Stereotypes and prejudices

There aren’t many things that make my blood boil, but any kind of prejudice or stereotype will.  Especially when it’s indirectly targeted at me.

I have been absent from my posting for a little bit due to the crazy busy (but wonderful) holidays and wrapping up my baccalaureate degree in Public Health with a focus of Education and Promotion.  But I need to say something important right now.

I’m in a writing intensive course where we are to write a lengthy paper on a topic relating a health disparity.  Naturally, I chose “Organ transplantation among socially vulnerable adults.” A peer commented on my topic, and he mentioned alcoholism and drug abuse-inflicted liver transplants and ended his piece by saying, “I personally don’t agree there is a large enough disparity, only because many of these people’s conditions are self inflicted.”

First of all, self-inflicted or not, you still treat a patient.  If you were a doctor and someone came into your emergency room after trying to commit suicide, would you save them?  Of course you would.  I understand the limited number of livers available makes this a little bit more of an ethical question, and I will digress for a moment to say UNOS (United Network for Organ Sharing) and transplant centers have extremely stringent rules for listing an alcoholic for a transplant.  If you are an alcoholic and need a liver, you wouldn’t even make the waiting list until they were sure you were sober with a low chance of returning to old ways.

It is very hurtful when someone holds a prejudice towards you or one of your kind – your race, your health status, your financial situation, whatever it may be.  Our instructor in this course has specifically asked to know about anything being said by our peers that is “uncomfortable” to us, so I wrote her an email to say I was more than uncomfortable.  I am just posting this so that all of you know that people dying of liver failure waiting on organs are not a bunch of alcoholics.  The majority (90%) of us have, or had, diseases that we in no way, shape, or form, have/had given to ourselves.

I’m extremely uncomfortable with [my peer’s] reply to my paper topic idea, health disparities affecting access to liver transplants. He ended his post by saying, “I personally don’t agree there is a large enough disparity, only because many of these people’s conditions are self inflicted,” referring to drug and alcohol abuse.

This is a huge myth. I became sick with an autoimmune liver disease at age 5. I was not an alcoholic; my body simply attacked itself. I’ve done research on indications of liver transplantation, and alcoholism/drug abuse account for an extremely relatively small proportion of all transplants. When I was a teenager (before my transplant in 2010 at age 23), I had an emergency room nurse flippantly say, “Why do you have liver disease? You must have been an alcoholic for years!” I was heartbroken as it was the first time if had experienced that prejudice. Not one ounce of alcohol had touched my diseased liver. Ever.

Maybe I’m overreacting, but I am hurt by my peer, a student in the advanced stages of a health degree, no less, being condescending toward patients with liver disease.

I tried to politely respond and tell him the truth so that he could learn from this experience. I hope we all learn something from this. Preconceived stereotypes are extremely hurtful, and we must be extremely cautious never to have them with our patients/clients.

Maybe you don’t believe this myth about liver transplant patients but you think all people with diabetes gave it to themselves by eating junk food, all the people in that neighborhood are drug addicts, or even that another race is just a little less “worthy” than yours.  Well, I would like to firmly propose that no one should say anything negative about anyone unless they have done extensive research and know it to be 100% true, 100% of the time.  Which pretty much would eliminate any stereotypes because none of them meet those criteria.  And if you can somehow outsmart me and find something that meet those criteria, and want to voice your prejudice, don’t.

Epstein-barr virus … it’s back!

Remember this post?  In December, 2010 – around 3 months post-transplant, my liver enzymes started increasing.  Everyone panicked, my team ordered a liver biopsy, and then it just turned out that my nurse had forgotten to check the box for my monthly EBV (aka, the virus that causes mono) labs and lo and behold, that’s all it was.  I had somehow caught mono in my severely immunosuppressed state.  I did not kiss anyone or share food/drink with anyone, although 2 people in my house were “carriers” of the disease. After a few months of antivirals and lots of hype, it was under control.

