Update on my situation

[Gnusgal]

Well, never a dull moment around here...

My husband's family is going through the wringer with this whole divorce thing (especially his brother [11] and sister [21]) (don't remember if I told this forum that my MIL's husband decided to announce he wanted a divorce the day we got back from Disney. Isn't that lovely timing?) , and I've been struggling to try and keep up with my classes while being there for them and also trying to get tests run before heading down to Houston for another opinion and also try and get some things worked out for my insurance situation... If that's a run-on sentence, it's only because my life seems to be one big run-on sentence.

Anyway, as for the tests I had run, I had a MUGA scan, 48 hour holter, and chest x-ray on Monday (just turned in the holter today), but I don't know any results yet. I'll be taking these results with me down to Houston. My card is sending me down there to get their opinion on the whole biventricular ICD situation. I've got my appt. on July 21st (next Thursday). It happens to coincide with my 10 year high school reunion, so it worked out well (I grew up in Houston).

As for the insurance situation, I talked to my old employer to find out what Cobra will cost and it will be just under $400 a month, which is better than we thought, so at least there is some relief. But it's still an awful lot to dole out when it looks like I'll also be paying the $130 or so for the other insurance... Oh, well. We'll work it out somehow if we need to.

BUT I might not have to. I had been talking to a district over the last week or so via email (well, not the whole district, just the head librarian) and he said he'd like to interview me. I was feeling a little guilty about not being honest about the situation, so I just spilled it all and told him exactly what was going on. And guess what! He still wants to interview me, and he even looked into the insurance thing at his district for me to find out if it was even worth my time to interview with him! So I'm supposed to meet with him tomorrow morning at 10 am. Now, I don't know if this interview would mean that I would be offered a job, since he's not a principal, but he might be able to put me in line with a principal and help me work through the awkwardness of the situation and get the job. But the biggest question will be (and this is assuming I get offered a position even) will the other district let me out of my contract??? Since it IS so close to the start of the school year, I am worried they won't...

But I'm not going to worry about that right now, as I don't even know if I'll be offered a job. Everyone keep your fingers crossed for me that this will work out and that my feelings of guilt over going behind the other district's back will go away!

 

[Guest]

Well, never a dull moment around here...

He he he....I think that's called the "spice of life".

Or not.



Good luck with the tests and insurance issue....

And, whatever you do, have FUN at your HS reunion .

Thoughts/prayers coming your way still....


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"I'm not the only person with these things in mind" ... Linkin Park ... 'Somewhere I Belong'

 

[Harrybaby666]

Yikes!!!!!!

Yikes!!!!!!

Hi Nikki,
I am SHOCKED!!! You reminded me that my 20th reunion is this year I guess this means I am OLD..

Anyway, my real purpose of this post is to let you know that I am routing for you as always, and hope and pray that you get the answers you need and that everything works out for you with the insurance thing. Keep On A Pluggin Nikki!! My prayers and thoughts are with you as you go through this rough time. Harry

 

[Sherry]

Oh, Niki, I am so sorry to hear about your husband's parents. What absolutely terrible timing, not that there is ever a good time, but still... Please tell him how sorry I am. Also, regarding the possible new job, we had talked about that last Thursday, and I'm not sure what kinds of licensing repercussions there could be from opting out of a contract, but I have known of people in our district who have done it. Make sure you check all that out before you make a move, but hopefully, district B can make you a better offer insurance-wise, and it will be all worth it in the long run. Take care, my friend, and have a great time at your high school reunioni. 10 years -- geez -- such a youngster.

 

[Gnusgal]

I got some results back today from my tests from Monday. My card called me to tell me that the MUGA results spoke of "tricuspid regurgitation" which was a huge concern, since the tricuspid is my mechanical valve. So she wanted me to come in and have an echo done. I had that done this afternoon, but they couldn't see any regurg at all in the echo. She had been afraid of that and had already set into motion scheduling a TEE for next week before I head down to Houston. She wants to be sure that we have ALL the information we can possibly get before I head down, so I can pay for these tests in-network instead of out of network down there.

