Transplant Insurance Coverage: Does anyone... - Kidney Disease

Kidney Disease

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Transplant Insurance Coverage

Mhusband27 profile image

Does anyone have a suggestion about who to consult regarding what will be paid by my Humana Advantage Medicare policy for a kidney transplant? I asked my Transplant Center Coordinator and she (curtly) replied that I had to research that information.

BTW: For those just recently put on dialysis or anticipating same, you have an opportunity within the first 6 mos. from the date of starting dialysis to "buy in" to a Supplemental Insurance policy (before you are 65 yrs old) and that in some financial hardship cases, AKF will help by paying the dialysis patient's supplemental policy premiums. I did not know this, my Humana sales rep did not inform me, and now I have to wait 2 more years to get a Supplemental Policy. Keep this in mind.

I don't know where to turn (except Humana, which is like pulling teeth to get answers from!). Any suggestions?


30 Replies

I have Traditional Medicare and I got sick at age 36 I am now in my early 50s. I know Medicare covers dialysis 80%. Then the 20% most of the time you get a copay for the med visits after, they can also be written off by the doc. You can also apply for SSD for a Transplant too. Medicare covers the Transplant meds and offers the Extra Help with the Med Part D. So all the meds are covered. For a secondary you can also try applying for Medicaid. At least in my state N.J. you can. The Transplant Centers have Financial Coordinators in my Hospitals I was on the list with. Dialysis is covered by Medicare. The 20% is what you will be billed on my doctors which can all be worked out. Everything will work itself out. I would contact NKF and ask you what resources they can send you too. The Foundations are what gives you the info because that is what they do. They can give you what the docs, hospitals and centers can not or have time to. NKF got me through all the way. For my own circumstance my choice was never to use anything but the Original Medicare. Traditional Medicare gives you the freedom to see your own docs and you don't get tied into extra monthly payments you do not need as well as the donut hole that was created with it. As one source you can check The Medicare Rights Center They have Extra Help Bacsics. It discussses fully the Extra Help that comes with Medicare Part D Low Income Subsidy (LIS) (which covers all my transplant meds. Also Medicare Advantage for those who have ESRD. You can look up online their pdf. Differences between Original Medicare and Medicare Advantage. It has a comparison between the two on the second page. I have had it on my bulletin board both pages for several years. It comes in handy when coming across those in your life who can benefit from this info. I know an elderly disabled person who is using the Medicare Advantage and in this area has to pay $131/mo and she doesn't even use it. She goes to docs after several months apart. So when they don't understand or know what they are doing they can get into situations that make things worse. You are phenominal in your proactiveness as that is key but this is one example of the research you will be doing. But what leads you to such info, which for me was the center of all my docs/dialysisctrs/and transplant were NKF and AKF and such. For me mainly was NKF throughout. Having just come out of this and had to do it with no guidance.. the centers have financial coordinators but my coordinator didn't tell me. The Financial Coordinator is a separate dept. Its best to research and listen to those who spend their career devoted and can dedicate all their time to you. Those are the Foundations. NKF was my core. I then would advise anyone with any illness to go to that diseases foundation. I did also learn that NKF Diabetes Assoc and Heart Association had a symposium a few years ago or longer. They know those these three go hand in hand. SO much progress and development has improved in my area the past 18 yrs. Plus they can give you info and dedicate the time to you, your docs either from their time constraits and/or due to they can't because they are bound by insurance and other regs, meaning these sources can tell you what these other places cannot. NKF can tell you about SHIP etc. I did everything by phone and they sent all the pamphlets on everything. I am looking at my book case now. Stick with the Foundations they will guide you through. NKF Saved my life. Hope this helps or can be used as a parallel on how to seek info.

Wish you all the best!

Thank you for taking the time to reply and give me suggestions. In addition to the GA Transplant Foundation, i will contact NKF as you suggested.

BTW: I applied for a Waiver with Fresenius Dialysis Center for the amounts over and above what Medicare (Humana) was paying for my dialysis supplies, clinic appointments, blood tests, etc. Fresenius now writes off the amount that Medicare does not pay.


Oh just a tidbit... becareful writing your name. I understand we are not supposed to. It can always be edited :) .

Ok. Thx.


LMAO I Love that "Anonymous" that was my name on a fun online group unrelated to here. It ended up coming out Anoymous ha ha ha. You have a great sense of humor. Ty for clearing that up below. I had forgotten you were in GA.

Yea..I can see that "Anoymous!" Ha ha. You are a bit more cynical than me about money-grubbing corporations and doctors, but nonetheless, I am cynical too. Working for lawyers most of my career made me cynical and suspicious about motives. I believe my Nephrologist is the "Real McCoy" b/c he is very patient-oriented. I attended a holiday luncheon/get-together with fellow PD patients at my FMC clinic Friday. It was unanimous amongst the patients there that our Nephrologist (who has a private practice and is the clinic Neph) is a genuine patient-oriented man. I have never met a doctor who gives his patients all the time they need to ask questions, etc., and he isn't looking at his watch to see how fast he can cut the appointment short. He is the real deal and a genuinely nice man. I am sure he would agree with most of your opinion about other medical facilities and doctors. He doesn't hold his peers in high esteem (since so many overlook the symptoms and labs pointing directly toward failing kidneys!).

So...I guess there are exceptions and it is too bad that there are so many "bad apples."

Have a great Thanksgiving!

