Life With Bean...Long Needed Update

Hello out there!  Its been too long since my last post and we've done so much, I couldn't possibly cover it all.  So, I am just going to cover our most recent doctor's appointment in this post and then will try to do some backtracking for you this week.

Yesterday we had a heart clinic appointment at Lucille Packard (LPCH).  The appointment went pretty well considering Bean has now begun to realize that hospitals are not amusement parks and she is probably going to get poked and prodded.  We had to start off with a blood draw, which we usually try to have done here in Chico because the woman who does it here has the magic touch with Bean's somewhat belligerent vein...she can always get blood on the first poke without having to dig around.  At LPCH, amazingly, considering how large the Children's Hospital is there, we have to go to the adult side of the hospital and they always have problems.  The last time we went there, the woman dug around in one arm for about three minutes, never getting any vein and then proceeded to the second arm, dug around there for about the same amount of time before hitting any vein.  It was horrible.  This time was considerably better.  Thanks to the woman at Chico, I no know that one arm is much easier to find vein than the other, so I offered that one up and she did have to dig around a bit, but probably only for 60 seconds or so before hitting vein.  Whew...Bean was still screaming bloody murder the entire time, but it was much shorter than the last time.

The biggest problem with starting the day with a blood draw is that Bean becomes convinced that everyone she comes into contact with during the day is going to stick a needle in her.  So, she screamed while we weighed her.  I had to wrestle her down to get measured.  Thankfully, the echo rooms have TVs in them and we hit during Mickey Mouse Clubhouse, so she would get distracted by that, then every once in a while she would realize where she was and start writhing and screaming... The echos probably take 30-45 minutes, but it seems like hours that you are stuck in there.  I have to hold her down because she tries to roll over to avoid the little tool they use or she takes her hand and pushes them away as hard as she can.  And she is getting stronger.  But, we survived.  I always feel bad because I know people can here her screaming up and down the hallway and out into the waiting room - and the echos are not at all invasive.  But, she HATES being held down or restrained in any way, so she hates the echos.

Finally, we got everything taken care of and I was excited to see Dr. McDreamy was back and would be her main doctor this visit.  Sure its ridiculous to call him that, but he is very cute and heck, I have to find something good about these visits!  We also got to say goodbye to one of my favorite fellows while Bean was in the hospital.  She was the one who wrote these orders in Bean's chart:

"decrease vent rate to 26bpm and give Mackenzie a kiss to make her feel better."

She was so awesome!  She is returning to North Carolina where she went to school and they are lucky to have her.  I'm sorry we won't see her anymore, but I will truly always remember her and be thankful for her being our fellow.  

So, back to Dr. McDreamy...he examined Bean, looked at all her records, asked all the regular questions and then Dr. Chin, the head post-transplant cardiologist who oversees everyone who works with Bean came in and they had a little chat about her rejection status.  When it was done, Dr. Chin left and my hubby asked about the repeated 1A status.  He was super honest and said that they really don't know...because pediatric transplants are so new and the medicine regimens have been changing as medicines get better, etc. they really can't say what a repeated 1A rejection means.  He did explain, for the first time that I can remember, what a 1A status means though.  It means that white blood cells are found in higher numbers than "normal", meaning that her body thinks the heart is an infection or foreign object.  But, it means that the tissue sample shows no signs of harm from those white blood cells.  So, her immune system is working, but not so well as to cause any actual damage to the heart at this point.  He said that some places would treat 1A as normal, while others would act aggressively to get to zero.  LPCH is somewhere in the middle.  And he said his thoughts are that increased medication risks damage to the kidney later on and that a large number of pediatric heart transplant recipients end up needing a kidney transplant in their late teens/early twenties due to medication.  So, he thinks if it isn't showing damage, increasing the meds is just asking for something else to go wrong later...and he said that he probably isn't much more able to guess correctly than we are about what this means long term.  I told him that I hoped he was at least a LITTLE more able to guess correctly than we were...all that med school and all...My very favorite quote of the appointment though came at the end of that discussion, when he said, "basically, we're looking at the best possible transplant patient that I've ever seen."  Which is a pretty awesome endorsement of Bean's current health at least.  :)

So, we are in the same old place we've been.  Biopsy is scheduled for six weeks from now.  This one will be her annual, which means they do all her pressures, test her arterial flexibility, plus all the normal stuff they do at biopsies.  So, it will be a longer day than normal because she has to under for longer and then recovery is slightly longer.  Hopefully all goes well though and we get that just-out-of-reach zero we've been looking for!

In addition to the appointment, we also visited my parents, who live about two thirds of the way to the hospital from our house.  They so enjoy the Bean!  Overall, it was a great visit with them and a positive appointment at the heart clinic!  

As I said, I will be trying to play a bit of catch up on here over the next week or so as we've done some really fun things and Bean is quite the character.  I wouldn't want any of her fans to miss out on her escapades!  

Thanks for reading!  To finish off, our friend Karina just got back from a trip to China and she brought back an awesome hat for the Bean.  Here are some pics of her in the hat and towards the end a cute little dress my sister made for her!

Hat from China, Bean from Chico

Papa, Bean and Grandma on the couch.

Trying to get her to show the matching bloomers...

Daddy and Bean - she's saying "cheeese"

Grandma and Bean on a walk

And...we're done...

Doctors & Hospitals - Resource for Parents

Doctors & Hospitals

The link above will lead you to a great resource! For those who are unfortunate enough to be looking forward to hospital stays and/or multiple doctor visits, there is some great advice. There is also good advice for those who have a young child taking medicines (how to get them to take it, etc.) and the administrative things you need to consider for health care of a child. I HIGHLY recommend this as a bookmark for anyone as you never know when you will need the information and it will make you feel better to have it when you need it! I subscribe to the Kids Health newsletter and although a lot of the information is for children much older than Bean, I have found a number of things in it to be very useful.

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.