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  #1  
Old Thu Aug 22, 2013, 11:13 AM
Friedbrain Friedbrain is offline
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Low blood cell numbers and questionable biopsy means...?

Just got off the phone with my hematologist and I want to cry.....the bone marrow biopsy I had three weeks ago turned out to be a bad sample, so he refuses to speculate on the results, leaving me with no answers and nowhere to go except more monitoring, more doc consults, and possibly another bone marrow biopsy (with what guarantee that that one will be any better?). Any help in interpreting what I *do* know would be appreciated.

Circa Feb 2012, I reduced the cortef (steroid) I'd been on for 9 years, from 15mg to 10mg. Since then (so yes, for 1.5ys now), I have had abnormally low WBC-basically due to neutropenia. At its lowest, was 2.9 WBC with a Abs neutrophil count of 890 (usually around 1300). I've also had borderline low RBC around 3.7 (above/below); and so-so platelet counts (one time 139; otherwise b/w 146-190). I have autoimmune problems so my rheum wants to put me on a medication but since my neutrophils had dropped even lower, she said she wouldn't (azothioprine can reduce bone marrow production) until a hematologist consult. Hematologist agrees with rheum that the autoimmune problems could be *causing* the low blood cell counts, but ordered a bone marrow biopsy to rule out other problems. That was done in early Aug.

Here's what he had to say about it: the sample was "suboptimal"-small sample, primarily subcortical bone; aspicular. He did say that the result showed 30% cellularity (when it should be "45-60%"; reading through here, though, it looks like it's age related, and I'm only 46, so maybe should be 54%?), which suggests that the bone marrow is "underactive". A nurse told me earlier that they were running cytogenetic study on the sample, but he didn't mention that at all (getting ANY info was like pulling out teeth; I finally told him to please just send me the report).

I tried asking him what could cause the "underactivity" but he was reluctant to answer; he mumbled maybe diet, and agreed that autoimmune problems could but then he refused to speculate more. He said that we should continue to monitor the blood cell counts (like it'll change after 1.5ys?), follow back up (like talking will do any better than it has over the last 1.5ys?), and I could always follow up with my other doctors (um, the docs who sent me to him to get answers).

I feel so frustrated! I start a full-time job on Monday and was hoping to have answers by now, and on some medication that could help me get better. At this point, I have no answers, may need another biopsy, need to see more docs, and am out of time.

Any advice would be most appreciated. My guess is that it's autoimmune, since it worsened when I decreased the steroid. Any things I should look for or research? Thank you!
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  #2  
Old Thu Aug 22, 2013, 07:23 PM
Susan L Susan L is offline
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Friedbrain

Hi - Dont give up - I dont have much to offer other than hang in there - ask as many questions as you can - research as much as you can. I dont understand what you diagnosis is but we are here to help each other. Reaching out is good and you are not alone.
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #3  
Old Thu Aug 22, 2013, 09:13 PM
curlygirl curlygirl is offline
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Friedbrain,

Do you live where you can go to another hematologist? For my son's Aplastic Anemia we visited three hospitals - one happened to be Johns Hopkins that does things differently than anyone else, then two doctors that do ATG/Cyclosporine. Aplastic Anemia is usually autoimmune related. I'm not saying that's what you have but autoimmune diseases, including Aplastic Anemia and Systemic lupus erythematosus (SLE), can mess with your bone marrow, and the first line of defense for Aplastic Anemia is immune suppression (ATG/Cyclosporine) if you don't have a matched sibling donor.

Hopefully all will be fine but it is good that you're looking into it. If it is Aplastic Anemia many people with a mild case can go without treatment. Severe and Very Severe cases require treatment. My son's case was Severe.

I think they always run a cytogenetic study on the sample, to determine if there is a chromosomal issue or not. Here is a great thread explaining a cytogenetics report.

http://forums.marrowforums.org/showthread.php?t=3773

I'm sorry that you are going through this and I hope you have answers soon!
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  #4  
Old Thu Aug 22, 2013, 09:29 PM
LizR LizR is offline
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Friedbrain (I love that! Sounds like me some days.)

Do you live in a town with a cancer center? I live in a large city and I was told more than once that the best hematologists here are always in a cancer center. Even before my husband was dx he had to go there for a consult. Our Family Doc researched them for us. Time is precious. I'd get another opinion as soon as I could.
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  #5  
Old Thu Aug 22, 2013, 11:30 PM
Greg H Greg H is offline
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Hey FriedBrain!

I echo the idea that you might want to get a consult from a more communicative hematologist, maybe at a big cancer center, maybe an MDS specialist.

