Back in the hospital and another diagnosis...

Well, as I reported earlier, the gallbladder was successfully removed. However, two days later she start having excessive swelling in her abdomen, back, legs and excruciating pain. Then she started experiencing a sharp pain when breathing in. Poor baby, such a trooper. She spent ten hours in the ER on Monday, then was admitted to hospital. Lots of tests to see if any problems with gallbladder removal - and everything checked out OK.
During her hospital stay we finally received the results on her liver biopsy.

Before I talk about the liver biopsy, I need to give you a backstory on Heather's health.   When Heather was in middle school she became ill and was lethargic, had high fevers, hives all over, joint pain, sensitivity to light, and no appetite. After many doctor visits and blood work, it was determined that she had an elevated ANA. These numbers were high, but not high enough for Lupus and Juvenile Rheumatoid Arthritis (which they thought she might have). In most cases, a positive ANA test indicates that your immune system has launched a misdirected attack on your own tissue — in other words, an autoimmune reaction. But some people have positive ANA tests even when they're healthy.

After about a month, Heather returned to her normal, healthy, and active life. My main concern was her weakened immune system. When she got sick (or run down), it took her a bit longer to recover.

From middle school until her Lyme diagnosis, she kept up with an extremely hectic and active life style.

So in 2014 Heather became ill and that is when we discovered her Lyme disease. The doctors are now pretty confident that when Heather became so sick with the Lyme disease that her immune system became even worse and started advancing the attack on her liver and other organs.

They also mentioned that her immune system had been silently attacking her organs for probably 20 years. Heavy heavy sigh. Since she was never really "sick sick" and never had liver symptoms, they never looked at her organs until she was sick with Lyme

When she had the surgery to remove the gallbladder that just kind of pushed everything over the edge and her immune system is out of control (my words). They are encouraged that they can treat the liver with medicine to control the symptoms and to halt any progression of the liver disease.

We are adding another team of doctors to help with this. The doctor said that for someone with a mildly compromised immune system, like Heather's in her teen years, organ issues typically would not have surfaced until much later in life (60s) and then it would've been an extremely serious problem.

Heather's appeared sooner because of the Lyme disease and the stress and strain that put on her body. These are the facts as we know them now and they may change as they dig deeper. I just felt that some of you may have wanted to know what was happening since we have been recently quiet.

To be brutally honest, she feels like shit right now from the swelling and is overwhelmed with how complicated her case has been. Every single doctor that enters the room starts out with "well, you certainly are a mystery and a very interesting and complicated case." Where is Dr. House when we need him? A quick fix would be great.

Thank you for your thoughts, concerns and prayers. We appreciate it. Heather is at a great hospital and has an incredible medical team. We are confident that they are approaching this the correct way.

Heather is an amazing patient and the nurses just love her, but of course who doesn't love her. She has shed a lot tears in the last few days out of fear of the unknown, a desire to get some answers to make her feel better, and just shear frustration.

We are in contact with her Lyme doctor and keeping them up-to-date. I have to give a great shout out to the Lyme doctor. When he first met Heather and was going over her medical history he suspected that she had autoimmune hepatitis.  He was insistent on the tests that were run, the removal of the gallbladder, and the liver biopsy to either confirm or rule out the autoimmune hepatitis. He knew this would affect her Lyme treatment. Several other doctors felt the gallbladder removal was unnecessary because she wasn't experiencing gallbladder symptoms.

I am rambling - so much to say - but I must focus on Heather right now.

xo
Lisa

Surgery went well

Flowers in front of Heather's bedroom

Heather's surgeon said that her gallbladder was extremely enlarged and had pretty much stopped functioning.  He cleaned up adhesions and says that she did great during surgery.  Surgery was laparoscopic with three tiny incisions - yippee for minimally invasive surgery.

She spent a few hours in recovery and now we are home.  As expected, she is in pain, but we are relieved that surgery went so well.  

Whew.....I am a less anxious and happy Mom.

Xo
Lisa

Surgery for Heather on Wednesday


Sadly, this isn't the first time Heather has had surgery.  In 1982 I  gave birth to a healthy beautiful baby girl and three days later I took this sweet baby home.   At home she became very ill and was readmitted back to the hospital when she was one week old. She had a duodenal web (intestinal obstruction) which required surgery and two weeks in the ICU.



Then when Heather was 15 months old she began vomiting (similar to when she was infant). She was admitted to the hospital and they realized that adhesion's (scar tissue) from her earlier surgery were causing another intestinal obstruction. Another surgery was performed and she was sent home after two weeks.

Well, fast forward to June 22nd and now, because of this insidious Lyme disease, Heather's medical team feels that it is best to remove her gallbladder. They are optimistic that they can do it laparoscopically however, her incisions from her first surgery may require a different approach. Best case, the surgery is about an hour and a half, a few hours in recovery and home to recuperate. 

I vividly remember Heather's surgeries as an infant, but I also know how resilient she was and how quickly she recovered.  I am confident that Heather will bounce back from this procedure and we can check another thing off from that damn Lyme Disease "checklist to recovery."

