Change of Mind

Until yesterday I, like many other Americans was not in love with the recent Supreme Court decision regarding the Affordable Healthcare Act. The law disturbed me. At the core of my dislike of the law is my fear that the company that I work for will phase out our generous healthcare package. In all reality, it will be more affordable to pay the per employee fine than to continue offering health insurance. I also fear loosing the availableness of our current system. Having participated in the breastcancer.org chat room I know that in countries with universal health care women commonly wait 3 months to get an acute mammogram or ct scan. I have been told by my doctors that if I'd had to wait 3 months I would have been in stage 4. Although I am not totally opposed to the idea of rationing (I will write about that in another post) I have not been happy with the resent guideline changes in mammogram screenings, psa titers and pap smears, and the timing of these guideline changes is very suspicious.

That being said, I was with my carpool buddy, who was equally unhappy about the Supreme Court's decision. He made a comment that got me thinking. He said that everyone says that the law is awful and a complete disaster coming at us, but when you ask them what is awful about it they can't tell you. He's right. Most people I know like that they can keep their children on their insurance until they are 26. I know I am enjoying that benefit. They like that if their child is discovered to have a disqualifing condition and they change jobs the insurance company can't refuse to cover their child. They like that insurance companies can no longer search for a reason to discontinue their coverage if they should have a heart attack or cancer.  They like that they don't have to pay for preventative care any longer. But most people don't really know what's in the law, they just don't like it. I think that comes from two directions. First, that the act was just shoved down our throats without it being explained to us and second our fears about what the act is going to do to our status quo. I know that beyond the provisions that I have already benefited from, I didn't really know what was in that law. So I went to Google and looked it up. If you'd like a clear, to the point explanation of the law you can find it at http:/www.healthcare.gov.


I was more impressed than depressed by what I found. I do have some concerns about the law. Though, it seems to me that the insurance industry got the blunt end of the stick when it came to it. So why did the insurance industry endorse this bill so heavily? Everything in business comes down to the bottom line and I think they are seeing a windfall. One of my concerns is the Accountable Care Organizations that doctors and hospitals are being encouraged to form. It seems right now that the provision is just for Medicare, but will it be applied universally once these organizations are set up? Will I be limited to using only Heartbreak Hill doctors, when some of my doctors work at Big Religion and some favor the Baby Factory? I'm also concerned about the loop holes that insurance companies will find to get around these laws once they are applied. I'm sure they were working on their out even while the law was being written. 


While republicans are screaming repeal, even they don't want parts of the act repealed. And I think that once everyone slices and dices the law is probably with us for good. So I think that that we would all do well to listen to Dr. Sidney Freedman.

"Ladies and gentlemen, take my advice - pull down your pants and slide on the ice."

New Cardiologist...maybe not

I met the new cardiologist. Over all I found him to be a nice guy. If you have Afib and live anywhere near Atlanta, I'd recommend him. He takes the time to explain things in clear language. BUT...yeah, that's a big but. After talking with him, I'm concerned that I may know more about my condition than he does, and that worries me. The thought of interviewing EP's depresses me. I'm just not 100% with this guy. I put up with an arrogant ass with a bitchy office staff for a cosmetic surgeon because he is an excellent technician. My dermatologist asked for his name when his wife was diagnosed with breast cancer. That's how good the breast that he built is. I will take a lot for a good doctor. That's why I still see Dr. S and Dr. Sh. I just want a doctor that I fell comfortable with.

Dr. K's nurse, LL talked with me about Dr. K's departure. She assured me that it was almost certain that Dr. K would be back in the fall. This was not something that I perceived from the letter and the website. Seriously, Dr. K quit instead of taking a sabbatical or leave of absence. His message on the website only said he would do his best to be back in Atlanta. And if he comes back,it seems likely that it will be to The Hospital That Coke Built, I'd have issues with it. Not that I'm saying they're bad, but they believe in the clinic method of practice. You don't always see your doctor. You get whoever walks in the room. That just isn't okay with me. I left one of their primary care clinics because Dr. M was never available. Dr. B could see me and he was a lazy idiot. The outlook isn't comforting. Dr. K quit Heartbreak Hill and Big Religion. I don't think he's likely to go back to either of them. The Baby Factory across from Big Religion doesn't have much of a cardiac program. Their focus seems to be on women's health issues and cancer. Coke Built is trying to compete with Heartbreak Hill for heart related issues and have some big grants to throw at it. The only other big player .s the W All Over Town. Let me just say, I'd rather go to Coke Built's County Teaching Hospital in the armpit of Atlanta than to any one of their hospitals. W has been stepping up their game and are actively recruiting anything that will bring them more status. What drags their status down is their lack of a competent staff at their hospitals. The one time I was there, it was a nightmare of errors. At one point they were trying to give me someone else's medication. So, even if Dr. K comes back to Atlanta, the situation isn't looking good for me. My only option may be to go crawling back to Dr. L in Coke's Big Swanky Mid-town Hospital. I hope not. I didn't make an appointment for my six month follow-up. I want to see what is to become of Dr. K. My expectations are just really low at this point.

