Dietitian seeking patients' point of view

[RenalDietitianJenn]

I found your website while reading an article in the Nephrology News & Issues journal and had to check it out for myself. What a wonderful medium to hold forums for patients! Here's a little about me:

I live in Southern California and started working in dialysis as a dietitian about 4 years ago. My clinic has 235+ patients, most of whom are Hispanic and don't speak English. I have 66 patients who are undocumented, but because of a diagnosis of ESRD, they qualify for state-funded medical insurance. It is up in the air right now if those patients will be able to continue to receive California's generosity because for the first time ever, the federal government is asking our patients to provide documentation if they are citizens or legal residents and/or birth certificates. In the past, all they had to have was a diagnosis and they got covered...no questions asked.

We as health care providers in California are terrified of one day, maybe soon, of slamming the door on all of these patients. Some of them are as young as 19. I understand that some Americans may feel differently about providing health care to foreigners, and I respect opinions of others. It would be one thing if California, like all other states, would deny coverage in the first place and send them packing back to Mexico to die. But California DID allow them state coverage and now it seems as if they want to take it away. Surely you can imagine, being a patient, if one day your nurse said, "Sorry we can't dialyze you anymore unless you pay completely out of pocket". My patients are poor and don't even have money for food sometimes and I really don't want to witness having to turn ANYONE down.

I am venting my story to possibly shed some light on those of you who are fed up with dialysis and take for granted that you are a citizen and maybe don't realize there are people also receiving dialysis who are MUCH, MUCH worse off than you. You are the luckiest ones of all. Being able to live in a country where access to health care is a given, and medications are a phone call away. Please don't misread my message as a lecture and I know many of you are affected by Medicare's donught hole and have to pay for your own medications and receive huge bills from your dialysis clinic. I care about all of you and I'm just telling my story of what I see in Southern California with undocumented, chronically ill people every day.

My company is also on a Health Mission and we are donating old (still in working order) dialysis machines to other countries. Camaroon (Africa) is one that we're starting with. We are setting up a dialysis unit in a hospital in their capital city. Can you even imagine living in a country where they tell you you have kidney failure and there IS treatment to help you live a fairly normal life and have hope for a transplant, but sorry, we don't have that technology in this country and you have to go home and die a slow, miserable death? I know you all hate dialysis, but it's to our fortune that we have it.

I have to say that I am as guilty as the next for taking our health care system for granted. For EXPECTING my doctor to educate me on all the alternative therapies there are for what ever condition I may have. To EXPECT a medication exists to treat my condition, and to EXPECT that my insurance will pay for it.

Since working in my clinic for 4 years, my attitude has completely changed. I NEVER take for granted all that we are given as citizens. To even be able to have a driver's license and a social security card, and a job, and good insurance, and a car to get me anywhere I need to go....and my good health most of all. So thank you to all of you for teaching ME something. I admire your stamina and will to not give up. I admire your strength. I admire those of you who no matter how many times your body has failed you, your mind still stays positve and you just keep on going forward. You are my inspiration and my reminder and my REALITY check 40 hours a week. I love all of you and want to help any way I can. Please email me with your questions. I know many of you may not have great dietitians working closely with you. I'd like to change that.

Jennifer




EDITED:  Moved thread to proper section - Goofynina/Moderator

[Sara]

Thanks for sharing your story.  I look forward to reading more of your posts.

[angieskidney]

Wow what a good post! Thank you for that You can really tell you care a LOT about ALL your patients!

[Joe Paul]

Welcome to the board. However, id just like to remind you, that even though there is healthcare available, its something most Americans who pay taxes, have paid for, its not a handout. With that being said, again, welcome.

[MattyBoy100]

Hi Jenn,

welcome to the site.  I`m in the UK but it`s not all that different from the treatment in the states.  One thing I think we would all like and I`m not sure if it`s been posted on this site already is a list of foods and their phosphate level.  I believe we have already had a potassium list.  You know, a list saying for example what the phosphate leve is in a 200ml or average size glass of milk etc.  Can you get hold of this???

[Bajanne]

I really appreciate your joining our community.  I like to think that we encompass every part of this great renal failure experience.   Having someone like you on board is very special, and I look forward to your (needed) input.

[thom]

dietricians are awesome. the two i've had know exactly what i should be doing, if i get a transplant it'll be weird not having her around.

[mallory]

Jennifer,  I agree, I feel so sorry for people who can't afford health care, or don't have access to it.  I know I get concerned because I'm definitely not wealthy, and this has been a financial drain on me even though I have insurance and a good full time job.  I can't imagine going through this without insurance.

We are glad to have you join the site, we could use your advice.  Sometimes it seems like there's nothing that we can eat or drink that's good for us, it's just a matter of eating and drinking the least harmful things.  That sure makes your choices difficult! 

Again, welcome!

[Rerun]

Jennifer welcome to our site.

It will be a sad day when no one can afford health care and Medicare goes BROKE because of dialysis patients documented or not.  Thirteen ER hospitals have closed down in Southern California due to illegals taking "advantage" of our health care system.  I'm personally tired of paying for everyone who "can't" or "won't" pay.   

Yep - Send them packing.  Send your "still in working order" dialysis machines to Mexico!