Oh I am so happy for you that is great news! I have a great Nephrologist now. Oh wow my last job was working for Attorneys. :) I am very glad you have the support you do. I am cynical because I had learned. The things that happened to me just doesn't happen in my area, not even realizing it was happening to me too. I was just new to dialysis and switched into a corrupt facility. The facility has nothing to do with the Nephrologist they are separate entities and situations. I had a long relationship with my doc it was like staying in bad relationship. If found one speaking to someone in Foodtown who was coincidentally a lawyer on dialysis. I kept the card for 2 yrs and finally the day dialysis was to begin things got so bad i went for a second opinion and grabbed her. Best thing I did. Only I kept my seat at the center which he was the doc to and she had privledges. I had some problems on hemo as the PDRN I knew since 2004 left on cancer leave. I didn't know who the leaders were and that was my problem. Had I known it would be different. I had 7 surgeries to get me on PD Dialysis over 10 months. So I had to go on hemo and wait a month for the last surgery. i switched that week after my surgery to the other center i had checked out and kept as a Plan B beforehand. I switched into a nightmare corrupt facility. I did not know that my doc hired apartner while I was at the first center and while I was at this other center and she was now in her office office when i transferred to the other center, i only saw her PA. The corruption was with the PD RN who later recruited her click the LPN and MSW. And I never knew the partner was my doc too and they were going to him since day one. And they falsified 200 pages of my 600 pg records. The other 400 were hemo where i got along with everyone but i was so so sick. And htye knew me as I met them at the other center. I went to LPN School and already was trained in PD twice bothwithin 5 days. They were 8-10 yrs older than I. I thought we were fine until as I have a unknown way throughout my life where people finally show themselves. Honesty and integrity does that. It's a long story. Although I hadn't seen the movie since the 70s and don't remember it I kept feeling the thriller was similar to the movie coma. For 364 of 365 days I had my nose above water and it was daily and endless. I was only to have hemo incase of emergency and 6 wks healing and 5 days training after the PD catheter. Which I did but he catheter surgeries had to be redone 3 times. So emergency Hemo came. These witches as I came into the center the month before Storm Sandy Hit and 10 min from the beach on the shore I be. It was a nightmare. Storm Sandy was easy. But I had not clue for those extra 4 mos what they were doing and behind my back this lunatic was saying i couldn't be trained etc when the LPN was the one who trained me in manuals my last day at the other center and ipicked it up instantly and she said I'd do fine. But I was alone with the PD RN those 4 mos and as the LPN was in FLorida.Then it just escalated. I Bougth the whole center pizza and Olive Garden and that is when she flipped out. Slammign doors that was first indicator but I overlooked it. I didn't see until she showed herself face to face to face Jan 28t and then I had to do something. They were sending me the wrong size syringes for 5 mos they had during snow storm I ran out of manuals and in the ER said get her and pick it up. When for the entire they kept showing up unannounced at my house. THey had me be at the center every single day after i'dg get home. They didn't provide me thesupplies to do dialysis and turned around and blamed the patient. They gave my aid the wrong syyringes too. They were a sick click bullying into mobbing. They tried everything literally to kill me I just wouldn't die I was too pissed. I htought because they knew my NKF Director and with my own proactiveness and education we were good. My best friend was Murdered. and I foudn out the day I was to start dialysis and on the year anniversary of her death and Bday they escalated. They had me borderline transfusion in February, I crawleed to my office and and climbed up my chair to the desk and pulled down my manila folder in April. I knew that was my signal to fight. I downloaded the phone records thanks to cableoptimum they keep them for 129 days. I kept records of everythign half dead. Coincidentally in Feb on Facebook I saw this video from DialysisAdvocates. And what i what I heard I could not believe these patients that even parapalegics were sent home from these centers. But that Southern California that doesn't happen here where I live and I had not realized that February it was happening to me. It was March when it dawned. They had me in the ER every Saturday Night for 6 wks. I was trying to a 12-10 schedule and they never let me. And never told me i had to have 10 hrs inbetween the dialysis to start and here I was in 6 hr because they were relentless. No matter what I did thinking I was in good with the FA these girls had control of that center because my doc was offsite. I didnt' see her until I toldher in June. To the last day, this was fun for them but they did it to the wrong person. I called the Renal Network in JUne and found out the MSW who these sick chicks .. I thought we were good for 6 mos but they showed themselves eventaully. She contacted the Renal Network to have me blacklisted. Here I am fine no problem just sick. I found they do this routinely to many others. THey can't be sued or touched I tried. They caused a bad fall and permanent spine damage. But when my doc found out.. and then FA tried to go against me and my doc saying the doc has no power which is true over the Dialysis Center, that I when I got transferred to my original center who was more than happy to accept me back. I only transferred because the first center I didn't nkow who was in charge. They lost my hectoral in the computer for three weeks. I always checked and asked for my labs. My PTH was beyond anything ever high and then they kept complainign because i was so sick that I had to swing my legs for 30 minutes to get my bp to 100 and they wanted to go out and party. AFter my surgery i was home and woke up with blood all through my abdomin. They Head Hemo RN who was my buddy and the leader I never knew was a leader every one was on vacation. A new PD RN was there who didn't know me. I was told ot come to the center. Then told there was an hour wait so I just drove to the diner. THey had to carry me out ot my car. I couldn't eat i was so sick. I drove don't ask me how I hadn't had the medicaid or aid yet.. and I was in the parking lot and called for the center to bring me a wheelchair. I got chewed out on the phone. Then i fell when I opened my door to get out onto the other car. Here this one comes with a wheelchair yelling and complaining she's not allowed to bring this to me the parking lot they don't have insurance for. She brings me a wheel chair with no legs or place ot put your legs so shedragged me backwards as I am yelling back at her at this absudity dragging my feet and legs across the parking lot. I Get up the ramp and the young smart ass kid they put in charge who sees us arguing has to life my chair up off a 2 inch bump. I get inside the lobby and i am try to use my legsto pushy myself to the door to enter into my hemo treatment. This one stops me and plopps on the waiting room couch with her arms and hands behind her head, saying "Now lets talk about this.". I Just kept moving my legs to the door. As she gives me that look we had our words and I forgot what I said pointing out this absurdity whenthe PD RN Shows sthey babbled and denied me dialyiss. I got up i was furious and somehow grabbed walls doors and down the ramp eventually made ti to my car and drove to my surgeon. He after he sees the bloody stomach and fixes me up this is 12 hrs after my surgery the day befroe mind you, the final PD cathteer one, he siad he called the center 'and they allowed me back" I came back and everyone else was there my buddies int dialysis and 4 guys picked me up and carried