Perspective on Health Care - Primary Care Physician

Health care is obviously a big concern to me and my family.  We no longer have the option to be unaware or nonchalant about that part of our lives.  I have been through a lot of workplaces in my lifetime and I don't ever remember even checking to see what the health insurance was, let alone what the co-pays were or prescription coverage.  As long as there was some kind of health care, I was fine with it.  But now, I have to be concerned.  I went to our benefits fair for the first time this year, just to ask whether any changes were happening to our health coverage and if so, what they were.  (Luckily, there were none - we're paying more each month, but considering I was on furlough for the entire year last year, my take home is still more than it has been, so we'll take it.)  I've never been to a benefits fair for any reason other than getting free stuff before!  So, I follow the health care discussions and try to figure out how new laws may change things for us.  And I am definitely someone who has concern over the high cost of health care.  But, I think its interesting to hear different perspectives on the issue.  My debate team did a panel presentation on health care a few semesters ago, and I remember someone in the audience introducing himself as a local doctor and discussing how the health care issue was making him struggle as a physician - I had never thought of things from the doctor's perspective prior to that.  After all, I had fallen for the urban myth that all doctors were rich and they were part of the problem, not the solution, for cost in health care.  But, that night changed my view.  As I was reading through a medical newsletter I receive, my eye landed on a similar story and I thought I would share it with you - just in case you are still believing the myth of he rich doctor overcharging for services...


The blog post, simply titled, "Caring" was written by Dr. Rob, a primary care physician in the Southeastern U.S.  He writes of his experience as a physician, adjusting to the new "patient-centered" health care (of which he is a fan), but he also writes of his challenges:

So why is it, then, that those of us who try to be patient-centered in our care end up getting penalized?  If the days of the doctor-god are over, then why are we still paying premium dollar for those huge egos?  Why do we pay more for technology than humanity?  When I face the continued threat of declining reimbursement (don't forget, the next SGR battle will be over a 30% drop in Medicare reimbursement) I feel angry.  I am the point of care, not cost.  I am cheap. I spend my day trying to keep people well, trying to find cheaper medications for them, trying to avoid expensive procedures and consultants.  How am I rewarded for fighting the tide of spending?  With increased expectations, increased fear of the future, and decreased pay.  I see the gratefulness of my patients, and that keeps me from fleeing altogether; but I also face the callous cuts by CMS, the increased micro-management by the insurance industry, and accusations of being a "greedy doctor" for not wanting my pay cut.

 First off, this is not the first time that I have heard of primary care physicians getting major cuts in the amounts they are reimbursed from both the government and insurance companies.  But he talks of other things that I was not so aware of and that make me kind of sad:

 In the past few weeks I have done three "mobility evaluations" for people who are trying to get scooters.  They have done this in response to the commercials or direct phone calls from the companies that provide these devices.  Beyond that, I have seen a huge increase in the number of ludicrous requests by these companies who prey on innocent and ignorant patients.  They are leeches.  They are bloodletters removing the life-essence from a dying patient.  Yet their presence is growing.

We all laugh at those commercials where the person is cruising around the lake on their scooter, but I didn't realize the implications of those commercials.  I had never thought beyond the ludicrous commercials to the ludicrous requests they may be causing.  He goes on to discuss the complexities now involved in prescribing medicine - something I can definitely related to when looking at the costs on our monthly medication bill (thankfully, we only pay a $5 or $15 copay for Bean's medicines, but I see the actual cost charged to the insurance company as well - and for some of them, wow...).  He closes his post with a plea:

We have a bunch of hands being plunged into the coffers of healthcare, and yet we are penalizing those who are too busy caring for patients to do so.  I honestly get depressed when I see all of the waste around me and yet face huge cuts to my reimbursement.  It shows people don't understand.  It shows people don't care.  Do you want doctors who care?  Then put your money where your mouth is.  Stop rewarding the parasites.  Stop throwing money at the turnstiles.  Stop rewarding the spenders.
There are some of us who still care, but it's getting harder to stay that way.

I know that there are lots of problems with health care.  I know that we have been the lucky ones - getting the emergency and long term care that Bean needed so desperately when she needed it without problem and without much cost (comparatively speaking to the total cost) to us.  But, I also realize that doctors are so important to us.  I respect them and I am indebted to them.  I do not want them unfairly vilified or unable to maintain their practices due to a flawed system.  So, I thought it important that I share this story and hopefully raise awareness about the struggles of our primary care physicians and pediatricians who are the first line of defense in maintaining our good health.  Let's figure out a way to reward those who care and make this system better for everyone involved - the patient, the doctor, and those who work in the health care industry.

