Yucky News...

[Guest]

You should have been hooked up to a Holter Monitor during your scheduling nightmare and that could have sufficed as your stress test.

*chuckles*

My thoughts ... EXACTLY .


Ah, Niki ... very sorry about all this for ya. I know how frustrated you are. Thoughts/prayers coming your way, of course.

 

[EVELYN]

Hi Niki

You asked for any thoughts or advice.....well, here goes:

FIRST OF ALL, don't worry about school. As a 34 year teacher, trust me when I say that they will find a replacement for you for a week or whatever it takes to get out there and get that test done. NOTHING is as important as your health, girlfriend, wherever you decide to go. So very many times I went to school sick, or in pain or whatever......NO ONE cares.....you have the sick time, that's what it is there for.

Secondly, get on the phone right now and see if both places accept your insurance. If they don't, it will narrow it down to where you'll go. If they do, then talk with your cardio again and see who she feels is better for your situation.

Why should you struggle through all the months to spring break for heavens sake. Get there as soon as you can and get it done. The longer it goes on without an answer, the more depressed and upset you'll be.

As far as the flights and hotels, , check out what Lyn said and ask the hospitals if they have like a McDonald house does for the other family members. Just get some plan and put it into action....even if you have to do the time payment stuff.

I'm worried about you, girlfriend, and don't want you to go on and on and on with this....who knows what could happen if you put it off till Thanksgiving or even spring break.

I'm sorry if this sounds like I'm lecturing you, but that's what old teachers do best. Seriously, please do something, if only to make you feel as though you're a bit more control of this situation and your health.

Lastly, remember Nancy's motto: NEVER GIVE IN AND NEVER GIVE UP.

You're in my prayers.
Ev

 

[Nancy]

Is this the type of test they are doing?

http://www.chfpatients.com/tests/vo2.htm, This link is from the patient's point of view.

My feelings on what has happened with trying to schedule this test are that they are worried about doing this on you given your recent test results, or that the doctor was not as familiar with the test as other doctors, or they were trying to decide how to handle the results if they were not in normal ranges.

This kind of tap dancing is very unprofessional. Can you find another set of doctors who know what they are doing?

You deserve some kind of rational answer as to why they are tap dancing, even if they have to admit that they haven't a clue.

 

[Gnusgal]

FIRST OF ALL, don't worry about school. As a 34 year teacher, trust me when I say that they will find a replacement for you for a week or whatever it takes to get out there and get that test done. NOTHING is as important as your health, girlfriend, wherever you decide to go. So very many times I went to school sick, or in pain or whatever......NO ONE cares.....you have the sick time, that's what it is there for.

Actually, because I just started with this district last year, I don't have all that many sick days lined up. I try my best to resever them because of situations like 2.5 years ago where I ended up having 2 emergency surgeries (not to mention the trips to the ER) and missed WAY more days than I had reserved. Besides, my card didn't seem to feel concerned about waiting until Thanksgiving. That may change after the stress test, but I doubt it. I am not in a dangerous situation yet. We just don't want me to get there...

Secondly, get on the phone right now and see if both places accept your insurance. If they don't, it will narrow it down to where you'll go. If they do, then talk with your cardio again and see who she feels is better for your situation.

I actually looked up both docs (as well as the Mayo Clinic, but I didn't know what hospital the Philly guy is actually working out of) online last night and according to my insurance's web site they are considered in-network. I've been burned by relying on the web site before, so I do intend to confirm that this week.

Why should you struggle through all the months to spring break for heavens sake. Get there as soon as you can and get it done. The longer it goes on without an answer, the more depressed and upset you'll be.

I know that prolonging this is going to just worry me (not to mention my husband). That's why I had considered Thanksgiving, rather than Spring Break. I don't think that either of these docs is really going to find a solution to my problem (increasing RV disfunction), but my card seems to want to get them involved in a more personal way that they have been.

As far as the flights and hotels, , check out what Lyn said and ask the hospitals if they have like a McDonald house does for the other family members. Just get some plan and put it into action....even if you have to do the time payment stuff.

I will look into it. Though we may make more money than would qualify for help. From what I've read, though, the Mayo has a place for patients and their families to say. I'm going to look into that.

I'm worried about you, girlfriend, and don't want you to go on and on and on with this....who knows what could happen if you put it off till Thanksgiving or even spring break.

The thing is, I don't really FEEL much different than last year, so it's hard to get too worried (which doesn't mean I'm not worried). Because of my particular defects, it's inevitable that my RV is going to continue to get worse. It's just a matter of how long they can hold it off before opting for transplant. From what Dr. Phillips has told me, with CHD it's less a matter of the numbers from the tests and more a matter of judging quality of life... I can still work full time, I can do most of the things I need to do around the house (forget vacuuming!), and in general my quality of life is okay. I dread the day I can't do these things, but at the same time, the sooner it comes the sooner I can have a new chance at life (transplant). Don't get me wrong, I am terrified of the idea of waiting for a doner, but the thought of having a healthy heart sure is appealing.

