INSOMNIACS place to talk in the wee hours
Comments
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Sensi, real glad hurthle cells were off the table. Sensi, your family sounds a lot like mine. I'll post the color genomics link. They test for 18 genetic abnormalities. The BRCA are two. After my own research I thought Chek 2 and another one were considerations. Erghhhh I forget the other one. AND I forget if it's on the genomics list. CG is only 250.00$. Cheap by comparison to all other companies. If you go there check out the "about us". I thought it very cool that the folks that started it, really did do it to help folks.
Have you gotten through all the reading? Need any help?
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Susie I talk to her via phone. Yes she is going through a dry patch . Prayers would be appreciated for our dear mamma Ray
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Shep Chit(shit). The easy opinion is change lawyers. Confidence is everything. Sounds like your skeletal system is trying to take you out. I do remember a couple of times with drill bits breaking. Don't remember outcomes. I remember that the first created quite a stir and that with the second it was known what to do. The first time lot's of bosses in the surgical suite talking, Hmm I can see them...............
Check your surgical consent to see if that was a risk that was in the consent. If it was that becomes a hurdle. I never liked ortho cases. It was carpentry. Hammers, chisels, osteotomes, drills, nails, screws, wire.
When it sounds like negligence/ malpractice, I'm the first to say get a lawyer. But was this negligence? Was it forseeable? Did the doc do it wrong? Sometimes we can do everything right and something happens. I had a patient once that I did everything very ritualistic right. But ten minutes after an IV push she was in serious trouble, 10 minutes later she was in ICU. She died that night. I didn't worry that any of my technique had caused harm, but I felt the drug caused harm. Even though she had previously had it. Oddly, it would seem she was allergic, but anaphyllaxsis wasn't the issue. I pushed the oversight committee hard to report it as a drug related death. Their analysis didn't support it. A drug related death has to be reported to the FDA and it's a big deal. I forget what the cause of death was determined to be. If only the time line was considered, the drug or I did something, but not so according to the committee. Of course, the thought occurs of cover up, but nope. The point being hmmmm.......Has anyone indicated it was malpractice? Is that what you are hoping to find out with discovery?
I've had muscle, bone and joint pain my entire life. Post polio. But the recent activity(2013 & forward) with the thyroid has taught me some things. First, I've never had normal thyroid function based on how I feel with the hormone replacement. It still needs to be adjusted I think one more 25 mcg increment. I've had TSH's that always fell within the "normal range".
That normal range is defined by science. Science is wrong. Bitchy, knowitall LOL. The future, hopefully soon, I think a relook will show that science thought they knew something about the thyroid, but screwed up after the TSH was developed as a measurable lab in the 70's. Secondly, vitamin D deficiencies are intimately involved in so much more of body function than even known now. The research on it has exploded in the last couple of decades and will continue to expand.
How both have impacted me? Thyroid dose now is at 175 mcg/day and D 10,000 units a day. (Accepted new dose of D is 5000 units/day- i'm choosing to exceed the dose). My D deficiency was found in 2007. I was on 50,000units/month until last year, 2015, when the dose was increased to the 5000/d with PCP approval. I started on the 10,000/d jan 2016( may be a little off on that.). I haven't told PCP.
The bone pain is dramatically, dramatically less. It is so nice. I felt the change when I went to 5000 units /day>>>then more on the 10,000 on the D. When the thyroid was @ 150/day there was a change, and it was even better on 175.
The drugs were adjusted independently, with enough time in between to not get confused about what the response was i.e which reduced the pain. Between the two, I think I'm closer to normal. I'm not a great judge though b/c I have no clue what is normal.
Bone pain has it's own suckiness. It's gnawing, deep, achy, and continuous. Like a dog gnawing slowly. I also, found that narcs didn't help. NSAIDS did, but I too couldn't take them. I don't know how my words on D and thyroid can help you. I hope they do in some way. For me, this new reduction of pain as a 63 y/o was so encouraging. (now 65). I would have lived out my days with the old pain. I do still have pain, but that deep deep, gnawing, achy,continuous pain is near absent. Sure hope you can make sense of this Shep.
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Hello Mominator, Your timing was impeccable. It's like we planned it LOL. Did you get through all the Toradol reading? I should go work on the monthly post to the surgery threads. You were in the same group as GrammaX3 weren't you? Did you see the post? Actually, I remember now Grandma was the only one that responded. I felt like an interloper. May be that's why I didn't continue. So, your opinion. Continue to post something similar?
SusieM. I just saw Susans post. Good, we know.
Susan send Mamma our regards and hugs.