I believe I picked it up again last spring and I can’t exactly remember what/why/how long, but I believe it went away quickly.  That was when my white blood cells (immunity) were literally in the decimal points. (Normal is 4.5-10)  I was so busy being weak and getting the splenectomy that I really just don’t remember the mono that clearly.  You have to choose your battles, friends.

So skip to last fall… 1 year post transplant, the team stops drawing monthly mono labs.  It’s just protocol.

Proceed to May-ish of this year. I was so fatigued – constantly – and often felt sick but couldn’t pinpoint what was wrong.  I passed it off as viral and went on with my life.  But the fatigue has been relentless.  I finally decided this feels a lot like mono did back in 12/2010.  After a lab test, sure enough, it is indeed positive for EBV.

I’m waiting for Molly (my transplant nurse coordinator) to confer with my surgeon, Dr. Eghestad, about the course of treatment.  I, of course, am fearing worst-case scenario (as usual) which would mean a liver biopsy to check for post-transplant lymphoproliferative disease (PTLD) which is when the mono/EBV leaves the blood and enters the liver.  I’m worried they’ll play with my anti rejection meds to give my body more “fight” for this and possibly run me on a few months of Valcyte (strong antiviral drug) again.  I’m trying not to rush to any conclusions before hearing how bad it really is this time. I do not have time to deal with a biopsy (nor the pain or the anxiety), and I don’t want to go to the Clinic to visit my transplant surgeon and the Infectious Disease team.  I’m already going up there in August, and I have been enjoying the “break.”

So don’t worry – mono is transmitted via saliva, so I’m not contagious unless I am kissing you or sharing a drink with you.  However, if you are immunocompromised like myself, no one knows how it gets around so easily.  It’s a mystery to me.  At least it’s not the pneumonia I came down with a year ago at this time.

Please pray we get this under control and that my energy levels start to increase.  It’s summer time!  I’m in 3 courses for school, an art class, and I have my normal super-busy agenda to keep up with.  So many friends, events, family, everything that makes this life so sweet!

Also, post-traumatic stress treatment starts tomorrow.  That should be interesting, to say the least.  I want to give up these wounds once and for all, and I finally found a place where I think I can get some help.  More on that later.

Please don’t forget to be rallying for my August 11 Lifebanc Team Race for Amanda event – we are off to a good start, but we can do much better.  Around one more month to register and invite a friend!  I will be drawing the Early Bird Raffle ASAP – didn’t feel up to it today.  Hopefully will post tomorrow.

Love to you all,
Amanda

1.5 weeks till surgery; WBCs

Hi, just an update for those of you who have been praying for my labs to increase so the surgery could occur.  Well, my WBC this week were 1.48 which is VERY low, but higher than my range before.  More Neupogen injections were an option but my doctor said if I felt okay without them, his advice would be to skip them.  So I did.  A few of my doctors said with labs and clotting factors like mine I’ll be getting units of blood anyways on the date of surgery.  Please remember to Donate Life (transplant) and Donate Blood!  More people than you even know have to get blood over their lifetimes – how many times is it a friend of yours?

I am still feeling very tired and sometimes weak.  I hope it’s just the uneven blood cells, so I desperately hope this surgery will help me in that regard.  That’s our one desire here. 

I have 1.5 weeks until my surgery, and I’m trying [despite my weaknesses] to live it up!  Because I’m so thankful for a year of my new life, and I know I’ll be out of commission in 1.5 weeks, I admit I’ve packed my schedule a little too full.  But it’s summer and I’m off from school, and these days have been so much fun!  I’m hoping for a fast recovery so I can continue to enjoy these things before I restart school in January.  🙂

I love all of you who have been keeping up with my journey.  My prayers are for God to touch your lives in a special way today.

Amanda

8 Months – News & Prayer Requests

Hi everyone,

Yesterday marks my 8-month transplant anniversary. In important news, this year’s Lifebanc Gift of Life Walk & Run is going to be Sunday, August 13 at 7:30am I don’t have my leaders’ guide yet, but I will be leading a team. I hope to have double the participants as last year so write it on your calendar, invite a friend, and stay tuned for an information statement here – probably in a month or so. Here is last year’s campaign page – Gift of Life Walk & Run! as well as photos/video about last year’s event – if you’d like an idea of what this is all about. This year I will have 365 more things to be grateful about, and a donor to honor, so it’s my dream and goal to get double participation.