I'm sorry if this sounds like I'm lecturing you, but that's what old teachers do best. Seriously, please do something, if only to make you feel as though you're a bit more control of this situation and your health.

No worries. I appreciate it. I will be working on this, I just hate that I have to. It's so much easier to be in denial...

Lastly, remember Nancy's motto: NEVER GIVE IN AND NEVER GIVE UP.

Words to live by!

You're in my prayers.

Thank you.

 

[Gnusgal]

Is this the type of test they are doing?

http://www.chfpatients.com/tests/vo2.htm, This link is from the patient's point of view.

Yes, it is. I've had this test several times, which is why I didn't think it should be so difficult to schedule. It's interesting to read the numbers that qualify as "bad." I've been below that number for years and years. (18 in 2002 and 17 in 2004. I'm told <14 is the number they look for with transplant.)

My feelings on what has happened with trying to schedule this test are that they are worried about doing this on you given your recent test results, or that the doctor was not as familiar with the test as other doctors, or they were trying to decide how to handle the results if they were not in normal ranges.

This kind of tap dancing is very unprofessional. Can you find another set of doctors who know what they are doing?

I will NOT be going through my EP for this kind of thing ever again. I may even be getting a new EP if things don't get better. As it is, a different doc (one my card likes a lot) will actually be running the test. As my card said, if she'd known my EP wouldn't be doing it, she would have set up the test herself. If that had happened, I would already be done with this test and we'd have some data to work with... Live and learn. I agree that the EP office is being very unprofessional and I've told them as much on several occasions. Supposedly they're going to set up for me to see the EP doc the same day, and if I do I'm going to give him a piece of my mind. This situation has been absolutely rediculous. When my card heard about it she was furious.

You deserve some kind of rational answer as to why they are tap dancing, even if they have to admit that they haven't a clue.

As time went on, that is exactly the impression I got. They kept saying it was a matter of talking to the EP doc, and then the story became "we don't know how to schedule that particular test" and I realized I was dealing with idiots. But at that point I had less than a week left before going back to work and didn't really have time to find a new doc too (my card was out of town last week). Believe me, I will NOT be treated like this again from the EP office. If I ever get the "I'll call you right back" again and don't, I will be looking for a new EP.

Thanks for your support. I really appreciate it.

 

[Gnusgal]

You should have been hooked up to a Holter Monitor during your scheduling nightmare and that could have sufficed as your stress test.

Karlynn and Cort, I completely agree and told my card exactly that. She agreed as well.

 

[Nancy]

I think this is the test they were going to schedule for Joe. There is only one hospital locally that does it. I guess it really is a special test using a special lab and equipment.

We switched cards, pulms and hospitals recently, so cancelled that test. It may have to be scheduled in the future. He has serious, serious breathing problems related to some lung fibrosis.

I think he had the test several years ago, and the pulm said he "failed miserably", couldn't even do it.

You deserve the best, not some clunker that is just guessing his way through things.

 

[Gnusgal]

You deserve the best, not some clunker that is just guessing his way through things.

Which is why I'm kinda glad they scheduled me with a different doc. According to my card, the guy that's going to do it is "great." She had wanted my EP to do it because she wanted someone who dealt with rhythm issues to be present. This other guy doesn't, but she says "You'll get a really good test" with this guy. I'd rather have someone who knows what he's doing than my EP who seems to have no clue.

I never would have thought this test was so specialized. As I said, I've had it done several times, and through multiple hospitals. I even had one at Dr. Phillips' office. I guess maybe the office manager was telling the truth. But I sure wish they'd said something sooner!

 

[catwoman]

Niki:

I know I'm echoing what everyone else has said, but ... I do think you've got a team of good doctors. (If only the office staff could get their act together! but that's true with so many medical practices today)

I'll keep watching for your posts about developments.

 

[Gnusgal]

And the saga continues...

And the saga continues...

Okay, so this morning I got a phone call from my card's office. Her office staff member asked me when I went back to work, then said she was going to take care of things for me. Not two minutes later I get a phone call from my EP's office manager. She tells me that the only day that the doc they want me to use can do the test is Friday at 10. Well, considering I had told her I go back to work on Friday and I'll be in workshops all day long, I told her it wasn't possible. She tried to talk me into it anyway, and I said no way. At that point I tell her to cancel that appt. and that my card's office said they were working on it. She said she would call my card's office and find out what's going on. Less than five minutes later, I got a phone call from my card's office asking if I can get in to do the test at noon today. I said yes without hesitation.

It amazes me that after 2 weeks my EP's office couldn't get anything scheduled, but after 5 minutes of working on it, my card's office gets me scheduled. One more reason to love my card and her office staff!

