Dad's biopsy results - malignant. Medicare will now not pay for the heart surgery.

[RoughCollie]

:grouphug: :grouphug: :grouphug: What a horrible situation to be in! I hope someone helps you and resolves it in your Dad's favor. I'll pray.

[QueenCat]

I'd encourage him to appeal the decision. Have the doctors show that the surgery will strengthen, not weaken his ability to withstand the other treatments. See if you can go to an appt with him. Make sure that is the case, with his ability to handle the surgery. Sometimes when we're upset, we can miss key info.

[FaithManor]

:grouphug: :grouphug: :grouphug:

 

Is Medicare your dad's only insurance? Does he have private as well? If so, he may be able to get approved through that. You might have to pay a little more through private (if he has that option) but treatment might be faster and not as complicated.

 

I have heard about the IV chelation as well. A google search may turn up cases where surgery wasn't an option and how well it worked.

 

Don't hurt yourself on that bike!! Breathe in, breathe out....

 

 

Dad no longer has private insurance. He's fought valiantly in this economy to keep his business open and not let employees go or cut their benefits. When the profit margins sank to into the abyss, he dropped he and mom's health insurance in order to help keep policies for his employees (currently, he employs 5 people) and he and mom's combined income from working themselves into the ground so they don't have to put anyone on the unemployment line is down to $30,400.00 per year. I think we are going to have to force retirement on him and close the business. I don't like putting other families in financial peril, but I think we are out of options here. Unfortunately, the business, worth about 1 million dollars before the real estate collapse, is not sellable now due to Michigan's continuing economic woes. We'll close the doors, sell everything, and leave the buildings empty (no one is getting in line to rent commercial property anymore in this area) and he'll get, if he's lucky, $20,000.00. DH and I will need to help them because their 401k's tanked and haven't fully recovered. But, that's not an issue for us. We'll do what needs to be done. I'm concerned about dad. The business is something he poured his blood, sweat, and tears into and he's going to feel like a failure when faced with the inevitable. I need him in fighting mode.

 

I'm going to spend some time bombarding the doors of legislators in Lansing and then work my way up to the federal level. I'm going to start with State Rep Mike Green since he is a close, personal friend of dad. We'll see what he suggests and who he thinks I need to talk to and then move on from there since I'm sure, before it is over, I'll need to get the ear of a senator. I just need to know the best way to go about doing that.

 

Once we have the results of the petscan, I'm also going to get tough with them about leaving the local docs and going to Beaumont. Beaumont, for certain, presents a huge amount of driving and inconvenience, but it is amongst the top 200 hospitals in the U.S. and has world class recognition. The level of treatment and respect there is so much better than the hospital dad is currently working with and dd, the medic, lists Beaumont as the hospital she respects most in Michigan and she's taken patients all over the lower penninsula and dealt with A LOT of facilities...all of the big ones, Mercy, Henry Ford, the U (U of M medical center), you name it and this is where she wants him and I agree.

 

Doing some research and it looks like dad's cancer likely comes from asbestos exposure...he had some heavy doses in the mid 70's and the timing is right from exposure to appearing on chest x-ray. If this is adenocarcinoma, I think we've got a chance of beating it down. If it's a carcinoid, then he definitely could beat this thing. If it's squamous cell or mesothilioma, then I think I need to be prepared...the survival rates on those, even when caught early, are very, very low.

 

I wanted targeted therapy. Somebody had better listen or it's not going to go well for them.

 

As for his GP, the one I've been begging him to leave for years, I may own him before this is over and I'm not the kind of person who normally goes in for lawsuits. Dad had bronchitis this winter (November) and the doc ordered a chest x-ray. The first nodule showed up and we've just found out the doc saw it and NEVER TOLD DAD. He assumed it was a pocket of infection and would clear up when he gave dad antibiotics. He never ordered a follow up x-ray to see if he was right and he never told dad about it (didn't want to worry you Dan) so dad could choose to get a scan or second opinion. Now there are two and this GP had the nerve to shrug his shoulders at me when I asked him why he didn't follow up. That was the response. A SHRUG! Not.one.blessed.word. Not an explanation.Nothing. Just a shrug and then waved his hand at us and told us he was busy...we paid an office call to discuss this and he was in the room less than 2 min. I think he is going to regret treating us this way. Though, I'm certainly not going to let my anger with him take my focus away from what needs to be done now. Actually, I don't care about money...what I care about is getting his medical license pulled. I've found out since then that the number of complaints against him for negligence is staggering! He should not be practicing.

 

So, that is where we are at...getting the petscan scheduled and then getting all of the scans sent to Beaumont.

