They are in my walls, furnace, floor, and roof. Even combined they would not be able to handle what I need to expel. Thank you for your caring, there is still no bed for her in Cleveland after four days but she is next on the list from her current hospital. Tonight's IV contained a dose of 120 mg Lasix. Still not releasing the fluid after her lower angiogram during which her blockage could not be opened (hoping Cleveland can). To say this is scary combined with heart failure is not even close. She's been in this hospital for over a week, dehydrated, weak, uncomfortable, terrified. Am I helping alleviate her fears? Impossible when I feel like the ground is gently trembling, waiting for it to crack open.
I was devastated and unable to cope with the "rapid onset and progression" of fibrosis by the PA almost two months ago. Started relying on medication to cope which I received from others because this doctor office refused. I took it upon myself and called another doctor not affiliated with them, saw him yesterday. And now, the louvers on my vents are wide open and blowing uncontrollable emotions.
Except for the GGO grouping that needs checked in six months, there is no fibrosis shown on the CT scan. He just kept shaking his head, my reports in his hand, and was stunned that I had to insist on the scan. More ridiculous he said, is the fact that she told me fibrosis does not show on a CT, yet she takes the subjective result from an xray which many times can be an error in perception by the radiologist.
I have been in this state of mind for some time, am questioning everything, unable to let go. I did several weeks ago and was thrown back into that black hole. No trust, nothing tangible for proof. Could the PA really be so foolish? Or did the radiologist that read the scan miss it? Is this ridiculous? I am just so fragile and worn down that I can't cope or let my guard down. I need to snap out of it and be extremely grateful, which is difficult until Carole is out of danger.
Today is the 20th anniversary of my dad's death because of a doctor's failure, and when I saw that punk in Macy's parking lot a few weeks later, he turned and ran back to his car. What about this PA? So sympathetic and sweet, do I tell the doctor how her irresponsibility caused such mental and physical distress? At a time when I need to function and have some stability, her recklessness took that from me along with ever feeling safe or trusting a medical report. Or do I just follow her for two months and make her feel the fear and anxiety she put me through?
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16 comments:
Wowsers. I don't know if I should scream YAY!! or send you my business card. Seriously....I am grateful that you have again been given a measure of good news, but completely understand why you are hesitant in believing it or feeling the joy that SHOULD accompany it. If your whirlwind of a rollercoaster ever slows a bit, I do believe I would request a followup with the PA and tell her exactly what the new physician has told you and ask for a very clear and forthright explanation of her "diagnosis." I would also be very clear in telling her exactly what her prognosis caused you to endure. I am certain she will be defensive, so I would start with a somewhat demur tone and just explain you had seen another provider and he had told you something quite different than what she had told you...and as she backpedals, I would keep feeding her what, exactly, this new dr told you...and then, well, then, I would let that vent go wide open. Just my two cents. Praying for your sanity...and for Carole. ~Robin~
Praying for you, Carole, Mark and Bud. When it rains it pours !
I hope you will be able to get some comfort and relief from all of the anxiety and stress you've been going through for quite a while now.
God bless you and give you peace.
Love from Virginia,
Charlotte
This is unbelievable Marly & you should NOT be going through all of this. I'm with Robin... I would definitely take your new diagnosis back to her & see what her response is...then I'd let her have it. NO doctor should be allowed to get away with what she put you through because she is incompetent & has no business in the medical profession. For you own mental health you need to tell her how you feel.
You & Carole are in my prayers. I'm hugging you!
Lee
On the lighter side, my son (43 yrs old) keeps telling me that doctors are just "practicing" medicine!! Glad you saw another doctor and have a little peace of mind. I think instead of going to see the PA you should email her and send it to every doctor in the practice. Documenting it is everything and then you can reread it if there is a problem later. We had a couple in our Sunday School class that the wife was in the hospital for 65 days. Each day he would send us an update including her behavior, meds, what she ate, therapy, etc... You never know when it might come in handy. Praying that Carole gets to Cleveland soon and gets the care she needs.
Sending XOXOXO
Marly you just can't get a break. Not to denigrate PA's but I would not take what a PA says as the gospel when I am being diagnosed with a serious disease, a doctor (preferably a pulmonary doc) in a tertiary center should be seen. They have better diagnostic tests, seen more cases and management. Hopefully Carole will get moved to CC soon. Sometimes with all the craziness, you need just one thing to start moving, then you can start seeing which way you should go. I know, been there with family. Prayers for all of you.
