michellep

My hubby has his first follow up with the onc on Monday. I'm making a list of questions but am hoping for advice from my friends here please? I'm afraid that I will end up leaving the appt and suddenly remembering something. Any suggestions other than the #1 When is the next scan? Thanks everyone!

I'm a sticky? Does that make me famous?

WOW! Great pics! I'm younger than you are and suddenly felt like I was 100 imagining myself on one of those things. Keep up the good work cuz you look great!

I noticed that one of the chemo drugs you're taking is Gemzar. My husband also taking it and one of the side effects is indeed SOB. I too thought it was from his pleural effusion but found out it was actually the chemo itself. It's usually worse for 3-4 days following treatments but eases up after that. But I would still encourage you to ask your doc as soon as possible.

Before I met all of you and this had happened I probably would not had what it takes to fight them. So, if anyone deserves credit, it's all of my friends here.

The phone wouldn't stop ringing yesterday! First call was from the insurance company regarding my appeal. It was ruled in our favor YEAAAAA ..... Then Medicare called saying that a formal investigation has begun into the medical group........then the nursing group called and said they received approval for eight weeks of 2Xweek nursing and 2Xweek physical therapy! The nurse was here within 2 hours and gave my husband a great physical checkup. I am BEYOND thrilled and I owe it all to the people here who have given such great advice and soooooooo much emotional support. I can't thank you enough. Finding all of you has been wonderful. Oh.....and one experience we had on chemo day I wanted to share with all of you. When we arrived it took a while of course to get my husband out of the car, into the wheelchair and over to the elevator door. Well, guess what? The elevator was broken down and the only way up to the chemo room was to climb two flights of stairs! I just kept thinking....oh my GOD! Now what? Well, the chemo nurse told me that it had been broken for two days and suggested we re-schedule. That was NOT acceptable to me...I know it wasn't their fault because they had been calling and calling for service. SOOOOOOOOOO I pulled my cell phone out and called 911. They sent paramedics out who put my husband on the gurney and carried him up those two flights of stairs and into the chemo room. The patients who were there (that were able to walk up there) all applauded and said.....Great Job! There was no way I was going to have him miss an appt that is so physically draining for him to get to in the first place. I know some might think that by calling 911 it was extreme but I don't agree. We have been fighting so darn hard for everything in this journey of ours that I'm at the point now where I won't let anything stop us from saving his life.....not even a lousy elevator! Thanks again everyone!

For ALL! Thanks for your advice....I will never EVER stop fighting for my husband. And thanks to all of you for your help and support. I can honestly say that if it weren't for all of you I would have had a total breakdown by now. I got a call today regarding the complaint I filed with the Dept of Managed Health Care. They said that they handle laws broken with Ins Companies for "non seniors" and that I need to go somewhere else. They say that based on information provided to them, a Federal Law has been broken. So, I will contact this other place and keep all of you updated. There are so many issues in this thread that I think are important to ANYONE who has issues with insurance companies. I hope that we can continue this saga I have going so that others can benefit from it as well. And a special note to Trish...I read about your husbands journey and my heart goes out to you...You've had a long run of this terrible disease and I wish you....just as everyone here HOPE, STRENGTH AND COURAGE....THEN....SURVIVAL.

PATTI! OMGGGGG When I read your post I thought....what the heck...try. Within an hour look at the email response I got: Good Afternoon Michelle, Senator Runner asked me to contact you regarding your husband’s medical care. I would like to direct you to the Patient Advocate’s Office in the Department of Managed Health Care. The website is http://www.opa.ca.gov/ Their telephone number is 1-866-466-8900. We have found them to be very helpful in the past. If you have any other questions please feel free to call me at (661) 729-6232. Regards, Lisa Lisa Moulton, District Director Office of Senator George Runner 848 Lancaster Blvd. Lancaster, CA 93534 P-( 661) 729-6232 F-( 661) 729-1683 And Judy.....don't let my posts fool ya but I must admit that I'm better than I was last week....this is war! ha ha No more tears out of me with these people!