me thorugh the center to my chair. This one comes up trying cover her butt. I usually say a different word. She was nervous as she should be. Next time I come back everythign felt different. I coudl feel it. And i was right no one was talking ot me. And at the end ofhte night my buddy the head RN was back from vacation and I just noticed her demeanor so i was me and just talked normally to her then asked her what was wrong then she and someone esle was there heard me. Because i so put everyone straight. I already had tranferred the day after my surgery I started that and that was the 21st of Aug I was in the other center Sept 1st. But this day My Hemo RN Just sat down devastated as to what happened. They had to a blood test and the next time I come in I see the leader of this center and this was all from me being a new patient. had I known who to go to, I never would have transferred and I wish I never did. The FA and whoever title the other person was while on dialysis came to my chair. And in front of all I told them what happened. I am a lawyer innately ha ha. And they listened and I mentioned the Hectoral thought is was no problem (as i kept up on my labs, I tracked my labs day one since 10 yrs prior with the LabLogs NKF gave me which were from Amgen. I used that and the 5 to 10 yrs i was given is why I made it to 10 yrs before dialysis. At my transplant my coordinator screamed as they wheeledme down the hall my name and that I was the most proactive patient she had ever known and that was so true. I thought every one I was dealing with was professional and that we were on the same page. I did not learn until through all this that my other doc told me, a nurse can fly across the country to Nebraska and walk in and get hired on the spot. These are just anyone in public they hire off the street and at the the center i transferred into I ended up with a person who cruel and pysychotic which she herself inthe end 10 months later came to me ,when I wasn't speaking to her, and me silent offered up her obvious issues disclosing her abusive childhood. I stayed silent. You don't do what did to this patient all year, but you certainly don't talk to patient like this. An RN is not supposed to tell their patient their personal issues RN. She is a vindictive psychopath. But getting back to my last day at the first center, I had already had the transfer done, and after they spoke with me, the Hemo Coordinator was fired. But I also asked about my labs. And then I see them running around as they forgot... So I was about to leave and my buddy who I adore the Head RN was in tears. which is a shock in itsself. She said she was old fashioned and she apparently in my words here, told off the staff. Saying I was sooo sick I was afraid to eat and they did this to Me. She in tears grabbed my hands and said my name and that my hematocrit was 7.2 and 7 is a heart attack. Ok so I was mad because I was knew and by myself as I have been through every step to this day by myself. But they were simply a good center who made mistakes and corrected them. But what I transferred into was the worst hell and corruption I coudl never imagine. The PD RN was the puppeteer and she had full control of the center. MY doc offsite, me offsite, me entering during storm sandy and not knowing the new doc for a year the partner and all along she and her click were going to him and the Director of the center I never met. I only spoke ot my PD RN and my docs PA who was not the new partner. The center closed and they were merged into the large one immediately after I transferred. This was a small facility. Both centers were 6 min from where I live in opposite directions. Through all this i had read the ByLaws at the second center. I did learn about their inhouse patient complaint center as that is exaclty what it turned out to be. I did half dead call teh Renal Network. was always one step ahead. Why? Because of the info I got from NKF that led me on my trek through research as the experience will do. A month I was suddenly handed and Interdisciplinary Team Mtg report they wanted me to signwihtout reading. Nope. When you first go to the center like i did at the first one. A profession PD RN as mine was the very best in the area as my surgeon said, and who I knew since 2004 would sit you down go over each page and have you sign. THis other cetner had me while beyond ill and in their shennagans in 30 min had a stack and forced me to sign all without reading a thing. They delayed me getting my records on purpose for 6 wks. They left out an important document that HQ never got that I have. I have everything. And I can't touch them. When you sign into a center you sign your rights away. When I told my doctor oooh. let me tell you. They continued the next to months but when I got suddenly handed in July 5 IDTS at once that were created in January before I realized everything they went to risk mgt ot have try to have me involuntarily discharged. Every time, i thought the FA and I were on the same page and level professionally, managerially. She went on a business trip that day they continued. Two weeks later after an agreement to have my aid pick up my supplies shots etc they had the new parnter I never met try to say they'd hate to stop treatment on me. They were playing him i knew instantly. I used my professional jovial voice and stayed me, correcting it all with him. This was 2 mos befroe my doc found out all. It was an endless unknown batttle. The PD RN wa snot my focus I had multiple deaths the year before which they knew of. This sick chick this silent puppeteer which in the records the LPN doesn't get she sets up as the fall guy and the MSW who was located 45 min away. This was a thing where no matter she did i wasn't paying attention she wasn't my focus. It was like I was walking along a mountain seeing my finish line ahead of me and they started throwing tomatoes at me. I kept tredding pace pace pace. I simply bent my body forward. Then they started throwing rocks I simply curved my back out of the way. Then it became boulders, I simply bent down picked it up and on my pace. All the while fightin wiht a central line in my chest needlessly and intentionally left in my chest for an additional 4 mos making it 6 mos tellng me on my 4th month I can die after 3 and I had no clue. I was walking on my cane to the center door you had to go thorugh to get to the PD Room and the Hemo Coordinator in this second center (not the one who was fired) screams down the hall from her butt sitting on the chair, casually, "Got to get that central line out of you, My Name, you are and infection waiting to happen." I stopped shocked and said "What???! " she goes, "Oh yeah you can die after 3, a central line is most prone to infection." She didn't even look up from her desk. I then make it to the PD Room standing next to the PDRN as the Dietician for a first time comes in and sits down simulataneiously saying I was soo sick. I replied standing next to the PDRN "That's because they left a central line in my chest!" When I spoke I spoke ot all generally . I didn't know what was going on. I was being polite because this RN was not like the I knew since 2004. She was older. She would stand with her arms folded and silent and listen. More passive. I was respectful. She said she had 40 patients, it was during and after Storm Sandy. Yet months later in the hospital I was told that was illegal for her to have 40 patients to herself. Here I was just sick> And on the birthday and the first anniversary of my best friends murder of which particularly intentionaly chose these dates for certain things such as the fall she created that permanently damaged my spine, of which she falsified records but I have all the proof still sitting in its place all 600 pages just of my proof on my desk aside from the records. It was a fight the end. They behind mine, my docs, the FA but she was part of them anyway and the Director and Partners back. I had sent a certfied letter and my FA flipped out when she called and I had gotten the records and was furious. They had labelled me a false diagnosis. And the FA