The monitor didn't reveal much. I have a lot of premature ventricular beats and premature atrial beats and I have long periods of sustained tachycardia but with normal waves. I have to wonder about his interpretation of normal. He pulled this up by leafing through a month's worth of reports in the examining room (read he looked glanced through three or four pages) which means that none of that was corrected using the Bazzetts equation. You can't get a true QTc off an ECG without the equation. I don't even know if he had anyone work the equation on the ECG done while I was in the office. He talked to me about implanting an ICD, which I refused. I don't something that is going to kick my heart at random moments.  I also refused taking another anti-arrhythmic medication. I already take too many medications, he was happy that I refused the medication anyway, the ICD, not so much. Really, for all the trouble and expense, I've gotten nowhere. I still have no clear answer for the really high blood pressure, low blood sugar and chest pain that I was experiencing in March, or for the ECG reading that prompted Dr. K to want the ambulatory telemetry. I still have periods of severe hypertension that will last for a day or two and then go back down to mild to normal. I have no idea why. I guess I'm just going to have to wait until this thing declares what it is.

Bugged

I  put off calling about the results from the CA27-29 for a few days. Really, I don't see why Dr. S wants me to know it unless he thinks that it gives me comfort that it isn't rising. Actually looking around the web, it's not even recommended as a screening test. It wouldn't become elevated until a tumor was quite large. Yesterday I finally got around to calling about it. I decided while I was talking to the nurse to get a copy of the December blood test that Dr. S had made reference to and talk to Dr. R about having such different B12 test results a month later. She said that she'd fax it to me and then didn't so I called back this morning and one of the ladies at the front desk faxed the results to me. I looked and looked and looked over the results and I don't see that cobalamin was tested for. Why would he tell me that I'd had a level of 1330 when he hadn't even had the test done.

This bugs me, really bugs me. I have know for almost the entire time that I have been seeing Dr. S that he gives the information that I need to know to make the decision that he wants me to make. I have always felt that the omission was a form of dishonesty. But I consider that at some point everyone is dishonest whether they mean to be or not. But this is beyond just failing to give me every piece of information, this is an outright lie with no reason to do it. Seriously, I thought it odd that he would have been checking cobalamin levels. What would be the point? Most doctors don't check it until they have a reason to do it.

I'm not going to fire Dr. S over this, but it does cloud my trust of him. I just wonder if the next time I need to consult him about a problem I'm going to be able to trust him.

Gottcha

Scared me for just a moment

Back To Business

I went back to the gym tonight, my body feeling decisively less shocky than it did for the past two days. Still, the workout was a fete of will. My body just didn't want to do it. Tonight my legs felt like lead. I wanted to quit, to just get off the machine and go home. I didn't. I stuck it out for the entire hour. Walking out the door I wondered "When does this start feeling good?" Sometimes I think that I've forgotten what feeling good feels like. I don't think I've ever felt like "Yeah, let's go get all sweaty and stinky, it'll feel great!"

On a brighter note, my thumb is healing well. It's looking less horrifying and throbbing less. I don't feel bad that I strong armed Dr. R into giving me antibiotics. Next time I go in I'll explain to him that I will respect his opinion on every other body part I have, but the lymphedemous arm, I will always over protect.

The cost of stress

Monday night I noticed that there were a few soft hairs growing on my legs, maybe four or five. My legs never really regained the ability to produce hair after chemo. I decided that it would be better to shave them occasionally so I went to the bathroom to do so. I'd recently bought a new bag of razors and opened it and selected one. Unfortunately what I didn't appreciate when I purchased these razors was that to remove the protective sheaf you have to push it up, not slide it down. In the process of opening the razor I managed to shave off a good part of the pad of my left thumb. It bled like a mother. I stayed up late trying to stem the flow. During the night, probably a result of being uncomfortable with the pain of my thumb, I pulled off the CPAP mask. I woke up Tuesday feeling like I'd been run over by a truck.