Filed an appeal with Blue Cross with 3 day process time. Then I have been in contact with the Dept of Managed Health Care...HICAP advocacy as well as Patientadvocate.org. While waiting I took my husband for a scheduled ultrasound this morning. He was not happy about it since he didn't sleep well last night and could not eat before the procedure. Well, we finally got there only to be told the medical group has "denied" the procedure. uggghhhhhhhhh Upon leaving this place I decide to pick of his medications from the pharmacy......bet you can't guess huh? Again DENIED...and again I'm putting another $600 on my credit card. Still no return phone calls from them about the unpaid anesthesia bills or the ambulance trips. I'm actually holding up well under the circumstances. No tears this time...just sheer anger with these idiots. Maybe I'll have to take another rider over there this week. I wonder if they'll make me go outside to talk again! ha ha This time I'm prepared with a tape recorder! It's hard now, but I know we'll come out of all this just fine. Doubt those people at the medical group will though

I think I've finally gotten them GOOD and I have all of you to thank. According to Federal Law....all HMO's must provide a medicare patient with the exact same benefits. Now....from what I have been told today from State and Federal contacts is that Blue Cross had created a major problem for themselves by denying my husband home health care that his primary care physician stated he needed. (So far I have that in writing). The only issue I am running into now is "written proof" of the denial itself in order to proceed with my complaint which they require. The medical group has danced around my request for a few days now. I am hoping that the primary care physician will be able to provide that to me. I didn't bother him today because the poor man has food poisoning. ( oh good lord...I hope he doesn't need assistance from the insurance group ) I will indeed call Monday morning and see what I can find out. I would have asked his staff to send me the request, but they don't quite understand what I need so waiting till Monday is best. Thanks and Good Bless all of you for your help!!!!!!!!!!!! Now I'm off to have a very well deserved glass of wine!!!!!!!!!!!!!!!!!!

I wish I could get all 10 of the visits....the approval says "all" must be used within 7 days......impossible! They knew exactly what they were doing when they generated their so-called approval. I will most likely only be able to get one visit before July 15th.

Thanks Randy....I'll check these sites out and see if they can help in anyway. Michelle

Well, went over to the office and it was not pleasant. They gave me a copy saying that 10 nursing visits have been approved HOWEVER it was dated today which is July 8th stating that all visits must be completed no later then July 15th. That's it.....I'm finished begging for anything. I took a few hours once I came home and have decided that I will sell anything and everything we own to take care of him myself. We are lucky in the respect that our home is fully paid for, but sad to say it's only worth half now. But, I don't care....the one and only thing that matters is my husband. I'm thinking that I will call private companies and just go from there. I feel like they are trying to force me my denials into calling hospice, but geeeeeeez we just started chem two months ago and don't even have a progress report yet. I don't know.....all I can say is that I'm trying.

A bit of an update I guess.....I filed an emergency appeal with the insurance company this morning on the phone ( expedited with 3 day response) and I also contacted the Dept of Managed Health Care for the State of California. The DMHC says I need a copy of the denial in order to proceed.....so guess what? I'm getting into my car and driving over the the same medical group that said they would call security on me if I show up. If you don't hear back soon, perhaps it will be because I'm in handcuffs? ha ha As soon as someone comes to stay with my husband....I'm on my way!

Judy I see your a retired mental health counselor......HELP! ha ha

Thanks for all the suggestions etc. So far no luck with this problem but I will continue to research and see what I can do. I spoke with someone from the medical group today and for some unknown reason (which she refused to explain) she says my husband's physical condition is "fine". I told her that he is unable to walk more than 2 ft at a time without assistance etc....She just said to me....Well, Mrs XXXX "You are mistaken". I then let her know that I have begun tape recording all conversations. HA HA Anyway, I have made up my mind about something. I absolutely refuse to beg anyone for anything anymore. From now on I shall be formally known as the "steam roller". I will process appeals....call newspapers....tv stations...what ever it takes so that my husband will get the care he needs. I figure that with Obama's plans for universal health care the news media might be interested.

Who told you this and why do you want to go to their office? I'm asking because this is a harsh statement. The doc does not have a copy because the ins company says it hasn't been generated yet. My husband is retired from Nasa and I have placed calls to them for assistance. And the reason I wanted to go to their office is because in order to file and appeal I must have a copy of the denial form and so far no luck getting it.

Went for chemo today and asked about the advocate. Sorry to say that they don't have one.