 

[RossGurlie]

All I can say...

All I can say...

Okay, so I'm kinda confused with all the shortening of the words...like EF and MUGGA...yeah I have no idea what those are...BUT I have had 3 treadmill stress tests. I've had 3 different kinds. One was a perfusion stress test, one was to see something with my oxygen levels...maybe you'll have that, you have to wear this mask thing...and I've had one regular. Tell me what you get...if you have one. They kinda suck, but you'll live...

 

[RossGurlie]

Just kidding...

Just kidding...

Okay, so I guess you already know what kind you're having....I've had it before. Yeah....so tell me how it goes!

 

[Lynlw]

I actually looked up both docs (as well as the Mayo Clinic, but I didn't know what hospital the Philly guy is actually working out of) online last night and according to my insurance's web site they are considered in-network. I've been burned by relying on the web site before, so I do intend to confirm that this week.

Webb is at the phila adult chd clinic so works at CHOP and I believe U of penn that is right next door



I will look into it. Though we may make more money than would qualify for help. From what I've read, though, the Mayo has a place for patients and their families to say. I'm going to look into that.

I have a few links for the airline orgs, i can find them for you if you would like I don't think most of them take income into it,

I think a couple of people on the ltga group go to webb and are pretty happy w/ him
Lyn

 

[Sagebrush]

mayo

mayo

Hey Niki,
I have talked to you before but not for a while. Sorry to hear of all your troubles. I recommend the Mayo. If you decide to go there and see Dr. Warnes(my Dr. too ) they will do a stress test on you and a whole day of fun tests so you might as well cancel this other test. Heck Dr. WArnes might even cancel it because she might know the results. She cancel the first treadmill test on me because I didn't even do stairs without huffing and puffing, but now that I am doing better I can't talk her out of that fun test.

I am on Blue Cross/Blue Shield and the Mayo is in network and if you have ppo through bc/bs Mayo is on it. If you have another insurance go to their web site and find out if Mayo is a provider. I am certain they are cause Mayo is non-profit unlike other hospitals who want to soak you for all you got.

PM me if you have more questions. I wouldn't go anywhere else because my insurance pays them just like they would pay someone in my town and my theory is if they pay for the Mayo why would I go anywhere else. They have the best doctors there especially for congenital defects.

Good Luck,

 

[Gnusgal]

Some good news!

Some good news!

I finally have some good news to report! First of all, I did the stress test today at noon (it's good to have that over with). I don't know the full results yet, as it hasn't been interpreted, but I did find out what my mVO2 was: 17.4!!!! Plus, I felt like I did better on this stress test than my last one (2 years ago, mVO2 of 17.2). I realize that that number is still in the "bad" region, but I'm just so relieved it hasn't gone down, and is still above 14.

My card will call me when she talks over the results with the interpreting doc. Hopefully I'll know something in the next day or so.

I know that my card is still talking about sending me to Webb or Warnes, but at least it looks like the situation isn't as dire as we were fearing.

Thanks everyone for your continued support!

 

[Gnusgal]

Webb is at the phila adult chd clinic so works at CHOP and I believe U of penn that is right next door

I have a few links for the airline orgs, i can find them for you if you would like I don't think most of them take income into it,

I think a couple of people on the ltga group go to webb and are pretty happy w/ him
Lyn

Thanks for the info, Lyn. I'd love those links if you can find them. I don't know when I might be going, but I'm sure it's inevitable that it will happen at some point.

I'll also have to post to L-TGA and see what people have to say about Webb. Thanks for reminding me about that.

 

[Nancy]

Niki-

You are a trooper. I'm happy the test is over and it didn't show further deterioration. I'll be waiting to hear what your docs have to say.

 

[EVELYN]

Hi Niki

So glad to read your post tonight. I'm glad you were able to get that test done. I absolutely put you in my prayers this morning on the Long Island Expressway.....(I always pray on my way to work in jail.) Glad, too that your drs. are in your program. Please let us know what your card says about the results.....I'm still thinking about you !!!

Evelyn

 

[Guest]

Karlynn and Cort, I completely agree and told my card exactly that. She agreed as well.

Heh ... agreeing doesn't get the test done . He heh.

As for the scheduling fiasco ... wow ... just speechless..... I strongly dislike it when a doctor's office will try to talk you into something you've already told them is not possible.... Best not get me started ... heh.

Very glad the stress test is done! Thoughts/prayers continue coming your way, of course. Have to have you healthy for my trip to TX in October .



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
"Time is a natural healer" ... John Conlee ... 'Years After You'

 

[Gnusgal]

Heh ... agreeing doesn't get the test done . He heh.

Ah... But SHE did get it done. It was the other office that didn't.

Now that I've finally had it done, I'm sure that my EP's office manager is relieved not to hear my annoyed voice 3 times a day. I've got to say, I'm relieved to not have to call any more!