On Tuesday I went to see Dr. R about the thumb, because it was my left thumb. I have lymphedema in that arm and I fear cellulitis almost as much as I fear cancer. Dr. R bandaged the thumb and reluctantly gave me a  prescription for Keflex. I know he's right, but I can't risk cellulitis again. I worked all day, but knew that my body was still in shock from the cut. I hate that I can't recover instantly any more.

This morning I woke up after a full night with the CPAP feeling like the dump truck was still on top of me. I called in and let my car pool buddy know I wasn't going in. I went back to sleep and slept to 2:30. So I'm here and wondering when I give it up. I am eligible for retirement in August, but I feel that most of the time I can still work. It's only in these times when my body is fighting stress that I crap out. 

The gem in this round of medical mishaps is that during this appointment Dr. R gave me some insites to his decision to immigrate to this country. He came in 1991, so right as the Soviet Union was being broken down. He also showed a contempt of all things Russian, which confirmed that the things that I thought may have been propaganda were actually true. I would have liked to question him more about it more, but I knew he had other patients. I hope the conversation continues. 

Summer Obsession

I'm a food addict. How do I know this? I am obsessed with food, either obsessing over foods that I don't want to eat, like gluten and high fructose corn syrup, or foods that I crave. Generally, every summer and winter I obsess over a certain food group. A few summers ago it was ice cream. Seriously, I couldn't consider eating anything but ice cream. It's not as bad as you think, I chose sugar free low fat ice cream. But still? Yeah, I know, not the best food choice. This summer the sticky food of choice? Drum roll please....

Yes, you have it. Smoothies. It started with a billboard that I was passing for Burger King. Apparently the fast food industry has decided to offer healthier food options and menu contains salads featuring chicken and fruit and real fruit smoothies. Nice try guys, but your smoothies while they can legally say they are real fruit because you use fruit to make them are full of other things like high fructose corn syrup, artificial colors, fillers and preservatives. Oh, and those fillers are made of gluten...no on my diet choice of ingredients. Still they look so compelling. I mean, frosty, creamy cups of pure nutrition that are oh so yummy sweet and icy cold...except that they are not pure. But wait a minute. A few years ago a local close out store offered a smoothie machine for $10 that my daughter begged for. Knowing this thing was going to be a major pain to clean I acquiesced. She was over weight at the time and I though that it might help with her diet...it did. But I was so very right. Well, instead of heading out to a local fast food restaurant to consume thousands of calories of food that are permanently off my diet I dug the machine out of storage, cleaned it with bleach and resurrected it's purpose in life. The smoothie in the picture above is made with a half container of ice, a cup of Greek yogurt, a cup of whey protein powder, a banana, three large strawberries, a wedge of pineapple, a slice of cantaloupe and a fourth cup of orange juice. But even with all that sweet fruit, smoothies need a source of sweetness. They can be tart without it. I didn't want to corrupt my healthy smoothie with sugar or artificial sweeteners. This leads to the best buy of the summer:

a stevia plant...yes, I'm a crazy herb lady after all...I can't believe it! We grow fresh basil, rosemary, chives, thyme and now stevia. I use it in a lot of my cooking. I probably should look into growing garlic as that is another herb that I use frequently. For the smoothies, I gather a handful of leaves and throw them into the mix. That is what makes the green dots in the picture above. I spent $2.33 on that plant at a local nursery and it is worth it's weight in gold. I throw a handful of leaves into water that I boil and then use that water to seep teabags for iced tea. I dry the leaves and use them to sweeten almond flour muffins. My no calorie sweetener comes from my garden. How cool is that,wait a minute. Does that mean that I really am an aging hippie? Because when the apples, pears and figs get ripe I have been excited about seeing what I can do with them and my smoothie machine. Maybe I should see a counselor after all.

Six Hundred Posts an Update

This is post 600 for this blog. After 6 years, that would amount to around 100 posts a year. I guess I'm not as much a negligent blogger as I had imagined myself. That's one way to look at it. The other is to understand that I have whined for almost a third of the year for the past 6 years...sobering. But the intention of this blog is to dump here so I'm not constantly expressing these feelings to everyone around me. Still, that's a lot of whining.

I saw Dr. S yesterday. It was pretty much a dash through office visit. One of the beauties of taking the last appointment of the day is that everyone is wanting to get done and go home. Unfortunately D. from the cardiology office called as I was being called in for blood work. Dr. S after listening to the medical mayhem that the past 5 months have been, was willing to let things play out. He said that my B12 level in December was 1330 and wondered about the diagnosis. A month later it was 201. How does that happen? He agreed with the cyanocobalamin shots and the aspirin therapy, and explained that many people develop hypercoagulable states after cancer treatments. Besides that brief interaction he rushed me out and wants to see me in 6 months. Six is beginning to be a theme here. I was relieved that he didn't want to follow anything up. I'm done, really done with medical testing.

