upping his dose 'cause the man felt so bad. That doctor has passed on also.

Get in to see a good endocrinologist and let him test you periodically and dose accordingly.

I also have borderline hypothyroid and take a very small dose which keeps me on the good side of the border.
 
Hi Christine,
I had CHF prior to my VR. My heart enlargement prior to my VR didn't completely go away. I'm fairly certain that while I don't deal with aspects of CHF now, I will most likely have to handle it in the future. But that is tomorrow and today is where I'm at.

It sure sounds like your thyroid issues may be the key to what you're dealing with now. Are you on medication for it? I agree with Nancy, get a good endocrinologist. My cardio always tests my thyroid function every time I go in (which is every six months). So far, so good.

Thinking of your my friend.
 
CONGRATULATIONS Christina !

You followed through on your suspicions and got a diagnosis (actually several). That is GOOD NEWS.

The even BETTER NEWS is that all of those conditions are treatable. Just continue to follow through and find the appropriate Doctors to manage each of those contributors to your health issues.

I'm glad to see that Nancy chimed in. Remember, her husband Joe was told he wouldn't live past 50 and he is now in his 70's providing clear evidence that CHF (and a laundry list of additional heart and lung issues) are indeed managable!

I believe that getting your Sleep Apnia and Thyroid function under control will give you a much improved Quality of Life. Stick with the program and let us know how you are doing!

Best Wishes from the Sunny South,

'AL Capshaw'
 
Christina,

I'm not much help on this subject, but please know that you are loved by all of us and the Man Upstairs. :) :) :)

Wayne's a good man - you listen to him (tell him I said so :D ). I expect to be in your area later this year or next summer. Would love to see you again.
 
Hey Chris -

Remember that medicine is an inexact science. Really & truly. Your doctors often have to make educated guesses, surmise at correlations, and piece together fuzzy information. Sometimes they are right, sometimes they aren't. Sometimes correlation = causation, sometimes it doesn't.

Take it everything into consideration and try to see the big picture. Some of these test results are only a small part of the big picture. As others have said, the best metric for your condition is how you feel,. Use that as your biggest test, and let the other tests support or negate that position.

Take care,
Melissa
 
Christina. Good job being your own best detective. Now be your own best friend and go through with the adoption papers and get that bundle of joy delivered to your heart. It will mend everything!! You will be amazed. Do not be afraid of the joy she will bring. Do not be afraid for her; you will improve her life enormously by welcoming her into yours. You and Wayne have so much desire and love to give. All will be well. Time to grow your faith in yourself. You'll see!!

Good luck and keep us up to date. Lotsa people care about you here! :D

Marguerite
 
Christina,

Wow! I can't say it any better than Marguerite has! I second what she said.

Just wanted to add a thought about semantics: "heart failure" is a very ominous-sounding term. But as many as testified, it is in many cases a manageable and treatable condition. I don't mean to minimize the seriousness, but we can let ourselves be thrown for a loop by medical semantics or we can be strong. I'm betting on you being strong.
 
Hey Christina :)

I am so glad you decided to post! I think you know Nathan's story of heart enlargement/cardiomegaly by now, so I can't offer you anything new there. He will have his 10 month post surgery echo in less than a month now, and we will see if anything has changed. I need to start brushing up on his pre-op measurements, and what good potential outcomes will be so I will understand more what will be coming our way with results. I know his cardio at the Mayo feels his heart enlargement is very concerning due to his family history of his Dad's heart transplant. I think this must be very rare however, as I can't think of another member here who has a first degree relative that has had a heart transplant (could be wrong big time...don't check all posts). I wish I could offer more info, maybe I will in July. Please please keep us posted. I will say again how excited I am you are persuing your adoption! How exciting!!! You will be a great Mommy :)

Ann
 
Thank you, thank you

Thank you, thank you

everyone for your kind encouraging posts. You have no idea how much it means to me to read these posts. Maybe I am getting way ahead of myself with the heart enlargement thing, but I know that before my surgery no one said anything about right heart enlargement. When I got a second opinion after the echo last November, another cardio in the group told me that I had always had upper limits of normal size of my chambers. My main cardiologist made a statement in a letter that my left atrial size hadn't changed appreciably since my surgery (even though I think it has - gone from 4.2 to 3.6 (3.6 is the average upper limits of normal left atrial size) - isn't that a big jump?) - but he said something in this letter to another doctor that he was concerned about how big my atria (left and right) were in relation to the rest of my heart. Now I have dug up that can of worms and been diagnosed with hypothyroidism and sleep apnea - so all the pieces do fit together - is it a coincidence? I certainly hope so.