I'm not sure you should trust the 30%, since the sample wasn't all that good (I had one of those once. Not a fun thing.) But they should have been able to give you some results from the aspiration (that's the burning part where they draw blood out of your marrow before they grind the chunk of bone and marrow out of you. The aspirate, as I recall, is where they would find dysplastic forms (messed up baby blood cells), as well as a blast count.

The core is where they get cellularity. Most folks with MDS have too many cells in the marrow (hypercellular), but some have too few (hypo cellular) and some (like me) are normocellular, but still have MDS.

Folks with Aplastic Anemia are pretty much by definition hypo cellular. You are right about the age 46 = 54% normocellular.

Definitely get a copy of the report. If you have trouble puzzling it out, folks here can help.

And get a new doc who talks.

Good luck with the new job!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #6  
Old Fri Aug 23, 2013, 12:51 PM
Friedbrain Friedbrain is offline
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thanks for feedback

Susan, that's probably because I don't have a diagnosis yet! I have autoimmune problems and since my blood cells tanked when I reduced my steroids, I think this is a likely cause. But I can't go on a med for autoimmune problems until I rule out bone marrow problems.....but the bone marrow biopsy was a bust.

Greg, thank you for the ideas of what to look for in the report. I also thought that they were supposed to look at the sample *right there in the room* with a microscope to make sure that they'd obtained a good sample before wrapping me up. I wish they'd done that and realized they'd wiffed. I do NOT want to do it again!

Liz and Curly, this was a doc (but a young newbie, I think) at a cancer center, but I will soon be working in the center of the main hospital campus. I bet there's better, more experienced docs there. It will just take time before I have flexibility at work to take off for more doc appts. On the upside, I'll be able to walk to them!
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  #7  
Old Sat Aug 24, 2013, 09:12 AM
Marlene Marlene is offline
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At some point you may want to consult with doctors at Hopkins. The High Dose Cytoxan treatment used to treat SAA has also been used in other autoimmune diseases like lupus, MS, scleroderma, etc.

They won't treat moderate AA with HiCY but if your autoimmune issues are refractory to treatment, they may do Hi CY. It has the potential to address many of your issues.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #8  
Old Sat Aug 24, 2013, 09:53 AM
Susan L Susan L is offline
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Hi Fried

Hope you are doing some better - and I know it is frustrating not knowing and waiting and going thru tests and still nothing - been there - done that - how about one time finished biopsy and laying there and plop there it goes dropped - then another time while aparatus still in - they leave the room saying I've never seen this before - I was like hell I am laying here people - (it was hit wrong and hit spinal fluid - that was not a fun time) I went for years with no answer - then go to NIH as I was literally dieing and not able to hold blood - they patched me up - had a dx - of MDS and come home 2 months later and go to hematologist I had been going to and he says - I still dont believe you have MDS - that was a nice kick - Boy I got off on a tangent - sorry - Ask questions over and over - and if it dont feel right ask more and go to someone who you get a good repore with. Thats all I got for now - What state are you in? Best wishes -
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #9  
Old Mon Aug 26, 2013, 06:07 PM
Friedbrain Friedbrain is offline
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Report says.....?

I received a copy of the "Final Report" (tho it says that cytogenetics are still pending). I have No Clue what any of it means, though. Probably absolutely nothing, just like the doc said.

a) peripheral blood: "mild red blood cell macrocytosis without anemia" (just a petpeeve, but as a scientist, I gotta call out Bad Science when I see it, and this was just AWFUL "science". The data used for this was NOT on the day of the bmb....he didn't draw a CBC for correlation...... AND it was taken on a day when I was sick, so my neutrophils were increased only time, other than an ER visit for inflammation, in 1.5 ys that neutrophils haven't been decreased)
b)bmp and aspirate:
1) "Apparently hypocellular bone marrow with trilineage hematopoiesis (see comment)"
2) "bone marrow biopsy and aspirate are suboptimal for interpretation"

"Comment: morphologic review demonstrates a bone marrow biopsy that is predominantly subcortical with prominent aspiration artifact and marrow dropout, which is approximately 30% cellular with trilineage hematopoiesis. The marrow aspirate smears are aspicular, hemodilute, and inadequate for interpretation. Blasts do not appear increased, as confirmed by flow cytometric immunophenotypic studies"

Gross description states: "Received are an aspirate (part 1), biopsy, flow cytometry, and cytogenetics. Many dilute aspirate slides submitted for processing. Part 2, bone marrow biopsy, is received in B+ fixative labeled with the patient's name. It consists of a single core of tan cancellous bone measuring .8 x .3cm with an unattached piece of brown friable clot measuring .6 x .3cm. The specimen is completely submitted to histology for decalcification in block A"

Fwiw (cuz I don't understand it), Flow Cytometry on the bm says: many granulocytes, less than 1% CD34-positive blasts, approximately 2% CD14-posotive monocytes, a moderate number of heterogeneous T-cells, a few natural killer cells, and very few polytypic B-cells"

