Once again..above and beyond!

While I am still trying every avenue to return to BioRX as a patient, I remain under the *care* (and I use that term very loosely) of CuraScripts.  I would assume that most companies would simply move on and focus on their current patients, forgetting those who have been forced to leave their care.  This isn’t the case of BioRx! 

After calling CuraScripts to complain about the shipment, I was told I should expect a service contract to sign.  So when I received a padded envelope in Fridays mail, I expected a contract binding me to the sub-par service I so despise. 

I was thrilled with delight to see the familiar letterhead of BioRx as I removed the contents.  My RN was once again working busily behind the scenes just to make my life a little easier!  I read the letter, and eagerly looked at the booklet.  Though I am not currently their customer, BioRX  took the time to send me the infusion log that CuraScripts couldn’t be bothered to send!!!  That is what I call going above and beyond!  Sure, it was easy to type a letter, put it in an envelope and throw it in the mail, but my point is…they didn’t have to!!

Insurance dictates my infusion company??

**I do not receive any money,any incentives, discounts, or anything for discussing any of the companies mentioned below. I am merely a consumer and a customer with a lot of opinions to share!!**

In March of this year, I began receiving Gamunex (also known as IVIG)  in the infusion clinic at my doctors office. I tolerated the treatment well, but we soon realized my vein access was pretty bad after having to use a vein in my foot for one infusion (yes..it was terrible, but you do what you have to do!). My infusions typically lasted 12 hours total, which initially caused me to split my infusions over a 2 day period (6 hrs each) and later to a 2 week schedule.  Needless to say, this was difficult as my son had to spend the night with my parents, and added more fatigue to an already tiring experience.

 Switching to subcutaneous infusions was mentioned, which I was initially resisted.  A precious friend of mine, Carol Miletti, mentioned the infusion company she used and introduced me to the representative for my area while at the IDF conference this past June.  After a great deal of research and my meeting with those at the BioRx Booth, I was convinced that subcutaneous administration was indeed the right route for me.  I gave my information to BioRx and let my doctor know I changed my mind and who my infusion company would be.

In the past, I have always had to manage my own health insurance in situations like this.  Typically, I would call to find out what the doctors needed to do, relay that information, and help the process along as much as I could.  Not this time… I could not believe the way my transition to home Sub-Q was handled by BioRx!  After my contact with the Sales Rep, he called to set up an account a few days later.  I was contacted by my nurse-to-be to discuss health issues, etc. and had NO part in setting up or dealing with my health insurance or prescription coverage AT ALL. For someone with chronic medical conditions, this was a serious load off my shoulders and a stress reliever!!

I received my package exactly as described, and had fully detailed instructions and supplies.  I was taken back by how thorough BioRx was in anticipating my needs for each infusion.  They sent the pump I needed, a carrying bag, the infusion kit, syringes, needles/spikes (both for me to try and decide which I preferred!), alcohol wipes, band-aids, gauze pads, several speeds of tubing, quad tubing sets, an infusion log, HAND SANITIZER, tape, my pre-meds, an Epi-Pen, a sharps container, and a 24 hour number to reach a nurse or pharmacist if needed in addition to my RNs cell phone number.  I feel sure I am forgetting some of the contents, but my point remains…they thought of EVERYTHING!!  I was not left to figure out the process on  my own, but had a nurse come twice to ensure I understood and could infuse safely.  On the 3rd home infusion, she was available by phone with any questions I had and never once seemed bothered by my handful of phone calls. 

A week  before my medication was due to run out, I received a call asking me what supplies I needed, what I liked/didnt like, and general well-being questions.  If I needed any supplies in-between shipments, they were immediately overnighted without a problem. If I didnt like a product I was using, my RN went out of her way to find exactly what I needed.  I cant stress the level of personal care I received.  It is unlike anything I have ever experienced in the medical field.

Everyone at BioRx cares about my well-being and truly understands the needs of patients with Primary Immune Deficiencies.  I have yet to find another person or company that truly understands how serious our medical condition is and works as hard to keep their patients happy and healthy. 

Well, there is always a bump in the road…I received a letter from my insurance company (Blue Cross-Blue Shield of AL and Express Scripts (ES)) a few weeks into my Sub-Q  infusions letting me know they would *like* me to switch to their specialty pharmacy, CuraScripts.  The letter did NOT state it was mandatory but simply an option.  Had it stated the change was mandatory, I would have paid more attention!  I called Express Scripts and spoke with one of their representatives who assured me I could continue to use BioRx and even gave me an approval code that would last for a year, until July 14, 2010. He documented my file as to our conversation and as to the approval of my other company. I was ecstatic and e-mailed this information to my RN @ BioRx.  Problem solved, Right?  HAH!