After leaving Dr. S's office I called D back to find out what was going on. She just wanted to convey the same information that I got from L when I called in about my appointment with Dr. K. They want me to keep my appointment on the 26th and the EP who will be in the office then will see me if L thinks it's necessary....schreech....um, I want to be followed by an EP, not an RN no matter how well I like the RN or how well she knows my history. I also want a dedicated EP, not to see whomever is in house when I'm at my appointment. I signed up to a practice, not a clinic. I have a congenital heart condition and hypertension and I'm a cancer survivor who was given cardio toxic drugs and radiation to the left chest wall...I think I need a doctor. But discussing this with D would have been moot, so I asked who was going to be in the office on the 26th. She told me Dr. W would be. When I told her that I hadn't heard of him before, she said that he is new to the practice. Yeah, this wasn't giving me that warm, fuzzy "Valued Patient, We're here to help you - and your heart - stay healthy for years to come" feeling.  So I Googled Dr. W. He actually looks pretty good. He's been in practice for 14 years, not a fresh off the the campus newbie by any means. No malpractice suits, no disciplinary actions, board certified, went to the Big Medical University that Coke built all the way through his fellowship. i guess that's good. Then he taught and practiced there...hmmm, I wonder what made him recently jump ship and go to Heartbreaker Hill? He looks pretty good, but everything published by him is about Afib, nothing about Vfib at all. Unlike Dr. K he hasn't participated or published in anything about LQTS. And how much does he know about the late effects of chemotherapy and radiation on the heart? Is he really going to look at a months worth of ECG data to be ready to discuss it with me when he will being seeing a day full of new patients? If we follow up on the telemetry results will there be time for him to answer my questions regarding how knowledgeable he is about my situation. He looks pleasant enough but his ratings on communications and bedside manner were only so-so. Will he even be interested in addressing my concerns? I'll give it one appointment, but I just am not liking the way this seems to be washing out.

Another medical week

Monday I went to see Dr. Cn, the nephrologist. Once again my blood pressure was low then high when it was read a second time. There is was no real explanation offered. My electrolyte levels are hovering at the bottom of the normal range.  He upped the Lisinopril and advised me to take an extra beta blocker if I was ever having symptoms like I was having at the hospital.

Today I went to Dr. P's office to see one of his associates. He froze a few pre-cancerous lesions off my face. Try as I might I can't seem to stop touching it. I have no idea where this subconscious need to touch my face is coming from. I will see Dr. P in July to follow up on the lesions and do a skin check.

This afternoon my ex called to let me know that he was having problems with PE's again. He didn't want me to hear about it from anyone else. Actually all three kids and his foster parents told me sometime last week. Well, I'm very sorry that he's ill and going through this without much family around. I didn't make that choice for him, or rather that long series of choices. Still, I do have to wonder about why he calls me when things suck for him, because he always does. Yes, he's got my number, he knows that I still care. But caring is a moot point for me. It doesn't matter at the end of the day. Things are still the same.

I will see Dr. S, the oncologist tomorrow. I am so not looking forward to repeating the events of the last few months. Nothing like telling a hematologist about the newly diagnosed blood conditions you have. I just don't know how he's going to react. He could just blow it off saying autoimmune diseases stink, or he could want to do a whole check-up to make sure that it's not gastric cancer. I'm just not up for another workup. I am burned out by this already.

On the bright side of the week, tomorrow night I will go over to Mollie's and make a meal to celebrate her birthday. We will be having her childhood favorite, Porcupine Meatballs, Green Beans and Dinner Rolls followed by Brownies. Here's to hoping that Caleb's mom isn't a gourmet cook or something. I think the recipe is from the back of a can label. I will eat sparingly and probably pass on the rolls and the brownies. There are just too many carbs with this meal.

Hope all is well and rosy for you.

What to do?

When I got home last night after going to the gym I found a letter in my mailbox from Big Heart Institute on Heartbreaker Hill.

Dear Valued Patient,  (I knew this wasn't going anywhere good)

Harry K, MD has resigned his employment with Big Heart Institute Physicians, Inc. effective June 1, 2012 and may be contacted at the following website address: (his website address)

In order to ensure a smooth transition, we invite you to stay with Big Heart Institute Physicians as one of our other electrophysiology physicians will assume responsibility for Dr. K's patients moving forward.

Nothing is more important to your health than taking care of your heart- please call 404-555-5555 to schedule an appointment. We're here to help you - and your heart - stay healthy for years to come.

