Good news; bad news; good news

Well, it's certainly been an up & down day for me.  I think I'll start with the good news first. Saw Dr. Mo today.  He was VERY pleased with my progress, even though I WASN'T!  I've lost 13 lbs since I saw him last in Dec.  Sure seems like it should have been more, but he remained optimistic cuz a loss is a loss...I guess.    So I got a small tweak to my band & he sent me packing for another month.  Don'tcha know I can hear all of ya'lls voices in my head.  Annie, loss is slower for you banders;  learn to be patient;  Rome wasn't built in a day;  you're working out now so you're building muscle & muscle weighs more than fat.  I KNOW all that stuff, gang...I JUST WANNA BE SKINNY & HEALTHY NOWWWWWW!!!!  I want it!   I want it!  I WANT IT!!!   Ok, tantrum over. More good news...you all have heard me talk about Dennis, our horse trainer that owns the farm we live at on the weekends.  Well, he called me this morning to say that his daughter, Brandi, FINALLY had her baby & boy did she get a surprise.  Throughout her pg, she was told, via ultrasound, that she was having another girl.  WRONG!!!!  She spit out a boy!!  A big bruiser too.  So now the poor lad has no name & no clothes!!!  And now I have to make another blanket...this one in blue! Ok, so here comes the crappy news.  I'm very lucky that my "team" consists of Dr. Mo, my surgeon, as well as my cardiologist & family practice docs & they keep each other in the loop beautifully.  So while I was with Dr. Mo today he mentioned that he got the results of my latest echocardiogram that I did last week.  It's not good news, kids.  Among other things, an echo measures what's called an ejection fraction, aka, EF.  That is a percentage measurement of the amount of oxygenated blood that leaves the heart to go out to the rest of the body.  A normal EF is around 68.  Back in June, when I had my last one just prior to my surgery, my EF was at 25%.  That, in it's self, is NOT a good number.  Well, the latest is that it has dropped down to 20%.  Needless to say I'm not a happy camper.  While I appear to be making light of it right now, when I found out I ran the gammit of emotions.  Fear, concern, anger, just to name a few.  I have so many questions & my cardio won't be available until I can get an appt to see him.  I'm pissed that he didn't bother to CALL me with such news, but rather sent a LETTER.  Oh & I forgot to mention that in the letter he also tells me there's an indication that I have a small hole in my heart which could allow small blood clots to go through.  So if the reduction in heart mobility isn't bad enough, I could have a blood clot stroke me out & KILL ME!!! I was told, back in 1990 when all this started, that I would need a transplant within 5 years.  Well, it's been 18 years & I still have original equipment.  Now, however, I GUESS I'm gonna have to start looking at getting on the donor recipient list.  I say guess because MY FREAKING DOCTOR DOESN'T THINK IT IMPORTANT ENOUGH TO TELL ME STUFF TO MY FACE!!  I cannot express how upset I am by all this.  I am NOT ready to die yet.  I have waaaaay too much to do first.  I'm leary about transplants because I've done research on it AND I have a close friend with the same disease I have that has had his transplant & his quality of life SUCKS!!  He's sick all the time. He has no energy to do much of anything.  He's only a year older than me & has had to take early retirement from his job cuz he can't do it anymore  (he's a pencil pushing desk jockey).  I am soooo not ready for this.  I have horses to ride, workouts to do, grandchildren yet to be born, sons yet to marry.  I NEED to grow old with my beloved Michael.  There are people yet unknown that are meant to cross my path & me cross theirs.  I feel like I'm split down the middle...one side of my brain says F it!  Just do what you can do & the other side is weepy & scared & fearful of dying too soon.  I watched my bestfriend die a slow death & I'm not sure who it was harder on, her or us that had to watch it. So like I said...it's been a weird day for sure.  Don't worry my darlings...this B ain't goin' out without a fight!!!         

Well first off congrat's on the weight loss...It may not be as much as you'd hoped but it's not a gain...smile :) Second congrat's to Brandi, what a wonderful surprise! Third...Im not sure what kind of insurance coverage you have but I can tell you that I have in the past ran into the same issues with tri care. I know that it wont make the news any better for you BUT I would do my very best at getting ahold of a pateint rep or someone high up on the food chain and make it known that your results good or bad dont need to be sent via a letter when it is something that is urgent ( It's sad that we have to tell them this but sometimes we have to ) I would also demand a fast date to be seen, instead of waiting. There are way's around these thing's and AT THE VERY LEAST, if you plan to continue using these doctors, you wont have to worry about bad news or good news arriving to you slowly...right! I hope all turns out wonderful~ Brandi~

Dang it I dig you and I figure it like this you got some goodness left in you and so lets get focusing on the positives and arm yourself with knowledge. Personally, I'd DEMAND an appointment ASAP with your cardio doc and while you're at it lay his arse out about a thing or 2 like HEY you COULD call somebody! Who said ANYTHING about dying woman? You're still here aren't ya? Soooooooooooooo???  You've lost weight since Dec which is great. Its gonna take time and all the things you put above and I'm gonna add one for "splits and giggy's." Its like this....a garden's gotta start some place. Its start with a seed planted with TLC and nutured and watered. Then comes the rain, the winds, the storms as this thing is trying to sprout. It grows then along comes a bird and chomps at it but the flower still stands. Then more rain and wind and even some flooding and bugs trying to eat its petals yet through adversity it continues to prosper. Ok so its not a GREAT word picture but my point is you're gonna get bombed from time to time but from the crap comes a beautiful rose. (I suck at this LMAO!!!)  Congrats on the surprise baby boy!  I'm gonna hug you to pieces tomorrow!