had no clue until my letter and speaking with me. I said this is character assasination. And a few days later came in for a blood test and that was wehn I was handed all these IDTs and they were having me involuntarily discharged. but the day before I as I always had to be 24/7 one step ahead called to check on the trasnfer thati Requested from my doc's partner i finally met the year later. I told my doc in June and set up an appt ot me him. That transfer was never pu through he just wanted me to deal with the girls. THey got to him since day one. I knew he was not my doc. SO I called the secretary. She coincidentally was going through abuse in her personal life, she got me into see my doc the next day which the appt time was right after this blood test in her office in a differnent town. I was at the center. getting this blood test. So when I was alone with The FA who I thought was on my side when they were playing good cop bad cop she copped out said on hte steps I am just a manager here. But when I got the IDTS and she discharging me I said I got a tranfer back to my old center already this week so she was then helpful to me and told me ok I will state this here and you sign here. I has refused to deal with the PD RN the past 2 mos and its like every time I home or approval to be away from them every single day they created hell andevery day I fought back it was a challenge for them. So I told thsi FA I wanted a meeting with her and my doc only. She said whatever I say is subjective and only htey are objective. I wrote for the 2 wks all this up in 25 folders. But directly after this blood test and them sending in this sophmoric like 60 yr old who ran out of no ran upto me to sign something all smiles thigns I sigh all the time I forget what it is but she knew I'd put no. See they own your but literally. You sign your life away to them. For example I wanted to bring in a tape recorder to tape them and even that is their right to involuntary discharge you. The By Laws are on behalf of the corporation not the patient. And they tried to label me a difficult patient. No I was sick, jovial, educated, and patient. I gave this woman time. When i got the records she was falsifying them since the very first week. I had so many legal terms for all their corruption, I did extenstive research don't ask me how I just saved myself. It was that secretary. Because this day I get to my docs office.. having already left my first nephrologist which was a completely different issue, he was whipped by his office girls, I understood how this was going to make it look like i was me as I also left his dialysis center which hemo was a whole separate issue. So the first words out of my mouth favored the FA. Then we sat as she listened and I said everything which she already knew what these girls did on the anniversary of my best friends murder. I said that the PD RN, LPN MSW I mean when I said "they" were in charge. That is what did it. My doctor showed me she picked up the phone and pointed it up to show me then dailed the former center and their leader I heard on speaker saying she was more than happy to have me come back. And when she hung up she said to me "I'm in charge" and it was go great of her to show me she had my back. She's the best to this day. The best thing I did was go to her. Her secretary who is no longer there sadly, when I came out of the office to her nonchalantly handed me a manila folder with a look a nod and few words slipped it to me. Later I open it, it was the records to my former center. That said the direct opposite of what their false records state. I was raised by my aunt, uncle and 7 cousins who were 7 to 15 yrs older I knew as my parents and siblings from a month to age 4. They are all doctors who live 5hrs away. Accept one who all this time lived 8 min away. My father managed to keep me apart from all from 35 yrs. Anyway, she I got back two weeks befor everyone I spent my life with passed in 2011. My cousin her husband is one of my docs and his brother created a wing at the hospital the dialysis center sends the patients to. I didn't tell my cousins a thing. I haven't the rest in decades. They live in another state and I only met the brother twice. However I sure as heck said and bluffed to the FA that on my last which was this conference room meeting I let the FA and all them sweat for 2 weeks that I was coming with all my doctors my cousins. Ha ha. When I came and sat at the head fo the table. I was asked by the FA first words where they were. I said they had lives to save. I was here with a 50lb briefcase or 25 folders of evidence i never needed. The tension between my FA and doc was shocking. I have no clue to what went on but I only got two minutes to speak and it was brilliant and the face the FA was guiit I turned the MSW into a mouse facing my doc and they protectedt he PD RN who was not there. it was office politics. All they did was wipe the slate clean with suddenly this IDT spotless clean as a whistle. When I left I sat in the car. I opened wha they gave me and yep sure enough i followed up the one page they left out with all my writing was blank. I saw the LPN who unfortunately is the unknown to her patsy, in the window I went back in an dmade sure gave me the real page. They were very reluntant in all their moves but I was relentless too. I had to come back in for a final blood test and they left in such bad shape.. after that briefcase too, it took 2 people where I can only walk a centimeter at time. My spine wa sthe bad on top of this new sciatica andit was 6 wks before i got an epiduralfinally but the FA kept scream forus to get out they were closing she was pissed. Too Bad me andn this LPN and my favorite hemo tech helpeed md to my car. See I was loved in hemo. On Thanksgiving my Best Friends Bday I was taking care of her son and I won the lottery they said> And i know it was just my favorite RN Bought it herself ofr us a 19lb turkey with all the fixings. That was in beginning. I was there sept to sept 364 days of 365. And I also later in the middle of all in March brought over stuff to donate to other patients This woman helping me to my car my final daymy other fav RN i wanted to give some to take to her churche. But that hemo coordinator treated her like dirt and said no thats for the patients not for you to take home. I had enough for all. So during the hell as they purposely tried to delay me getting on PD 4 mos and still tried to delay my operation to cover their butt in what they falsified in the records, I said keep the date or let me die. The LPN was the softy. But when I got on PD they were daily. Get here in 30 min or we put down you refuse and it takes 20 min to get off the machine. I was bymyself through al this which they knew. The aides were 12 hrs a week. They never ever scheduled appts. It was unreal. They caused a heart murmer as they never told me about the tiem between solutions 10 hrs and they never let me get to my 12-10 schedule. I was on 5am to 3pm. So I was doing 6 hr s in between dialysis. THere so many things that aslong as I have typeed I have barely told you anything. I know all the legal terminology for it all etc. But by trying to help myself there was no one out there to help me. I had no recourse. In April I heard this Facebook newsfeed from dialysisadvocates and this woman and 4 patients on this Reverend King interview in Southern California or something. It was the patients that had me glued. The unreal things that took place. But it doesn't happen up here. Just knowing something existed was what had me be able to crawl to my desk to get that manila folder.That was a signal to me to keep going and fight. I had orthostatic hypotenstion, I had the flu, bronchitis etc and they were showing up unannounced they wouldn't leave me alone they played all these games have me come to thecenter and the machning broke during a snow storm and that morning they to got to ER and but make sure I Get theere at 4 to pick up the manuals when they would come to my house relentlessly. They timed when I got home and call instantly. They are sick chicks. But their tactics no