Sincerely,

Chief Medical Officer and Vice President of Operations

What the Hell! When I got inside the house I logged on the the website to find out that Dr. K is going to be doing some intensive training for several months and it doesn't sound certain that he's coming back to Atlanta when he's done...Wow! What do I do now?  I have an appointment with him at the end of the month to discuss the results of the month long ambulatory telemetry monitoring. The website said to call L, Dr. K's nurse if I had any questions. Yes, I have a question. What the Hell!  Anyway I did speak with L today and she will be working with the other electrophysiologists, but she couldn't tell me which would be available on the day of my appointment. And she assured me that she'd have the doctor aware that they would need to look at the telemetry reports. This is disturbing on so many levels. I chose Dr. K because he's one of the best EP's in Atlanta. I don't even know who this new guy is. After all the controversy I've faced over my diagnosis with LQTS and the dissatisfaction that I've had with doctors who don't know me, I'm supposed to just be fine with the first guy that walks in the door? This just doesn't sound like a good plan to me.

Crisis of Faith

I haven't written much for the past week or so. Several things converged to show me an area of my life where I really lack faith. I'm not comfortable revealing many of the details so I will just try to skim over it.

I trusted Christ as my savior when I was 13 at a youth bible study. The youth pastor's wife was Ray's daughter. Ray's other daughter was working with another branch of the bible study in south Texas. By this time Ray had started a bible college in south Florida and in the summer held week long camps for the teen's who attended these studies. When I went to college I chose to go to that bible college mainly because it felt comfortable to me. Having the Atlantic Ocean out the back door didn't hurt either. While I was there my room mate was from the bible study in south Texas. I met all her friends and one of them was the foster son of Ray's other daughter. I ended up marrying him. Having written this down it all sounds very cultish, but let me assure you that it was not. No one was handling snakes or drinking tainted Kool-aid. The doctrine that we were taught through this ministry is the same as in any mainstream denomination. In fact we were encouraged to go to church and worship with our families and participate there as well. (My family worshiped in the Presbyterian and United Methodist faiths) But I really grew up in my faith with this family. That was one of the myriad of things that made my divorce after 22 years of marriage horrendously gut wrenching.

Mostly it has been my recent contact with the family and with my high school and college friends prompted by Ray's home going that cast a bright light into this area of my faith where I am woefully lacking. It isn't the basic doctrine of salvation by grace through the faith of Jesus Christ. I still adamantly hold that as true. But some of the other teachings I look at and think that just isn't practical in the world that I'm living in. I know that a part of it is very clear biblical teaching that I can quote chapter and verse on, like "a deacon must be the husband of one wife" 1 Timothy 3:12. I look at it and shrug and say, not likely in today's society. I even don't take notice when that isn't considered in the church. For the most part I have no knowledge of the prior marriages of the people serving in our church and know for a fact it does not keep anyone out of ministries in our fellowship. I don't think any of our elders or deacons have had prior marriages. But if I found it out, I doubt that I'd be standing  before the board asking for their removal. But the catch is that this is a clear biblical mandate. But by my attitude I show that I really don't attach much importance to it. I know that God isn't out of touch with our society. I know that He isn't wrong. So it only leaves one other alternative and that is that I am wrong. I just don't see why I'm wrong. We all make mistakes. We all find ourselves in circumstances that we make bad choices. But if we confess our sins He is faithful and just and will forgive us our sins and cleanse us from all unrighteousness. 1 John 1:9. So why all the reprisals? My ex apologized to God and to me for the circumstances that led up to our divorce. I think that's all that really needs to be done. I don't think his church should continue to hold it over his head. It's forgiven, let's move on. So on the point about ignoring the biblical mandate that deacons only be married to one wife, why am I wrong? I know that God is right, but I still don't accept it. This is just a minor example of this. There are much deeper issues. I accept that God is right. I accept that I am wrong, but I want to know why I am wrong so I can truly believe it. I have asked God to show me, but I am still struggling with these issues. I have always been told that you can't pick and choose. You either believe all of it, or you don't believe it. The most important truths of salvation I believe, I just struggle with the lifestyle portion of it.

This is where I've been for the past couple of weeks. I have been identifying with the Simon and Garfunkle song "Kathy's Song".

"And so you see, I have come to doubt, all that I once held as true. I stand alone without belief. The only truth I know is you.

And as I watch the drops of rain, weave their weary paths and die, I know that I am like the rain. There before the grace of you go I."

 Can someone please tell me how to load the YouTube video's so I can share these songs?