I previously called the insurance about the first batch of "Explanation of Benefits" forms that show what they would pay. They were going to re-work all of them because they were wrong (and not paying anything). I got a denial letter on the biggest item, a CAT scan. I called and the lady said that whoever did it got the formula backwards on their paying 60% till the deductible is reached and then paying 100%. She said they would re-work it. I brought up a $450 urologist consultation that it said they were not paying anything and she said that it was because there was something in the diagnosis that suggested that it was a pre-existing condition. I said that would be crazy and that I'd know if I had kidney cancer treated before. She said they sent a questionnaire to the doctor and were waiting and that should fix it.
Ridiculous and immoral.
Tuesday, November 24, 2009
Monday, November 23, 2009
Surgeon
Dec. 22 for my surgery! Merry Xmas! The surgeon, Dr. Gill, has done more laproscopic surgeries than any other team in the world. His team has developed some of the techniques used.
Dr. Gill asked some history questions and typed as we went. This allowed him to have his report done while we were there and he gave us a copy. He explained how they will make 4 small incisions and not cut any muscle. It's a major surgery with a major vein that needs to be cut off. I'll be in the hospital for 2-4 days with 2-4 weeks further recovery at home. Normal "open" surgery is about double the hospital time and recovery time at home.
To get prepared for it they need to do a heart stress test, an MRI for the extent of the tumor invasion of the main renal vein (to know exactly where to cut it off) and a Mag3 test (some sort of scan) to see how my other kidney will handle the increased workload (is it currently doing 50% of the kidney work or less?).
Dr. Gill asked some history questions and typed as we went. This allowed him to have his report done while we were there and he gave us a copy. He explained how they will make 4 small incisions and not cut any muscle. It's a major surgery with a major vein that needs to be cut off. I'll be in the hospital for 2-4 days with 2-4 weeks further recovery at home. Normal "open" surgery is about double the hospital time and recovery time at home.
To get prepared for it they need to do a heart stress test, an MRI for the extent of the tumor invasion of the main renal vein (to know exactly where to cut it off) and a Mag3 test (some sort of scan) to see how my other kidney will handle the increased workload (is it currently doing 50% of the kidney work or less?).
Thursday, November 19, 2009
Ducks in a row
I have six court appearances in December. I set four of them to be done by phone through Courtcall yesterday. If one is too close to surgery, I'll have someone else do the call. I also taught my continuing education class about "Computers, security and malpractice" to three of my attorney friends. We have to do 24 hours every 3 years and I get triple credit for teaching so that's 9 hours for last night. I'm due to have the 24 hours done by January and this does it for me for another 3 years since I've done bits and pieces over the past three years in short classes I went to or audio listening.
Tuesday, November 17, 2009
Hospital entertainment
I posed the question to the listserv group of survivors about what to do in the hospital while on high dose IL-2 and a couple came back with answers one might expect (watch or listen to audio) while one suggested that not only will you not feel like reading, watching casual tv or listening to audio (except music) but that you might not even remember the week! Ouch.
Getting the second opinion
We went to the City of Hope yesterday and saw two doctors. One took more information from me and told us a lot about the treatments while the other was sort of the #2 man on the kidney cancer team there (which is about 20 doctors). They have an interesting trial going on, that I qualify for, but it would make more sense if I had already done a couple of the FDA accepted treatments. The trial involves giving you two medications: everyone gets this newer one that attacks tumor vein attachments (for nourishment). Some people in the trial will get Interferon (which is sort of like Interleukin) and others will get a medication like Sutent that attacks tumor cell receptors.
Dr. Pal said that Dr. Quinn is a great doctor and that I would be in the very good hands. He said that the high dose Interleukin-2 was the best initial option for a healthy patient like me in that it is the only treatment with evidence that it can produce a "durable" response (which a layman might call a cure although you are never "cured" of cancer since you do need to be checked very regularly). Other medications are very promising but too new to know how many years they might work.
City of Hope does not yet offer HD IL-2 treatment such as USC offers although they are putting together a program to do it. It is very nurse intensive because of the close watch they have to keep you under.
This was all very reassuring because it reaffirmed what we already knew and confirmed that the treatment suggested by St. Jude's Tumor Board and Dr. Quinn of USC was the best way to go.