match for me. I wrote to the CEO if he ever got he wouldn't care anyway that this PD RN was a nurse for 40 yrs how many patients with that actual label did she kill. I'll be damned before they would kill me. Though I should be dead 5 times that year. The LPN admitted in July that in April they had me borderline transfusion. That manila folder represents to me what ever ti does to anyone else. I was in no shape to do a thing.. but when I crawled all the way from my couch to that chair to the desk to reach on the hutch was like cliimbing Kilamanjaro, because I knew not then but soon I will get the strength to fight. Every day I did I finally downloaded the phone records which proves the date they caused sprained ankles, shoulder, and crushed lower spine which the PD RN falsified the dates and records about Me. And that weekend all that was spoken in the first emails from the MSW which I wrote up everthing the second I got home from the hospital, she replied she had no time to read. Which was perfect, because she blew it later not knowing I already had all in writing that May. When I got out a month later on line I typed in dialysisadvocates and then suddenly this .com of the same name appeared. And I spoke to this person and it was same voice i heard I realized at the end as the person on Facebook in that interview in April. I didn't have support to help me be me I needed. I had many tramas and I was at a different specialist no lie every single day for the next 4 months. I was never able to get in on a lawsuit. Now my PD RN I knew since 2004 left the original center and the other ones click took over both center. It wasn't until 4 yrs into this very beyond difficult transplant that in May I finally got my doc to tell me she won't send me back to those centers. Though they are the only ones i know of in my area . She said there is plenty of others. Its like the best kept secret these places. But The transplant was different. I was tranferred back to my original center and my orignial PD RN repaired my body in time for the transplant the following Sept. I will never forget her. My body is not the same from that place but I got neuropathy now i didn't have before from dialysis. The Transplant was different I enterred different things. I went from Criminal to Stupid I say ha ha. But I am finally here now this year since 2011. I was not at one funeral. And these witches can't be touched. I dropped left over solution to my original center after my trasnplant and who was at the desk but that LPN. Who tried to act all normal. I simply stared eye to eye. She knew I had my transplant. How I do not know. They keeping tabs? They are alerted I am sure. See I had no idea the PDRN was dealing with my other transplant. They falsified all the records on that too But they managed to get me kicked off the list from the one in the other state I was on. As I got on 2 wait lists. They left me so messed up after never missing an appt with them they caused me to miss 2 appts. And the final one was from the spine. But my state came through to the day. I am not of afraid of them. I was afraid of the endless stress I endured. But they can't be touched. I can't sue and patient can. I didn't die but many others needlessly did I don't need to prove that I instinctively know that. Oddly with in afew months after I got out i heard they did this to 3 other people. The chances of me ever knowing, when I never even heard of these dialysis places before. I was never sick a day in my life. i was misdiagnosed and wrong meds boom lost both kidneys at 22 and never knew until suddenly at 36. Got my translpant at 49. I since been on dialysisadvocates page. I heard of Dialysis Patient Citizens in 2004. I just mainly focused all my health from NKF> Because of what I learned how to get thorugh CKD habits developed that I took with me with Dialysis and now transplant. I swear by their Amgen LabLogs they no longer have. I knew my numbers and that is the key. Diet, exercise and knowing how to read your labs and knowing how to keep on top of them. When I got a uti in stage 4 they couldn't give me anything at the ER. But the doc was so impressed I knew my numbers he went and checked the PDR and he came back and said he can give me Cephlex at a lower dosage. At Dialysis asking the Nutritionist for my labs I was able to notice the PTH was beyond out of control high. This knowledge led meto ask question and they got the computer and find I didn't get hectoral for 3 wks. That's is what is most important. And don't let anyone or anything get in the way of what you need. Get a copy of your records always. The information I discuss about how dialysis centers work as corporations with govt and patients is from what I learned after I left from the site mentioned above from other site Nephrology news and stuff I read online. That is separate from my experience as that is on Corporate Govt level. On my individual level is oh I know Quality Insights works on behalf of the Centers' interest not they patients because the By Laws read it favors the corpation. The patient is a commodity in a contract. And we have very little real say in our protection. But not every center is the same. The original center was nothing like this corrupt one. And they were thrilled to see me in hemo when I visited. PD is a whole new staff and manager. I know not to go back there. However, I had my ambulance drivers request me because they had situations with their relatives in a different center in a different county. I have a great doc and I am aware of the reality of the system. We have no recourse to fight accept to transfer. Being aware is the best protection. I went in blind. I have learned so much more but its not for typing here. Its not about scaring patients its about having patients know to be aware and to always seek. Something is always out there to find to help you through. These foundations help, research helps. Everything does fall on us. I discovered this page on my Facebook newsfeed too as I follow NKF. We can learn the most among us here too. We are our own community and we can help each other get there. I wish you all the best with your insurance but you are already there with your doctor who is superb! I have always stood by doctors. I know because I was raised by them. But when it doesn't work you have take the plunge as sick as you are and leave to what fits you best. I have no grudges against my old nephrologist. We just didn't fit. His office girls played games with my uti when it could climb up and cause sepsis my Primary Care savd the day. He was at the hospital. He went away they ignored my refill on iron pills that went without the entire week. When he came he put me in dialysis early to not deal with his office girls but that led to coincidentally many surgeries afterwards. This environment I was in with him went on for 8 yrs and I had enough. The girls were unprofessional. My doc was my age, judmental and didn't like that I was on top of my care. He listened to them before me as well and stepped over the line. So the day before dialysis began I grabbed that card I had on my desk for 2 years and took that leap. Do you know I sent a letter telling him I switched and his office girls never told him. Two months later in dailysis I see him he came to me to do rounds i smiled and said "Hi' and instantly that young kid on the first center who denied me the dialysis that time which would be after this, jumped so unprofessionally in front of my face her back to him saying, "No no you can't see her she is not your patient!!" Here I was on hemo finally calm because I was in pain for 2 hrs, watching tv minding my business, a d he says in front of all to me, "You're unbelievable!" Yet I notified him in writing 2 mos earlier. This was typical. Another tech my favorite guy came up to me saying he looked disappointed. But look even my primary care physician tried to resolve us once before. Its hard for docs because they can be run by their office girls, but if you doc doesn't have your back its time to go. I am educated and I am proactive and I am alive because of it. However, when you