The picture for this blog was taken in 2009 at the beach - love my baby girl's smile and spirit. 

I love you Heather and I have complete faith in your medical team.

xo

Lisa

SUP ???? Fun on the lake and surgery

SUP??? - Well this means two things.  First, Heather has a new stand up paddle board (SUP).   Of course it is lime green - gotta keep spreading awareness.   This picture sums up how peaceful and perfect this is for Heather.  Added bonus, she will build up strength and muscles while cruising the lake.

Second, urban dictionary defines SUP as "A term that cool people use because they are too damn lazy to say What's up."  

Well, just to let you know what's up with Heather, she is having her gallbladder removed on June 22nd.   Yes, we can blame Lyme disease on this one too.  Damn ticks.  Fortunately, it is an outpatient procedure, then recovery at home for a few weeks.  

I will update everyone after surgery.  

xo
Lisa

My view of Lyme Disease and the Controversy with the Medical Community

This is MY understanding of Lyme Disease - remember these are just my thoughts and opinions. 

Shall we begin?  Lyme disease sucks.......begin rant.......

1. A person is bitten by a deer tick. The longer the damn tick stays attached, the more likely it will transmit the Borrelia burgdorferi bacteriaand other pathogens into your bloodstream. If you are lucky and see the rash AND get immediate treatment, chances are pretty good that you may be able put the Lyme into remission.    


2. Whether  you see the rash or you think you have Lyme (based on the symptoms), the testing for Lyme is inaccurate and unreliable.  Standard Lyme tests measure the antibodies that are being produced after the insect bite occurs. Since Lyme wreaks havoc on your immune system, your body stops producing antibodies just a couple weeks after getting bitten, therefore making the test wildly inaccurate for any time a week after the bite.  However there are a few labs that have the best results in detecting Lyme disease.  Igenex is is one of the best.


3. It is Lyme not Lymes.  A major pet peeve is when I hear a "respected and knowledgeable" medical doctor refer to  Lyme as Lymes disease.  There is no S at the end of the Lyme.  Arrggghhhhh.  And they want me to respect their opinion about a disease that they can't even pronounce. 


4. The guidelines for treating Lyme Disease are outdated and don't help patients suffering with Chronic Lyme.  The Infectious Diseases Society of America (IDSA) sets the guidelines that the Center for Disease Control (CDC) must follow.  The IDSA lyme guidelines clearly state that  persistent/chronic/late-stage Lyme Disease doesn't exist.  This ignorant fact can be disputed by numerous published research and articles.


5. Yay for the International Lyme and Associated Disease Society (ILADS) - not the IDSA mentioned above.  Breaking news in Feb 2016 was that the National Guidelines Clearinghouse (NGC) –a federal database that provides treatment information to health care professionals and insurance companies–has removed the outdated and harmful IDSA Lyme disease treatment guidelines from its website recently. This means that the only Lyme disease guidelines listed on the NGC are those of  International Lyme and Associated Disease Society (ILADS), which were posted in 2014. This was a huge step in the right direction for the Lyme Community. 


6. When Lyme isn’t detected in the early stages, it becomes Chronic Lyme, a condition which the CDC and IDSA both deny even exists. They will continue to deny it, because if there’s one thing insurance companies hate, it’s chronic disorders they have to spend time and money treating. Insurance companies refuse to pay for any treatment beyond the 6 week treatment that Heather received in December 2014 and that DID NOT fix Heather.


7. What does this mean for a Lyme patient that is looking for treatment?  The patient must find a Lyme Literate Medical Doctor (LLMD).  Sadly, any and all expenses are out-of-pocket and are the responsibility of the patient to cover.  These LLMD are not trying to rip off sick people, they are doing research, modifying their protocols and trying to fix these chronically ill Lyme patients. The treatment is expensive and not covered by insurance.


8. Lyme Disease triggers numerous co-infections and autoimmune conditions.  


9. The majority of mainstream medical doctors are not educated about the existence of chronic Lyme and the symptoms.  They are quick to judge the patient and they disapprove of any treatment that the patient is receiving from a LLMD.  Trust me, the patient and their support system have done exhaustive research looking for answers and/or doctors to not only treat their disease, but to treat them with respect. 

Bottom line - there are too many people that are suffering because of Chronic Lyme disease.
Each year over 300,000 new cases of Lyme are diagnosed.  How many of those will be chronic cases - who knows?  This number will only be reduced with more research money to find better diagnostic tests, affordable treatment, and ultimately a cure.   We must speak up for those that can't.  Lyme disease is an awful and insidious disease.

I am in awe of your strength Heather.  You did NOTHING to deserve this. 

Sadly, our medical system is failing you and hundreds of thousands of other Lyme patients. 

They aren't ready, no let's correct that statement, they aren't willing to recognize that Lyme disease can be a chronic and the number of people infected is becoming an epidemic.


WE MUST FIND A CURE. 


Rant over......
xo

Lisa

Happy Birthday Heather!!!!!