Back to Blogging Day One: Back to the Beginning

In the interest of being a little more consistent about my blogging efforts here, I am participating in a week-long Back to Blogging program from the Sits Girls blog.  I am a day late in doing the first post, but I figure better late than never and I'm just going to do it and move on to the second day when I have the time (maybe today, maybe tomorrow, maybe later in the week).  The sponsors of the program are Standards of Excellence, Weststar Kitchen & Bath, and Florida Builder Appliances.  So, thanks to them for sponsoring the Sits Girls in giving me the swift kick in the ______ that I need!

The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:

A Year of Thanksgiving...and Soul Searching

Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!  I am choosing today to start this blog because I have a lot to be thankful this year - and I feel like I could spend a whole year saying thanks.  So, this starts my year of Thanksgiving...
My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart.  She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest).  We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago.  Needless to say, our lives have been turned upside down.  We have to give Bean medications three times a day.  We have to flush a broviac line (something like a semi-permanent IV) each day.  She has a lot of doctors appointments that are about three and a half hours away from our home.  We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry.  My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges.  We will need to figure out additional forms of income.  We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean.  We will need to deal with insurance debacles that are threatening to put accounts into collections.  We will need to become aware of medical issues that come with Bean's medications and treatments.  And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them.  Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet.  But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart.  I hope you will find something that is helpful to you!

Well, there it is.  It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago!  We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully!  We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life.  I still need to get more organized.  We are still constantly looking for additional sources of income and often short on money and time.  We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month.  We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast.  We are hoping for the same this year!  I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it!  So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit!  I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy.  I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey.  And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...

So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do:  "get me back into a posting and commenting routine now that summer is over."  I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began!  Its a challenge...but, I feel motivated!   

I Have Bad News and Good News....

Which do you want first?  Don't you hate when people say that?  I do...but, in this case it is true.  I'll do the good news first...and tell you that the bad news isn't really THAT bad.  It is more what I would call disappointing news than BAD news...Bean's annual workup showed that her new heart is working well and that the arteries seem to be holding up quite well.  All of which is great news...and to accompany that great news, here is a picture of Mackenzie after her pre-op Verced...feelin' pretty giddy...

Now to the bad news...(to visually represent this, I give you Bean after the cardiac cath, when she woke up with a Kedamine hangover that made her very, very grumpy and difficult to console):

So, the disappointing news was that she is once again at 1A status.  This is not devastating news as it is the lowest category of rejection, but in the end, it is still rejection and that is not good news.  She has only had one zero, which means she has pretty much been in some level of rejection almost the entire 13 months she has had her new heart.  So, we are back on the treadmill of changing the anti-rejection medication dosage, blood tests (next week), clinic appointment (one month from now) and biopsy (two months from now).  We were really hoping to get on the more regular post-transplant schedule of spacing out clinic appointments and biopsies by six months or more, but such is life and we will take it as it comes as long as the Bean is healthy and well. 
In addition to the 1A news, they also found her magnesium level to be very low (a chronic problem with her - and she already is on a pretty big dose of magnesium three times a day, which causes diarrhea, hurting her chances of gaining weight and also possibly ridding her body of the anti-rejection medication before its fully absorbed).  So, they decided to give her an IV treatment of magnesium while she was there.  This meant a four hour short-stay unit visit with an IV attached.  Bean was already ticked off because we were trying to restrain her to keep her arterial line site from bleeding (the line was out post-surgery, but we're supposed to keep her leg straight and vertical to prevent it from "leaking") - she hates being restrained and really wanted to be held.  After a while I picked her up and held her a few times because her crazy kicking and rolling moves HAD to be more threatening to the site than my holding her vertical for a few minutes...but it was a long and arduous couple of hours of trying to maintain her position.  Then she had this additional line going in which she kept wanting to remove (for those of you who were Carepage followers, you might remember her early experiences with removing tubes - ventilators, IVs, central lines - she's done it all).  So, the short stay nurse put socks on her hands and taped them down and she thought that was pretty special and proceeded to parade about the short stay unit clapping her socked hands and waving with me or her aunt behind her carrying the IV pump (those are my feet in the background):

