LMayberry
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May 2, 2017 at 11:17 pm
I have been wondering if they might approve sCig that they could give me here. I am paying the SNF bill, so the insurance shouldn’t care where I’m at. It cost me $7500 a month, so I will be out of money soon, as I have been paying for over a year now. My pension, SS and disability leave me a couple of thousand short of paying the bill every month and I can only afford until the end of this month because of my tax refund. My savings for retirement are gone, and I’m still trying to hang onto my house.
My copay for the hospital stay was $1400 for the five days, but I also had to pay the SNF to hold my bed at $250 a day. Trying to stay alive sure is expensive.
May 2, 2017 at 9:48 pmJim-LA
I had some one come in to tell me that Physical Therapy will,start again for me tomorrow. But I am having a hard time getting them to understand that I have poor stamina, and getting out of bed and into a wheelchair is exhausting, but sitting at the edge of the bed doing leg exercises is a good use of the short amount of time we have. So far, I haven’t gotten anyone to read the PT guidelines for CIDP.
It is so hard dealing with multiple issues that come under the specialties of several doctors. I have Blue Shield PPO that is paid for by my former employer until I get Medicare. Then I have to battle with the nursing home. An infusion service wanted to come to the home to give me IVig, and they wouldn’t allow it, and they wouldn’t let their nurses do it, so I wound up having to go into the hospital for the infusion. I don’t think they are going to allow that for any more rounds. The infusion center doesn’t want me because I can’t walk. It is a real Catch-22.
May 2, 2017 at 11:53 amI requested and got a spinal tap when I was in the hospital four weeks ago. The protein level was in the high normal range, so not conclusive. No big change after the IVig, but a noticeable difference after the Prednisone. Being diabetic, Prednisone is not a really good option for long-term.
My neuro just seems to be banking off in doing anything until I get seen by UCI, but my financial resources are running low. All of he delays in treatment are so frustrating. It took over a year to get a diagnosis, then another four months to get the IVig.
Now I have the four month wait for anything else to happen.
May 2, 2017 at 1:59 amJim-LA:
Thank you very much for the link and info on Cedars-Sinai.
I am fighting many battles with several doctors right now to get treatment. Because I can”t walk, I was hospitalized for the IVig treatment four weeks ago. During that time I had daily blood tests that show that I am very anemic, so I spoke to my medicine nurse this morning about maybe we need to find out why my daily iron pills aren’t taking care of this.
Next week, I am seeing an orthopedic surgeon about fixing my right foot. My ankle got broken December 2015 the day I was discharge from this nursing facility after recovering from a skin graft, but having lost my ability to stand or walk without extreme dizziness and weakness. The skin graft was done after getting necrotizing cellulitis of the posterior and being hospitalized for 5.5 weeks at Long Beach Memorial Wound Care Unit. The day after I was admitted, I could still walk, but after a few days of treatment consisting of multiple IV antibiotics, pneumonia and flu vaccinations, being put into congestive heart failure and getting a blood clot in my right arm from clumsy attempts at starting the IV, I lost the ability to sit up and I sure couldn’t walk.
It had taken me a year and a half to get a probable CIDP diagnosis, but Blue Sheild of CA is not making my life very easy.
April 27, 2017 at 9:21 amI was diagnosed with CIDP right after Thanksgiving 2016. It took forever to get the okay for IVig, but I finally got it March 29- April 3. I have had a horrible time with my sinuses going back to the end of January, being treated with Claritin, Mucenix and a five day round of antibiotics. The mucus is so bad I have had to sleep almost sitting up.
I cannot walk, so I was hospitalized for the IVig. While I was there, it was decided to do a spinal tap to hopefully confirm the CIDP diagnosis to make my insurance happy. Before doing the spinal tap, my neuro requested a brain CT which showed severe sinus disease.”
My neuro decided to follow up with five days of Prednisone last week (April 19-23) and I noticed that the sinuses got better. But I need to add that I take eye drops and I believe that they are what is irritating my sinuses and am taking that up with my eye doc today.
But I think that CIDP is caused because of the immune reaction. The immune system is in overdrive which probably makes allergies even worse, or it could be the allergies that make the CIDP worse.
I started having problems about the time that I have a massive amount of dental work done, having my old mercury fillings removed. Since 1980, I have had a known sebere allergy to the mercury-based preservative Thimersol, which is used in vaccinations and eye drops. I have wondered if the dust from having the fillings removed caused my weakness.
I was pretty weak bust still able to walk when I wound up in the hospital in September 2015. About five days into my stay, I lost the ability to walk, but nobody cared because I was being treated for a skin infection.
It is a very long story about all that has happened since then, but I am in a nursing home now and still not able to walk, mostly due to a deformed right foot after having my ankle shattered when I tried to explain that I couldn’t walk but they insisted on me showing them.
The Prednisone had helped with my strength the last few days, by my Physical Therapy was cut off two days into the Prednisone. I am battling to get it back. After 17 months and just finally getting treatment, I am tired and frustrated.
