MY STORY

When Sandi Par­sons re­ceived an or­gan trans­plant, the do­nated lungs saved her life. Find­ing the words to say thank you to the donor’s fam­ily was hard enough – but mak­ing that longed-for con­nec­tion proved more dif­fi­cult still.

MiNDFOOD - - CONTENTS - WORDS BY SANDI PAR­SONS

Af­ter an or­gan trans­plant saved her life, how could Sandi Par­sons ever prop­erly thank her donor’s fam­ily for her gift?

Amid the pur­ga­tory that is the trans­plant wait-list, do­nated lungs were an ab­stract con­cept to me. I poured all my en­ergy into en­sur­ing that each breath was still fol­lowed by an­other. I was de­ter­mined to cling to life long enough for a fam­ily to say ‘yes’ to or­gan do­na­tion. My fu­ture was solely de­pen­dent on the in­cred­i­ble gen­eros­ity of a stranger, and a de­ci­sion they would make in the midst of great per­sonal loss and grief.

Breathing is an all-con­sum­ing task with lungs in res­pi­ra­tory fail­ure. De­spite oxy­gen whirling up my nose like a hur­ri­cane, ev­ery sin­gle breath re­mained a strug­gle. The oxy­gen I did man­age to suck into my lungs never seemed quite enough, leav­ing me in a per­pet­ual state of breath­less­ness.

Still, I clung to life by my very fin­ger­nails – too stub­born to let go, never will­ing to con­cede de­feat. As some­one who lived with cys­tic fi­bro­sis (a ge­netic con­di­tion that dam­ages the lungs and diges­tive sys­tem), I knew it was a fierce ad­ver­sary. Even though my body was rapidly los­ing the war, I never lost be­lief that do­nated lungs would ar­rive in time and al­low me to cheat my way past fate.

Post-trans­plant, my do­nated lungs are no longer just an ab­stract con­cept. These amaz­ing lungs breathe nat­u­rally and with­out ef­fort – and I am acutely aware that they were once a part of an­other. They came from some­body who lived and was loved, who laughed and cried. Some­one who mat­tered.

These won­der­ful lungs con­nect me to some­one I will never have the chance to know. They de­serve much more than just the to­ken la­bel of ‘my donor’. A trans­plant is a gift be­tween strangers, yet it’s also deeply per­sonal. These lungs were a gift from a per­son who saved my life – a per­son who is the hero of my story. Yet, ac­cord­ing to Aus­tralian law, I’m not en­ti­tled to know their name. Health pro­fes­sion­als are re­quired to keep in­for­ma­tion

re­gard­ing or­gan donors and trans­plant re­cip­i­ents con­fi­den­tial. The do­nated lungs keep­ing me alive came from my home state, Western Aus­tralia. This sin­gle non-iden­ti­fy­ing piece of in­for­ma­tion was the only de­tail my health­care team was al­lowed to share with me.

Re­ha­bil­i­ta­tion con­sumed the first few months af­ter my trans­plant, along with an ad­just­ment to the toxic cock­tail of med­i­ca­tions I now re­quire to keep my body from re­ject­ing these pre­cious lungs. As the six-month mark loomed, I needed to write a letter of thanks. Writ­ing has al­ways been a real source of pride for me, but the words for this letter did not come eas­ily. It was cer­tainly not my best work.

Writ­ing into the great un­known, I knew noth­ing about the fam­ily that would re­ceive this letter. From the mo­ment I woke up post-surgery, I had a deep con­vic­tion that these lungs were gifted to me from an older woman who was also a mother. But I had ab­so­lutely no ev­i­dence or knowl­edge to back up my gut feel­ing, and my short stature meant it was pos­si­ble my donor could have been a younger per­son, so I struc­tured my letter to be generic.

Be­sides the over­whelm­ing need to tell this fam­ily that they had made a dif­fer­ence, that their de­ci­sion saved my life, I had lit­tle else to say. At six months I hadn’t yet returned to work or per­formed any mar­vel­lous ath­letic feats. The only words I had to paint a pic­ture of the dif­fer­ence they had made were clin­i­cal – a list of symptoms and sta­tis­tics that had been my norm. And of course, there was the enor­mous dif­fi­culty of how to say ‘thank you’.

As a cour­tesy and to mark our good man­ners, we’ll some­times say ‘thank you’ in pass­ing – of­ten with­out feel­ing – for things that can be triv­ial. These same in­signif­i­cant words were all I had to ex­press the enor­mous well of grat­i­tude I felt – not only to this one un­named per­son who was now a part of me, but also to their fam­ily. They made a huge de­ci­sion that ul­ti­mately saved my life. I was very aware that the cir­cum­stance caus­ing me to cel­e­brate was also the source of their grief.

I signed off my first letter with, “Thank you for the op­por­tu­nity to have a fu­ture. Sandi”. I knew there was a chance that my name would be sani­tised, but I still felt that giv­ing my name was like leav­ing a door open to the possibilit­y of say­ing thank you in per­son. If my name made it through DonateLife’s scru­tiny, a Google search of Sandi and cys­tic fi­bro­sis would lead to my au­thor web­site. Just in case my name had been sani­tised, I used that same phrase in nu­mer­ous places on the in­ter­net, in­clud­ing so­cial me­dia – leav­ing a trail of bread­crumbs that would lead back to me.

