Dear Terri,
Will be lifting you up in prayer for sure. Wow, such heavy details to try to
encumber you. HoWEVER, I know you will rise above it because it's how we
handle it with our mind, will and emotions that makes ALL the difference. I am
so sorry to hear about the kidney and the possible Multiple myeloma. Remember
we are all here to encourage you in your fight. You are a warrior like the
rest of us....you can do it!!! If you want to talk, I can private message you
my phone number....
Blessings,
Susan
"Look among the nations and watch; be utterly astounded! For I will work a
work in your days which you would not believe, though it were told you." Hab.
1:5
-----Original Message-----
From: Terrijeff20 <terrijef...@aol.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sun, Aug 4, 2013 9:25 am
Subject: Re: [CMLHope] Re: Just wondering if anyone has gone through unrelated
bmt for...
Well, in addition to all of this. My oncologist saw a significant amt of
protein in my urine test from nephrologist. She ordered a 24 hr urine test
which showed microclonal protein. Which warranted a bone marrow biopsy on
Friday. They are now looking at possible multiple myeloma.
In the meantime saw my nephrologist whom said ultrasound showed left kidney at
7.5 cm to which she says it is no longer working at all. I'm living off of 21%
of my right kidney. She wants a transplant consult but needs to wait for biopsy
results as if I show positive for multiple myeloma then I can't do transplant.
I discussed disabiltiy continuation with her and she says people on dialysis
are not disabled. So she can not state that. Only submit current medical
records and state we are managing chronic kidney disease. I'm not looking for a
new disability just for the ckd. I am only looking to continue with all my
combined issues and limitations. Ugh!! This seems so stressful and so unfair.
How in the heck am I to prove myself to a possible employer when I have appts
weekly and tests. Not to mention fatigue and sleep issues. I just don't get
this whole system.
Thanks for allowing me to vent and please pray for good results from my bmb
which I should get this Wednesday!!
Terri
In a message dated 7/31/2013 3:34:24 P.M. Eastern Daylight Time,
icandoall...@aol.com writes:
Hi I am told that remission only means temporary and it can come back
anytime. A good doctor knows this. Your case is unbelievable.
Fight back as hard as you can. Sorry you are under so much stress.
Many prayers and blessing to you.
Jeanie
Sent from my iPhone
On Jul 31, 2013, at 1:07 PM, peg <peg....@live.com> wrote:
Hi Terri, I have been on and off of social security disability for many
years now, but have never lost my Medicare. Firstly....if you have a
lawyer who isn't certain you can win this..FIND A NEW LAWYER! This a more
than a win-able case. Also, be absolutely certain a re-determination was
filed...it will almost always be denied at the first and 2nd levels. The
rare exception to that is if you meet personally with a social security rep
in your local office who decides to become your champion...the key to this
is LOOK DISABLED! And also paint a daily worse case senerio picture of your
life, otherwise they don't get it...they think what they see is what your
life is like. (sorry about the italics...something glitched!)
Please see this Medicare Publication which explains how persons needing
dialysis and/or transplant are eligible for Medicare:
www.medicare.gov/pubs/pdf/10128.pdf. However, it appears it only covers
the dialysis/transplant related treatments and does not kick in until the
fourth month of dialysis. So it is not a perfect solution for you.
The better direction for full Medicare is to show that you are disabled by
this condition and reopen your original disability claim. But, be
careful how your doctor files this...if it is filed as a NEW and separate
disability you will have a six month wait for disability and another TWO
YEAR wait for Medicare. However, if you can show that the disability is
"the same or related to" your original disability, as in kidney failure due
to BMT related chemo for CML, your original claim simply reopens and your
disability and Medicare is effective immediately. This is crucial to
getting Medicare quickly! You are still well within the window of time to
reopen your disability without having to start it as a new claim! See this
article...it explains all of this:
http://www.disabilitysecrets.com/resources/disability/reopening-a-social-security-disability-claim.h
Another, but less desirable, option that will buy you a bit of time if you
are well enough, is to go back to work...even a little work...people on
disability related Medicare, who remain disabled but go back to work, can
keep free PART A Medicare for 93 months...after that you have the option of
paying for it ($243 a month) indefinately. Those who are eligible for Part
A may also pay for PART B (the part everyone pays for) and are eligible for
PART D. Once you stop working you are allowed to keep paying for your
Medicare, and if you refile for disability and everything in the previous
paragraph still applies. But again...not a perfect solution...much better
to file to re-open due to "complications" as described in the paragraph
above.
The fight here is to prove that you remain disabled, working or not, in
order to retain benefits. My feeling is that you want a lawyer and doctor
who will fight for that...rather than the idea that you were unfairly
target and cancelled due to cost of medication/treatment. The latter is a
much longer and riskier battle. Talk to several lawyers...they almost all
do free consultation. Tell them you don't want to die fighting this battle
and pick the one that you feel will best champion your cause.
On a more personal note, there is life while on dialysis. My mother lived
a full active life on dialysis for seven years before succumbing to
complications from another illness. Her personal choice was to take the
very early morning treatments, so she could nap for a couple of hours after
and still have her whole day available. She even took a cruise that
offered onboard treatments.
Be strong...fight on!
peg
On Tuesday, July 30, 2013 6:24:59 AM UTC-7, terri wrote:
Hello,
I was diagnosed in May of 2000. Started on interferon and arac. Moved on
to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission
until 2011. Everything quit working and I had to go with transplant at
Johns Hopkins. They were terrific. I was put on disability. So now I am
two years out and just became eligible for Medicare on June 1. I called
to get drug coverage and they calculated the cost. Two days later I
received a cessation of benefits, stating cml is in remission. I should
be able to get a sedentary stress free job.
In the meantime starting Feb, I developed headaches and high blood
pressure. Creatinine went up. I was referred to a nephrologist with a gfr
of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys
are dead and dried up, this damage as I understand is irreversible. Since
then I have dropped twice to 11% gfr and currently am at 21% which puts
me at stage 4 chronic kidney disease. Severe function loss.
Has anyone else dealt with this? I'm looking at poss transplant which
they don't even know if I qualify as I am only 2 yrs remission from cml. I
still take 800 mg tasigna daily to prevent it from coming back. So my
other option is to prepare for dialysis. I am only 45 yrs old.
Had to hire a lawyer to help with ssd, no guarantees he says. Just a lot
to deal with all of a sudden. Would love to speak with someone who has
gone through this or knows of anyone.
Thanks,
Theresa Migut
Johnstown, Pa
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