I want to add that I was prohibited from getting a Medicare Advantage Plan if already in ESRD. The question was asked by the Humana salesman and on the AdvantagePlan application I signed (I was only in CKD when I started the Medicare Advantage Plan). During this Medicare period's sign-up time, my Humana salesman said he was sending me an application for Humana's Medicare Advantage PPO Plan (I am currenly on an HMO). The very last question on the application was "Have you been diagnosed with ESRD? ___yes ____no". I could not lie, and when I told my Humana sales person, he said he "guessed" I needed to stay on the HMO Plan. Guessed? It is his job. He said he did not know they asked that question and whether they would deny the PPO coverage if I answered "yes."

So, I am not sure how you were on a Medicare Advantage Plan if you were in ESRD when you started the plan (since it is a Medicare provision and has nothing to do with the independent insurer, like Humana). Just sayin'.

Oh I am not on a Medicare Advantage Plan. No I am on a Original Medicare. I ignored all the advertisements offerin me to go into the Advantage Plan because it doesn't fit me. I know someone who is on the Managed Care Plan who has fallen in the donut hole and is paying monthly for things she doesn't need that month. That was my only issue with the Advantage Plan. I am ok without it. I had planned 10 yrs ahead and got it 2 yrs before the Advantage Plans were created. I was too young to be sick and couldnt get a secondary so I did the research and found out how to do what I needed to. Then once on dialysis I got a secondary. As soon as I got sick I applied for disabilty and got it. Found out after I was misdiagnosed. I then kept it because i knew its the only thing that would save my life as I was on my own. I then yrs later devloped PTSD facing a life theatening illness and some simultaneous traumas. I still remain with Original Medicare. I just took Medicaid as the secondary. I left the law office as I got my lifes dream to college and my first semester got sick. After 38 specialists in 8 months, I found out I had kidney failure in both kidneys from a misdiagnosis. I couldn't sue as by the time I found out the statute of limitations ran out. Everything happened all at once. I didn't realize about the date of discovery. I was full time in school beyond sick. I refused to let anything stop me. The info from my first semester at college helped me find so much information. A friend and college led me to NKF. I was on Deans List throughout, sick throughout since the first semester and in denial. When I graduated I came out with my kideys GFR down to 24%. I worked to get my muscles in shape for dialysis and the renal nutritionist was key. But you just keep exploring and researching. There is always a solution. You just keep looking. And in that quest for your answers you develop of habit of fighting that will help your body through dialysis. You just keep going and never quit. Everyone that found this website has the same innate skills. I hope you find the best answers you need for your insurance. It's not easy when they don't know the answers to what you ask. I know you will find all you need to know. Everything is going to work out. I also wish you a very Happy Thankgsiving! :)

