Hi Terri, Your doctor doesn't know what she is talking about dialysis and disability. If and when you have to be on dialysis then as far as social security disability goes, you are in fact considered disabled.
Go to Google and type in, are people on dialysis considered disabled. How do I know about this? Well, I am on dialysis three times a week for more then four hours each time and I am considered disabled and on Medicare. You might want to let your doctor know that if or when you have to be on dialysis it takes up a lot of your time and sometimes after a treatment you don't feel well enough to work. I have a few suggestions for you. First, find out if any of the medications that your currently taking have anything to do with your kidney failure. If so then perhaps you can switch to something else. Lower your protein intake and see if your kidneys are "spilling" less proteins. Start drinking more fluids. If you are not diabetic then start drinking Cranberry juice is is very helpful to your kidneys and flushes a lot of the toxins out of them. Something else you should know. As your kidneys fail they limit the production of a hormone that goes to your bone marrow to help produce hemoglobin and as such you start becoming anemic. Once this happens you feel weak and tired because oxygen is not going to feed your mussels as well as it should. If or when this happens your doctor should be giving you either Procrit or Epogen injections. I am currently on Epogen and it does help me considerably . Whenever you get a blood test make sure that your levels of Creatinine and your BUN levels are included in your tests. You may also want to ask your doctor to do a 24 hour clearance test for your urine to actually see how well your kidney/s are clearing out the waste products. Even though your Cratinine and or BUN levels may be a bit high it is that clearance that really matters. I am looking for a kidney transplant and am registered at four different hospitals in Florida. Hopefully once I get back there after the summer I may be able to get that transplant. This would be my second transplant. I had a bone marrow transplant for CML more then twenty three years ago, and now hopefully a kidney transplant will come next. It seems that there are enough body parts in me (after the kidney transplant) to make a double of me. As it is now, I am what is called a Chimera, meaning that the blood type that I was born with, O+ has turned into B+ which was my bone marrow donors blood type. Since bone marrow doesn't have to be the same blood type but solid organ transplants do need to be of the same blood type, being a Chimera my body can accept a B+ kidney or since I once was O+ and that being the universal donor, my body can also accept a O+ kidney, but that would have to be from a live donor. Terry, if there is anything that I can help you with then all you need to do is to ask me. If you would like to speak with me on the phone then just email me personally at wa2...@juno.com and I will send you my telephone number or if you want, just send me yours. Terry just one final thing... If you feel down and depressed about all of this then my suggestion to you is don't. Just look at me. I have gone through all of this and I am still here dealing with all of this, but I don't let any of this get me down and I try to live my life as best as I can, and I am enjoying my life to the fullest, and so should you. 18's and the very best of luck. On Sun, Aug 4, 2013 at 9:25 AM, <terrijef...@aol.com> wrote: > ** > 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 >> > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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