Saturday, January 2, 2016

Roller Coaster Ride

Today marks day +28 since Curt's stem cell transplant. This number is a huge deal, as he is close to a month marker. The days seem to fly by as nursing care really is 24 hours a day. Because of this hard work, it is often hard to rejoice in the growing positive days. Looking back on Curt's days in the hospital, he has made progress.

We were able to bring Curt home on Christmas eve, and it has definitely been a blessing to be out of the hospital and in the comfort of our own home.

With this whole process, many "bad days" outweigh the good, but again we are thankful he is home. Curt contracted the CMV virus which is relatively common for transplant patients. This is a virus that many people carry dormant in their bodies and are never affected by it. Because Curt takes immunosuppressants multiple times a day, this puts him at risk for anything and everything.

CMV has definitely set us back on our hard work we have put in at home. Before the virus, he had one day where he at least took a bite of something at each meal. Since the virus, we are back to none or maybe one bite of food on a good day. The virus makes him extremely fatigued, but unable to sleep. It makes him nauseated, achy, new mouth sores and presents as a rash on all parts of his skin, bottom of the feet included. We are hoping that the new antivirals prescribed will start to take hold of the virus and make it dormant once again.

Now for some positive things...our last appointment at the clinic proved fruitful for Curt. The doctor was able to decrease some of his medications (average 15 pills a day) which we hope will cut down some of the side effects. Dry mouth is one of Curt's worst issues as his mouth cells attempt to heal. The doctor also told us that we no longer had to go to clinic 3 times a week, but now once a week. This was great news as our morning routine prior to clinic often takes almost two hours prior to the drive to Dallas.

Curt still remains on the IV nutrition as he is unable to eat. We are hoping to speak with the doctor on Monday about the next steps in nutrition.

Lately we have been reading blog articles to dad which describe different peoples journey after stem cell transplant, and this seems to help. A lot of people say they don't even begin to "feel human" again until days +50 and on. Many people also describe this process as one that could take up to two years for full recovery of symptoms...WOW. I don't think any of us were prepared to hear that. It was definitely a shock.

For now, we savor the positive moments, and push through the sleepless nights praying for a better tomorrow. Thank you again for your support, this process has shown my family that there truly are good people in this world.

1 comment:

  1. Continued prayers as you all face recovery and this post-transplant process! You all are so unbelievably strong, especially in sharing this journey and the ups and downs that come along with it.