 

DD sobbed on my shoulder last night. More than anything she wants grandpa at her wedding June 1st and now she has a very real reason to believe he may not be here...he can't go forever with that heart. The artery on the back side - referred to by the stupid cardiologist as "the widowmaker" is 100% plugged and the two on the top side are 85%.

 

Thank you everyone! I'll try to post an update when I can. I just don't know how much I'll be around. Dh did tell me I should be able to check-in on my Kindle when sitting around waiting rooms, an activity I expect to be involved in quite a lot in the future. I'll try to remember to keep my Kindle with me.

 

Faith

[Pawz4me]

I'm going to spend some time bombarding the doors of legislators in Lansing and then work my way up to the federal level. I'm going to start with State Rep Mike Green since he is a close, personal friend of dad. We'll see what he suggests and who he thinks I need to talk to and then move on from there since I'm sure, before it is over, I'll need to get the ear of a senator. I just need to know the best way to go about doing that.

 

I believe the first step is to initiate the Medicare appeal process and wait for their response. I *think* you'll need to do that before any action can be taken by anyone else. While I have no direct experience, my understanding is that with Medicare or Social Security issues your Congressional representative is generally the most helpful contact. Almost all of them have staff members who specialize in helping constituents with such problems.

[fairfarmhand]

:grouphug: :grouphug: :grouphug:

[sparrow]

:grouphug: What a horrible situation. I'm so sorry.

[*********]

Faith, listen to me, because I mean this.

 

I live very close to both the Troy and Royal Oak Beaumont Campuses. Grosse Pointe is much further, but I'm assuming you're considering the Royal Oak campus.

 

My stepkids live in Royal Oak, and Dh works in Troy. I am in the area FREQUENTLY, and we live just 20-25 minutes north of Royal Oak.

 

I want you to contact me if there's anything I can do for you. I forget where exactly you live, but I know it's a ways north of here (maybe you're up in the thumb more, closer to Bad Axe, or over by Bay City?). Either way, that's a LONG drive for you guys.

 

I'm here, and I want to help you any way I can. You can pm me anytime, and I'll send you my personal email and cell phone number.

 

Keep fighting for your dad. He's blessed to have you. :grouphug:

[creekland]

Dad no longer has private insurance. He's fought valiantly in this economy to keep his business open and not let employees go or cut their benefits. When the profit margins sank to into the abyss, he dropped he and mom's health insurance in order to help keep policies for his employees (currently, he employs 5 people) and he and mom's combined income from working themselves into the ground so they don't have to put anyone on the unemployment line is down to $30,400.00 per year. I think we are going to have to force retirement on him and close the business. I don't like putting other families in financial peril, but I think we are out of options here. Unfortunately, the business, worth about 1 million dollars before the real estate collapse, is not sellable now due to Michigan's continuing economic woes. We'll close the doors, sell everything, and leave the buildings empty (no one is getting in line to rent commercial property anymore in this area) and he'll get, if he's lucky, $20,000.00. DH and I will need to help them because their 401k's tanked and haven't fully recovered. But, that's not an issue for us. We'll do what needs to be done. I'm concerned about dad. The business is something he poured his blood, sweat, and tears into and he's going to feel like a failure when faced with the inevitable. I need him in fighting mode.

 

I'm going to spend some time bombarding the doors of legislators in Lansing and then work my way up to the federal level. I'm going to start with State Rep Mike Green since he is a close, personal friend of dad. We'll see what he suggests and who he thinks I need to talk to and then move on from there since I'm sure, before it is over, I'll need to get the ear of a senator. I just need to know the best way to go about doing that.

 

Once we have the results of the petscan, I'm also going to get tough with them about leaving the local docs and going to Beaumont. Beaumont, for certain, presents a huge amount of driving and inconvenience, but it is amongst the top 200 hospitals in the U.S. and has world class recognition. The level of treatment and respect there is so much better than the hospital dad is currently working with and dd, the medic, lists Beaumont as the hospital she respects most in Michigan and she's taken patients all over the lower penninsula and dealt with A LOT of facilities...all of the big ones, Mercy, Henry Ford, the U (U of M medical center), you name it and this is where she wants him and I agree.

 

Doing some research and it looks like dad's cancer likely comes from asbestos exposure...he had some heavy doses in the mid 70's and the timing is right from exposure to appearing on chest x-ray. If this is adenocarcinoma, I think we've got a chance of beating it down. If it's a carcinoid, then he definitely could beat this thing. If it's squamous cell or mesothilioma, then I think I need to be prepared...the survival rates on those, even when caught early, are very, very low.

