sass is going in tomorrow

[sass]

FIRST WILL SOMEBODY TELL ME, WHAT KEY I AM HITTING THAT MAKES EVERYTHING DISAPPEAR, and what key i can hit that recovers it??? I know it is there because I have done it before.  Gee Whiz I have never lost so much stuff in one place before.  I now keep copying my message every few minutes in case presto it is gone! 

So, gosh I don't even know where to start.  This was supposed to be URGENT/EMG.  The Rheumy that The Pulmo sent me to said if it were him, he would not want to wait another day.  The girl that schedules the open lung biopsy, dropped the ball and assumed they had always been able to get a patient in with no trouble to this surgeon that the pulmo insists on.


Well she waited to the last minute Tuesday, after our repeated calls, to sch with the Surgeon and was told he would be out of town Thursday and Friday and would NOT do any on WED as he could not follow up the next day.  The girl spoke with The Pulmo and he prefers this one surgeon.  So I will go by his wishes. 

They girl told me if I have an Emergency of any kind I should go nowhere else besides ST Lukes Emg room and they would call my doctor as an agreed upon thing with these type of emg.s  .  I told her AGAIN that I am 2.5 hours away.  She spoke with DR and again Go only to ST Lukes. 

Then she said something confusing, almost mysterious, as if am I supposed to read between the lines or am I making more of this than I should.  she said, "In fact, we would not mind if that is what you did".

I am not having any more difficulty than normal.  Were they saying if I went to ER at STLukes they would admit me and I would be safer until Monday and Tuesday(surgery day). Or was that nothing. 

Now, the another thing.  I have several...  The Pulmonary Dr in Houston is someone I trust, he is one of the top docs in his field and has the experience and credentials to prove it.  He has assured us that this is not IPF in his opinion.  On the other hand the Doctor in Beaumont is very respected and considered highly regarded in his field.  I have numerous friends in the medical field that all say oh he is great and all that.  IN fact he is the one that encouraged me to seek a second opinion so that I would feel secure in the opinion of lung transplant.

So off I go and get a entirely different opinion.  One I had hopes and prayed for. one of a trusted dr.  So what do you do with difference of opinions.  Dr Beaumont did in fact send my records to the Transplant team  Dr Houston said I do not need a transplant.

Now am I accepting Dr Houston's opinion so easily because it is a better one?  See my confusion. 

So then late yesterday, I get a call from ST Lukes Lung Transplant Team.  They have received my records from Dr Beaumont and want to  schedule me to see THEIR Transplant Pulmonary Dr.   

Now, I joyfully told her a quick and revised story and told her that DR Houston said I do not need a Transplant.  She was like...Oh??? and asked who my dr in houston is.  I told her and that he is part of the Transplant TEAM with ST Lukes,  and she said..no he is not part of the team, but he is a very good dr and we use him as part of our go to  docs for review.

The Rheumy says, URGENT/EMG/ DO NOT WAIT ETC.   AFTER BIOPSY START STEROIDS AND CHEMO DRUGS
THE BMT PULMO says IPF&- TRANSPLANT- NO LUNG BIOPSY NO INTUBATION-NO STEROIDS
THE HOUSTON PLMO SAYS NO IPF-NO TRANSPLANT-OPEN LUNG BIOPSY-STEROIDS.
TRANSPLANT TEAM WANTS TO SEE ME- dR HOUSTON NOT ON TRANSPLANT TEAM..

GEE WHIZ CAN IT GET MORE CONFUSING..NOW DO NOT GET ME WRONG.  i TRUST THAT GOD WILL PROVIDE AND THAT HE HAS HIS HAND ON ME.  I JUST DON'T HAVE A CLUE WHICH WAY HE IS PUSHING ME?   

[4Kids]

Without panicking, I would proceed to the ER she hinted you go to, explain the whole thing again and ask what direction they would like you to take.  There HAS to be other good physicians who could do a lung biopsy and get the ball rolling.

I just wouldn't wait with something like a lung.

That is only my opinion and I am not very knowledgable!

[iraisin]

I'm not very knowledgable either. I can understand this is very stressful and confusing. But I'm of the sort to not read between the lines, especially in times of stress and illness. Be bold - tell them you are confused and demand your rights as a patient (they are providing you a service that YOU are paying for) for true and expert advice.

What should my actions be going forward?
What are the deciding factors for me when considering ER or wait for biopsy?
What were your decision factors for not admitting me...my insurance, or am I not that urgent?
What should I expect physically during this wait time? How should I treat those symptoms? React to those symptoms?

I find, especially at work, that due to the fact that everyone has a belly button - they somehow have a right to voice their opinion -regardless. Perception is our reality. Get objective information, from the people you are paying to give you the medical advice. Be point blank. Explain to them that to you, you are not just another case, you are the soul that is living in that borrowed body and that you need clear consice direction because your are in ill health and scared right now.