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Found this about 4am today. This researcher(s) identified people that survived into adulthood with inherited diseases that are usually fatal in childhood. Small number of survivors--13. These survivors were gleaned from a total sample of approximately 600,000. The researchers are terming the gene that allows these folks to survive as a resilient gene. Once they find the resilient genes, the next step will be to replicate and insert the genes. Viola! fixed. The implications for all humans are tremendous. It won't be applicable in our lifetimes, but in a future time this will be life altering.
4/11/2016
Why Do Some Kids Escape Terrible Genetic Disorders by Dennis Thompson
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Good Morning Y'all !
My definition of "morning" is whatever time it is when I get up and have breakfast.....
Just popping in with a freebie for those who like to read:
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Subjects range from children's books, fiction, biographies, health, gardening, sewing, cooking, computer and medical tech and all out smut
FYI; not only am I a pet trainer/behaviorist and self proclaimed Raccoon Expert, I am also gifted in the knowledge off almost all things bargain. Need a deal? Hit me up
BBL....
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Hi friends- popping in for a minute during a break at the client site. Not into work this week, but leaving early today for a prof org event!
Sassy- I drink coffee in the am, tea the rest of the day (usually in the ice tea form this time of the year).
Susan- good news that your tests are stable. Lovely family pics! That baby is coming soon......
JazzyJune- NM has a very long spring in the high desert. The fruit trees begin blooming end of Feb to early March and then a whole series of things unfold through until the end of May. Right now, the rest of my trees are coming out and have some buds on my cacti as well. We are going to get some more rain today which we really need.
Sorry to hear Patty is back in the hospital. I hope she is out and feeling better soon.
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I finally got around to doing the thread info related to Torodol and blocks and opiods. The concepts apply to original BC and any subsequent surgeries. Give it a look and see what you think. The third post is what will be posted for each surgery group. Well apparently the post was still in my fingers.
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Hope you find this information helpful. In 2014 and 2015, there were several threads that looked at 1. specific drugs i.e. ketorolac, opiods, propofol, and other NSAIDS, and 2. surgical anesthesia interventions i.e. paravertebral blocks that may affect breast cancer recurrence either local or metastatic. All the information is Evidence Based Research with links. The intent of this post is to provide you with a link to information that you can study and in turn take to your surgeon and anesthesiologist for discussion pre-op, if you feel it has value in your breast cancer care.
https://community.breastcancer.org/forum/73/topics/843381?page=1#post_4691613
A great starting point is this presentation by Dr. Vikas Sukhatme who is academic dean at Beth Israel Deaconess Medical Center at Harvard. Published on Jan 21, 2016. Presented by Dr. Vikas P. Sukhatme on December 8, 2015 at MIT in Cambridge, MA.
"A Simple, One-Time, Inexpensive and Non-Toxic Intervention to Improve Cancer Survival"
https://www.youtube.com/watch?v=H8zVrYEW8vE&feature=youtu.be
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Re: Genetic Testing.....
Post dx I had testing ordered by my PCP using GeneID - Don't know how they compare to Sas's lab?
"The GeneID PrevenTest panel screens 31 genes for 8+ cancers including breast, ovarian, colorectal, endometrial, melanoma, pancreatic, gastric and prostate"
If there is a personal or family history of cancer insurance will cover all or most of it. I have Medicare and BC/BS and it was covered 100%. The "prior authorization" was funny....got a phone call to confirm I had cancer or was at risk and that was it
PCP also ordered testing through Genelex to help aid in finding appropriate medications based on my DNA. The insurance companies want a "compelling" reason to cover it. The customer service at Genelex is outstanding and will help with insurance billing. They even offer help by means of financial assistance (possibly free depending on income) and have payment plans as well. I lucked out as my insurance covered 100%. Test results are given on paper and also posted online in your own private account - interesesting stuff.
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Jazzy, okay got it. Thanks
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Good Day Ladies:
Can we all say Hallelujah!! CT scans results finally came back and "cancer in T11 is stable, no worsening of disease."
At this point I am 20 months from Dx. Yeah! Thank you Jesus.
I can really start to smell that puppy breath.
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https://www.youtube.com/watch?v=y8AWFf7EAc4
Jeff Buckley - Hallelujah (Official Video) . Not quite the regular lyrics
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hello. Just poppin into check on everyone. Thanks for the support all. I am still in the hospital but we'll on the mend.
Hootirhoo
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Sas,
Thanks for your insight! Carpentry indeed! There was a hammer and pliers and gosh knows what else! I don't blame the surgeon at all. This particular tool has never been known to break before. A report was filed with the FDA reporting an adverse event involving a malfunction. The manufacturer is aware. Two months ago there was supposedly action taken to get experts from my side and theirs to meet at the hospital and examine the tool. Nothing has happened. Don't recall anything worrisome in the surgical consent form other than I acknowledge the anesthesia might kill me.