 

I wanted targeted therapy. Somebody had better listen or it's not going to go well for them.

 

As for his GP, the one I've been begging him to leave for years, I may own him before this is over and I'm not the kind of person who normally goes in for lawsuits. Dad had bronchitis this winter (November) and the doc ordered a chest x-ray. The first nodule showed up and we've just found out the doc saw it and NEVER TOLD DAD. He assumed it was a pocket of infection and would clear up when he gave dad antibiotics. He never ordered a follow up x-ray to see if he was right and he never told dad about it (didn't want to worry you Dan) so dad could choose to get a scan or second opinion. Now there are two and this GP had the nerve to shrug his shoulders at me when I asked him why he didn't follow up. That was the response. A SHRUG! Not.one.blessed.word. Not an explanation.Nothing. Just a shrug and then waved his hand at us and told us he was busy...we paid an office call to discuss this and he was in the room less than 2 min. I think he is going to regret treating us this way. Though, I'm certainly not going to let my anger with him take my focus away from what needs to be done now. Actually, I don't care about money...what I care about is getting his medical license pulled. I've found out since then that the number of complaints against him for negligence is staggering! He should not be practicing.

 

So, that is where we are at...getting the petscan scheduled and then getting all of the scans sent to Beaumont.

 

DD sobbed on my shoulder last night. More than anything she wants grandpa at her wedding June 1st and now she has a very real reason to believe he may not be here...he can't go forever with that heart. The artery on the back side - referred to by the stupid cardiologist as "the widowmaker" is 100% plugged and the two on the top side are 85%.

 

Thank you everyone! I'll try to post an update when I can. I just don't know how much I'll be around. Dh did tell me I should be able to check-in on my Kindle when sitting around waiting rooms, an activity I expect to be involved in quite a lot in the future. I'll try to remember to keep my Kindle with me.

 

Faith

 

:grouphug: Keep fighting. I wouldn't close the business - not yet anyway. I do think that would take your dad's spirit out. On this end, we'll be praying. :grouphug:

[jenL]

I am so very sorry, Faith. Many, many prayers are with you and your dad. :grouphug:

[liber]

So sorry to hear about your dad. My uncle dad last year of lung cancer causes by asbestos exposure. He had two types actually. If it was just the cancer caused by smoking he could of had surgery etc and been fine. But the cancer caused by asbestos was in the lining of his lungs and unfortunately it is a death sentence. He received no treatment other than pain management. They figured he had it for about a year in a half and even if they discovered it then not much could be done. At first he thought he pulled a muscle in his back and then maybe he had pneumonia. His GP did not order chest xrays only gave him antibiotics. It was only two months before he died that they cancer was discovered.

 

I pray your dad has a different outcome. :grouphug:

[Jennifer in MI]

Faith, listen to me, because I mean this.

 

I live very close to both the Troy and Royal Oak Beaumont Campuses. Grosse Pointe is much further, but I'm assuming you're considering the Royal Oak campus.

 

My stepkids live in Royal Oak, and Dh works in Troy. I am in the area FREQUENTLY, and we live just 20-25 minutes north of Royal Oak.

 

I want you to contact me if there's anything I can do for you. I forget where exactly you live, but I know it's a ways north of here (maybe you're up in the thumb more, closer to Bad Axe, or over by Bay City?). Either way, that's a LONG drive for you guys.

 

I'm here, and I want to help you any way I can. You can pm me anytime, and I'll send you my personal email and cell phone number.

 

Keep fighting for your dad. He's blessed to have you. :grouphug:

 

 

I'm agreeing with Bethany here. I live very, very close to the Beaumont in Grosse Pointe, if that is where you are going. Please PM me. I would love to be able to help in ANY way. We have a nice guest room and you are welcme to use it. I can cook meals. Whatever. Oh - and we have a piano you can play!!

 

If you are in Royal Oak, we are still pretty close! Please let me know. Really. Take Bethany and me up on our offers please!!!

[*********]

I'm agreeing with Bethany here. I live very, very close to the Beaumont in Grosse Pointe, if that is where you are going. Please PM me. I would love to be able to help in ANY way. We have a nice guest room and you are welcme to use it. I can cook meals. Whatever. Oh - and we have a piano you can play!!

 

If you are in Royal Oak, we are still pretty close! Please let me know. Really. Take Bethany and me up on our offers please!!!

 

 

I don't have a guest room, but I can cook, bring food, suggest restaurants, or just come sit with you.

 

I'd love to meet you. I wish the circumstances were different, but still.