Yaps you say you are in heart failure - was this diagnosed before or after your surgery? I am beginning to think that I waited too long to have my surgery - it was not purposeful - I just let my cardio care go by the wayside all through my 30s and then in my early 40s had the chest pain and started being watched. Why does your husband have heart failure - blocked arteries or does he have valve disease also? I am concerned as you say that you have sleep apnea also. I think that is what is concerning my cardio - and that is why he wants me to get the BNP blood test. I hope Yaps that the doctors will get medications regulated for you that will fix you up so you will have a better quality of life - you seem to be such a positive person to me and I enjoy your posts on VR.com a lot.

Nancy - I am up to 60 mg of Armour Thyroid and will go no further with it until I find a good endo who can watch over me. I know there is a doctor in Denver who is supposed to be a wonderful physician when it comes to hypothyroidism so I hope to get an appointment with him. I was started on 15 mg of Armour Thyroid by my family physician - he was wary of starting me on a higher dose because of my heart - I know what too much thyroid can do to a heart as well as too little thyroid hormone - it s a delicate balancing act.

I want you all to know your comments about us adopting and me being a good mommy - well they made me cry - in a good way AND I want you all to know that we went to our adoption agency's (CCAI) annual picnic in Denver today to talk with other adoptive parents and see the beautiful (TRULY) little Chinese girls - there were dozens of them - if not hundreds and every one of them was adorable. I was thinking of not going to the picnic as I didn't want to get my hopes up and be so sad if we decide not to adopt because of my health, but all of your encouragement pushed me to Denver today. :) AND while we were there I was having such a wonderful joyous time watching the little adopted Chinese gals dance, etc., that I felt great and didn't even think of my heart - all I could think about was "our" little girl. We bought a stuffed panda bear for her room and some books on adoption - one called "The Lost Daughters of China" which is supposed to be an excellent book explaining the economical reasons that mothers and fathers give up their little girls in China, etc. It is big business now in China - to adopt out these children - it brings millions of dollars into their country every year. :( The one thing I couldn't bring myself to buy was the children's books - they had a table full of them - that is one of the things I am looking forward to the most - reading books to Emma. Next year, God willing, Wayne and I and Emma will be at the picnic together and believe me, we will purchase so many books.... :eek:

Anyway, I will keep you all posted. I cannot get in to see my new cardiologist for three more weeks but I see the pulmonologist next week. I hope he can reassure me in some way. I am pretty much a wreck again - trying to stay positive and all of you have helped in that regard tremendously.

Well, off to walk the dog - it is a beautiful night and Wayne and I are going out for a stroll.

Tom - send me a PM when you get close to visiting Estes Park and we will round up Melissa and head out for coffee again. We are having a gorgeous warm summer here in Estes, although the mountains do need rain.

P.S. Regarding my oxygen sats in the mountains versus lower elevations - my average oxygen sat at night here in the mountains at 7800 feet is 89-90% and down at 4800 feet it was 93-94% (during my sleep study). I do wear oxygen at night now, but am unsure what the doc will prescribe for my sleep apnea.

Christina L
 
I'm so glad you went to the picnic. You are right, children do take your mind off your own troubles and that is a really good thing. Christina, I have a feeling if your heart and my heart were in a "beauty contest" yours would win the competition hands down. I have no doubts that you will have more than enough heart energy to be a terrific mommy. If my damaged heart could do it, I know that yours can because what it takes, more than physical wellness, is the desire to be a great mom and you have that.

And as far as books - "The Runaway Bunny" was one we read almost daily, and I literally couldnot get through it without tearing up. It's a story about a mommy bunny that would go to the ends of the earth to find her little runaway baby bunny and do whatever she had to to find the bunny. That's one of the ways I derived the courage needed to be a mommy with a heart that is a little less than perfect.

Wow, it makes me tear up just to think of you going to China to bring your little bunny home. May God bless your journey.
 