A year af­ter I sent my letter off via my trans­plant co­or­di­na­tor, I found the Donor and Re­cip­i­ents Group Aus­tralia on Face­book. Join­ing that group com­pletely changed my un­der­stand­ing of the trans­plant process. Just as ev­ery trans­plant re­cip­i­ent has a unique story to tell, so too do donor fam­i­lies. But there are com­mon threads that run through­out their sto­ries. Many still wait to hear a simple ‘thank you’ from their re­cip­i­ents. Count­less oth­ers take great com­fort from the con­tact they re­ceive via of­fi­cial chan­nels.

The sto­ries I read from donor fam­ily mem­bers prompted me to once again write to the fam­ily whose de­ci­sion to say ‘yes’ to or­gan do­na­tion had given me a fu­ture. This time I sent a card with a simple mes­sage thank­ing them, and a note say­ing their fam­ily was never far from my thoughts. Once again, I signed it with my first name.

But my lit­tle card had quite a long way to travel be­fore it would reach my donor’s fam­ily. From my clin­i­cal nurse con­sul­tant, it would be passed to DonateLife. Then, af­ter they’d screened my cor­re­spon­dence, DonateLife would make con­tact with the fam­ily and ask if they wished to re­ceive it. If they said yes, the postie would be re­spon­si­ble for en­sur­ing it ar­rived at my donor’s fam­ily’s home – a big jour­ney for a card, and full of op­por­tu­ni­ties for things to go awry.

The Donor and Re­cip­i­ents Group Aus­tralia high­lights many prob­lems with these cor­re­spon­dence guide­lines. Rep­re­sen­ta­tives from both sides of the trans­plant jour­ney ex­press great dis­sat­is­fac­tion with the non-iden­ti­fy­ing in­for­ma­tion process. In con­trast, this Face­book group al­lows donor fam­ily mem­bers to share not only the sto­ries of their loved ones, but their names as well. The im­por­tance of a name should never be un­der­es­ti­mated.

For me, the term ‘my donor’ has al­ways left a bu­reau­cratic taste in my mouth. It’s an anony­mous term that im­plies that or­gan do­na­tion is a simple, ev­ery­day trans­ac­tion. The posts I read re­newed my de­sire to have a name for the per­son who had saved my life.

I tack­led the task with vigour. WA has an or­gan do­na­tion honour board which lists or­gan donors’ names, and I could elim­i­nate some names us­ing the on­line death no­tices. I ruled out other names when donor fam­i­lies posted their loved one’s dates in the Donor and Re­cip­i­ents Group Aus­tralia and they did not match my time­line.

Even­tu­ally, us­ing a process of elim­i­na­tion, I nar­rowed down the pos­si­bil­i­ties to just one per­son. But with­out con­fir­ma­tion from her fam­ily, I could never be sure that my de­tec­tive skills had been cor­rect. None­the­less, this per­son res­onated strongly, and I felt sure that I had found my donor.

Be­ing able to give the woman who saved my life a name was ther­a­peu­tic for me. I could now ac­knowl­edge the woman who, with the great gift of her lungs, had given me a sec­ond chance at life – en­abling me to reach my full po­ten­tial. As if these lungs, our lungs, rep­re­sent the fi­nal piece of the jig­saw that is me, ac­knowl­edg­ing her by name helped me put that piece into place.

“I was aware that the cir­cum­stance caus­ing me to cel­e­brate was also the source of their grief.”

De­spite my cer­tainty that I had un­cov­ered the iden­tity of my donor, I did not be­lieve that I had any right to waltz up to her fam­ily and in­tro­duce my­self. I had no idea if con­tact would be some­thing they would wel­come. My con­tact with other donor fam­i­lies made me aware that some fam­i­lies are never able to write or feel any de­sire to meet re­cip­i­ents, and I re­spect that the de­ci­sion is their right to make.

While I was con­tent with the knowl­edge of who my donor was, I felt that the com­plex jour­ney taken by my cor­re­spon­dence left a lot to be de­sired. My clin­i­cal nurse con­sul­tant told me that – in her ex­pe­ri­ence – while most re­cip­i­ents write, it was rare for a donor fam­ily to write back. In con­trast, the Donor and Re­cip­i­ents Group Aus­tralia was full of posts from donor fam­ily mem­bers wish­ing to hear from their re­cip­i­ents, many re­port­ing that even though they had writ­ten, they had re­ceived no cor­re­spon­dence in re­turn.

The idea that my hum­ble ‘thank you’ may not have ac­tu­ally reached its des­ti­na­tion wor­ried me, so I con­tin­ued send­ing cor­re­spon­dence via the of­fi­cial chan­nels. At five years I sent an­other letter, fol­lowed by more cards. Based on the law of av­er­ages, I fig­ured that at least one of my let­ters or cards must have reached their in­tended re­cip­i­ent.

Two months af­ter I had sent my most re­cent card, and over seven years af­ter my trans­plant, a simple mes­sage ar­rived via Face­book Mes­sen­ger. It was fol­lowed by a phone call where I had the chance to say ‘thank you’, and also re­ceived con­fir­ma­tion of the name of the woman who is the true hero of my story. Now I know not only her name, but a lit­tle bit about her story as well.

I’ve al­ways felt blessed to be the guardian of these in­cred­i­ble lungs – and since that con­ver­sa­tion, I feel even more so. I’ll never know the gen­er­ous and kind woman, but I know of her, and that is enough.

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