[FaithManor]

Bethany and Jennifer, I am so touched by your offering.

 

I'm not certain what campus we would be on. In the past, we've been at the Troy hospital for my sister's surgery and my mom's foot. That is the one closest to us. However, I am sure that each campus has it's own set of specialities so it's hard to say where we may end up.

 

Gals, normally, I'm not a "put other people out" kind of person. I stick my chin out and roll. But, this one, this one may have me beat. I may need some help. I'm going to suck it up and try not to inconvenience others, however, it's possible that this time my "can do it myself" independence may not be enough.

 

I need to go make my children get an education. I worked out at the gym for so long I completely lost track of time. I think, on most levels, this obsession with working out some of my tension by exercising is good because I need it! On the other hand, I need to be a bit more moderate in my approach because my poor arm muscles are getting angry with me. I think, in particular, the one weight lifting machine, I may have overdone it a bit. I didn't notice anything during the work-out, but YIKES...now that I'm sitting down and typing, there some "dogs a barking!"

 

Thank you everyone. I am so blessed to have the Hive!

 

Faith

[Seasider]

Faith, how incredibly frustrating - this is just so wrong!

 

Your dad is blessed to have you for an advocate. Your family will be in my prayers.

[Spy Car]

:grouphug:

 

Bill

[Harriet Vane]

:grouphug:

[Carpe Diem]

Faith,

 

I just saw your post. I am so sorry to hear about this situation and also very angry to hear about this situation.

 

I don't know your father's age or where he lives, but if you are interested in going to the number one cancer hospital it is MD Anderson in Houston, TX. Your father and one person can get a free flight there and back for assessment/treatment as many times as needed out of Saginaw. Call Corporate Angel Network. Once on the ground he can get a free drive from the airport to any hotel through the Ground Angels. All hotels have free medical shuttles to the hospital. This is what I did for part of my cancer treatment, except I had to drive 7 hours for the flight.

 

I mention MD Anderson because while there I have met many people who told similar stories, basically back home the doc said they had 3-6 months to live and no options but at MD Anderson they found a new idea and that person was either still alive or outlived the prognosis by many years (as told by a family member volunteer.)

 

Even if you aren't interested in MD Anderson you might be able to call there to talk to someone to see if they have anything else to offer compared to what you can get at Beaumont.

 

Also, when you find out what type of cancer your Dad is dealing with you can investigate clinicaltrial.gov. to see what is out there for clinical trials.

 

I will keep you and your Dad in my thoughts and prayers.

[Kathy in Richmond]

Faith,

 

I hope and pray that your Dad gets the care he needs. He's absolutely lucky to have you on his side!

 

:grouphug: :grouphug: :grouphug:

 

(from someone else who works out frustrations at the gym...)

[songsparrow]

Are the doctors at least giving him medications to try to prevent a heart attack while they work on the cancer? I think my dad took some of these. (I'm sure they probably are, as this is pretty basic, but just thought I'd throw it out there.)

 

:grouphug:

[Dandelion]

I'm so sorry. :grouphug:

[celticmom]

Is your father open to trying the Dean Ornish diet or something similiar while he is in a holding pattern waiting for other treatment?

[*********]

Bethany and Jennifer, I am so touched by your offering.

 

I'm not certain what campus we would be on. In the past, we've been at the Troy hospital for my sister's surgery and my mom's foot. That is the one closest to us. However, I am sure that each campus has it's own set of specialities so it's hard to say where we may end up.

 

Gals, normally, I'm not a "put other people out" kind of person. I stick my chin out and roll. But, this one, this one may have me beat. I may need some help. I'm going to suck it up and try not to inconvenience others, however, it's possible that this time my "can do it myself" independence may not be enough.

 

I need to go make my children get an education. I worked out at the gym for so long I completely lost track of time. I think, on most levels, this obsession with working out some of my tension by exercising is good because I need it! On the other hand, I need to be a bit more moderate in my approach because my poor arm muscles are getting angry with me. I think, in particular, the one weight lifting machine, I may have overdone it a bit. I didn't notice anything during the work-out, but YIKES...now that I'm sitting down and typing, there some "dogs a barking!"

 

Thank you everyone. I am so blessed to have the Hive!

 

Faith

 

 

Faith, seriously, I just google maped it; Troy Beaumont is six miles from my house.

 

Please let me know if there's any way I can help you.

[Halftime Hope]

Faith,

 

I just saw your post. I am so sorry to hear about this situation and also very angry to hear about this situation.

