Open Letter to the “Cruel To Be Kind” Good Samaritan

This is a reply to an email that I recently received regarding my campaign on Go Fund Me. I purposefully have abstained from naming the recipient. The person actually was trying to be kind and give what they thought was good advice. Also, my response wasn’t necessarily only aimed at them. Their email triggered a reaction in me, and I thought it best to send this out as an open letter instead of a specific reply to a specific recipient.

To Whom It May Concern –
First, allow me to say thank you for your aid. I really do appreciate your kindness and generosity. I am truly grateful for the gift.
Second, I would like to address the advice that you gave me. The fact that I should probably look sicker (my understanding of the gist and not your words) is duly noted. It never occurred to me that anyone would assume the red brick building my family and I are posing in front of on our wedding day was our home or because of that belief, my need should be deemed unworthy. In fact, it is the county courthouse. It also never occurred to me that having healthy children would bar sympathy for me.
I understand that I “appear” healthy. That is a challenge that I have faced my entire life – the fact I look healthy is part of the problem. People look at me and think that I am undeserving of their compassion or even their time because I appear “healthy”. Chronic diseases that are terminal don’t always show on the outside. Epilepsy, multiple sclerosis, familial pancreatitis, cystic fibrosis, fibromyalgia, mental illness, and countless others – none of these diseases show on the outside. Short of showing you the scars on my abdomen, chest, and back from my numerous surgeries, I cannot show my frailty or publicly prove my illnesses.
While I understand that you are trying to be helpful with your advice about the pictures in the campaign, it is actually extremely hurtful. Your advice, while given in good faith, has just reiterated the same lesson I’ve had countless doctors, nurses, medical staff, social workers, government agencies, teachers, acquaintances, friends, and yes even family beat me over the head with – unless you look bedraggled, unkempt, in a wheelchair, missing a limb, blind with a walking stick or in some other way visibly handicapped, you must actually be well.
I cannot begin to tell you how incredibly cruel and hurtful those beliefs are to me. The scars that I have from all of the slings, arrows, and well-intentioned advice are more numerous than the physical scars that I bear from my various life-saving surgeries and procedures.
In short, I am wounded. I weep from the pain of it. It hurts to be reminded that because of my appearance, I am deemed unworthy. Your advice was probably meant to be kind, but you are just one more person to stab at me. Please stop hurting me; I can’t take anymore.


PRA, HLA, and Cross Matching – The headache of being hella sensitized

Every month I have my pra (panel reactive antibody) tested. The score goes from 0-100 and is a percentage. The higher the number, the harder it is to match the patient to a donor.  My score never changes:  it is 99.  This means that I am sensitized; a term that you never want to hear your transplant physician say.  As it was  explained to me by my coordinator, if 100 possible donors exist, only 1 out of the 100 might match me.

“What exactly is the pra blood test actually measuring?” you might ask.  Well, I’ll try to explain it to you in the simplest of terms and to the best of my ability.

Every person born with a functioning immune system has the ability to detect foreign organisms, attack them, destroy them, and then remember how to obliterate that specific foreign organism if it tries to invade our body again.  Our bodies create antibodies that are “keyed” to the specific foreign body.  Our immune system uses identifiers on the exterior of the non-self cells called antigens.  Antibodies are your body’s army that seek out the visible antigens and irradicate non-self cells that the antigens are attached to.   The cool part is that within that army of antibodies, each soldier is programmed to kill a specific foreign organism that your body has encountered and defeated previously.  The antibody and antigen act as a key and lock.  

Another reason we have antibodies is due to foreign human tissue or non-self cells in our bodies.  These antigens are called HLA – human leukocyte antigen. This typically happens due to blood transfusions, pregnancies, and previous transplants.  Our bodies react to the specific antigens in the foreign tissue and create specific antibodies.  The more transfusions, pregnancies, and transplants a patient has experienced, the more antigens the patient has been exposed to and the more antibodies the patient’s immune system will have created.  When a transplant patient is sensitized, that means that antibodies (keys) were present in their blood serum that fit with the antigens (locks) in a selection of the most common antigens in a cross section of the population.  PRA gives a transplant patient a broad idea of how easily they will be matched to a donor organ.