New doc tomorrow is very interested in the details concerning the tool; especially what the exact materials are that are in it. I haven't been able to get a specific answer, hoping the doc will have some new info.
So sad about the patient you lost. Somethings are just out of our control. I knew a girl years ago that switched careers from being a beautician to an LPN. She mixed up used/clean thermometers and killed a frail elderly patient by giving a dirty rectal thermometer orally. ewwwww. THAT was her fault! Last I heard she was cutting hair again.
Thyroid was first thing explored when my fibro symptoms worsened. Way crazy carousel of differing opinions and dosages of synthroid and cytomel. Originally thought to be sub-clinical hypo-thyroid. I do have non-cancerous nodes on the thyroid....not considered to be Grave's or any of the others. Took years to find a good endocrinologist who determined the thyroid was fine. Lots and lots of tests - the guy was thorough. Only thing he could figure was fibro. Cancer had been searched for. Wasn't until after dx I learned my blood shows "clean" - no markers or signs of cancer. Heck, all my bloodwork is normal. On paper I am wicked healthy!
MO has me on 1,000 IU D3 three times daily as well as calcium supplements. My D3 had crashed a year and a half ago. I don't notice a difference in pain though.
My father and his younger sister contracted polio when they were little. She has had life long issues, mostly with her spine and legs, and has suffered with increasing pain/problems as she has aged. She is a sweet lady, so unfair. My father's only affliction was lifelong extreme and unbearable asshole-ishness. So, so unfair.
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JunieB! God is Good! So happy for you! You should immediately take advantage by saying/doing whatever silly thing you want. If anyone makes any comments you can tell them "Ha! I'm STABLE! The doctor says so!"
Oooh, puppy time....much happiness ahead!
So much good news this week ~ happy dance? ~ We need a happy prom! And maybe a small parade or two....
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Patty XXX
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ShepKitty - you surely did not want the added legal stress that is awful, so sorry.0 -
yeah jazzjunebug!!!
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JunnieB two thumbs up 👍👍🎉 celebrate with something decadent tonight .
Shep sorry to hear about your medical problems.
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Thank you everyone for the Yeahs!
Sas - I can't remember if I said that I'll be going to a SNF (skilled nursing facility) after surgery for 3-4 weeks, so that'll get me over the hump to recovery, then outpatient P.T. I have a P.T. who is totally awesome. I've been going to her for several years after surgeries, etc. Along with the normal P.T. she also does soft tissue work to help speed along the healing.
Patty - So glad to see you posted again. Hope you get better and home soon.
Shepkitty & Lookforward - Can't decide what to do to celebrate. My results just make me look forward and excited about when I get my puppy. September feels like so far away.
Again Shepkitty - I'm hoping & praying you get some good news yourself tomorrow at the doctors.
Doing the "HAPPY DANCE"
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Happy happy dance for both Susan and JunieB for favorable results and for Patty for feeling a bit better.
Susan, you scared me for awhile there. Whew! I saw that I was not the only one misunderstood you. I'm glad you are there for MammaRay. She is one of the ladies I think about often. Saw what she posted on the LDS thread the other day....Just wanted to give her a hug. Sigh. Chemo tomorrow for you, right?
ShepK, wow!! I admire your attitude despite your challenges. Praying for wisdom for your docs. Best wishes with tomorrow visit. So far Mitzy is doing great alone outside the crate. The longest time so far is 3.5 hrs! She seems less anxious and settles down quite fast. Must be the Prozac. We can see with cam that she waits by the stairs when we are away. Not sure if she knows DH is away or she still thinks that he is upstairs taking a very looooooooooooong nap as she often waits there for him when he naps in the afternoon. Ha! I'm thinking maybe because guarding is in her nature, she does not like to be caged up. At night whenever I let her out to pee before her bedtime, she always has to patrol the backyard before she comes inside. If the doorbell rings while she is locked in her crate, she will yelp and "scream bark". Hope she continues to behave herself.
Forward, when is your daughter getting married?
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Blessings, thank you for sharing the info on PPIs. Thank God I have not had the need to take them. Possible link to bone loss also with PPIs. ShepK, not sure if you are aware of this. Btw, thank you also for sharing about your GI issues and treatment. I might develop intolerance to dairy too. I think the mild nausea I have been having on and off is from the milk. I have heard about Bromalain. Might try it.
Jazzy, went to Lowe's and Green Acres Nursery and got some succulents. I spent $90+. I went there with the plan to get not only the succulents but the pansies and cyclamen and left with 19 succulents. There are so many varieties! I was so into selecting them that I forgot to get the pansies and cyclamen.