So news about me. If you’re here, you probably are interested. 🙂 I have a few people checking in via email and social networks, and this is your update. To be candidly honest, I am not feeling that well right now and am extremely overextended with school and obligations, so please let this be your update. My inbox is so behind right now, you don’t even want to know! I love you all, I just am not physically up to all I want to do at the moment.

There is so much going on right now, I don’t even know where to start!

Since March and throughout April, I have had 4 trips to the ER, have seen 2 new specialists, 2 MRIs, 1 CT scan, and numerous other tests.

I desperately want to tell you how well I’ve been feeling and how amazing this new life is, but I can’t do that this time.

See, a lot of you – myself included – may have thought post-transplant life would have to be amazing – easy, even.  Low key.  Healthy.  Fewer meds.  More energy.  Healthy.

One day, I’ll get there.  But not today.

Sure, I have to think of where I was before my surgery.  I had so many other diagnoses along with liver disease, and a tumor to go with it, so thinking one surgery would cure my life was foolish.  Yes, I have a healthy liver now.  That’s amazing.  But I still have back pain, fatigue, and fibromyalgia, with the addition of medication side effects, a low immune system, chronic neutropenia (low white blood cell count, in my case – 1.5 – critical), and newly, degenerative disc disorder and arthritis in my back.  I have to go to the hospital with practically every new problem that arises, even if I’m just sick with a virus or dehydrated.  I get a new specialist over ever issue, because my transplant team acts like my body is a gold box housing a diamond, a donated liver, a rare treasure to guard like it’s the most important thing in the world.  I agree, this gift is priceless, but I think sometimes they go to the extreme.

Either way, this is my life now, and 8 months later, you’d think I’d be able to cope with it.  Sometimes I wish I had my surgery when I was a lot younger so I wouldn’t know what kind of life to compare it to.  Maybe this would be normal to me.  Or maybe my idea of normal life is skewed from being a victim of childhood chronic illness.  What if this is the best it ever was, or ever will get?

I’m trying to be okay with that.

The other week, I had many doctors appointments to figure out some more issues going on with my crazy body, and since then, we are still trying to get on the path to answers.

First, throw in a virus that had me to my PCP twice, ER twice, and required 2 types of antibiotics.  Not fun.

Then, the “big thing” right now – we are consulting with a hematologist/oncologist about my chronic neutropenia and thrombocytopenia (low white blood cell levels – “critical,” even, and low platelet levels).  Last week, I had several labs done for oncology and a CT scan for them.  The doctors have also ordered a bone marrow biopsy, as well, which is my absolute last choice for anything.  More on that another time.

Last week, a home care nurse stopped by to teach me how to administer pentamidine treatments to myself at home.  Because my white cell count is so low, I’m at risk for PCP pneumonia, one of the most dangerous kinds of pneumonia, so I have to get these monthly treatments now.  They taste really bad, hurt my throat, and make my voice hoarse, but at this present time, I don’t have a choice. It’s also scary why I have to get them.

All of that said, my good news is that I’m going to Disney World tomorrow – hopefully – followed by 2 weeks in Ireland with my nursing school.  I’m hoping I’ll be up for both trips.  If I can just have improved health during this month – nothing more – that’s really all I want.  I’ve been especially dreaming of Ireland for a couple years now, so please pray for my one wish to come true.  I filled out my application, turned in reference letters, interviewed, got accepted, paid, bought rainboots, started packing… I’m so close to being there!  🙂 It’s such bad news that my WBCs are still so low. I’m waiting to hear from my infections disease/travel medicine specialist to confirm whether or not I can still go on these trips – I don’t think anyone was expecting my labs to get, and stay, this low. Not only do I sleep all day and am so weak, but I don’t have much of an immune system at all right now.