It was the doc's office that placed the requests initally to the insurance company requesting the social work and home health. They have denied all requests. Odd since they seem to think they know my husband so well and yet they have never seen him. The doctor himself said that we need the assistance and they denied it. I guess my next step is to final an appeal although I need a photocopy of the denial and I wonder if they'll even send it. Thanks for your advice everyone. I told them that I was coming to their office tomorrow and they said I would be denied access. I'm just at the end of my rope here folks. ;-(

I need your advise please. My husband has stage 3 (possibly 4 depending of further testing). Our insurance company (an HMO) has denied home health care as well as a social worker. The woman I spoke with says he is capable of transporting himself to doctors etc. Our primary physician disagrees and well as myself. He is unable to walk more than 2 ft without assistance, he sleeps in a recliner chair and uses a bedside comode and is transported to chemo in a wheel chair. I would like some advise from you as to how I can obtain a social worker. I heard that they can assist with ins companies and provide direction for assistance. We currently live in the high desert of California and there is no assistance avail from the american cancer society or any senior centers. Can you advise anything at all for us? God Bless Michelle

WOW! Your message really touched me...and I thank you so very much. I feel so much better about not having this "discussion" with my husband after reading so many replies from wonderful loving people such as yourself. The picture you have here of your husband and yourself is beautiful. I imagine that you have many many loving memories of your lives together and I am so sorry for your loss. I too wish that we could find a cure for this horrible disease. No one deserves this.....no one. And I also believe that God holds a special place in heaven for caregivers like us. Bless you my friend!

Thank you for all your kind words. The story of you and your husbands journey really touched my heart. He sounds like he was a wonderful man and I'm heartbroken over your loss. Yes, your husband and mine sound very much alike as far as keeping a positive attitude and wanting to discuss future events. Your words brought so much comfort to me because I just can't bring myself to tell him what the doc thinks his prognosis is. I will listen to the words from my heart....and they tell me to love him and make him as happy as I can for as long as I can.

(((Patti))) We won't be able to see the oncologist until July 20th. I would assume at that time he'll discuss the chemo effects etc. I wish we could see him earlier but that's not possible according to his staff. However I was able to ask the PA a few questions yesterday but she herself doesn't know too much yet. It's early I guess because we've only had a few treatments. Although they reduced the amount of chemo by 20% because it's just zapping his blood count. We go again tomorrow for another 3 units of blood. No, I don't think he's depressed. Actually on good days when he's feeling well physically (which if very few) he's alert and playful with me. Today even when we discussed how picky he is about food these days I suggested that he eat baby food. He laughed and asked if he could also have a rubber ducky at bath time. Once in a while he does seem agitated because he says he's tired of just looking at the four walls in the bedroom. I try to bring him out on good days but there aren't many.

Ned, You asked about my husband thoughts on this. I believe he is still in total denial. He doesn't discuss anything about the cancer unless it's positive things. The doctor did say to him once that without treatment it would be 4-6 months and with it he would survive 1-2 years. It was as though he didn't hear a word of it and has not discussed it since. When I speak to him it's only positive as well because I can't bare to say anything. I know the primary doctor told me to discuss all of this with him but I just can't do it. I don't think I could keep it together....it's not an option for me at this point if ever. I know his character and when he's told this he will totally just "give up" and that's the last thing I want to happen. You asked about his age and he is 75 years old but Blue Cross is his primary and Medicare is secondary. Medicare will only come in when hospice is called. Patti, Thanks for the PM offer. I will contact you as soon as I get a chance. The doctor that mentioned hospice has seen him on a regular basis. It's just that based on the medical professionals 30 year study of lung cancer he personally see's no-hope. But it's like I told him, how can you base anything on a lousy 30 year study when cancer treatment has come such a long way in 30 years. As far as the pleural effusion improving, how long does that take? He has the pluradesis done about 6 weeks ago. I'll be taking him in again on Thursday for another 3 units of blood. I hope he feels better by the week end. It would mean the world to me just to sit in the back yard with him and listen to the birds sing like we used to. Thanks to both of you for everything. Every time I close one of these messages I'm glad I don't wear eye make up because it would be all over my face right now.

I know what you mean about being stubborn. My husband also keeps taking off the oxygen, doesn't want to use the walker and we battle over having to use the wheelchair on doctor days. He also has a hospital bed yet refuses to sleep in it. He sleeps in a reclining chair. He too was diagnosed in 3-09 with NSSLC and is having a verry difficult time. I'm glad that you got to visit your dad and you'll be in my prayers. Let us know how things go ok? Michelle