Anyway, along with the regurg mention some other things that we went over from the MUGA were my EF in my RV and LV as compared to the last two years' MUGAs. The RV EF went from 64 (2003) to 47 (2004) to 44 (now). The LV EF went from 54 (2004) to 72 (now) (I don't remember 2003's #). The RV EF was the concern last year, and why we started working on my vasotec. It hasn't gone down too much more, which is good, but I sure would have liked for it to go up. Oh well. Guess I can't have everything. Now, it's the LV that's odd. We can't figure out why it would go up so much. My card is wondering if maybe my RV is swollen, which is putting pressure on my LV and therefore putting more pressure on the valve there. Which, she says, might explain the swelling problems I had when I was in Florida. We are hoping to find out more from the TEE.

In the mean time, she is trying to contact another doctor down in Houston and see if I can get in to see him as well. Right now I'm only scheduled to see an EP down there, but in light of these new findings she feels it would be a good idea to see one of their ACHD folks. She doesn't want me to have to make two trips (nor do I), so if I can't see him next week, we may postpone the trip altogether (though I'll still be going down for my reunion).

So when does it all end? When do I finally stop finding more things wrong and get to just have a period of "okay"? I hate to say "It's not fair" because it's so cliched, but it really isn't... I'd love to go just one year without something new cropping up. With my reunion coming up I got to thinking about what's happened to me in the last 10 years. Know what I realized? I've had 9 surgeries in the last 10 years! I've been hospitalized more times in the 10 years since high school than I was my entire 18 years living at home. And it seems to me it's all downhill from here... I'm never getting better, and I'll just keep getting worse. What a fun thought.

 

[geebee]

Niki,

I wish I had some comforting words of wisdom for you but I have to agree this news sucks. Sometimes it feels better to just shout than to try and figure out who you po'd in a previous life. An answer that is satisfying never really comes but yelling always makes me feel better (although it makes my cats jump or run & hide ).

I will pray that you can see the doctors you want to in Houston and maybe get some answers that will make you feel like you are getting somewhere. At the very least, I will pray that you enjoy your reunion.

Please let us know how we can help.

 

[PJmomrunner]

Hi Niki:

You certainly have a lot of worrisome business on your plate right now. I don't envy you.

I do have a couple questions about your MUGA. My MUGA report states end diastolic and systolic volumes for each ventricle. Wouldn't the end diastolic give an indication of whether one or the other was enlarged compared to past volumes? What is a normal RV EF? I have looked for this info but found very little, although it happens that my RV EF is 47% and I thought I had determined that to be within the normal range (and I wasn't told otherwise, but then I'm not sure I would've been ).

I hope your TEE reveals some good news for you.

Take care.

P. J.

 

[Gnusgal]

Hi Niki:

You certainly have a lot of worrisome business on your plate right now. I don't envy you.

I do have a couple questions about your MUGA. My MUGA report states end diastolic and systolic volumes for each ventricle. Wouldn't the end diastolic give an indication of whether one or the other was enlarged compared to past volumes? What is a normal RV EF? I have looked for this info but found very little, although it happens that my RV EF is 47% and I thought I had determined that to be within the normal range (and I wasn't told otherwise, but then I'm not sure I would've been ).

I hope your TEE reveals some good news for you.

Take care.

P. J.

I can't say I know all that much about interpreting MUGA results. All I know is what my results are and what my card has told me to be concerned about with those results. An RV EF of 47% IS still in the "normal" range, but what we had been worried about was the dramatic dip in one year's time, not the number itself. I would suggest talking to your card about the other stuff. I have no idea what most of it means. I'm doing very well to have remembered what I did.

Geebee,
Believe me, I've felt a bit like yelling and screaming. Unfortunately, I've found that when I get to that point it makes my chest hurt, which makes me want to scream even more... Kind of a catch 22. I appreciate your prayers, though. They seem to have worked. The ACHD doc has already said he will work me in to see him the same day that I am seeing the EP doc! At least there is something going somewhat right. And my card plans to make two CDs of the TEE: one she will overnight to the ACHD doc, and the other she will send with me just in case the overnighted one doesn't make it for some reason. I have to say that my card is doing a wonderful job of trying to keep my costs down as much as possible. That's one of the many things I love about her. I guess if I have to have so many problems, at least I have a great doc to go to bat for me.