Despite it all, I’m forcing myself to still get out there and enjoy life so it doesn’t pass me by. I’m making desperate attempts to keep up with all the people I love, the friends I hold so close to my heart. And it always is such a wonderful thing to see how we, at our lowest, can care the most for others who are hurting. It’s an amazing part of this human suffering, and the times during which I am low, it’s so evident – and such a blessing – to me.

But the enjoyment of everything, the gratitude, are the only things keeping me sane right now. I was thrilled to be able to attend my precious cousin’s wedding a month ago as well as my little buddy’s karate testing – yellow belt!  I go out with my friends a lot and have still been able to go to church and Bible study – priorities! School hasn’t been going very well, but I can’t say I didn’t try. Fun in the works is my baby sister’s graduation party and my birthday in a few months.  I think because I’m a summer baby I have an extra passion for summer, and I’m making mental lists of all the things I want to do this year!  Last summer doesn’t count for too much but waiting on my liver.  Even though a year ago this month was the time my world was forever changed, I’m trying to focus on the good things that are all around, even if it’s just snuggling with my little Haylie, the anticipation of Ireland, or the feeling of seeing that perfect pair of shoes on the shelf. I love moments like those.  🙂  So everyone please spend the next week savoring the big and little moments, being passionately grateful, in and for your life.

So friends, this is your big update on all things in my health life. Thank you, thank you, thank you for all of your support.  Please pray I may have peace with everything no matter what happens as well as the purest form of gratitude for my new life highs and lows.

Love, love, love
Amanda

One night when I was really upset about all the confusion and pain going on around me, my mom wrote this Scripture down for me:

Be merciful unto me, O God, be merciful unto me: for my soul trusteth (taketh refuge) in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

Psalm 57.1

3 Month Update & A Prayer Request

Hi everyone,

Just a little update and a prayer request below.

I’m doing so great.  It’s been 3 months since my surgery, and I can’t help but reflect on where I’ve been.  Thinking back on my life with liver disease, waiting for the transplant, the surgery, the pain and horror, the blessings and overcoming… I’m still taking it all in.  Every time I see the huge scar on my abdomen, I want to complain and wish it gone, but then I remember it’s a symbol of where I’ve been and the story I have to share with the world.  This story, this journey, is not just about the 12” of scar I have going in 3 directions – it’s entwined into every part of my being.

Yes, of course there have been setbacks, but I’m used to them.  Not too much phases me anymore.  I’m grateful for this new peace I have.  Whatever comes, comes.  I think I finally understand the resilience you see in people who face huge trials.  Once you’ve been through so much, you are accustomed to fighting, struggling, and don’t fear the future.  You’re so thankful for the calm times but aren’t worried about the storms. After all, if you’ve already been through the worst, how bad could the future be?

This week, one of the surgeons officially cleared me to resume nursing school in January, so barring any complications with the College of Nursing, I’m good to go.  I’m so excited to dive back into what I love so much, with more compassion than ever.  I have some fears like “What if I forgot it all?” “What if I haven’t recovered enough?” but my heart knows it’ll be just fine.

Wednesday is a big day for me.  It’s time for my 3-month-scan to make sure the tumor hasn’t returned.  If you remember, I was diagnosed with Primary sclerosing cholangitis (liver disease) at age 5, and I was transplanted because it turned into a tumor in May of this year.  Chemoembolization eradicated the tumor.  While the pathology reports on my old liver and lymph nodes showed there were no signs of cancer, as a precaution, I have to have scans and special labs done every 3 months for the next 5 years just to make sure it hasn’t come back.  From what I understand, it’s just a contrast MRI (which I’m used to) as well as testing for “tumor markers” in my blood.  I really don’t know that much about it, but of course, I’m eager to learn.  I’m honestly a little scared about it simply because I don’t want to go through all of this again.  Please join me in praying the tumor is gone for good and that I continue to recover quickly.

I love you all, and please remember to take time to be grateful for life during this busy, stressful season.

Amanda