Just getting over my fears when

[MelissaM]

Ditto what Mary said - what would happen if you put the energy of talking yourself INTO having a condition into talking yourself OUT OF having a conditition. . .?

When my ax was missing,
My neighbor's son
Looked like a thief,
Acted like a thief,
and sounded like a thief.

When I found my ax,
My neighbor's son
Looked like any other boy.

 

[Christina L]

Pretty profound Melissa from

Pretty profound Melissa from

Boulder!! I will have to ponder the deep, deep meaning of that post! I get what you are saying, though - I need to change my attitude and look for the positive instead of the negative. There is ALWAYS a positive in every situation, if a person will just look. The inevitable happens - it is how we react to our circumstances that is the key. I'm learning. With God's help, I am learning.

P.S. Thanks Melissa - I always look to you for an interesting take on things and your honesty. You are a "wise old soul" as I have told you many times.

Christina L

 

[Harrybaby666]

Hey Christina.....

Hey Christina.....

I just want to let you know how sorry I am that you are going through this and hope that you can get it resolved as soon as you can...I have sleep apnea, and being on the cpap machine for me is truthfully a relief, as they told me that I stop breathing 82+ times an hour and my oxygen sat levels at the time of my sleep apnea test were dropping down to 40 percent. I was absolutely dragging in the afternoons, and I got to a point where I couldn't drive because I was falling asleep behind the wheel. I also have the Pulmonary Hypertension, which I have to say, has come under very good control since I have been on my CPap machine (about 2 years now), and my heart measurements have improved since then as well....Please know that your in my heart and prayers and I know the frustration your going through...I havent been on much as I have been having tons of trouble myself, but I hope it's all over and I can get back to really monitoring the posts again....Take Care, Harrybaby

 

[Christina L]

Oh Harry thank you for your post to me.

Oh Harry thank you for your post to me.

I'm sorry that you have had it rough here lately. I have been staying off the board the last few weeks for my mental health and also I was just trying so hard to stop making my heart my "life." However, sometimes I think that is going to be the case from now on. How to learn to live with all of this and do it well is why I love to talk with people on VR.com - such wonderful, uplifting people who don't let anything or anyone get them down!

Is the CPAP machine irritating? I have read that it can be. So you feel so much more rested when you wake up in the morning, huh? The pulmonary hypertension part is what still really scares me - I have kind of read that sleep apnea and pulmonary hypertension usually go together, but maybe that isn't always the case - I guess the PH is caused by the sleep apnea, right, and when the SA gets remedied, it will control the PH. What do the doctors tell you about your PH and the prognosis?

I will keep you informed on the results of the study with oxygen - the results should be known by mid next week.

Even though this is all very scary and depressing, I also have the resolve to find out what this right heart dilatation is all about (if it is really true). I need to know for my own sanity.

Thank you, Harry. You are a sweetheart.

Christina L

 

[Sherry]

Christina, I don't have much to add here other than my support. I do have to say that my uncle, who had a mitral repair a year before I did, is now on the CPAP machine, and it has helped him tremendously. I wish you well, my friend, and I agree with the others, think positively.

 

[Harrybaby666]

The CPAP can be a pain....but.....

The CPAP can be a pain....but.....

I'm sorry that you have had it rough here lately. I have been staying off the board the last few weeks for my mental health and also I was just trying so hard to stop making my heart my "life." However, sometimes I think that is going to be the case from now on. How to learn to live with all of this and do it well is why I love to talk with people on VR.com - such wonderful, uplifting people who don't let anything or anyone get them down!

Is the CPAP machine irritating? I have read that it can be. So you feel so much more rested when you wake up in the morning, huh? The pulmonary hypertension part is what still really scares me - I have kind of read that sleep apnea and pulmonary hypertension usually go together, but maybe that isn't always the case - I guess the PH is caused by the sleep apnea, right, and when the SA gets remedied, it will control the PH. What do the doctors tell you about your PH and the prognosis?

I will keep you informed on the results of the study with oxygen - the results should be known by mid next week.

Even though this is all very scary and depressing, I also have the resolve to find out what this right heart dilatation is all about (if it is really true). I need to know for my own sanity.

Thank you, Harry. You are a sweetheart.

Christina L

Once you get the straps ajusted, you should be fine. I am so used to it right now that it really doesn't bother me now, and in fact, as I have said before, that I look forward to it because it helps my breathing in general. The only other inconvenience is that the straps (headgear) really messes up the hair so I look like something out of a horror movie when I wake up in the morning (such as now..LOL)

As for feeling more rested: YES YES and More YES!!! this is the most wonderful part about the CPAP....I no longer drag and get really drowsy in the afternoons to the point where I can't drive...It's absolutely wonderful...

