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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.

 

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Doh!

I just learned recently that I have been going by the wrong transplant protocols.  ARGH!!!

When I first began the process of being screened for a pancreas transplant, I was given a long laundry list of Do’s and Don’t’s.  One of the items on that list was long distance travel.  I was told at the education seminar that I really shouldn’t be more than an hour from the hospital.  This would insure that the donated organ would still be viable.  The longer an organ is outside of the body, the viability decreases. I followed that protocol.

I recently learned the requirements that were given to me weren’t accurate.  I was given advice based on a kidney transplant since the majority of pancreas transplants are performed in conjunction with a kidney transplant.  Solitary pancreas transplants are one of the least common solid organ transplantation surgeries performed and the rules and regulations are different.

Because a donor pancreas can only come from a donor that is brain dead but on life support, the time constraints are a lot less narrow.  The time between the donor being taken off of life support (the donor’s family decides this) and the organ being harvested and transported to the recipient can be as much as 24 hours.  That is a much larger window of time meaning that the recipient isn’t required to be within an hour of the hospital.

Doh!  I’m glad that I now know that I at least have the option of going a bit farther afield than I thought I had previously.

Oh well.  Live and learn.

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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.

 

 

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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.

 

 

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“Match Maker, Match Maker, Make Me A Match!”

Every month, I go to the Methodist University Transplant Clinic to have my p.r.a. (percent reactive antibody) blood test performed.  I go the first week of every month and this month my beautiful gingersnap joined me at the clinic.  Every time I have my blood drawn for this test, I distract myself from the the needle by singing the oh so appropriate song “Match Maker” from Fiddler On The Roof in my head.

The purpose of the p.r.a. blood test is to ascertain if I have been exposed to new foreign tissues and if I have developed antibodies to them.  If I have, then the donor organ must match those antibodies.  As these antibodies can change frequently, the test must be performed monthly as well as immediately prior to the transplant surgery.

Along with the p.r.a. test, many other factors must match before a donor organ can be matched and hopefully a successful transplant performed.  Our blood types must match and the donor’s height and weight must be approximately the same as mine.  After those are matched,  our tissues must match.  This can vary greatly depending upon if the transplant recipient has had miscarriages, pregnancies, blood transfusions, previous surgeries or previous transplants.  If the recipient has had any or all of these things, they are what is called “sensitized” and can be difficult to match.

Unfortunately for me, I am sensitized.  From what I understand, I am a hard one to match.  Sometimes being unique isn’t good.  Ha Ha!  When it comes to medical conditions, you just want to be a middle of the pack, run of the mill kind of case.  Because of the difficulty in matching a suitable organ to me, I could possibly be on the pancreas transplant waiting list quite a long time…or I could get the call tomorrow.  Who knows?

 

 

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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.

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Listed on the transplant list!!!

Pancreas Transplant List

I spoke with the coordinator yesterday.  The long and the short of the conversation is that I have been officially listed on the pancreas transplant waiting list.  Yay!

When I told my family yesterday, my sister asked, “So…how do you feel?  Excited, scared, happy?”  My response was, “Ready.”

That sums up perfectly how I feel.  I’m just ready for this surgery to be completed and to get on with recovery.  I’m ready to not be exhausted all of the time.  I’m ready to face life head-on.  I’m ready.

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So, I met the surgeon…

Today was a very busy day.  Richard and I got the kiddos to school by 8:15 and then scurried home out of the rain for a hurriedly consumed breakfast. We bolted from home (more like lurched) at 8:45 to make a 9:00a.m. routine follow-up with my gastroenterologist to discuss how my cystic fibrosis is doing.  Richard and I left their East Memphis office, had a quick bite to eat, and then zoomed across town to Methodist University Hospital Transplant Clinic for a 1:00p.m. appointment with an early 12:30p.m. check-in.

We met the surgical fellow, surgeon, nurse coordinator, social worker, and dietitian and of course the phlebotomist vampires had to have their 7 vials of blood.  Over the next 3 hours (yes, I said hours) we discussed at length the actual logistics and mechanics of how the pancreas transplant would be performed.  It is really quite fascinating if you look at it from an engineering standpoint.  The surgeon was extremely kind, compassionate, and went to great lengths to answer any questions that Richard and I had.  He said from his point of view, that he is an advocate for me and for the pancreas transplantation.  He assured me that he would argue on my behalf at the upcoming Transplant Board of Doctors meeting this Friday morning at 8:00a.m.

All in all, it was a reassuring clinic visit and my last one before I am officially listed for a pancreas transplant on Friday, March 2.  Watch for updates!

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Cardiologist Approved Valentine’s Day!

It just so happens that on the day that the entire world is sharing love and hearts, my heart received some much needed love and approval from the cardiologist.

Let me back up a bit. I checked into Methodist University Hospital on Monday morning to have some cardiology diagnostic tests performed for the transplant. The transplant doctors need to be sure that my heart and cardiovascular system are healthy enough for the surgery. I got to the hospital at about 8:00a.m. after having fasted since the previous evening. I spent the next 6 and 1/2 hours going through one grueling test after another. They wouldn’t have been so bad if I had been allowed to eat or at least drink water, but that would have marred the results.