A week or so ago, a representative from the Plasma Team with Curascripts called to set up my account and delivery for Gamunex.  I kindly let her know i was not using their company, and would be staying with my current company.  Her suggestion was to speak with ES to obtain an override. 

I called ES  and began chasing my tail.  The woman I spoke with initially believed I was on a chemotherapy drug and that I could receive it from a pharmacy of my choice. As for the approval code I was given, suddenly I was told it was for the use of Gamunex for a year, not for using BioRx as I was originally told and was documented in my file.  I could not get her to understand my point or to send me something supporting her point. I was also denied the ability to speak with a supervisor when requested.  She explained it was a BCBS issue since they are only a benefit manager.  Sure…

So, I called BCBS, who let me know that I had to use Curascripts.  NOT what I wanted to hear!!  I was NOT happy!  I was going to have to get medication from a company who didnt understand my diagnosis, didnt think they carried Gamunex, and thought I was on CHEMO??  Uhm…NO!  I had 2 doses of medicine left, which last a week.  Not exactly a lot of time to argue before my medication lapsed and made me more vulnerable to getting sick.

I ended placing an order with Curascripts though I was heartbroken doing so.  It felt like the beginning of a nightmare, which it was.  When placing the order, I was assured that I would be able to receive the exact supplies I had before and my care would not change a bit.  Well, that was a lie! 

1. Asked for a new infusion log – was referred to a website.  They saw no reason for me to log the Lot numbers or expiration dates for a BLOOD Product in case of a recall. 
2. When I told them I used Versaderm rather than Tegaderm, they said they didnt offer it.  They send a different site covering with LATEX in it- which Im allergic to – and meant for absorbing drainage from wounds!
3. Any tape I needed for my infusions (to secure the butterfly needles) was something I was required to supply along with band-aids and gauze pads*.
4. They would not request that BCBS purchase a pump for me although this will be a life long treatment and less costly in the long run.

So, today my first shipment arrived….10 of each - 5 gm vials of Gamunex, 60 mL syringes, quad tubing, rate tubing, and a sharps box.  NO 18 gauge needles to withdraw the medication into the syringe, no bandaids, no gauze pads, no tape,  weird bandage covering that is smaller than the width of the butterfly needle, and the best part…NOT ONE SHRED OF INSTRUCTIONS!!!  The only paper was a sheet on the side effects of Gamunex.

Sure, I can buy my own gauze pads, band-aids, and tape.  But that isnt the point.  They promised a continued level of care equal to that of BioRx, which they are not willing or able to do. 

When I asked about the Freedom 60 pump carrying pouch, you would have thought I asked for a Couch bag!  I dont think it is too much to ask for a bag to carry an ambulatory pump in to protect your very expensive medication.  I asked for the number for the manufacturer, which she was unable to provide!  You carry these pumps, but dont know anything about who makes them??  Geez.   

On to my other issues…Gauze, band-aids, and tape..They are considered non-essential items.  Apparently it is non-essential to cover a puncture wound in a patient who has a long history of serious skin infections with a compromised immune system.  The too-small-tegaderm-like stuff should be sufficient to secure the area and tape isnt needed either.  I wonder if they know they sent a product specifically for absorbing wound drainage?  Probably not.  Gauze isnt needed to massage the infusion sites to facilitate absorption either.  I thought I had a doctor to decided these things, not a company who knows nothing about me. 

 When asked about nursing, pharmaceutical or other help, I was given a number for tech support. The pump isnt even battery operated!   Another concern..do they not realize that administering this medication can cause reactions that may sometimes be life-threatening?? I guess that is a risk they are willing to take…but I am not.

There is a glimmer of hope for my situation.  Apparently, TN and AL have a law called *Any Willing Provider*, which addresses this exact issue.  It says (excuse my limited knowledge of it) that an insurance company may not force a consumer to use a particular company (CuraScripts) if another company(BioRx) is willing to provide the same service for the same rate.  Makes sense to me!  Basically, BCBS cannot force me to use a company based on the cost if the cost is the same..thats my version. 

The only issue I can imagine is that ES says it isnt their rule to use Curascripts.  Curascripts says it isnt their rule.  BCBS says it isnt their rule, that it is the rule set up by Lowes when they started the policy.  Hmmm…Im no legal eagle, but my bets are on BioRx on this one.

So…keep your fingers crossed that I will soon be back with a company that understands, cares, and anticipates my needs as well as others with Primary Immune Deficiencies, Hemophilia, and other infusion related services.  They really go the extra mile, and I am so thankful they are willing to fight and advocate for my needs.  Lets hope someone somewhere will listen and help!!

