Thanks everyone! I am staying positive. Also I wrote microclonal protein and it's monoclonal. Duh. Can't think straight either! lol Appreciate all the prayers, I know God is listening and he will get me through. Terri In a message dated 8/4/2013 12:20:21 P.M. Eastern Daylight Time, bkbar...@aol.com writes:
Terri, Just wanted you to know that I read your emails and am praying for you. I hope Wednesday BMB goes well. Thank goodness you vent, the stress of all you are enduring is so profound. I, like MIllie, hope for the best, but want you to know what is exactly going on and then they can make a plan to address the issues. I am so sorry you have to live with one thing on top of another and another...I have great empathy for trying to work, yet knowing you should be on disability..and how broken the system is. You need to catch your breath....keep on checking in, vent as you need to. I think most of us understand the fear and pain you endure..so breath in, and know we are with you and we really do care. Hoping for the best...keep us posted, Beth -----Original Message----- From: Susan Zimmerman <rszim0...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Sun, Aug 4, 2013 7:59 am Subject: Re: [CMLHope] Re: Just wondering if anyone has gone through unrelated bmt for... 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 <_Terrijeff20@aol.com_ (mailto:terrijef...@aol.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto: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, _icandoallttc@aol.com_ (mailto: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.hss@live.com_ (mailto: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-sec urity-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 -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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