Dr. Pal said that Dr. Quinn is a great doctor and that I would be in the very good hands. He said that the high dose Interleukin-2 was the best initial option for a healthy patient like me in that it is the only treatment with evidence that it can produce a "durable" response (which a layman might call a cure although you are never "cured" of cancer since you do need to be checked very regularly). Other medications are very promising but too new to know how many years they might work.
City of Hope does not yet offer HD IL-2 treatment such as USC offers although they are putting together a program to do it. It is very nurse intensive because of the close watch they have to keep you under.
This was all very reassuring because it reaffirmed what we already knew and confirmed that the treatment suggested by St. Jude's Tumor Board and Dr. Quinn of USC was the best way to go.
Tuesday, November 10, 2009
Seeing the First Specialist
11/6/2009: Doctor Quinn of USC was very impressive and accessible. His nurse practitioner talked a mile a minute but we'd read all this stuff on treatment on the internet and didn't get lost. After we give the "go", they'd operate soon with non-invasive laproscopic surgery by a doctor that we are told is a master of the procedure.
After the surgery, when I am functioning pretty normally (which should not take long thanks to the non-invasive surgery), they will need to do some preliminary stress tests to make sure that my body, heart and lungs can take the stress of high dosage Interleukin-2. When I start I'll be in the hospital for a week with lots of inter-venous doses every day and under close watch. I will feel terrible. I get a week off but I won't be real energetic. I do another week on and then wait about a month before the scan to check the effect. If it didn't shrink, they would test a couple weeks later because sometimes it takes time. If it does shrink then I should do a second month. Only 1 person of 220 had done 3 month cycles: everyone else just one or two. Two cycles of a month each is normal. Someone of my phys. makeup has "up to 25% chance of cure". It's been 5-15% but he says that I have a better chance due to my health.
They suggested Cheri (or someone that knows me well) stick around as much as possible to watch my demeanor in case I become confused or worse which means that it's affecting my mind and I they would need to tone it down. Yow.
If it fails, I would go on Sutent a couple months later or perhaps a drug trial at some later time. Sutent has milder effects and can cause some shrinkage but is not a cure. There are a few medications like that to try if Sutent does not work on me.
City of Hope no longer does high dose IL-2 so It's very unlikely that I'd be able to go there. They might even tell me to stick with USC because HD IL-2 is the only hope for a cure. But we'll see if Hope says something surprising. I see the doctor there on 11/16/09.
After the surgery, when I am functioning pretty normally (which should not take long thanks to the non-invasive surgery), they will need to do some preliminary stress tests to make sure that my body, heart and lungs can take the stress of high dosage Interleukin-2. When I start I'll be in the hospital for a week with lots of inter-venous doses every day and under close watch. I will feel terrible. I get a week off but I won't be real energetic. I do another week on and then wait about a month before the scan to check the effect. If it didn't shrink, they would test a couple weeks later because sometimes it takes time. If it does shrink then I should do a second month. Only 1 person of 220 had done 3 month cycles: everyone else just one or two. Two cycles of a month each is normal. Someone of my phys. makeup has "up to 25% chance of cure". It's been 5-15% but he says that I have a better chance due to my health.
They suggested Cheri (or someone that knows me well) stick around as much as possible to watch my demeanor in case I become confused or worse which means that it's affecting my mind and I they would need to tone it down. Yow.
If it fails, I would go on Sutent a couple months later or perhaps a drug trial at some later time. Sutent has milder effects and can cause some shrinkage but is not a cure. There are a few medications like that to try if Sutent does not work on me.
City of Hope no longer does high dose IL-2 so It's very unlikely that I'd be able to go there. They might even tell me to stick with USC because HD IL-2 is the only hope for a cure. But we'll see if Hope says something surprising. I see the doctor there on 11/16/09.
Thursday, November 5, 2009
Health Insurance is going to be a fight?
I just got the first few "Explanation of Benefits" forms and it looks like I'll have to challenge many of them. They don't want to pay hardly anything. In a way, I find this more upsetting than the diagnosis: You are sick and your expensive Blue Shield insurance is going to make you nit pick, fight and appeal as you go along on basic things that are obviously necessary and normal? Disgusting.
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