I was reading EYatNKFSsvdMYLIF and I didn’t know exactly what the foundations do, but also I went to DaVita for a free class and they give you a lot of information and can walk you through all of the insurance. I am in stage 4, but they sent me all kinds of information and a follow-up phone call talking about work and insurance and told me to call back if/when I have questions about dealing with my work and insurance.

You need to be careful with the Dialysis Centers. Its always best to go to a neutral party. They give you info yes. But you will understand as time goes by. They have handshakes with insurance co and other entities. (Also should anyone suffer any abuse always check out should that ever occur.) But in terms of information you have to be your own main source as the Foundations can give you info for yourself. Plus the more the better. Think of the centers and insurance as they as bundling your cable and phone and internet under one company. Or the way the workforce was before the divestiture. Everything under one corporation vs Independent companies that are unrelated. A package deal vs your own choice or options. That comes with consequences to. You are here to benefit you. Companies are here to benefit them. Foundations are created from health providers and patients who already went through all this and they are just a start to info out there for You. That is what the research and info do for you, what answers that don't fit you it can lead to other sources that eventually do. Foundations give you info but they are just a start. They are just a base, a lift off platfrom. They set you onthe journey to learn how to research and find the things you need on your own. Its a lot and can be overwhelming but the more you know on all angles the more you find all you need as well as can protect yourself. Its a battle in a many ways but the more you learn the more armor you have. Knowledge is power. There is dialysis and transplant centers. But they are separate entites. CKD management guiding info to get you prepped to dialysis and transplant having your own which ever you choose and all resources foundations are their to provide for. I can attest having experienced it all its the only reason I am here. You have to be your own advocate. That gives you the power to know what is really happening because the classes by Baxter or whomever with Friensius and DaVita the main 2 centers in the US are all in it for the corportation and money. You are a comodity. Foundations have the people that are in it for the humanitarian effort. Granted they have sponsors that guide them but the foundations can answer questions that the centers cannot. Their is more politics in business than free info which can also be a source guide you can go to should any situation with the corporations come up. Also should anyone ever encounter anything untoward the Quality Insights info they give you at the centers to go to for complaints work on behalf of the corporations not the patient. Just like a credit card company has inhouse collections that work on behalf of the corportion. Foundations can lead to sources that are directly for You. Sometimes you just have to do it all yourself. Just know something else is always out there. So be guided by classes but always cover all bases. This way you will have the control in case you come across something that doesn't benefit you. You can act. Just a suggestion. This is my own opinion from my own experience. As I am among many who have. All will be okay. But its always best to find and consider the options when you are well enough to. You deserve nothing less than what is best for YOU the Patient.

I agree with you. I had to be my mom’s advocate when she was in the hospital. People think the social workers are there for them but they are their for the hospitals bottom line. I only talked about DaVita because they gave me a lot of information I didn’t know. I figured since they are doing it for free, there is something in it for them.

I was JUST Going to say that about the hospitals but I left it out. Their Patient Advocate is the same as the hospitals Customer Service. They work on behalf of the hospital not the Patient. This is the platform across the country the public is not aware. Hospitals are Corporations. Healthcare is a Corporate system. I can tell you they both major dialysis companies are a nightmare to all patients but even the patients don't know until they enter it. One CEO and we are the expenditure. A write off. But we make it through. I did but only because I was so pissed. I learned a world that know one knows until they enter it. Plus the centers don't allow you to have family members in their with you and you sign away all your rights the second you enter. But we have no choice. It's why important to have outside sources you have find you own way through. Some may not experience this or some may do and not know what they do. Such as what amount of dialysis are they giving what they do you don't see. If you are close to dying you become a write off. So you fight. Always get a copy of your records of which some centers will delay. You really do not have rights in these centers that have the handshakes with CMS. But is always good to be prepared. Info does that. From all sources not just one.

I remember a little from my father-in-law who was on dialysis for 8 years and my mother-in-law who was his caretaker. His nephrologist is my nephrologist and he said my mother-in-law was the best nurse he ever had. She’s not a nurse. She just wouldn’t let anything slip by her. They did hemodialysis at home. I’ll have to drill her a little more before she’s not around and see what else she remembers. She was in the clinic when he had to go there and she got to know the people there and they treated her really good because she wasn’t going to let the wool be pulled over her eyes. I don’t have anyone like her around so I have to be my own. My husband is kinda clueless and doesn’t like conflict so he’s not a very good advocate. Hopefully by the time it comes around I can teach him a little bit about how to fight for me if I can’t.

I hit the ground running and researching when I was finally diagnosed. DaVita was a rung on a step stool for me (especially since, as you identified, they tried to get me to change from my Nephrologist to their clinic's nephrologist). I've attended conferences, asked questions, done my own research.

This insurance thing is something I'm researching now (i.e., how much will my Humana Advantage Medicare policy cover on a transplant?). Since I am seriously considering participating in a transplant study (that will not pay for the actual transplant, but will only cover the study medications), the issue is a bit more prevalent in my mind. I was recently told that in Georgia, the wait list for an "O" blood type kidney can be between 8-10 years. I have been on dialysis only 3 years!

Thank you for your detailed response!

O is a universal donor!!! I am A- and I got mine 5 yrs to the day up here. O is the easiest to match. You may be get on sooner than you think. They also are bound by law what theyare allowed to tell you.

From a "blood type" website. "If you fall into the O blood group, you have neither A nor B antigens on your red cells, but both A and B antibodies in your plasma. O positive is the most common blood type; O negative is the universal donor type, meaning those with this blood type can donate red blood cells to anybody."

So......O negative is a universal donor, not O positive (my blood type).

"Up here". Yeah, I assume I could get a kidney faster if I lived in South Dakota....Wyoming....Montana? 🤔

oops I'm sorry I am used to saying "up here" as the most times I do I am speaking with those who live in South East.

I was just kidding. My personal opinion about why GA has a longer time on the kidney wait list is because ppl "down here" have high incidents of diabetes; HBP; lots of smokers; lots of lower income families whose diets are not the best. Just my opinion.

