Thursday, November 26, 2009

Thanks for...

Thanks for continued improvement in my wife's health.

Thanks for making me cook all day today.  I had so much fun.

Thanks for the people who helped clean up my mess.

Thanks for our kids, parents and siblings being able to join us for dinner today.
Thanks for people who fight for the truth even when biased and uneducated people tell them they are wrong.
Thanks for doctors who are willing to put their reputation on the line to treat patients who have nowhere else to go.

Wednesday, November 25, 2009

Gluten Tuesday

On the very first day that we saw Dr. J, my wonderful mother-in-law Beverly was extoling the virtues of my culinary prowess to Dr. J.  She was describing some random pizza that I had made while she was staying with us and helping Lynette.  Dr. J immediately interjected with his warnings about gluten in the diet.  That was the beginning of Lynette's gluten restricted diet.

It's been over 6 months now.  We have not seen any harm or help from restricting Lynette's gluten intake.  At first she ate no gluten.  Then once in a while she would have something with a slight amount of gluten, like gravy thickened with wheat flour.  Then over the course of a week would have something like breaded seafood once.

We have family standards that we like to eat that contain gluten. The gluten does not seem to be causing any issues for  Lynette, so I have recently implemented Gluten Tuesday.  Two weeks ago we had quesadillas.  Last week we had muffalettas.  This Tuesday it was home grilled hamburgers. 

Of course we aren't going to go overboard, but I see no harm in a little gluten if it is not causing Lynette any issues. 

Thursday, November 19, 2009

Do you have health insurance?

We have the standard corporate employer provided health insurance.  Lynette's employer is the plan subscriber, a coverage which has remained in place during her illness. Over the years we have been happy with our coverage, paying our copayments and deductibles for office visits and minor medical procedures.  Before I changed jobs, I used to carry our health insurance. I was surprised to find out at the annual reenrollment meeting that my company was paying twice the monthly premium on my behalf that I was.  My medical insurance premium per month was nearly $1000 for my family, including mine and my company's contribution.  I was surprised to learn how costly it was for my employer to provide me with health insurance.

I'm sure it's not a surprise to most of you reading this that we have had a recent increase in our medical expenditures. If you have health insurance, you probably feel some security in having this coverage.  It's comforting to know that when you go to the doctor or take your child the doctor that your visit will be covered by your health insurance.

Lynette received a detailed statement of charges each time we went to see Dr. J.  Most of her visits over the summer included charges for a generous supply of pricey IV antibiotics. Since Dr. J was out of network, all insurance claims had to be file by the patient.  Lynette gathered up the supporting documentation, filled out the necessary forms and mailed the claims off to Cigna. When the first claim came back underpaid, Lynette realized that they had paid on the unit price for her antibiotics and not on the extended price.

Lynette contacted the insurance company to let them know of their error.  We figured this was an isolated event and it would be quickly corrected.   The next time Lynette made a similar claim, the same problem was encountered.  Lynette contacted them once again to let them know that they had incorrectly processed the claim. The next time Lynette had a similar claim to post, she took special care to annotate the supporting documentation to help the claims processor correctly encode Lynette's claim. Once again they filed the claim based on the unit price instead of the extended price. Even with extra direction, they still filed the claim based on the unit price rather than the extended price.  Lynette filed more appeals, and today we have finally received a benefit check for these claims. 

The cost of Lynette's Lyme disease treatment is approaching $50,000.  At this point I feel somewhat happy that our insurance has covered 60% percent of this cost.  We figured the insurance benefit would stop at one month of IV antibiotic therapy.  But they have not denied any of the claims once we let them know where the right numbers were. The level of the benefit has been higher than what we expected.

The Academy of Motion Picture Arts and Sciences has pared down their choices of documentary of the year to 15 movies.  One of those movies is Under Our Skin.  This is a movie about Lyme disease and the political and medical controversy that surrounds it.  I surely don't expect Under Our Skin to win the Oscar for best documentary, but I am so excited to think of the attention that would be drawn to the Lyme plight if Under Our Skin was one of the 5 nominees for best documentary. 

This is the part where I usually write about Lynette.  She's not all the way better, but she's doing pretty damn well.