My first test was to be a stress test performed in Nuclear Medicine with radioactive isotope thalium tracer injected into an i.v. in my arm but that had to be postponed until late morning. The tech could not get an i.v. into my arm because my veins are too small and extremely scarred from years of hospitalizations. He sent me to radiology so that the tech in the CT Scan lab could use doppler to find a deeper vein for an i.v. The radiology tech was able to get an i.v. placed and successfully performed a ct scan with contrast.

I then was shuttled off for a chest x-ray. I left radiology with my still functioning i.v. and headed back to nuclear medicine. I was able to have my stress test performed. I finally went to the transplant clinic lab where 13 vials of blood were sucked out of my veins like Dracula after a Lenten fast. Seriously, who knew that much blood could be taken? Don’t forget, by this time it was 2:30 in the afternoon, and I hadn’t eaten or drunk anything since about 11:00p.m. the previous night.

Armed with all of those test results from Monday, I met with the cardiologist to review the results today. We did the do-si-do and he cleared me for surgery. I have no pancreas at all, but a healthy heart. Happy Valentine’s Day to me!!!

Also, don’t forget it is National Organ Donor Day!

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Living Kindly Transplant Support Group

As my health has deteriorated at an increasingly rapid rate this last year, I have felt more and more isolated. The problem with living with limiting conditions is that all of your energy goes towards dealing with the logistics of everyday life as well as the neverending cycle of doctors’ appointments and tests, pharmacy and prescription wrangling, and constant contact with medical billing departments. At the end of the day, after the 3 bunnies (my kids) are safely tucked into bed, I simply lack the impetus to reach out to friends and family. I’m left feeling alone, down, and having a rave of a pity party.

In an effort to overcome my funk, I decided to seek out a support group. My thinking was that if I could connect with people that are going through what I’m going through, maybe that would help.

With that hope in my heart, my husband and I went to the Living Kindly Transplant Support Group.  The support group is hosted by the transplant team with emotional support offered by the transplant social workers. The group welcomes both pre and post transplant patients and their caregivers.  Each meeting has a speaker that shares his/her story to kick-start the discussion.

I have to say that I was pleasantly surprised by the experience.  I cannot tell you how glad I was that it wasn’t a boohoo, crying buckets of tears meeting.  It was quite the opposite in fact. I found that listening to other patients’ histories and experiences to be uplifting.  I didn’t feel quite so alone anymore.

This transplant isn’t an event, it is an ongoing life – a life that maybe with the help of the Living Kindly Support Group won’t be so isolating anymore. What more could I ask?  I’m thankful.

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Green Light from Transplant Panel

The transplant board of doctors said, “Yes!” I had been waiting for 2 weeks on pins and needles, anxiously awaiting the green light from my transplant nurse coordinator at Methodist University Hospital.  Let me just say, the wait was made more nerve-racking by  dealing with three 8 year old stir-crazy kids.  The inclement weather had also brought an unexpected vacation for the bambinos by way of 6 consecutive snow days.  I was to receive word of the decision on Friday, January 12, but the snow and ice Memphis received delayed the decision until the 19th.

The board meets every Friday morning and reviews all of the patients that have completed the medical evaluation portion of the transplant process.  They review the test results and vote approved, deferred, or denied.  The board decided to review my case before medical evaluation to decide if my medical conditions would bar me from having a pancreas transplant and save me the trouble of further testing if their answer was to be a denial.

I am happy to say that they agreed with my nephrologist’s conclusion that I am in urgent need of a pancreas transplant and that I am a good candidate as well.  Yay!

I am so thrilled and terrified at the same time. My stomach is churning. Yikes!

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Introduction to Pancreas Transplant 101

My husband and I attended the transplant education seminar today.  We learned some pretty interesting information about what to expect during the transplant process.  The transplant team did a great job of detailing how the potential transplant recipients would be evaluated for an organ transplant to determine if we are physically capable of having the surgery and whether the potential recipient was actually in need of a transplant.

We learned about how we would be placed on the organ waiting list and the various lists that we could activate once initially listed.  We were educated on the protocol of how we will be notified of a donor match and organ availability.

We heard from a nutritionist regarding the importance of maintaining a healthy lifestyle both prior and post transplant.  A quick aside, I cannot stress enough the absolute high priority importance of eating well and excercise. We have to take care of the bodily functions and organs that we still have. We also must take care of the precious gift of life, this incredible organ that we have been given.  We cannot treat it as a renewable resource and be careless with it.

We listened intently to the pharmacist as she went over the medications that we would take, the reasons for the medications, and the absolute Golden Rule – Do Not Stop Taking Your Medications!!!  Message received pharmacist with the voice like Minnie Mouse.

Finally, we were educated on the costs of our new lives. We gravely nodded and diligently noted just what this gift would demand from us financially.  It is a sobering and macabre experience to learn exactly what your life is worth.