The PH in my case is caused by the sleep apnea and is in very good control (at my last echo I was down from 43 (Mild) to 30 (Almost Normal) and as I had previously said, my heart measurements were improved over the last echo 6 months before.

The best thing you can do for yourself is to find a Pulmonologist to handle the Sleep Apnea and the Pulmonary Hypertension-the Cardio does have some exposure to these issues, but again, he is a heart doctor and not a lung doctor.

The docs really haven't said anything about prognosis of either condition, which drives me crazy, but from what I gather from my last echo, I am not doing too badly....

Lately, I have been having more shortness of breath though, so I think I will have to be rechecked.... I hope this helps you Christina, and really, if you do have to go on CPap, after awhile, it won't bother you, and in fact, you might be like me and welcome it when you go to bed so it helps you breath....Harrybaby P.S. I wish I were there to give you a BIG Hug, and to show you that it's not too much of a pain in the neck....

 

[Christina L]

Thank you Sherry for the support.

Thank you Sherry for the support.

I think it is interesting how this is happening now that my heart is repaired and supposedly working so good!!

I have no idea yet what the PCP or the cardio thinks of the first monitor reading. Right now I/we are all speculating. So far the cardio nurse has told me that these readings are not unusual. However, if I truly have slight right heart dilatation, there has to be something going during sleep with my oxygen levels and heart rate. My cardios have ALL told me I DO NOT have pulmonary hypertension, but I know from what I have read that PH is hard to diagnose but I also read that a cardio can usually tell from other signs if a patient has it. I know I should trust them - especially my main cardio, who is a very smart doctor (I've heard this from many people).

Anyway, I will just have to pray a lot and wait and watch. Such is my life now. I just pray for strength and acceptance and for God to take away my terrible fear. Acceptance is probably the hardest. I don't like being a heart patient or ANY kind of patient. I want my "good health" back. Thanks for listening to me whine.

Harry,

Thanks for all your info on the CPAP. My cardio nurse told me that I may feel a lot better if I wear oxygen at night. That would be great, I guess. I also have read that PH and sleep apnea are related and have read some very scary things about PH. I never in a million years thought that any of this would be happening - I was anticipating maybe another mitral valve surgery in the future, but nothing like this.

Sherry,

Does your uncle have PH?

Thanks again everyone.

Christina L

 

[Nancy]

Christina-

I hear your anguish regarding a definite diagnosis. I feel that the only thing that will allay your fears is to set up an appt. with a SPECIALIST in PH. They see PH all the time, and can do what needs to be done to give you something to hang your hat on.

If the specialist says that you don't have PH, then you don't. And you can go on with your life with greater ease.

This is the only way to find out for sure if PH is there or not.

Most cardiologists don't see enough PH cases to know what they are doing. PH specialists do know what they are doing re: PH.

Here is a link:

http://www.phassociation.org/Find_A_Doctor/

 

[Christina L]

Thanks Nancy -

Thanks Nancy -

Several weeks ago I tried to call a hospital that specializes in PH in Denver and since then have been told that they won't see you unless you have a referral. I think I will find out a lot more from the second-opinion cardio I am going to see on January 4. He is in a totally different cardiology group - I saw him before - for a second opinion before my surgery was done. I feel that he may see something that the other cardios do not OR he may say absolutely not, you do not have pulmonary hypertension and here is what I think is going on....that is my prayer. I also would love to have another echo done by this cardio and will ask for that - again to confirm my right heart dilatation or to see that I don't have it at all - to put my mind at ease. I cannot possibly go through 2006 thinking and worrying about my heart possibly enlarging more and waiting for more symptoms. I would like to know what is causing this, if anything, and what can be done about it.

One thing that stuck in my mind is one of the cardios I spoke with on the phone told me that 40% of his valve patients get PH - that is a high percentage, I think. I know that most get it when they are older if it is secondary pulmonary hypertension, but I am no spring chicken.

Thanks again Nancy.

Christina L

 

[Nan]

Hi Christina,

So sorry you are having to go through all of this. But I will add my words to those of the many others who are trying to encourage you! Just take it one step at a time!

Have you had a sleep study? Not just the pulse ox and heart rate, but one in a sleep lab? If not, perhaps your primary or your cardio could refer you for one.

Sleep apnea could be causing some of your problems, and the only way to know for sure is to have that study. It is not a big deal. You just get hooked up to a lot of monitoring wires before you (try) to go to sleep for the night.

Then, if you have sleep apnea, they will try to "titrate" you with a CPAP machine to a pressure that stops the apnea events.

It does require wearing a mask with straps etc.....depends on what kind they have in the lab, and what kind your insurance will cover.

Sleep apnea can cause major desaturations in blood O2 levels as well as being one of the causes of PH, and perhaps other heart issues as well.

