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????
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!
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 :).
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~
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
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
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?
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
Good luck and I am glad you are going in.
Good luck, Sass! Praying for you!
As much as is possible, relax & let them take good care of you.
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
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~
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
WHEW!! At least now you know what to do!!! Praying for you!!
Please have someone in your family keep us updated, OK?
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.
You're going in. Good!!! When you get there if there is still confusion it is up to the hospital staff to help sort it out. Sheeesh!!
Prayers and more prayers. Sounds like you will be in a good place. Keep us updated cause we will all be anxiously awaiting the outcome of this test. You will know once and for all. Irish ;D
Sass,
I am so glad your going in. I know it will be tough but you are tougher. I know you are already in God's hands, let him guide the Dr's but just make sure they are listening. ;D Know your held up in prayers and hugs and spirit from all here who love you very much! Please ask your husband to update us as he can.
God bless! We are all talking to God about you! Sleep and rest and breath deeply,
Gayle
Sass,
I am glad you are going in, although I am confused about which course of treatment/what surgery you will be having. Know you are in my prayers as is your entire medical team. I'll be thinking of you tomorrow!
Nancy
Sass, this is so confusing. I just hope everything goes smoothly from here on in. Sending you healing vibes and a huge bear (((HUG))) for you and your family.
Good Luck Sassafrass!!! We'll be waiting to hear from you!
Sass,
I'm glad you won't need to wait much longer to have the biopsy. I'm keeping you in my prayers that the news you receive is better than anyone may imagine.
Blessings and hugs, ;)
Melinda
Good Morning!
I apologize for the confusion. During my post on my confusion on what I had been thinking, I received the phone call telling me that we must not wait and to come in. I changed the title and the direction of this particular thread. My apologies!
I also want to take this time and thank Iraisin for the info on the Houston Sjogens Group. evidently it is just a support group that meets and talks.
And then, I want to give huge thanks and kuddos to Gayle! She took up the reins for me, when I could not! She made numerous calls and spent many hours trying to help me find some local support to help with accommodations for my husband and then myself when discharged. Bless her sweet heart! I did not have the energy not the voice to go thru it all, and would have never even tried, but at her persistence with me, I gave it over to her.
And , Wow what a relief it was to have her do so. She found several roadblocks but just kept on going. She did find some areas of relief,, but with waiting list so long, it was not feasible for us. But alas, my hubby will stay with me, Gayle was able to secure with the Hospital that he may stay on the floor either in my room or in the hospitality family waiting area designed for overnighters.
She went to extraordinary efforts and lengths for me. Now it is said that we have angels among us and I know that Gayle has certainly been one for me. So I am sending out a big Smooch to an Angel of a girl named Gayle.
Now, to clear the confusion. I am being admitted today and am having the Open Lung Biopsy to be done by a different surgeon on Friday. My pulmonary doc said I could not wait till next week to get on this. I am following the advice of the second opinion doc in Houston. My guess is Advanced Sarcodosis.
My husband is a nervous wreck and will be alone as my children are unable to be with him, And they are so sick and upset, My daughter is feeling better and will stay with my father and that is a relief to me. My son is devastated that is unable to be there, but will head that way as soon as he gets the papers signed on his house, Fannie Mae waits on no one!
I have tried calling, testing, facebooking and messaging his sister asking her to come be with him in the event of bad news it will break my heart knowing he is alone. But I have not heard from her. I think they do not consider this serious. I have a feeling that she will show up for him. I love her so much!
I am beyond words to tell you what your love, support and prayers mean to me. I am simply stupefied! I will tell you this though, my next laptop will have a backlit keyboard!
haha, now that was deep! My love forever more and all my heartfelt thanks.. ~sass~
kisses Irish!
Hugs to All
Dear Sass,
You are facing so much hardship. You are always in my thoughts and prayers. May the light of God bring you peace and may He hold you close through it all.
I wish you a healthy next few days that will be filled with good news :)
Missy,
Thank you so much. You have been an huge lift to my spirit with your posts and prayers.
I am going to do fine! It is people like you on this forum that reaching out and offering hope that keeps others going. ~sass~
Sass!
I am so excited for you to finally get moving with this ordeal so it will be over with soon! Know that you are held softly, firmly in the grasp of many prayers and we EXPECT great things and results!
Big hug girlie! Waiting to hear from you soon!
Gayle
Quote from: sass on June 20, 2012, 12:58:53 PM
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~
HI I am NEW here /...and YES! I am having this as well! I have VERY thick spit (clear with white bubbles). I COUGH all night over it and i have seen and tasted blood in it. I dont know WHY though or what thats about? I assumed it was from coughing so much all the time at night that my throat was getting raw-hence the blood? My blood was very small though (turned the froth a pinky color). Let me know If you hear any more about this as well!! Many thanks! I hope everything goes WELL for you!!!!!!
Sass,
Wishing you the very best through all of this and praying you will come out on the other side with hope for a better day.
So glad others have jumped in to help you, that is what it is all about.
Anna
All the best to you in your surgery on Friday. At least you will have some answers and then will have a better idea of how to proceed.
Take care - we are all praying for you, and with you.
Genko
I'm so glad they are finally doing something.. Will keep you in my prayers..
Still thinking of you and praying too!!
Sass you will be fine, and our prayers are with you. I start grinning when reading your posts, because of my brain fog, I also start spinning around in my mind, but you have me smiling, due to feeling like I am on a run along side with you. ;)
Get some rest, and know our hearts and prayers are with you girl.
susanep :)
I'm sending hugs & prayers for you & your hubby.
Carie
Prayers for you now dear. Hang in there!!!