I’ve been putting off writing this post. Sometimes it’s nice to push things out of my mind and pretend all is well, that Cystic Fibrosis doesn’t exist in our lives. But it does! And so, if I must be brought back to reality, writing is a positive way for me to reflect on and process everything happening in my family. I have enjoyed blogging and Monday (Dec. 16th) marks one year that I have been doing it. Thank you for reading and following along on our journey, especially to those of you who have done so from the beginning. Thank you also to those who consistently leave comments, it helps me to know that you are reading, and do care (that I’m not doing it in vain). I hope that over the past year you have learned something about Cystic Fibrosis and what it is like to live with this invisible, incurable disease.
Now for an update on where things stand with Jody and his need for a lung transplant. Transplant testing should be done by the end of the month. It has been so time-consuming, taking what feels like almost all of my days off work, and we are looking forward to more free time once this is officially completed. As these head-to-toe test results come back, I continue to be amazed at the way that Cystic Fibrosis effects all systems of the body. Having said that, Jody’s tests have come back pretty “normal,” at least for a person living with CF (maybe not quite normal for you or I), and we are thankful for that.
This week we had our first visit in the lung transplant clinic. Jody will now be seen routinely in both the CF and transplant clinics. One of the doctors in the transplant clinic, we’ll call him Dr. M, also happens to be a CF doctor (who we know and trust), and our appointment was with him. At this visit he looked at Jody’s overall health: His lung function is stable at 30%, he is using oxygen intermittently, and he’s holding his weight. It was Dr. M’s suggestion that we continue with the transplant process, because Jody DOES need new lungs, but that we wait to make him “active” on the list until a further time. His words were, “We don’t want to start the clock before it’s too soon.” That dreaded clock… I know all about that clock! This is the clock that counts down the days of your life after a lung transplant, statistically speaking. This is the clock that has been haunting me, day and night, since the doctors recommended starting the transplant process.
That day back in September when Jody’s doctor had the transplant talk with us I remember feeling caught by surprise. I didn’t think Jody seemed sick enough to be discussing transplant, especially when I compared him to other CFer’s I know who are waiting for lungs. But I trusted the opinions of the doctors and understood their concern that Jody was not improving from the lung infection he was fighting, and in fact, he was getting slightly worse. Since that day I have struggled to view this transplant as something positive. To me it feels more like the beginning of the end for us, as that clock ticks in my ear. Being 32 years old, with five and three-year old daughters who need their Daddy, I’m not ready for the beginning of the end.
Going back to our appointment in the transplant clinic. When Dr. M recommended waiting to make Jody active on the transplant list, we didn’t know whether to be happy or sad. The quality of life we have as a family is not what we are used to and what we once had. We can’t enjoy day trips together anymore, Jody can’t play with us out in the snow, and I have picked up more responsibilities around the house, as things have become harder for Jody, just to name a few. We had finally accepted the need for a transplant, and were trying to comfort ourselves with the hope that this could indeed give us our lives back (despite how long it lasts). Now, instead, we are going to wait for Jody to progressively get worse, worse than he already is. While other wives are waiting for their spouses to get a haircut, or a promotion, I’m waiting for mine to start losing weight and the ability to breathe. I get to look forward to watching him get worse before he can hopefully get better. Dread is becoming an all-too familiar feeling. On the other hand, I don’t want to prematurely start that clock on Jody’s life so I understand the decision to wait until it is absolutely necessary. Neither side of the pendulum is ideal. Jody will be monitored closely by the transplant team, and since testing is all but done, his status can very easily be changed from inactive to active on the transplant list when the time is right, however soon or far away that is.
Thank you again for reading my blog over this past year. Please join us in praying that God would reveal the most perfect time for Jody to be listed for his new lungs, and for us as we emotionally prepare for this and whatever our future holds.
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11
CF Wife 