Once a matched organ becomes available, it still isn’t clear sailing.  The nurse coordinator will call you and instruct you to come to the hospital.  Once there, you will have what is called a cross match blood test performed.  This test matches your specific antibodies to the donor’s specific HLA.  If the test is negative, then the transplant surgery will proceed.

My understanding is that a patient with a PRA score of 20% is considered sensitized.  As my score is 99%, I am highly sensitized.  My doctors all assure me that this doesn’t mean I will never be transplanted.  It just means that I will have a MUCH longer wait on the transplant list.  My nephrologist pointed out that the upside is that when an organ becomes available that does match me, it will be an almost perfect fit.  The donor organ will be almost exactly like me all the way down to the molecular level.  That’s my silver lining.

I know that was as clear as mud, right?  I have done my best though and hopefully you have a clearer understanding of how you are matched to a donor organ or why it is taking so long to be matched to an organ.

Grin.  Grit.  And bear it.  In the meantime, enjoy your life and hug your lovies.



Slug Life

It has been almost an entire year since my last post.  I am 1 year and 4 months into what is on average a 3 year wait.  I would love to say that the time has flown by, but sadly it has inched by like a slug in the garden leaving a slime trail behind it.  That’s a lovely word picture, right?

The months have been filled with the shenanigans of three 9 year olds, endless arguments  with said kiddos about the need for frequent and thorough showers (me:  Yes, I know that you showered yesterday, but you stink TODAY!),  two surgeries, 2 bazillion medical appointments, 3 bazillion visits/conversations with pharmacy staff about filling and refilling my long list of prescriptions,  4 bazillion interactions with the vampires (a.k.a. phlebotomists),  500 pity raves (so much more fashionable than your run-of-the-mill pity party),  followed by 500 stern self lectures on the importance of gratitude, and finally nodding politely to the armchair physicians’ seemingly endless supply of well-meaning but useless advice.

Sample Advice:

Random Person:  Have you tried drinking 5 gallons a day of alkaline water stored in a copper pot?  I hear it can fix everything from ingrown chin hairs to colicky babies!

Me:  Well gee whiz Mister, thanks for the unsolicited advice!  I’m sure if it can do all of that, your magic copper water will regrow my pancreas lickety-split.


Now, that I have spewed my venom, I feel marginally better.  I will continue to attend all of my medical appointments, take all of my medicines as prescribed, follow doctors’ orders, go no further than 30 minutes from the hospital, count my blessings, and finally, bide my time.



Vaccinations – What, When, and How

When I was first being evaluated for the pancreas transplant list, I answered a heap of questions. There were two in particular that I should have paid closer attention. I should have delved deeper and expanded the questions.

“Have you received a flu vaccine within the last 12 months?” “Have you received a pneumonia vaccine within the last 3 years?” The questions posed to me by my nurse coordinator were such innocent easy questions to answer. I answered in the affirmative, gave the dates of the vaccinations to the best of my knowledge, and gave the questions no further thought.

That is, until I saw my genius nephrologist, Dr. Siddiqui. He asked me had I received a Hep A and Hep B vaccine. I couldn’t recall whether I had. He being the fabulous and thorough doctor that he is, suggested that I have a titer blood test performed. A titer test checks for antibodies to a specific antigen in your blood. If your blood is positive for antibodies, then you have either had the illness or received a vaccine. He ordered the titer for Hep A and B and further suggested that I visit my internist for additional titer tests to be performed for routine vaccines.

Being the good patient that I am, I followed up with my pcp for the additional titer tests. In addition to Hep A and B vaccinations, I will need a Tdap booster, MMR, and meningococcal vaccine. I had already received a Prevnar 13 pneumonia vaccine, but due to the removal of my spleen, I required the additional protection of the Pneumovax 23.

Because my immune system is already suppressed due to Cystic Fibrosis and cystic fibrosis related diabetes, I am having to space the vaccinations. I received the Pneumovax 23 and Tdap last week and had a pretty intense response. My upper arms are still tender and slightly swollen.

I am glad that my nephrologist pointed me in the correct direction. It is better to be vaccinated now rather than risk getting these illnesses post transplant and most likely dying from them. I just wish that in the transplant evaluation process the importance of vaccinations had been reiterated to me. I could have been receiving these vaccinations during that process instead rushing to do them now while I am actively listed.

Ugh. Live and learn.