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Loverly. Your the .2nd person this week that had their dog on Prozac. I had no idea dogs could take that. Glad it's working
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good morning. I had my mammogram and ultrasound a week ago today. Still waiting on films to be read. Can't sleep... worried.
Brandy
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Hi Patty glad you're here
My doc suggested Prozac for Shats b/c of storm anxiety. I'm going to start her after her yearly visit in June. May even take her in early b/c we are getting into afternoon storm season.Junie please, read the ketorolac material soon. I figured you'd go to a SNF. Unusual that someone doesn't. Overall the recovery is so much better. But you've been there before and understand it
You might have missed the suggestion on getting a Social Work consult for "Evaluation of Services and Resources". It's a separate issue than your ortho schtick. The SW will come to the house and cover all kinds of things. Some services may not apply now, but you will know they exist for a different time. After DH was dx'd 3 months behind me b/c of the list that the SW gave us, we were able to apply for funds. 9000.00$ in grant money. Very COOL. Spent every penny of it on the designated stuff. But they're lot's of other things they can make you aware of i.e. someone that can do grocery shopping in those first few weeks after the surgery. Ride assistance to appointments. I teasingly say the Social Workers role is to know stuff that the rest of the world is oblivious too and need to know when troubles afoot. 0 -
Junie, allot of insurance companies are very cooperative too. Call and ask too talk to the nurse case manager. If they say you don't have one, ask how you can get one assigned. Most companies have them assigned for case management, but they aren't involved directly unless you ask. They are great in trouble shooting when things get bollicked. Ask her the same thing "How do I get evaluated for services, safety review of home for after surgery, and any other resources that might apply?" They can contact the doc for the order. That may get you the SW, A nurse or PT to make recommendations about grab bars, shower chairs, Homehealth----stuff.
Shep, one approach on the legal aspect is to go forward getting the records from the company, FDA, and hospital. Just b/c they say it's never happened before..........Hospitals do incident reports when anything is unusual. I forget what the law is regarding their use in a case.
Well now, Shep I' have been advocating for Genelex since 2010. I'll bring the link for jelson's thread on here. My 3A4(5% of population) is slow, 3A5(7% of population) is fast. Very rare. Do you use YouScript from Genelex? It's very cool.
On the D, I didn't notice adifference on the pain until I started the 5000u. I can link to a fella that is a world leader in Evidence Based Research. He's retire from Creighton Univ.
At first dx my D total was <4 not measurable. Yikes!. with that kind of deficiency. the standard treatment is 50,000u x7 days, 50000u1 wk x's 6 week, 50000u once a month.
The first dose of D felt like I was in a warm pool with warm melted chocolate being poured all over. OMD it was wonderful. Never felt that way again.
LOL, about the way you put it about your father.
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Shep, I posted from the beginning, but where I get onto the soapbox is in Feb 2014
https://community.breastcancer.org/forum/73/topics/798301?page=8#idx_22
Topic: CYP2D6 ability to metabolize tamoxifen and recurrence
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Hooray! Patty is here! I hope you continue to feel stronger and stronger
I am off to see the "wizard" today. It is a two-and-a-half-hour ride and this will be the first time my DS will be taking me. Usually my husband drives on the long trips. He is a fart face and no fun. My darling boy is lots of fun and although we are not going out for official fun reasons I know that we are going to have a good time. Depending on how I feel after the appointment we might even get to bebop around town a little bit. Lots to do and see in Charleston ... including really good thrifting which DS also enjoys.
Thank you everyone so much for all your kind words of encouragement. It really really means so much. So many big hearts here
JunieB my sister in spunk! I have been so worried for you .. So glad you will be getting good care after your surgery.
Loverly Mitzi comes from good stock ~ she is a true Shepherd doing her guard duties. How is she for herding? Marti can entertain herself for hours with a soccer ball. it's not quite like having a sheep but she can kick it and make it go where she wants. And if she has people to play with all the better! She likes to pass the ball back and forth and chase it together.
Marti is on a low dose of Xanax for anxiety due her dx of early-stage canine cognitive dysfunction. She also has been switched from Tramadol to Neurontin for pain management. So far I see much improvement (yay!) although I need to figure a Xanax dosing better as the last two nights she has climbed over the doggie gate and up the stairs to get me. Woke me up at 4 this morning pacing and panting in my face. She even pested the sleeping kitty. Ahhh, sleep is sooo overrated...Not!
Forever thankful to FeelingFeline... now I know to go look at the kitty-cat page to sooth myself back to sleep
Sas - will have some good reading in the waiting room ~ thank you!
Happy thoughts for y'all to have a happy day!
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