Sugar-high

“WOW, he’s had a lot of sugar tonight, hasn’t he?”  said the young Walgreen’s cashier regarding my son who is completely minding his own business.  Sure, he’s hopping in front of the door sensor to watch it open and close, but big deal.  What makes someone comment about a child who is just being a child?  Are we so warped that we can’t allow children to be children anymore?  My son is very bright and was likely trying to figure out what part of the door makes it open when he stepped on it or in front of it.  I didn’t ask him, but knowing him as I do it’s a safe assumption that was his mission. 

Normally, I would be offended at her comment as I have heard it many times before, but tonight I decided to take time to educate her a bit.  “No, he’s not had a bit of sugar.  (she looks at the Jolly Ranchers I’m buying..lol…darn sugar cravings!!)  If you must know, they are for me.  Adults like candy too, you know. He’s simply high on life.  Actually, he has ADHD and can be a bit more active at times than other children his age, especially at night.  He takes medication to help him focus, which wears off about this time.  He’s a brilliant child and happens to be a joy to raise.  He’s likely trying to figure out your door and how it works rather than trying to drive you crazy by opening it over and over.  Unfortunately, children with ADHD are often misunderstood as being pests when they simply cannot focus properly.  He also may have Asperger’s Syndrome, but that’s a whole other story.  So, no he’s not high on sugar…he’s high on life and being loved by his family.” 

She was pretty silent for the rest of the time she checked us out.  I wasn’t trying to be ugly to her, but simply wanted her to be aware that not all children are overfed with sugar.  Does he get to have sugar?  Sure.  In moderation most of the time.  To make comments about children when you don’t have children of your own or know the child is a bit presumptuous.  As my son’s mother it’s my job to stand up for him, be tactful in doing so, and help him navigate the world until he’s able to do so on his own.  When we left Walgreen’s, she said “Ma’am, I think your son is blessed to have a Mom like you who cares so much.”  I was really touched by her words, sincerely.  I thought for a minute and thanked her.  As we walked out…I couldn’t help but hope that all children have parents who care enough to do what’s right for their children no matter what.

After IVIG…

I made it through my infusion with the help of my wonderful infusion nurse as well as my amazing Nurse Practitioner.  I am truly blessed to have such a great team at the office where I receive my infusions!  Although my infusions take 6+ hours, their unending patience is such a blessing.  I normally don’t have issues during the actual infusion, but have had a few problems that we can’t relate to the IVIG for sure. 

Today was kind of an exception.  I started the day in a great mood, well hydrated, and ready to conquer the world!  I had slowed down taking my Lasix the day prior to help with venous access while also making sure I drank like a fish!  My last IV had to be started in my foot, which convinced me to do everything possible to avoid that experience ever again!  I’d rather be stuck 10 times for an IV in my hands or arms than have a single stick in my foot! 

My “Wonder-Nurse” started the IV, which looked like it blew at first, but a little wiggle and all was good.  I had raided the snack machine before relenting to my treatments, as usual.  This morning, my gut told me NOT to get the chocolate/peanut bar, but my fingers didn’t listen. 

So, I ate half of it thinking it wouldn’t trigger my dumping syndrome (Had gastric bypass surgery 5/05).  I really didn’t think 11grams of sugar would bother me (didn’t consider the prednisone or the D5w).  So, about 10 minutes after eating it my heart is pounding and racing.  The O2 sensor shows my heart rate at 138, which freaks my nurse out.  I tried to explain what happened, but getting my point across thanks to my premeds.  My NP came in agreed it was likely dumping syndrome, and the hunt for a glucometer was on.  I had one in my car which I offered to get, but they didn’t think I should go to my car.  So, they get one from the OB unit which says my glucose is 86.  I knew that was wrong.  After a lot of convincing, I head to my car with the other infusion nurse.  325 is my reading…dumping syndrome and I feel stupid. 

After being a human pin cushion for the next few minutes, they decide I need to eat some protein…ahh a break!  A delicious chicken breast later and I’m ready to go again.  I sleep for the rest of my infusion..blissful sleep.  No one bothers me a bit, and that’s how I like it. 

This IV took 8 hrs for 20 grams.  I keep mentioning doing infusions at home, but keep being blown off.  It’s a big deal to drive 90 min, sit for 6 hrs, spend the night, and drive home the next day.  What would I do if I didn’t have my parents to help out with my son?  Home Health Care is easier for me and will help me resume a more normal lifestyle, so I’m not sure why they are hesitating.  My infusion nurse also brought up the possible need for port placement due to poor access.  Maybe I’m weird, but I’m fine with it.  As long as I can be taught to care for it properly to avoid infection, I don’t see the problem with placing a port.  Sub-Q therapy isn’t the best idea for me because of the skin issues I have i addition to the irritation from the shots I already take weekly in my abdomen,but we are talking about it as well.