So you're confirmed (back to?) no fibrosis, "only" the GGO area needing an eye kept on. That's Good News indeed! As to the PA, no don't follow her, that's a good way to end up in jail for stalking these days. And it may get you banned from your doctor group. I'd definitely let the group, the PA directly, and the radiologist know *in writing* about the error and what you've been through. Put in records that the PA is never ever to see you again. I'd even consider sending a copy to the state medical board. That you had to be the one to *insist* on a CT scan, and get a 2nd opinion, doesn't speak well of the PA's talents for medicine no matter how sweet and sympathetic she is. The radiologist also needs to know, perhaps with the results of the CT scan they'd like to take another look at your xrays and see what was missed, whether bad day, inexperienced or rushed viewing, or bad angle.
Forget the vent louvers - take the cover off and let it flow! Better yet, go outside and let it out.
Speaking of vents - I hope I don't start another, I know they have issues (don't we all?) but has Carole's family stepped up at all, or do they still expect you to handle it everything on top of your own issues and stresses?
(((hugs)))
I am praying for you all.
Vent all you like, you have cause. Gladly you found a good Doctor. I would not bother to confront PA it will do not good anyway. I would gather my thoughts on paper send to PA and and also a copy to local licensing board. Will probably have no outcome but you will have told your story. You and Carole are in my thoughts , hope she get to CC soon.
I am praying for you and your family, Marly. The HELL you have gone through is unforgivable.
I hope Petey and Bud are getting better too.
Thinking of you all and praying that all this ends for you soon!
Much love,
Joanie
In addition to the other viable suggestions you have received, allow me to cite my experience. After a mishap on a piece of surgery I had, the surgeon denied responsibility for resulting pain and anguish I was experiencing, attributing it to
a long-standing condition (that never bothered me before) slapping his hands together, he dismissed it, believing himself victorious. Contrary evidence proved
otherwise. However, each year on the anniversary of that surgery, a greeting card
is sent to him with my name and dates of then and now with the printed annotation,
"Above all else, do no harm" as a reminder of the oath he must have forgotten along
the way. Let him live with it .... Find a way for that PP to have to live with it.
Continues prayers for you, Carole and Mark.
Marly: I have to say I would only make an appointment with a Dr. not a PA, but that is me.
I am so sorry you are having to go through so much, it saddens me.
I worked in the health field and came in contact with many doctors in my line of work, I would only see a doctor not a PA.
I am praying for you all, I hope Carole finds a place to go to and you start to find out what the heck is going on, sometimes a third opinion is needed just to make sure on a diagnosis.
Hang in there my friend.
Hugs
Catherine
My heart aches for you and what you are going through. I wish I could tell you who to see to give you accurate and correct information. A wise person once told me "Doctors are not necessarily smarter than anyone else, they just have more education". My wish is that you find one who is both smart and skillful and also compassionate.
You report her to the doctor and find a new doctor.
Hugs
Rose
I don't know if I have anything to add. I know that documenting what you know now, the timeline, the feelings, and repercussions of the treatment etc. Each conversation needs to be clearly defined because it is easy to forget important dates. Several years ago this process was beneficial to my Mother after her doctor ordered her medications she was allergic to and nearly died, not once, twice. You may not want to pursue anything but having that information will be important.
Your poor sister breaks my heart. I know how devastating such a diagnosis can be.
That said, God Bless, know that many of us are thinking about you.
How hard this is, for you, and for your sister. It is no wonder you are so stressed and frightened. DO tell the doctor; it seems from your story that the PA was either overconfident or less knowledgeable than she should be. And be sure the doc knows no more PA visits without supervision.
Good luck to your sister. Breathe and remember how she loves and counts on you.
As I read your comments, I had to hold back tears - sadness for you and your family going through the illnesses you have to bare each day and happiness that you are well! I would definitely follow up, and my choice would be through written documentation. I have to sit quietly and come up with the right thoughts and words to have the biggest impact; otherwise I'm the type to blurt out everything that comes to my mind and it's not coherent. I hope you are able to find some way to let the doctor (and possibly others) know how you were affected by the incorrect diagnosis. I am praying for you and Carole.
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