As you can probably tell, I (Like Harry) use a CPAP machine nightly!

Am sending you all kinds of positive thoughts.

Hope you are feeling lots better and not so nervous soon.

 

[Christina L]

Nan,

Nan,

Thank you - one step at a time is good advice. Do you really like wearing a CPAP as it helps with your energy levels? Of course, I am speculating what may happen with me. I talked with Jeanne in Dr. Cosgrove's office today (BTW they still have not read my echo tape and that is what I called for) - she said that a heart rate of 40 at night is no big deal and she said the 95 heart rate was probably from having a wild dream. Even my cardio nurse here in Colorado wasn't alarmed by the readings, BUT they all are sure interested in doing another monitor with me wearing oxygen. I suppose the next step (if needed) will be to do a sleep study.

I also had a WONDERFUL talk with my dear friend from VR.com, Betty, today on the phone. As most of you know, she is a former nurse and is so knowledgeable. She suspects sleep apnea, but also she did admit that as my heart has been repaired, it is remodeling and trying to figure out how to adjust and work right - hence, with the left ventricle now having to work harder for the first time (with the blood coming into that chamber instead of regurgitating back up into the left atrium), the right heart may be not quite ready for all that blood either. I think that is what you were saying, Betty, right? I am going to hold to that statement of yours as that is what one of my cardios here in Colorado also said - that a little enlargement after valve repair or replacement can happen and often does.

However, all that said, I have every reason to have sleep apnea - life-long snorer, severely deviated septum, enlarged turbinates, allergies to our cats, taking sleep aids and drinking wine at times before bedtime, sleeping on my back, valve problems, etc. etc. I will keep you all posted.

Mark - a lot of great ideas, as usual. You are so insightful. However, I have NOT been on the internet - at least not to look up anything regarding pulmonary hypertension. I have been reading a little on sleep apnea, but need to stop that and will. However, IF I have sleep apnea and truly do have slight right heart dilatation and I can do something about it all - that will be worth getting on the internet even though it scared the crap out of me (and I still have every word I read on the internet in my head).

Sometimes you just can't "accept" things - that may not need to be accepted, ya know? Anyway, Cleveland will be calling with their take on the echo in about 7-10 days and I see the new cardio on January 4 and will probably ask for another echo IF this cardio also tells me that there is no way I have pulmonary hypertension - just to prove to myself that the last echo measurements were wrong.

It is all very scary (for me personally) - and God is my help and refuge right now.

Thanks everyone. And thanks again Betty - you are such a special person and have such a way of putting a person at ease with your graciousness and positive attitude - God bless you.

Christina L

 

[twinmaker]

Christina, just wanted to let you know that you are in my thoughts and prayers as you go through this. I wish there was something I could do or say to make it easier for you. As I've told you before, I too worry about things (usually concerning things other than my heart). My psychiatrist said that I do that instead of openly worrying about my heart condition. And of course, the things that I worry about, I can't do anything about. I know it's a waste of time and energy. I'm always playing that "what if" game. I know that worrying is a sign to me that my faith is not as strong as it should be. I really believe that God is in control and I'm constantly trying to remember to turn things over to Him when I start to worry. I also know He understands that we are human. I think when a person has a chronic illness, as we all do here, it's hard to totally let go of our worry or thoughts concerning it. Sometimes it really does seem like "it's always something." Anyway, sorry to ramble on...just know that you have a lot of support here from people who understand where you're coming from. Praying for you tonight...LINDA

 

[susieq14]

Christina,
Just want to add my good thoughts and prayers to the others you have received. Kind of a novice to all these heart problems so can't offer you any advice or info except that I think you are doing the right thing being your own advocate and pushing for answers from the doctors. You have to do what makes you feel safe and comfortable.

I do hope that you get some answers and resolutions soooooooon.

Take Care
Sue

 

[Christina L]

Thank you Linda and Sue

Thank you Linda and Sue

for your prayers and positive words. I totally agree that my fear is a sign that my faith in God is not what it should be.

Mark, I told you I was staying off the internet - well this morning I got on it again and was scaring myself silly - don't know why I do such things. I do just want some definitive answers. Yes, yes, yes, my cardiologists have told me I do not have pulmonary hypertension, but they also did not want to pursue any testing and it is I who asked my PCP about the possibility of sleep apnea and he ordered testing. I keep replaying in my head Dr. Larson telling me that I do not have PH and Dr. Cullinane telling me this right side enlargement could be a normal variant post surgery. However....

Meanwhile, I just keep dropping to my knees in prayer. There is nothing else I can do except pray and wait and try to just live for today without worrying.

MERRY CHRISTMAS EVERYONE - AND HAPPY HANUKKAH!!! HAPPY NEW YEAR TO ALL!!

Christina L