Full of antibodies, I head to the hotel next door.  I have a lovely conversation with a touring group from Wales.  The ladies were delightful and extremely friendly.  I couldn’t resist getting their opinion on the health care system they have since there is such a controversy about it here in America.  They had nothing bad to say about it at all!  In fact, they were raving about the access they had to medical care and said how horrible they think it is that Americans sometimes die while waiting for treatments they need but cannot get because they lack insurance.  After a few minutes they admitted to some flaws in their system, but overall were very pleased to have the reassurance of medical care regardless of employment status, age, race, medical conditions, etc.  We exchanged e-mail addresses and went on our way.

It was a lovely ending to my long day, and now I must sleep!  I have a dermatology consult in the morning, so I need to get some rest!  Until next time…Ash

IVIG Day…

Geez, it’s early!  I’m usually a night owl, but not on the days I go to Nashville for my treatments.  I have an immune deficiency – Common Variable Immune Deficiency Syndrome or hypogammaglobulinemia or CVID.  They all mean the same thing, it just depends on what you prefer calling my disease.  It’s a congenital, usually genetic, non-contagious primary immune deficiency. 

 When bacteria is introduced into our bodies, we make antibodies to fight the infections.  In those of us blessed with CVID, we don’t make enough antibodies to fight the bacteria and usually end up with numerous infections.  The infections tend to be respiratory in nature most of the time, but not exclusively.  I have issues with sinus infections, bronchitis, pneumonia, and lately skin related infections like cellulitis.  It’s not fun to deal with, but it’s not the end of the world either. 

There are many different kinds of immune deficiencies such as Severe Combined Immunodeficiency, Combined Immune Deficiency, etc.  Those are the two (to my non-medical) knowledge that are the most serious and are usually treated with a bone marrow transplant.  A family who has several people with  CID was recently featured on Extreme Makeover: Home Edition.  I’ll add a link later to the show.  For some reason my computer freaks out when I try to go to the site with some major issue.  Ugh. 

Anyway, the usual treatment for CVID is antibody replacement therapy.  This relies on the kindness of strangers to donate blood and plasma.  It’s pretty scary to think we are getting antibodies from thousands of strangers, but it’s a life altering treatment.  The antibodies are removed from the blood, cleaned in an unbelievable process that I couldn’t begin to describe and given to patients who need it the most.  It is referred to as IVIG – Intravenous Immunogammaglobulin Therapy.  The brand, amount, time between therapies, and rate of infusion is very specific to each patient.  There are some types that have more IgA (the antibody usually found in mucous membranes).  This is to prevent allergic reactions from those patients who have low IgA counts as well as Anti-IgA antibodies.  Fortunately, I am not in this category. 

I receive Gamunex 15 grams every 2 weeks.  So far it has helped a great deal in pulmonary infections.  I had been dealing with a nasty case of cellulitis for many  months that seems to have resolved now as well.  I’ll get into my hospital Saga in another post. 

I have only been on IVIG since March, but was previously on it for about 12 months.  When I was on it in 2000, I had a history of post-infusion reactions (stabbing headache, nausea), so we take my infusions super slow.  We run the pump no faster than 30 ml/hr which takes 6 hrs for the entire 15 grams to infuse.  That’s a LONG time in one spot for someone who can’t sit still!  We used to break it up over 2 days (15 grams each day), but it was pretty taxing on my family who kept my son.  I would stay in a lovely hotel for 2 nights, while they took over being parents to my child.  My son didn’t adjust well to my absence, so we switched my infusions to biweekly to avoid overnight stays. The selfish part of me is a bit sad to not to have my 2 nights away in the lovely hotel, but you do what you have to when you are a single parent! 

This morning, I’m packing up for my infusion.  It’s always nice to see my nurse who is amazingly kind and understanding.  She treats her patients like family and you almost forget why you are in her little lab.  The IV starts, and I sleep for 6 hrs.  I’ll check into my room, and wake up tomorrow for a few new doctors appointments then head home.  I miss my boy when I’m gone, but it’s nice to get away…even if I get stuck with needles.  Adios!

First official blog…

Well, I have arrived!  I expected a bit more excitement upon the creation of my first blog, but such is life, I suppose.  You expect fanfare, and get a blank page.  I’m up for the challenge, though it may take a while to get used to the habit of writing daily. 

I’m a single mother to a wonderful son, who is a blessing. We live in a picture perfect little town a few blocks from my parents, and seem as normal as a Mom and son can be.  On the outside I appear to be a completely healthy person.  So, trying to explain to friends and family members that I have several chronic illnesses that interfere with living my life the way I’d like to is an ongoing struggle. 

The brightest light in my life is my son.  He understands more than he should, and has taught me more about life than I thought I child should.  During the tough days, he’s there to draw beautiful pictures and read stories together.  On the good days, he’s there to run around the house and play super heros.  I know I can’t always be the mother I want to be because of these health issues, but my son makes me feel like I’m on top of the world.  He’s amazing and I try to tell him each day what a special little creature he is.