 

I don't know your father's age or where he lives, but if you are interested in going to the number one cancer hospital it is MD Anderson in Houston, TX. Your father and one person can get a free flight there and back for assessment/treatment as many times as needed out of Saginaw. Call Corporate Angel Network. Once on the ground he can get a free drive from the airport to any hotel through the Ground Angels. All hotels have free medical shuttles to the hospital. This is what I did for part of my cancer treatment, except I had to drive 7 hours for the flight.

 

I mention MD Anderson because while there I have met many people who told similar stories, basically back home the doc said they had 3-6 months to live and no options but at MD Anderson they found a new idea and that person was either still alive or outlived the prognosis by many years (as told by a family member volunteer.)

 

Even if you aren't interested in MD Anderson you might be able to call there to talk to someone to see if they have anything else to offer compared to what you can get at Beaumont.

 

Also, when you find out what type of cancer your Dad is dealing with you can investigate clinicaltrial.gov. to see what is out there for clinical trials.

 

I will keep you and your Dad in my thoughts and prayers.

 

 

Hi "Carpe" it's so good to see you! I was wondering yesterday how you are doing? PM me, if you'd prefer.

[brehon]

Faith,

 

I just saw your post. I am so sorry to hear about this situation and also very angry to hear about this situation.

 

I don't know your father's age or where he lives, but if you are interested in going to the number one cancer hospital it is MD Anderson in Houston, TX. Your father and one person can get a free flight there and back for assessment/treatment as many times as needed out of Saginaw. Call Corporate Angel Network. Once on the ground he can get a free drive from the airport to any hotel through the Ground Angels. All hotels have free medical shuttles to the hospital. This is what I did for part of my cancer treatment, except I had to drive 7 hours for the flight.

 

I mention MD Anderson because while there I have met many people who told similar stories, basically back home the doc said they had 3-6 months to live and no options but at MD Anderson they found a new idea and that person was either still alive or outlived the prognosis by many years (as told by a family member volunteer.)

 

Even if you aren't interested in MD Anderson you might be able to call there to talk to someone to see if they have anything else to offer compared to what you can get at Beaumont.

 

Also, when you find out what type of cancer your Dad is dealing with you can investigate clinicaltrial.gov. to see what is out there for clinical trials.

 

I will keep you and your Dad in my thoughts and prayers.

 

 

Yes, Faith. Do at least consider a phone consult. (I think they still do these.) MD Anderson is the best for a reason and they have people from all over the world come there. I'm so sorry for your dad, your family, and you. :grouphug:

[Jennifer in MI]

Bethany and Jennifer, I am so touched by your offering.

 

I'm not certain what campus we would be on. In the past, we've been at the Troy hospital for my sister's surgery and my mom's foot. That is the one closest to us. However, I am sure that each campus has it's own set of specialities so it's hard to say where we may end up.

 

Gals, normally, I'm not a "put other people out" kind of person. I stick my chin out and roll. But, this one, this one may have me beat. I may need some help. I'm going to suck it up and try not to inconvenience others, however, it's possible that this time my "can do it myself" independence may not be enough.

 

I need to go make my children get an education. I worked out at the gym for so long I completely lost track of time. I think, on most levels, this obsession with working out some of my tension by exercising is good because I need it! On the other hand, I need to be a bit more moderate in my approach because my poor arm muscles are getting angry with me. I think, in particular, the one weight lifting machine, I may have overdone it a bit. I didn't notice anything during the work-out, but YIKES...now that I'm sitting down and typing, there some "dogs a barking!"

 

Thank you everyone. I am so blessed to have the Hive!

 

Faith

 

 

I mean it Faith. It would be an honor to help you in any way possible. A place to stay? Food? Anything. Please just PM me. I'll PM you my cell phone number.

[Susan C.]

Thinking out loud in a few directions....

 

It might be good to try Houston, if his heart acts up even a little, they will operate first, talk money second.

 

At home, ask what they will do if his heart starts acting up? Just watch him pass? I think not. They will operate, and with him in compromised health. So that is your argument. If they will operate if he has a heart attack, then they can operate now. With one at 100% blocked and two at 85% blocked this is NOT elective surgery.

[Suzanne115]

I'm so sorry for what you are going through. It sounds unbelievably frustrating. I hope you find a positive resolution. It is just unthinkable.

 

 

Suzanne

[TravelingChris]

I am so sorry Faith. I don't have advice but will continue praying. A lot of people here are giving good advice already. Both of my parents died when I was young (13 and 23), so I have really had no experience with these kinds of things. But again :grouphug:

[besroma]

Thanks for updating, Faith. I am praying for you and your dad. :grouphug: