Monday, February 9, 2015

Heart Failure to Transplant: What to Expect ...

This post went up on my CaringBridge journal on Feb 9, 2015:

I can't help but compare the journey to transplant to the journey of pregnancy and birth. 
Both involve a process of (somewhat) uncertain length, that will be a unique experience for each person who goes through it, but yet for all who go through it there are many experiences that they will share in common. 
The exact moment when pregnancy shifts to labor to birth is unpredictable and (mostly) out of the mother's control.  The exact moment when a heart is found, the process of prepping for surgery, and exact time and date of transplant is likewise unpredictable and out of my control. 
The birth of a baby can be prepared for but becoming a parent changes the mother's and father's and siblings' lives in unexpected, dramatic and irreversible ways, and transplant similarly signals the start of a new way of life. 
Pregnancy and birth change the mothers' body; transplant and immunosuppression does as well.  
Childbirth classes and books on pregnancy, birth and parenting abound, and when I was pregnant the first time I found them interesting and helpful.  Similarly, I've read through all the manuals Kaiser and Cedars-Sinai have provided me covering the facts of life before and after transplant. 
However, in the past few days I've been seeking out and enjoying reading others' personal accounts of their heart transplant journey. 
As I read details of their days leading up to transplant, I identify with many details: the fatigue, shortness of breath, uncertainty, difficulty taking it all in and feeling like it's all going so fast. 
Yet other aspects of other patients' stories make me realize anew just how blessed and protected by my Creator, Redeemer and Sustainer I have been.  Many patients get much sicker than I am now before a heart is finally found, many do not have much of a support network, many have other physical and mental health issues that complicate their recovery, many have problems with their insurance coverage, many experience delays and denials of their claims for disability. 
As I read the stories, I find the moments just before surgery and in the first few days of recovery most compelling because that is what I am most uncertain about.  It seems like there are a wide range of experiences, some have complications and pain, others sail right through.  I find it comforting in a way to know in advance some of the possible outcomes, so that if one of them happens to me I will know it's within the range of "normal"! 
In one of the stories, a woman talked of a moment a year or so after her transplant when she had a mental shift from "transplant patient" to "someone who happened to have had a transplant" and felt a new sense of freedom to enjoy life.  Thinking of what I have read of what to expect in terms of post-transplant care, that shift probably corresponds in part to the less frequent checkups and lighter medication load that happens around that time as things stabilize.  I can expect that I will feel like a patient for a while... but looking forward to the day when it's mostly behind me and the medication regimen and caring for myself as a immunosuppressed person will be assimilated as just my normal state of being, background details as I live out my vocations to love God and love others through my role as wife, mother, community volunteer and whatever else I may find to do in the future.

No comments:

Post a Comment

I welcome your comments and will publish and reply to them as soon as I am able in the midst of a busy mom schedule! Abusive, trolling or spam comments will not be published.