This is certainly not the time to assume anything. This is your health, and you may do well (I say that loosely) until the doc gets back next week. And you will have saved all that money, and spared your family.

I know they have to tell my dad his problems are urgent as he will wait 6 mos. before he goes back for a check up. I would also maybe call your first doc, the one that put you on the transplant list and tell him what's going on, and what he thinks they their definition of "urgent" means. Too, the people that are saying "urgent" need to offer you that same definition. Like I said, our perceptions are our reality, urgent may mean different things to different people in different circumstances.

Anyway, because I have a belly button, I assume you want to hear my thoughts/opinions .

[sass]

call from my pulmonary doctor.. He said this is too urgent to wait for next week..I will be admitted tomorrow and surgery will be Friday.  Wish me Luck Ya'll!! 
Have had a tiny bit of blood in white frothy mucus (like milk) upon coughing.  Anybody know of any significance to  that?        ~sass~

[Cricket]

Sass

Go with the grace of God, my friend! 

I am glad you will not have to wait any longer as we both know it is not pleasant.
I am and will be in prayer for you to have a successful surgery and recovery.

Know that you are loved [strange how we can such strong feelings about people we have never met.  But I think maybe we all have such feeling cause we can really pour our true feelings without holding back.]  Looking forward to hearing from you soon.
Joanie

[Carolina]

Dearest Sass,

ACK!   I just posted on the mammogram false alarm, only to progress to your posting!.

You really have several dilemmas, only one of which I have a slight clue about.

If you lose what you've written, some times it is because something you typed last blotted it out.

If you go to EDIT and hit Undo Typing, sometimes you will see the entire thing pop back into view.

you can always REDO if that doesn't work.

As for your doctor/procedure/transplant dilemma............I have no definitive answers.

Writing it down, as you have, often helps me.

And having one or two objective family members or friends to talk about it with, and help.

As I understand it, you have a request for an open lung biopsy, but not a date set?

You can schedule a visit with the St. Luke's team, the sooner the better, then cancel if that has to be done for any reason.

You WILL go directly to St Luke's  if you have an EMERGENCY, at any time.  I assume that is if you become ill in any way, short of breath, or have chest pain.

You know what Dr. Houston thinks, but you do want that open lung biopsy, I assume.

Knowing where to go in an emergency, getting another test, and then evaluating your information and options, seems like the way to go.

Of course is it terrible terrible terrible.

And confusing.

I hope you having something for sleeping and anxiety, if you need it.

Hugs

Elaine

[Sleepy In Seattle]

Good grief - what a dilemma! Hopefully new tests/information in the next day or so will give you more info to go on.

Any chance you could get a conference call with the two docs and you? Open conversation and debate? 

[eye2dry]

Good Luck sass on friday.

I will be thinking of you and say a prayer for you friday that your lung biopsy goes well and the news will be better than drs think.

eye2dry

[4Kids]

Good luck and I am glad you are going in.

[susan]

Good luck, Sass! Praying for you!

As much as is possible, relax & let them take good care of you.

[Cdbhappy]

How confusing and frustrating when all of these well-respected medical professionals give differing messages and can't seem to talk to each other.
Yay they called you back and put you on the schedule!!

The physical ailments are more than enough to deal with, but unfortunately we have to constantly be advocates for our own healthcare.

I hope you can rest and quiet your mind in these days before and after the biopsy. May God give you that "peace that passes understanding" and may your healthcare providers handle you tenderly, be clear headed, find what needs to be found, and communicate clearly.

Best of luck Sass,
Cindy

[star723]

Praying for the "right" thing to happen for you..... and people wonder why we questions things like we do!!!  We have to some times take matters in our own hands~ that is just another reason I love this site.  Good Luck and it sounds like you have lots of prayers going for you this week~

[Dolly Dimples]

 Will be right there with you Sass,  all the way!   I' m dizzy just reading your post!.
                        Anyway all best wishes for a good report. Hugs Dolly x
   

[jazzlover]

WHEW!! At least now you know what to do!!! Praying for you!!

Please have someone in your family keep us updated, OK?

[iraisin]

FINALLY!!! Thank God!

So which dr. was it? The new one at St. Luke's or your first one? I'm glad somebody finally manned up and made a freakin' decision.

You are a better woman than me Sass. I would have been perterbed and demanding with those guys. I don't know if it's insurance, or malpractice stuff that makes them so "iffy" about stuff, but it is annoying, especially when you're not feeling good.

So now, I suppose as soon as the biopsy is done they will start on treatment for what they are suspecting it is? Or are they going to wait until the results come in. You're coughing up blood and whatever that goo is - you need something really soon if not now!

Have they told you what's next?

I'm going to talk to God about you tonight...AND your doctors.

I'm amazed at your spirit. And thanks for keeping us all in the loop despite your schedule and how poorly you're feeling.