Me again, with questions.
1) shouldn't they have done a CBC on the morning of the bmb? The report also notes "peripheral blood smear was not available for review", which I'm guessing means no one has looked at it, and it wasn't available as part of a routine bmb because of this.
2) I had my bmb done at the hospital, with all sorts of equipment and an entire team of people swarming around. Shouldn't someone have looked at the bmb Right THEN under a microscope to make sure it was a good sample before cleaning me up. ???
3) They did immunohistochemical probing and staining on the sample, but then note that because the sample had been decalcified prior to this step, it increased the possibility of false negatives.....so, um, why?
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Old Mon Aug 26, 2013, 06:55 PM
Greg H Greg H is offline
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Hey FB!

Boy-o, boy-o, you really hit the jackpot (not) with this BMB.

Given that the aspirate is the blood they pullout of your marrow, the only way it could be too dilute to be useful is if someone messed up the sample in the procedure room or the lab, I think.

So you got jipped on both parts of the biopsy. The pathologist doesn't seem to hedge his/her bets on the 30% cellularity, so it looks like you have too few blood making cells for some reason -- AA, MDS, vitamin deficiency, there are lots of possibilities.

I take it there was no mention of dysplasia or dysplastic forms in the report. That would be important, since finding broken blood cell precursors tends toward a diagnosis of MDS.

The problems with the samples shouldn't affect the cytogenetics, since they just pull out 20 or so cells to do that. That will at least tell you whether you have something chromosomal going on.

During the BMBs that I have had, they always do a finger stick after the procedure and make a bunch of slides. It's always been my impression that this is the blood they use to make the peripheral blood comparisons -- not a CBC from another date.

I'm betting you're not going to get a diagnosis without enduring another BMB.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #11  
Old Tue Aug 27, 2013, 04:40 PM
triumphe64 triumphe64 is offline
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I'm not sure where to post this article about autoimmune disease.
Right now you only get a tease. I bought the hard copy, but maybe your library will have old copies.

http://www.newyorker.com/reporting/2...a_fact_orourke
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #12  
Old Tue Aug 27, 2013, 06:28 PM
Whizbang Whizbang is offline
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Synopsis:

http://annesigmon.com/blog/new-yorke...mmune-disease/

Quote:
Originally Posted by By Anne Sigmon
New Yorker essay shines a spotlight on the scourge of autoimmune disease

For autoimmune patients—and I’m one of them—life sometimes feels like a lonely uphill climb:


“getting sick for no good reason, falling prey to esoteric infections and mysterious skin outbreaks, sliding into spells of lethargy and exhaustion that looked so much like laziness it was maddening.”

Excerpt from A Stroke of Bad Luck and the Potholed Road to Recovery


In her essay “What’s Wrong With Me” published in this week’s New Yorker (Aug. 26, 2013), author Meghan O’Rourke shines a spotlight on what it’s like to live with autoimmune disease. Recounting experiences all too familiar to autoimmune patients, and to me, O’Rourke describes:
•symptoms ranging from hives to migraines, buzzing in her throat, numbness in her feet;
•terrible fatigue that made her feel like “a mechanism that moved arduously through the world, simply trying to complete its tasks. Sitting upright at my father’s birthday party required a huge act of will.”
•her brain often “enveloped in a thick gray fog”
•a susceptibility to viruses (in her case cytomegalovirus, parvovirus, and Epstein-Barr)
•a family history sprinkled with various seemingly unrelated illnesses that (she learned later) are all autoimmune in nature.



Like many autoimmune patients, O’Rourke rattled from doctor to doctor for years before any of them believed she had a disease. “Many clinicians assume that the patient, who is often a young woman, is just one of the ‘worried well,’” she writes. Finally, after six years, she had her diagnosis: autoimmune thyroiditis, often called Hashimoto’s, the same disease that plagued my grandmother.

I missed the the doctor-to-doctor crawl because I had no clue that my body was harboring any kind of illness until I was felled by a stroke caused by my particular autoimmune disease: antiphospholipid syndrome (APS).

O’Rourke writes movingly about what it’s like to struggle with a debilitating condition—autoimmunity—that no one, even specialists, understands well.

The lack of knowledge is shocking to me, considering the magnitude of the problem: The American Association of Autoimmune Related Diseases (AARDA) estimates that as many as fifty million Americans suffer from autoimmunity—a greater number than cancer.



There are somewhere between eight and one hundred autoimmune diseases, yet “autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century,” O’Rourke writes. “Some researchers say the number of cases is rising at almost epidemic rates.”

At times during the course of searching for a diagnosis and treatment of her illness O’Rourke questioned her own sanity:
•“Was I going mad?” she asks.
•“The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self.”
•“To be sick in this way is to have the unpleasant feeling that you are impersonating yourself.”