Christina L said:
My husband tells me the same things - that not a one of us (even heart-healthy people) is guaranteed tomorrow, BUT my problem is not the fear of death, but the fear of suffering and not being able to plan for a long future.

*raises eyebrows as eyes pop wide open*

Yowsers. Christina, I think you nailed something which is partly at issue with me now. Things are not so good for me at the moment ... on many levels ... and I think that "fear of suffering and not being able to plan for a long future" is something that my mind has thought about ... subconsciously.

Luckily, I haven't gone back to my "evil twin" days ;). Still ... concern about the future (on various levels) is a deep-routed concern for me. Yet, I remind myself that we cannot plan for a long future ... because we never know what the future will bring. Heh...ironically, this is one of the reasons why I strongly dislike it when people keep telling you to "save save save" your money for the future and/or a "rainy day" ... you never know if they will come or not.

At any rate, don't apologize for whining or complaining. Not needed. We've all been there, I'm sure, whether we publicly post/admit it or not....and, yeah, that includes me ... more than I'd care to admit ;).

Thoughts/prayers coming your way....



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Enough is enough, I can't take anymore" ... Alabama ... 'Can't Keep A Good Man Down'
 
Karlynn and Cort -

Karlynn and Cort -

Karlynn - you are too funny - do you think either of our hearts would even be allowed to ENTER a "beauty" contest?! Hee. I think our tickers would both tie for Miss Personality or something. ;)

Children's books are so wonderful. They had many at the picnic today that were in regards to being adopted - one for a mommy and daughter being adopted from China - that made me get weepy. I'm sure you read the book Goodnight Moon to your kids when they were small. I just love that book - it is small and so simple to read, but try reading it without yawning and getting sleepy yourself. I will have to get the book about the mother rabbit - it sounds precious. You will SOON be reading books to a grandchild - how great will THAT be?? I'm so excited for you. Another great book is Where the Wild Things Are by Maurice Sendak.

Cort - I'm sorry to hear that you are going through a rough patch right now. You are another person that just amazes me - you have lived enough life for all of us here at VR.com - you just know how to live period - you are such a great guy. I hope that you and I will both get our acts together and go on to savor each day and not to worry too much about our futures. If we take one day at a time and deal with each "problem" as it comes and face it head-on, we should be fine, right?

Thanks everyone for your caring - you are great allies to have.

Christina L
 
Goodnight Moon and The Runaway Bunny are by the same author! Margaret Wise Brown

Now I'm just waiting for Ross to chime in and offer to be the judge of the swim suit portion of the beauty contest.
 
Christina, my thoughts are with you as you are going through this period of uncertainty. Please continue to be your own health care advocate as we all should be. Just last week, I called my new cardio's office, told the nurse of our BP conversation on this forum, and asked (or demanded :rolleyes: ) that I be put on BP meds. She called back in a half hour and said I could pick up the Altace samples whenever I could get to the office. I refuse to be as passive as some of my older relatives who have passed on. I know that's how you are too, and I admire you for that.
 
""""Yaps you say you are in heart failure - was this diagnosed before or after your surgery? I am beginning to think that I waited too long to have my surgery - it was not purposeful - I just let my cardio care go by the wayside all through my 30s and then in my early 40s had the chest pain and started being watched. Why does your husband have heart failure - blocked arteries or does he have valve disease also? I am concerned as you say that you have sleep apnea also. I think that is what is concerning my cardio - and that is why he wants me to get the BNP blood test. I hope Yaps that the doctors will get medications regulated for you that will fix you up so you will have a better quality of life - you seem to be such a positive person to me and I enjoy your posts on VR.com a lot."""
To answer... My chf is valve related.. had severe ph caused by valve, its not reshaping.. and boy do I swell ..lol..call me a fathead..:p
John has chf from pulmonary hypertension , enlarged heart, he is also on a c-pap, but with John it stems from the diet drug redux, similar to phen-fen, doc had given him this in 1997, right before recall. He has been fairly stable for almost a year, echos havent shown any increase in pulm pressures, so with meds he is ok.
I use a c-pap, but mine is for hypopnea, shallow breathing.. my o2's would drop to the 60's...
I take a lot of lasix daily and still they send me in hospital and drain me..lol vampires I tell you, vampires..:p
I think its an indiviual thing, John hasnt gotten worse,but no improvement either.. mine just wont reshape..to much damage to chambers from regurgitation prior to surgery.. some cards are simply played that way.
And with the arteriosclerosis ..well ..just call me a heavy blocker :p could even be a football player??:p (block:p )
I hope you feel better soon, and its good to catch this as early as possible.
love the pup
 
