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  1. TopTop #1
    ErikaLynn's Avatar
    ErikaLynn
     

    Need a Little Bit of Help

    I realize that most folks donít know me, but I could use a little bit of help. I am trying to find someone who can gain a bit of traction with the right people.

    I recently found out that I am terminal without direct medical treatment and oversight. My diagnosis which is : Rapidly Progressive Nephritic Syndrome with Diffuse Crescentic Glomerulonephritis; Chronic Kidney Disease (CKD) Stage 4 Gfr 15-29 ML/min; P-ANCA and MPO Antibodies Positive was given to me by Sutter Regional Hospital in Santa Rosa.

    ďThe simpler term is Rapidly Progressive Glomerulonephritis (RPGN) is a syndrome of the kidney that is characterized by a rapid loss of renal function, (usually a 50% decline in the glomerular filtration rate (GFR) within 3 months) with glomerular crescent formation seen in at least 50% or 75% of glomeruli seen on kidney biopsies. If left untreated, it rapidly progresses into acute renal failure and death within months.Ē https://en.m.wikipedia.org/wiki/Rapi...merulonephriti

    My admittance to Sutter was arranged by my primary care Russian River Health Center, Jennifer Herman NP on the 25th of March 2019. While being a patient of Sutter assigned me Sandra Borrows MD a Nephrologist. Dr. Borrows has been wonderful, the problem comes with the fact that apparently Dr. Borrows is a Ďcontractí doctor and is not actually within the Sutter system. My diagnosis requires not only her help but also the oversight and treatment of an Oncologist / Hematologist as well as an infusion treatment to save my kidneys as much as they are able before more damage is done. Because of Dr. Borrows is a Ďcontractí doctor with Sutter she is unable to get me not only a Oncologist / Hematologist through Sutter but Dr. Borrows office is currently working on contacting a third hospital that may be able to give me an infusion that I need once a month. The referrals department not only never contacted me but simply dropped the ball entirely. Dr. Borrowed office had sent out a referral through Sutter for the Oncologist / Hematologist and had assumed it went through, because why would it not right? It didnít. No one contacted Dr. Borrows office to tell them that there was an issue. I had a question about my very heavy medication and was able to speak to Dr. Borrows on the phone. At that time I asked her about the infusion treatment. She was confused as to why I hadnít already seen someone.

    I called Sutter, was passed from person to person. Nothing can be done because of Dr. Borrows being a Ďcontractí doctor. They have no offered to change my doctors, which Iím not against or for, nothing. They keep repeating that it is a technicality of a doctor they assigned me after being admitted to their hospital. They expressed surprise that I am taking control of my treatment but I am a sole surviving parent, single mother of two teenage boys and am 35 years old, death is NOT an option.

    At most can file a grievance, which does not fix my problem in the long run. I am terminal without heavy medication. This needs to be fixed, something needs to be done. What if the next person this happens to does not call? Has this happened to anyone else? I had had nothing but wonderful things to say of Sutter up until this point. Even my stay at Sutter was wonderful for the horrible moment in my life that it was. The staff there was absolutely wonderful.

    I just finished building a website for my illness because not only are there few survivors, but very little information for the consumer. Iím a graphic designer and building it has been my coping strategy. I only finished it last night, IHaveRPGN.com . I would very much appreciate some help. Iím so worried about this happening to someone else. I have sent an email to Catherine Barnett of the Press Democrat on the April 18th, but Iím honestly not sure if that was even the right person to send an email to. The situation is time sensitive.

    Thank you all so much for your time!
    Erika-Lynn
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  2. Gratitude expressed by 7 members:

  3. TopTop #2
    sealwatcher
     

    Re: Need a Little Bit of Help

    The most compassionate columnist at the Press Democrat is Chris Smith. Erika, please contact him tomorrow, explain your situation as you've done here. Thousands of people read Chris's column and I feel certain that someone will read it and be able to help. It is after all a technicality and what is that to your life?! I wish you well and will follow your story and will now go to your website. Thank you for your courage in reaching out to us.

    Quote ErikaLynn wrote: View Post
    I realize that most folks donít know me, but I could use a little bit of help. ...
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  5. TopTop #3
    ErikaLynn's Avatar
    ErikaLynn
     

    Re: Need a Little Bit of Help

    Thank you so very much, Sealwatcher! Iíll contact him! I very much appreciate your well wishes and engagement. Yes, a very strange and difficult technicality at such a critical moment in my treatment. Thank you so very much for your time!
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  7. TopTop #4
    Karl Frederick's Avatar
    Karl Frederick
    Supporting member

    Re: Need a Little Bit of Help

    I'd also ask Congressman Jared Huffman for prompt help in resolving your dilemma, ErikaLynn. It's amazing how a little political assistance can be very helpful in encouraging people to do the right thing.

    BTW, though I don't know what your options are, I happily recommend my own nephrologist, Dr. Eric Cheung, in Santa Rosa.

    Quote ErikaLynn wrote: View Post
    Thank you so very much, Sealwatcher! Iíll contact him! I very much appreciate your well wishes and engagement. Yes, a very strange and difficult technicality at such a critical moment in my treatment. Thank you so very much for your time!
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  9. TopTop #5
    gardenmaniac's Avatar
    gardenmaniac
     

    Re: Need a Little Bit of Help

    I forwarded your post to a friend of mine who is hospital administrator (alas, not here ...); here's what she said, I hope it helps:

    "What a terrible situation.....I donít really know what I could do to help. She needs an advocate

    Has she called chief medical officer at sitter?

    Or department of health?"

    Quote ErikaLynn wrote: View Post
    I realize that most folks donít know me, but I could use a little bit of help. ...
    Last edited by Barry; 04-24-2019 at 01:54 PM.
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  11. TopTop #6
    ErikaLynn's Avatar
    ErikaLynn
     

    Re: Need a Little Bit of Help

    Hi Gardenmaniac,

    So far I have called as far up into the Sutter complaints department as I can go and am awaiting a returned phone call. Nothing on the Sutter site has Ďpatient advocateĒ which had been suggested, so Iím currently trying to sift through it and find who to talk to that the ladies I had already spoken with hadnít directed me to as of yet.

    I have tried to file a complaint with DMHC but since it isnít my health plan but a hospital that is the issue it got kicked back.

    I have reached out to my insurance and have asked for a case manager.

    I have also reached out to two folks over at the Press Democrat and am working on sending an email to our congressman as suggested. I am hesitant to reach out to 7 On Your Side, which was also suggested, due to the stress I am already currently under.

    Just as of a short while ago my Nephrologist office was able to get ahold of another hospital that can see me. It was third and last one on the area before I would have had to go a fair distance, so Iím very happy about that! Iím only able to do so much right now.

    Iím still in shock that my treatment will be possibly 3 weeks late because of a technically. Especially since my case is so time sensitive. Something really and truly needs to be done so that this does not happen to someone else.

    Thank you so very much for inquiring of you friend on my behalf, I very much appreciate your time!
    Last edited by Barry; 04-24-2019 at 01:55 PM.
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