Oh WOW Congrats on the weightloss my dear Anne , and boy I do get a big hug tom. too Im sorry about all these other things going on. But I agree I would be  jerking a  tight a** knot up in that DR a** and ask him who does he think he is dealing with. Show him you mean buisness an you will whoop him silly, heart condition or not. Now that you have dusted off and  kicked him around the DR's office a lil he knows yourserious w/ who he is messin w/ get you a second opinion and or a new DR who isnt afraid of you. I wish you all the best and prayers going up for you my friend. But  think about a different DR, maybe this one needs a new profession, sounds like he is not into  the caring of our dear friend here. And we wont have that. It would not be a pretty sight the OH group showing up at his practice .  Hugs to you..... 

Oh...Anne....... Ok...let's start with the positive stuff....great job on the weightloss.  A loss is a loss.  I know..this from the person who whined that it was taking too long when I consistenly lost every week.  It's hard...I completely understand. Now...for the other issue.  How aweful that he did not contact you.  I would be very upset, too.  But, niow that you know that this is going on, you can deal with it, both mentally and physically. Take a deep breath and try hard to be positve. Sending hugs your way......

Ann, Well at least you had SOME good news yesterday and the weight loss is off and not on - what is your total to date? I bet much more off..... Not that this is any comfort  to you, but I have a brother who needs a heart transplant (in the UK) and has needed it for 10 years but drugs are keeping him going and he is still working. He is now 44 yeard old and survived 5 heart attacks and now has a damaged heart at 20% capacity too - maybe with the drugs it is now slightly higher but not much. He does not have the same issues as you but has been ill since his first heart bypass at 29 years old - and like you he refuses to give into it as much as he can and is still working.  Seriously I would be looking at another cardiologist - he is not meeting your needs nor seems to care! Get a better one. See you tomorrow! Jackie

Wow, congrats on your weight loss!!!!  Sounds to me like you are doing a great job.  I can understand your desire to have it done now, patience woman.  I am glad that Dr. Mo keeps you informed on things.  As for that cardiologist, I too think maybe a new dr. is in order.  You are right, you have a lot to do here still.  Gather that information, get on the path to healing and remember we are with you every step of the way.  I love you!!!!!!!!!

Dear Ann, I know you are disheartened by the slow weight loss, but you have already stated the obvious reasons why, so no need to go there, just know that it WILL happen! As for the other problem, I'm a little confused, who did the EKG, DR. M., or your cardio Dr.? If it was the cardio doctor and he sent you a letter I would def look for another dr as others have said. That was callous and rude to be sent such news via mail. I know you are upset, but not all transplant recipients lead such seditary lives, many go on to lead very active normal lifestles so try to think positivly as I know you will be one to push the limits of any lifestyle you have the opportunity to live. Hugs, Pam

 

Hi, Ann:  Congrats on the weight loss.  I think we all know that we lose weight at different rates, so don't get discouraged.  The scale is going DOWN, and that is the important thing.  As far as the other news...I am so sorry you are having to deal with it, and hope and pray that it will be resolved soon for you.  Know that you are in my thoughts and prayers!

You know what?  Ya'll are AMAZING!!!  I'll admit that I was hesitant at first to share the cardio stuff...didn't wanna be a downer for anybody.  But I'm glad I did share it.  Just goes to show how powerful family can be...even extended family. After having a wonderful weekend...the photo shoot was FANTASTIC & everybody looked soooooo beautiful, Thanks Jackie!!!...then getting a surprise visit from my eldest son whom I haven't seen in years...& basically relaxing with friends, I awoke with renewed determination to take care of this "situation".  So, I called the cardio doc & got an appt for this wednesday at 330.  He & I are going to have a come-to-Jesus meeting where I will reiterate the importance of communication, & I don't mean via the postal service!  These specialists tend to forget that they are treating human beings not just an illness.  They also need to be reminded that they do NOT walk on water.  Lastly, he better realize that I can take this dog & pony show somewhere else & let THEM make a buttload of $$$ off me like he has.  I may have wobbled for a few moments, & in light of the cir****tances I think I was entitled, but the B*tch is back!   I'm also going to seek a 2nd opinion & from a group no where near this one!  I want a complete cardiac workup with a completely unbiased cardiologist that's not in the good-old-boy network. So my dear ones, have no fear...I ain't goin' without a fight & you would expect nothing less from me anyway...LOL!!  I thank you all so much for being part of my ohana & for sending me so much love & encouragement.