So, we are back home again, with a lot of upcoming appointments - pediatrician, endocrinologist, PT and developmental therapy this week, blood draw next week, GI appointment the week after, now a clinic appointment two weeks later, and a biopsy the middle of October.  We are also working on scheduling an appointment with the regional center's nutritionist and occupational therapist to get her eating evaluated.  Its like a full-time job just figuring out my schedule!  :) 
I would like to end on a good note...according to the pre-op scale, Bean gained 9 oz since last month.  I'm not sure that its accurate - I'm interested to see her weight tomorrow at the pediatrician, since it will be the same scale as last time.  Hopefully its even MORE weight gain...but, I'll take the 9 oz.  And finally, a fun picture from Bean's first swimming experience this past weekend in the hotel pool...hope you all are well!

Summer is Officially Over! Annual Heart Cath Tomorrow

And to that I say "bleh" - which is what it looks like Bean is saying in this picture!  Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule!  But, its now officially over - I start back to work on Wednesday with meetings and office hours on Thursday and then classes begin on Monday.  So, I plan to be posting on a more regular basis now that I will have to have a schedule of some sort and I will fit blogging into that schedule.  I will do another post (or posts) with some recaps from our summer and all of our adventures - of which there were many!  Bean has totally changed since the last post in June!  She now has a lot more teeth (although still not many in the very front - she has two on the right top and one just barely breaking through in the middle bottom, but the rest in the front are still hiding out)...she is walking everywhere...and although she is not really talking yet, she makes animal noises like a champ!  She has been a walking, babbling baby for the past two or three weeks and it makes her a barrel of fun to be around! 

Tomorrow is Bean's annual heart cath.  Although she has had many heart caths, this one is a little more extensive since it is her "annual".  Her regularly scheduled caths include the biopsy for rejection, but her first one included a coronary angiogram - this one will repeat that test to make sure that she is not suffering from rejection issues that may be more long-term than the biopsy is designed to test for.  She is on medication to lower these risks, so our hopes is that they detect none, but she will have this done every year for the rest of her life to catch any problems early on.  We are hoping that she will repeat the same zero for rejection that we had last biopsy and all will look good - that will mean less clinic visits and more time between the heart caths, which would be great for both her and us!  The drive to Stanford is long and with the hospital visit tucked in there, those days are extremely tiring - so the fewer we can have, the better! 

In addition to that, we have our first endocrinologist appointment this week - where we might find a source for her lack of growth.  No guarantees on that front, but it is possibly a hormonal issue which they may be able to solve.  I am getting used to her petite stature, but it would be nice to get a little fat on her before winter and cold/flu season rolls around as that fat is her reserve if she gets sick.  We dodged the bullet this past winter, but she was not nearly as active as she is now, so keeping her isolated will be much tougher this year.  So, figuring out how to have her gain some weight would be great.  She is 18 months old and is wearing mostly 3-6 month clothes (some pants have to be 0-3 months - others even newborn, although they look like flood pants, they fit her best in the waist).  We are getting lots of wear out of her clothes, but we'd prefer a healthier weight!  She is still seeing her developmental therapist through the Far Northern Regional Center, and will soon be consulting with the nutritionist and the occupational therapist about her eating - just to cover all our bases.  We got good news from the eye doctor (she has a "lazy eye", especially when she gets tired) - no surgery!  She may need to wear glasses because she is far-sighted (how they can tell that in a baby I will never understand), but he is definitely not advising surgery for her.  Such a relief...

I think that about covers this week in the life of the Bean.  Again,  I plan to do some "What I did this summer" posts as school gets started (just to be able to revisit summer will be good for those first few weeks of total chaos at school) and I plan to do some additional posts on health, medical and educational resources for parents.  I'm sure I will come across some other things to post about as well!  So, stay tuned!  We should get some basic results from her cath tomorrow afternoon after the surgery, so I will try to get something posted then, but it may have to wait until Wednesday when I get back home...it all depends on internet accessibility!  Either way, I will update in the next couple of days!

I hope you all had a great summer and are looking forward to a good fall as well. 

Teeth, Feet and Food

Note: I spent a while writing a post and then lost it during the posting process...a little frustrating! Hopefully I remembered to include everything in the replacement post below!