Thursday, November 12, 2009

Should I Stay or Should I Go

There's a vibrant and active community of people affected by Lyme disease. Of course the internet is the best way to interact with these folks. Lynette and I both belong to a couple of social networks targeted to people who's lives have been touched by this disease.

These social networks are a great source of support and information. Although each member has a different story to tell, you start to see that you have things in common with many of them. They have similar symptoms. They are on the same medicines. They see the same doctors.

No doubt there are a lot of stories of dispair to be witnessed. There are patients who have been sick for years but just recently diagnosed. There are people who are sick and have lost their job and their income and are left alone and sick to fend for themselves. There are the typical stories of denial by the medical community. There are patients who have been aggressively treated and have made no progress.  

Jordan Fischer Smith, the forest ranger who is one of the Lyme sufferers who's illness is chronicled in the Lyme documetary Under Our Skin said on camera that he did not start to feel well until his 3rd year of treatment. Noted Lyme practitioner Joseph Burrascano endured treatment of his Lyme disease that lasted for more than 3 years. 

The worst of Lynette's symptoms came on after her sympathetic OB-Gyn wrote her a prescription for doxycycline.  Lynette's reaction to this medicine was our confirmation that she was suffering from Lyme disease.  Lynette was forced to use a walker and wheel chair to get around due to the herx that she suffered from this treatment.  Lynette's formal treatment for her Lyme disease started in the middle of February.  Although progress seemed slow to us by the beginning of May Lynette was walking unassisted. 

It is a tendency among the members of the Lyme social networks to leave these communities when the affects of their disease diminish.  As Lynette starts to return to a normal life, I find myself feeling like I too could draw away from this community.  But I do still want to be involved.  There is a lot of progress to be made in diagnosing Lyme disease, in getting proper and adequate treatment, and in recognition of how serious of a problem this illness is.  

Lynette and I are going to the wedding tomorrow night of one of our oldest daughter's childhood friends.  The other night Lynette was going through her wardrobe trying to find something to wear to the wedding that would be kind to her diminished stature.  She was also trying on shoes that she could wear and not fall over herself.  Lynette says she still has to concentrate when walking in tricky shoes. 

Lynette has set a date for her return to work.  She hopes to return to part time duty on December 7th.  Her disability insurance prohibits her from returning to work full time.  I suppose they want to avoid a relapse.  She will be on part time for a couple of months before returning to full time.  This would put her on schedule to return to full time almost exactly one year after having to go on disability. 

As it stands now, it looks like we will be visiting Dr. J again in mid January.  After Lynette's phone consult with Dr. J last Monday, she is now on oral antibiotics on a M, W, F, two weeks on, two weeks off schedule.  Lynette had not had any antibiotics for 3 weeks following the completion of her IV therapy.  She did notice some minor herx reaction upon starting the orals.  She felt some effects in her hands and feet the first couple of days that she started back on the oral antibiotics.

Lynette is getting better and I intend to stick around.

Wednesday, November 4, 2009

Top 10 reasons I like office visits better than phone consults

Lynette's PICC line was removed today.  I told her I expected to see her raking leaves this weekend! 

I pursued getting the line pulled earlier, but I couldn't get any of the smart people to support me.  Lynette's doctor sent us more supplies to keep the line going.  Lynette had a phone consult with her doctor on Monday and he approved having the line pulled.  Several phone calls were made and appointments set up and today the line was pulled.  Lynette called me immediately afterward.  She was so energized. 

The phone consult was actually more expensive than an office visit.  But an office visit would be hard for two reasons: 1) his office isn't open yet, and we haven't heard a definite date. 2) it would cost us at least $150 in travel expenses to go see him. I convinced Lynette to do the phone consult and have the PICC line pulled locally where it could be done by a practioner who is in our insurance network and 100% covered.

Based on her experiences, Lynette has made the following commentary about office visits versus phone consults:
(names changed to protect the warriors)

Top 10 reasons I like office visits better than phone consults

10.Get to file them with our insurance
9. Cost 3 times less out of pocket
8. Get to give out hugs
7. Have interesting conversations in the waiting room
6. Get to see friendly office staff
5. Shaun get's out of work
4. Get hand written prescriptions that CVS can't translate
3. Get to see Nurse Lisa
2. Get colorful chart from famed artist Dr.

#1 reason I prefer office visits -

1. Get to go to Six Pence Pub after visit