Happy birthday to my beautiful Heather. 

I love you and hope that every day is filled with love,  laughter, and puppy kisses.  

You are the best thing that has ever happened to me.

 

 

 

 

 

 

 

Childhood dreams and home sweet home

When Heather was little, it was always fun to see what she wanted to be when she grew up.  Well, as with all children, her jobs were varied.  I wanted to be a Veterinarian, but the fear of someone bringing a snake in for treatment stopped this dream.  Truth be told, I never liked science, so the snake was my excuse. 

I recently found a school paper that I wrote in third grade. The subject was When I grow up.......  Here was my response:

When I grow up, I want to be a housewife.
I don't want to work in a store all day.
I would be bored.
I want to live in a pleasant home.

Classic right?  I got an A-.    


When Heather was nine she wanted to be a cheerleader.  It made we wonder if our trips to the museums were so boring that she would rather wear sneakers and a cute short skirt and yell out "first and ten - do it again"?"  Don't get me started on the politics behind a few of the cheerleader moms.  Some were A  G  G  R  E  S  S  I  V  E.    

Don't get me wrong - there is nothing wrong with cheerleaders, I was just making a snarky comment about aggressive moms.  You'll read my comments about stage moms later!  Oh yay.  

Well - here is my cheer for the day..........Give me an H, give me an E - just give me a healthy Heather please.  

Heather's next dream job was to play with the dolphins at Sea World.  Maybe I wasn't the most encouraging mom when I told her she would have to get a bachelor’s degree in biology, marine biology, or animal science.  That's a fun conversation for your 10 year old.  So, I indulged her love of the ocean and animals.  I told her it was better to watch the dolphins playing freely in the ocean.  She admitted that she didn't want to hold the smelly fish to feed the dolphins, but holding their fins as they pulled her around the tank would be a great job.  Needless to say - she didn't pursue that job.

Annie - 5th grade musical

Heather's real passion was acting.  As a toddler, she would go with her Grandmother to the local elementary school and watch as the 5th graders practiced for their annual 5th grade musical.  She was mesmerized by this.  She would sit patiently for hours watching.  When she was 6, they would sometimes let her fill in for one of the cast if they were sick.  

Before I knew it, Heather was bitten by the acting bug - this is a bug that I could handle and that wouldn't hurt Heather.  Damn it - can I just once, not think about Lyme and ticks?


Heather had a natural talent and love for the stage and performing.  When she was 13 years old, she found a manager, and by the time she was 15 she had her Screen Actors Guild card. 

Professional headshot - 2003

I know, you are all probably thinking that I was your typical stage mom - well I was really her personal driver and guardian.  I would drive her to the auditions.  If she booked the job, I had to stay on set during the filming.  Typically about 3 hours into filming, the director would ask where I was and Heather would sweetly say "My mom's a nerd - she in the car working on her computer."  Eventually I would venture onto the set and they would thank me for not being the "typical" stage mom.  

Acting wasn't my job - it was Heather's.  She booked the job and she had the talent.  My "nerdy" job involved computers and writing.  Side note - just to be clear - Heather thinks I am a nerd - but I am not. 

Eventually Heather moved to NYC to study musical theater, and then she started working for one of the largest restaurant groups in the country.  What more can a Mom ask for, she was happy, she was healthy, she had an amazing work ethic, she had a great group of friends, and she was financially independent.  


Never in a million years did I think that this career driven, hardworking, honest person would have her world turned upside down.  If I have to look for the positive, my baby girl is now living with me.  I can help her navigate this complicated medical journey.  

I can see with my own eyes how she is doing.  Remember, she was an actor, and she has this amazing ability to act like a healthy person.  She doesn't want this disease to define her, and she really doesn't like talking about it.  When she has the energy to socialize with friends, should would rather use her energy to laugh, live, and love. 

Home is the best place for her now.  My parents are close by, I have wonderful neighbors, my girlfriends are here, basically there is a village of people that will help any time and any way that they can.  Having her home has been good for me - I get to see those dimples every morning before I leave for work and, I get to hold her when she is in pain and scared.  


Another benefit of Heather living at home, when she has the energy she LOVES to do laundry, clean the dishes, cook, and vacuum.   She knows how to fold clothes like they just came out of the factory packet. Do I feel guilty - um - NO.  Everyone needs some structure and if I can benefit from her love of housekeeping - then bring it on.  

The best part is when she comes upstairs with the perfectly folded clothes and in her best Downton Abbey accent she says "I hate to bother you ma'am, but your laundry is clean and folded - can I do anything else for you tonight?"  I smile and remind her that one of her previous jobs was a bartender and a martini would be lovely.  


Welcome home Heather.  I look forward to some funny videos, boat rides, snugly TV time, and trying new recipes.  I will be with you every step of this journey.  I look forward to seeing the progress you are going to make in healing and conquering this damn Lyme disease. 


I am going to cherish the days that you are home while you heal, then I promise I won't cry when you move to your next home.    HA - we all know that is a lie.  


xo

lisa