Oh lol or ha ha on the joke above. You know my nephrologist told me when I was first diagnosed to go down to Florida stay with friends or relatives and I could get a kidney within a year. Since your are that close did you consider trying another state? Granted its not easy you would have to have support. Trust me. But just a consideration I thought I'd pass on. I am so sorry you have to go through all this. Up here in NJ there is a 5 yr wait list, NY 7 -10 I heard. NKF had a symposium a few yrs back with the ADA and AHA as they concluded all three Diabetes, Heart and Kidney diseases are all conjoined. I don't have diabetes which you can get after transplant but so far I am not apt to. I still can get cancer as that runs in my family breast and bone but so worth the risk. I didn't just try one center I tried three and it came to the one in my closest area. I wish all the same comes to you. If you are on a wait list you may be surprised and get it the same year as the wait list they gave you. And know that its at 20% GFR you can start applying for the wait list. I learned that from NKF and it saved me. Most docs only tell you its at 15%. That is prime example how foundations help and other sources. Glad you are so proactive! Also Your opinion is correct. CKD is all about diet and exercise more than anything. But there are many other reasons people get this disease, mainly its heriditary. In some races they are more prone to get this disease than others. And like me, some can be misdiagnosed and lose both kidneys due to medications and misdiagnoses. Plus you are correct about those who live with lower income, because the food that they can afford is all loaded with sodium, cholesterol, fats etc. Many times those who have great intensions with Food Banks have canned food etc and that is what those like us most have to stay away from. It's so sad. You are also right about smoking and HBP because how you eat and smoking, is a major cause and detriment. The only way to be proactive in CKD is all about diet and exercise. You need to build your muscles up for dialysis. You need to limit sodium, phospherus, potassium and calcium as well as fluid intake. The best way to do that is to find a renal nutritionist. I never heard of one until I went to find sponsors for the NKF of Greater NY Walk I did. I had the wrong nutrionists, the regular ones and when I learned of a renal one she got my creatinine down from 2.1 to 1.7 in 6 mos. Then I stayed at 2.5 for 3 yrs following her meal plan. I only used one day, I have it on my bulletin board. I ate that for 6 yrs. If I had an egg in the morning i had pasta at night. I used the one day as a template to work around. Restricting fluid is key. I prepped 8 yrs for PD Dialysis and it was the best. But I ended up on hemo needlessly for 6 mos. On hemo the most important thing I can tell you is you HAVE to a full breakfast before you go for your treatment. I was so sick I was afraid to eat. My great Dialysis Head Nurse told me that. Have cereal eggs and fruit. In stage for the miracle drug for me was sodium bicarbonate. I didn't know I couldn't breathe until my aunt heard me on the phone walking. One little pill and it was a new world. I wish you a good feeling day to day and throughout.

Bassetmommer profile image
BassetmommerNKF Ambassador

I am not sure how old you are and where you live but in my area of NY we have brokers who do nothing but find you the best plan you need. They do not charge the client for their services, but bill the insurance companies. They are impartial. They will do a complete analysis of your situation and then give you the option to pick from several plans. This is for medicare age.

Kbressler profile image
KbresslerNKF Peer Mentor

My only suggestion or heads up is to make sure that your doctors except the plan. In our area they won’t take it. Just saying check it out before you buy in.

Mhusband27 profile image
Mhusband27 in reply to Kbressler

My Nephrologist accepts my Humana Advantage Medicare insurance. All of the testing to be evaluated for kidney transplant was 100% paid for by Medicare. I intend to call my Transplant Center's Financial Assistance Dept next week to inquire about possible charitable funds (some hospitals must accept a certain amount of charitable requests if the receive Federal dollars). I applied for, and received, financial assistance from a hospital (not my Transplant Hospital) and have had xrays, CT Scans, two hip replacements and my catheter implant surgery all free of charge to me (the hospital billed Humana, but I was not billed for anything Humana did not pay). It was a Godsend!

I have also contacted the Georgia Transplant Foundation, which helps patients launch campaigns and programs to get donations, and GA Transplant will match any donations I receive by 100%.

I am so poor that I can't even pay attention, so I need to work with GA Transplant to launch a campaign to get charitable funds! I may start a GoFundMe page to help me get donations but I really don't have a lot of friends and since I no longer work, I do not have a work support group.

Thanks for your suggestion.


Kbressler profile image
KbresslerNKF Peer Mentor

Sounds as though you have it under control best of luck.

Mhusband27 profile image
Mhusband27 in reply to Kbressler

Not really! I find (especially when communicating with my own insurance provider, Humana) that I will get several different answers to the same question!! But, I will seek advice from the foundations since they know the "skinny" more often than a minimum wage Customer Service Rep at Humana does!!

Yes and they may not have the info but can lead you to other sources. And in some cases through researching you enter your own path of finding sources. It's not really fair because we are so sick and have to do it all and many can't do this. Its just too much. I was by myself throught it all to here and I was lucky at 36 I was entering college adn contacted NKF right away. I was given 5 -10 yrs but because of NKF i made it to 10 before dialysis began but I fought from day 1 10 yrs ahead. Hoewever no matter how prepped when I entered Dialyssi and Transplant it was a 2nd and 3rd different worlds. You never give up. Til your last breath you fight you find you try. You have to remember you are placing yourself with strangers. Many will be good to you, many will not. Either way neither outweight your worth.

You might check with the financial advisor at your dialysis center. This person can probably find answers for you. I t might be time to seek out an experienced insurance broker who represents several companies. Agents do have different areas of knowledge and experience.

Try an insurance broker who can give you information about several insurance companies. Your Humana Agent did you a disrvice e by not giving all of the facts. I don't know what state you are living in,but if you miss the initial sign up due to disability, you may not get guaranteed issue ,but you may be able sign up when you are 65. In some states, like MO, insurance companies have to offer you at least on supplement without restriction or higher premiums. If you can get Plan G , you will have the most coverage for the best prices, and it will not go up as much as, say, the F plan. You will have the pay the Part B deductible, but that is minor compared to comprehensive coverage. I am ondialysid, and my journey led me to become a health insurance broker so I be informed and help other patients get the coverage they need. I am not advertising. I like to give helpful information for free. Good luck and keep us posted

Social Security has a special Medicare book just for Kidney patients that explains the ins and outs of Medicare for CKD.

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