Sounds like a pretty horrible combination doesn't it? Well, its all HAPPENING at the same time, but are not necessarily related! Bean has had one tooth in the side front of her mouth for a while - we have taken to calling her snaggletooth because of it. But, she is now getting a few molars in the back and it has definitely been a bit of a pain for her over the last week. Luckily she has not run any fevers and has only has had a slight runny nose for a couple of days. So, overall it has not been too bad. But, she has definitely been more moody and has not been sleeping all that well. All of her teeth are one side of her mouth right now and they aren't really lined up at all, so chewing is an issue for her. The order in which her teeth are coming in is also strange - usually kids get their front teeth first. But, post-transplant Bean was on Cyclosporine for anti-rejection medication. The medication has a number of side effects, which includes thickening of the gums. So, this could be the reason we aren't seeing any other teeth yet - a mom on one of the transplant email lists I'm on said it took her son nine months after getting off of Cyclosporine for his gums to recede enough to see his teeth (they were there, just under the thickened gum). So, hopefully, we will see more teeth soon. She came off of Cyclosporine in late October/early November. It would be nice for her to be able to chew her food!

And hopefully she will start getting more excited about the prospect of chewing food! The GI docs put her on an antihistamine to stimulate appetite, but it doesn't seem to be helping with her food intake. For a while, she was a pretty good eater - she liked cereal (both baby and Cheerios), sweet potatoes, carrots, yogurt. And she ate pretty good two or three times a day. But, she has now started to refuse to eat from a spoon. Finger food only. Which would not be bad if she had teeth to chew the finger food, but as it is, she eats very small pieces, very slowly and often tosses many pieces over the side of her chair to our dog. So, her intake is not very much for each meal. Because I don't know if this is just a phase she is going through or some oral aversion she has developed, I have requested an occupational therapy evaluation from the regional center. Her cognitive therapist says she definitely has a slight tactile sensitivity. She gets anxious when she is on grass because it pokes her, she refused to touch a spiky gel-type ball toy the therapist brought a couple of weeks ago and she HATED pudding painting because of the pudding on her hands. I figure its worth getting her evaluated to make sure there isn't some aversion we should be dealing with early on. Luckily she still loves her bottle and drinks formula well, so she gets plenty of calories and nutrition that way. And she is still small enough that her drinking a bottle doesn't look ridiculous. But, at some point, I would like for her to be eating more food and drinking less formula! Really, we are lucky considering she was on IV feeds for most of her first six months of life. A lot of heart kids have to keep feeding tubes in because they don't adjust well to eating after so many months without it. But, I would feel even luckier if she were eating food better!

Finally, her feet. Don't worry - they have nothing to do with her food! She just took her first few steps the other day and I thought I would include a short video! Enjoy!

California Heart Connection Picnic Coverage

Although I was not able to go this year, I am really hoping to attend one of these picnics in the future (when Bean is a little older and can actually enjoy the activities and social connections).  The California Heart Connection, a group started by two heart moms in Southern California, hosts an annual picnic for the families of children with Congenital Heart Defects.  This year's picnic was the 10th one hosted by the group, with 80 families in attendance.  The picnic offers families a way to connect with others who are going through similar experiences, but in a non-clinical setting.  Its a great opportunity for both parents and children and a nice article was written about it in the Orange County Register, "Hope and help for ailing hearts."

In addition to hosting the picnic, the California Heart Connection has some great resources available on their website, ranging from help with insurance, support groups, printable forms, reports on research, etc.  It is not only applicable to those in California, but much of it could be helpful to anyone dealing with a CHD!

Positive Developments for HLHS Babies

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complicated and serious congenital heart defects out there.  Treatment includes a series of surgeries, the first coming almost immediately after birth, called the Norwood procedure.  If this procedure fails, a transplant is necessary.  A new study shows hope for reducing the number of deaths and transplants needed in children born with HLHS.

The study, conducted at the Children's Hospital of Philadelphia, compared results between the traditional surgery - "a modified Blalock-Taussig (MBT) shunt, which carries blood from an artery branching off the aorta to the pulmonary artery" - and a new procedure - "he Sano procedure or the right ventricle-pulmonary artery (RVPA) shunt, links the right ventricle to the pulmonary artery".  The results were promising, with a 74% of infants with the RVPA shunt surviving and not needing transplant compared to only 64% of those receiving the traditional surgery.  These results are promising, although work needs to continue as the RVPA showed a higher rate of complications requiring "unintended interventions, such as needing stents or balloons to keep the shunt open."  But a 10% higher rate of survival without transplant is pretty promising.

For more information, you can read "In Infant Heart Surgery, Newer Technique Yields Better Survival in First Year of Life," at Forbes.com.