Thanks again,

 

[WendyD]

Hi Niki,
You really have had a tough time !!! Don't feel guilty for being angry about everything. Sorry to hear that your MIL will be getting divorced, ( you just don't need anymore stress right now)
Good luck with your job interview and praying that your health issues settle down
Very best wishes
Ernie & Wendy

 

[Ross]

Niki try not to look it at like that. I know it's hard because I feel the same way, but the more I think of the downward spiral, the worse I feel about everything in general. Since it doesn't appear that we can do much about it, try to forget it and enjoy the rest.

High school reunions-Thumbs down.
I haven't been to any of mine and don't plan on going to any either. They never knew I was there when I was, no ones tried to contact me since, so crap on all of em.

 

[Gnusgal]

The interview went pretty well, I think. The only problem is that the position isn't officially available yet. The paperwork hasn't finished going through on the person who is leaving the position. So nothing can be offered until that goes through. And once that paperwork goes through, the guy I interviewed with would give my name to the principal, who would then interview me and make the final decision. So I don't know that it's going to work out. I have the TEE on Tuesday, leave for Houston on Wednesday and won't be back until Sunday or Monday. I have an orientation for my new position the Wednesday I come back. I certainly don't want to go to that and then turn around and back out of the contract. Know what I mean? I just don't think the position would be offered to me in time to get out of the contract. So it looks like I'm stuck with Cobra... Oh, well. I didn't much like eating anyway...

Niki try not to look it at like that. I know it's hard because I feel the same way, but the more I think of the downward spiral, the worse I feel about everything in general. Since it doesn't appear that we can do much about it, try to forget it and enjoy the rest.

Yes, I know. And I'm trying. Most of the time I do an okay job of it, but when stuff keeps piling on it gets a whole lot tougher. I think it may be time to actually call the counselor that my card gave me the number for. But I may wait until I have the new insurance so it's not a "pre-existing condition." That's October. I still need to get a meeting set up with them to find out exactly how things will work... Grr.

High school reunions-Thumbs down.
I haven't been to any of mine and don't plan on going to any either. They never knew I was there when I was, no ones tried to contact me since, so crap on all of em.

A friend of mine that I've stayed in touch with over the years (we were in each other's weddings, even) are planning on going together and getting together for lunch the next day to rehash. That's the part I'm looking forward to the most. We talk on the phone all the time, but I haven't seen her in well over a year. And there are a few other people that I was friends with but didn't keep up with after graduation that I'd like to see how they are doing. Of course, there are a lot that I don't care about at all (which will probably make up the majority of the people at the reunion), but at least I know I'll have one person there I like.

 

[Karlynn]

Niki, so sorry to "hear" your disappointment in your post. And we all are disappointed for you. However, we know you are a strong fighter and will find the best possible way through this.

You know that this is the place you can come to vent, whine, throw tantrums, gripe and do some figurative kicking and screaming. It's good to have a place like that, because then you can turn around and be the normal human again for those around you.

I do feel your frustration and concern. I went through a period of 5 years of declining health and feeling gawd-awful only to have the doctors tell me that they didn't have an answer yet. You go to every appointment and test just waiting for them to throw you a bone. It's very enraging at times.

Keeping you in my prayers.

 

[Gnusgal]

Well, I had my TEE this morning. I'm still feeling a tad groggy (gotta love the versed), but it seemed to go well. Apparently I threw up on myself, but I don't remember it, so it's no big deal. I had felt like I was going to throw up when I had to gargle with the throat numbing stuff (MAN that stuff is NASTY!), but I guess I managed to wait. All I remember was the nurse numbing my throat, then the next thing I knew the doctor was out of the room and the nurse was waking me up. She told me it was over and I said "Good."

The doctor came back in before I left and said that he didn't see any leakage either. He said the RV did look a bit swollen and weak, but that he couldn't give exact numbers (the MUGA scan would be better for that).

So I now have a CD of the TEE, chest X-Ray films, and holter tapes to take with me down to Houston tomorrow (my appt. is Thursday morning). I don't know if we'll have any answers at all, but it sure would be nice if we did. I'm betting I'll probably have to wait until I'm back home for them to call me and give their recommendation. We shall see...