Yaps -

Yaps -

I didn't supposedly have PH before my surgery or after - and they are telling me I don't have it now - only my cardio told me recently that I do have pH during my spells of apnea (also another cardiologist told me that everyone who lives up here at altitude has some degree of PH - not a great thing to hear by a heart patient). My oxygen up here at 7800 feet got down as low as 83% just one time during the night but my sats stayed consistent at around 89-90% (50% of the night - the rest of the time I was around 91-92% I believe). I only show trivial tricuspid regurgitation now on my echo (last November - before I had mild tricuspid regurg) and my valve repair is holding well.

However, what I wonder is if my mitral valve repair is too tight - they put a ring around my mitral orifice and I wonder if it is now slightly stenotic. My cardios poo-poo that idea (of course they do) - they tell me I have had a perfect repair. I have read that mitral stenosis can cause PH and right heart enlargement.

However, again, I pray I am speaking prematurely about all of this and that I don't have CHF and my sleep apnea is something I have had for a long time and didn't know it - as I have always snored off and on and I remember so many days at work in my 20s and 30s where I was exhausted and would come home at night and fall asleep in the rocking chair while watching TV. I don't do that any more - not tired at night like I used to be.

Also, I was/am under the impression that we all have CHF to a degree who have heart valve disease - some just have compensated CHF. Am I wrong about this?

I hope to obtain a new echo on seeing this new cardiologist in three weeks - or have a TEE scheduled - I have not had a TEE since before my surgery.

As for my hypothyroidism causing all of this, one cardio told me I was on a slide to becoming hypothyroid for probably many years and my surgery kicked me over into it full-blown. It is mild hypo, though, as is the sleep apnea. I am trying very hard to lose some belly weight and also to walk every day. Karlynn is very lucky to have a cardio who has watched this aspect of her health very closely. Where do you people find such great cardios??? I am on a quest to find "mine" though and hopefully I will.

Karlynn - no swimsuit competition please!! Don't encourage Ross! ;)

Christina L
 
Sherry -

Sherry -

I have been taking my blood pressures here at home three times a day and they have been back to what they always used to be -- in the 110s/low 70s - it is an automatic cuff and I am wondering if I am not taking my pressures right. However, I am really glad to see the readings - I truly think what I have is "white coat" hypertension. My diastolic was high in the office and the diastolic is the pressure when your heart is resting - I am a nervous wreck when I go into the doc's office.

Does the Altace make you tired? I am so glad you got some medication - it truly will help your heart to work more efficiently and not put a strain on it. As I said before my grandmother lived very "healthfully" to 95 years of age and she had had HBP for probably 30 years - she took her medication faithfully - she did not exercise though - rarely if ever walked for exercise - but she ate well and had such low stress (living in a small town in Iowa). I just think that stress is the biggest culprit in all of our health woes - not how we eat or how much we exercise. It is definitely all about attitude and faith in God.

And Melissa - hello!!! - how are you and what have you found out about your systolic HBP?? Let us all know. I would send you a PM and ask you, but I know that many on the board want to know how you are also.

Christina L
 
I can almost guarantee you that your sleep apnea preceded the right heart enlargement. When you understand the full ramifications of OSA, then you'll realize that it indeed is a killer. Not sure what the stats are today, but about 12 years ago, the survival rate after 5 years for untreated OSA was only 40%. Your SpO2 levels (that should remain around 95% all night) dip down into the 60s or even below, starving ALL YOUR ORGANS for needed oxygen. In addition - you never achieve restorative sleep OR REM sleep and this will eventually drive people insane.

The good news is that OSA is treatable right from the first night on CPAP. A totally remarkable treatment for a condition that wasn't even known to exist 40 years ago, until Dr. Colin Sullivan (from Australia) discovered it and invented the very first, albeit crude, CPAP.

GET THYSELF UNDER TREATMENT LIKE NOW!
 
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