“It was a struggle,” she writes, “to do anything—to teach my class, to tidy the house, to go to the gym. My joints hurt, my neck hurt; I had nosebleeds and large bruises up and down my legs. I spend hours everyday unable to work …” This situation is all too familiar to me and other autoimmune patients.

Like many who suffer from autoimmunity, O’Rourke found information and solace in on-line support groups, “people, rich and poor, who were connected by one thing: the inability of doctors to alleviate their symptoms.” She also turned to diet hoping to mediate her disease. She followed a diet similar to the so-called Paleo regimen: “no gluten, no refined sugar, little dairy” so strictly that, while it did ease some of her symptoms, she spent “at least half of each day” shopping for food, eating, and cleaning up.

“What I had wasn’t just an illness now; it was an identity, a membership in a peculiarly demanding sect. I had joined the First Assembly of the Diffusely Unwell …”

But O’Rourke realized that she didn’t want her life to be defined by illness.

Echoing the concern of many autoimmune patients, she writes: “I worried that I would no longer have friends.”

“The chronically ill patient has to hold in mind two contradictory modes: insistence on the reality of her disease, and resistance to her own catastrophic fears.” Amen to that.

O’Rourke’s thoughtful essay has much more to say about autoimmune disease and her experience. Anyone concerned about the scourge of autoimmunity should read it. If you’re not a New Yorker subscriber, you can find this issue at newsstands this week, or order a single copy from The New Yorker here.
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)

Last edited by Whizbang : Tue Aug 27, 2013 at 06:32 PM. Reason: add link
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  #13  
Old Tue Sep 3, 2013, 08:09 PM
Friedbrain Friedbrain is offline
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thank you

I appreciate the autoimmune article-sounds so familiar :P The problem is that with my blood counts, the rheumatologist won't try any medication until the hematologist gives the go-ahead, and he won't until he's reassured the low counts aren't caused by something wrong in the bone marrow. And he can't do that unless he does another bmb (You are right, Greg). Interesting that you point out that the pathologist "doesn't hedge bets" on the hypocellularity, and like you stated, in her report, she gives all sorts of possibilities-diet, autoimmune, blahblah.... But, as the hematologist said over the phone, there is NO way of concluding anything regarding cause, because the bmb was botched...without doing another bmb.

Haven't received cytogenetics info yet from the bmb; and the blood test that they repeated 1.5 wks ago, they haven't released. Getting info out of them is like pulling teeth.

Oh, and I'm now getting the bills for hundreds of dollars for the botched bmb, too. Seriously? I can't believe they are still going to charge me for it, after all that.

I left a message asking to get a referral near my new job (easiest way to get a new doc). We'll see.
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Old Wed Sep 4, 2013, 05:59 AM
Cheryl C Cheryl C is offline
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It's disgraceful that you can't get the results for your own pathology test. I do find that the pathology people will mostly not give them to you, but when I request them from the staff in the day care infusion centre they willingly print them out for me. If you are having infusions/transfusions perhaps you could ask there.
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Old Wed Sep 4, 2013, 08:29 AM
Marlene Marlene is offline
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You're not alone when it comes to having to pay for medical supplies/services when they've messed things up. We've been stuck with meds that were incorrectly prescribed, medical supplies/tests we didn't need/order, and a BMB that was botched too. And that's just the tip of the iceberg. The consumer has little power. It takes a lot of effort to fight some of these things and who has that kind of energy when you're going though a serious illness.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Wed Sep 4, 2013, 12:00 PM
LizR LizR is offline
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Friedbrain -

We are fortunate that our Dr. provides copies of all the test results as they come in but we request a copy of the medical records at least every other month to check the clinical notes. The test results are in there too. We request them because sometimes by the time the notes are dictated, the Dr. has changed or omitted things. We also voice memo every appt to make sure we have it right. With so much going on it's too easy to miss something important. There was a change in transfusion rate that never made it in the file and it was a real problem when the Dr. was on vacation. Now we check and there is no charge for it at our office.
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Old Wed Sep 4, 2013, 06:07 PM
Chirley Chirley is offline
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I know I've complained long and hard about treatment centres, doctors etc BUT it all boils down to one problem and that's lack of communication.

I've noticed that since I've been more forthright that things are running a lot more smoothly. I don't keep my mouth closed now because I don't want to be seen as overbearing or pushy and then feel resentful when things go wrong. I speak up quietly but confidently now and it seems to be working.

Now, if I want test results I just say so straight out. I say it confidently and let them know by my voice that I EXPECT the results. The same WTH treatments, appointments etc. I should have been like this from the start but didn't want to seem demanding. I've decided "so what" they will just have to put up with it because this is my life we are talking about.

Chirley
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