And the thing is, even if we have someone say I need a biventricular ICD (so far this seems to be the most likely), or some other surgery (God, I hope not!), I won't really have the oportunity to do so for quite some time. School starts back up the first week of August. I'm certainly not going to start a brand new job recovering from surgery! Another possibility might be that they will re-vamp my medication combo... Of course, andything they suggest will be mostly a guess, since there's not much research on people like me to go off of...

Anyway, just thought I'd update you before going and taking a nap. Need to sleep of some more of this versed... Hope I've made sense. It's taken me MUCH longer than usual to type up this post.

 

[Phyllis]

Good news about no leakage, Niki. I hope things go well in Houston on Thursday and that you get good news and satisfying answers.
Best of luck,
Phyllis

 

[Karlynn]

Niki,
Just wanted to wish you well as you travel to Houston.

 

[Gnusgal]

Well, I'm done with my Houston doctor's appointment. And I'm not sure how to feel.

I saw both an ACHD doc and an EP doc. My card wanted them to help us decide if we should have a biventricular ICD put in, a regular ICD put in, or nothing put in. We also wanted to see if changing any of my meds might improve my RV function.

After looking everything the docs said they did not recommend either a biventricular ICD or an ICD at all. They said it was a lot of risk to put me through and they couldn't really say if it would do me any good. They said that if I were already needing surgery and they did the ICD too, that would be one thing, but to do the surgery just for the ICD would not be their recommendation. So I'm glad I'm not looking at surgery, but now it feels like I went through the ICD implant surgery (and subsequent hematoma and infection that resulted in the removal) in December was a complete waste. I hate getting conflicting information from two "experts" in their fields. (that other ACHD specialist that I'd been seeing was the one who strongly recommended getting the ICD)

As for medication, the EP thought I might talk to my EP about switching my beta blocker to sotalol from toprol to help with arrhythmias. But other than that, no medication changes were talked about (even though I asked again, just to check). They said my meds looked to be a good combo.

In the end they said I'm not doing that bad, and my RV will just keep getting worse and there's nothing they can do about it. So I feel like the trip was a complete waste.

And to top it all off, the ACHD guy had to ask if we had discussed family planning. He implied that, while it would be difficult, it was possible for me to carry my own child. But I have been down this road before. As I told him, I've been on the emotional roller coaster about this issue enough and had made the decision to not attempt pregnancy. But now that he planted that seed, it's driving me crazy. I still want to stick to my decision, but it still makes me wonder... ARG! I wish I hadn't come down here at all!!

Anyway, there's my update, such as it is. The reunion is Saturday. I'll be spending tomorrow with my mother, and meeting my brothers girlfriend in the evening. I imagine I'll also put a call in to my card and find out her take on the whole thing. As I said, I'm not sure what to think. I am glad I don't need to have more surgery, but I wish there was SOMETHING to be doing.

 

[Harrybaby666]

Hi Nikki..I am so sorry that your appointment was a wasted trip...

Hi Nikki..I am so sorry that your appointment was a wasted trip...

Just wanted to let you know how sorry I am that you are going through all this....I am curious though...Is it standard proceedure for a doctor to automatically ask about what your plans are to have a family, especially if you were not the one to bring it up? It would seem to me that this would just upset you even more given the fact that you know what your situation is prior to going to see this doc. I think that it was wrong for him to do this to you Nikki, as it's painful enough for you to have to deal with in your own heart and mind. Please keep in mind that as always I am keeping you in my prayers and I hope for nothing but the best for you. Take Care, Harrybaby

 

[Gnusgal]

Is it standard proceedure for a doctor to automatically ask about what your plans are to have a family, especially if you were not the one to bring it up? It would seem to me that this would just upset you even more given the fact that you know what your situation is prior to going to see this doc. I think that it was wrong for him to do this to you Nikki, as it's painful enough for you to have to deal with in your own heart and mind.

I was pretty mad that he brought it up. I was not there for that purpose, and I didn't see why he felt he needed to say anything. It's not like I don't have a clue about my heart, have a wonderful card already, and have a decent head on my shoulders. It wasn't really his place to say anything, and now all it does is stir up all the emotions I had thought I'd already dealt with three years ago.

Anyway, thanks very much for your kind words Harry. You're such a sweetheart, and very appreciated.

 

[Guest]

*sighs*

Aye ... sorry, Niki, for the emotional roller coaster you are on ... in several aspects . Thoughts/prayers coming your way....