Update: Week 8 of "Sheltering in Place"
Hi all. We hope you and your loved ones are staying healthy and safe from the coronavirus. We are entering the eighth week of living under the "shelter in place" order in the San Francisco Bay Area. We are under stricter quarantine now then during the first 100 days after my transplant. UCSF allows us socially distanced hikes but no grocery shopping and no outside visitors. We have relied on our local market that delivers to the immune-compromised and on supplemental deliveries from friends and family. We are heartbroken as we continue to watch the virus spread in the US, in Singapore, and around the world. At the same time, we are filled with admiration and are grateful to all the people on the front lines of the health care and service industries during this pandemic.
The road to recovery has been up and down since my last post. In February, after UCSF started me on Prednisone to treat my nausea caused by GVHD, I began feeling so much better that I started alternating some trail running for the first time in over a year with our regular hikes. The picture below was taken at the end of my first long hike to this rock at the end of a trail that I did not have the stamina to reach before my transplant.
I stumbled into another GVHD pothole in March, however, about six months after the transplant. My red blood counts dropped as low as they have been since diagnosis with the onset of a rare condition called haemolytic anaemia, where my red blood cells are destroyed faster than they are produced. UCSF significantly increased my dosage of Prednisone and started weekly injections of EPO (yes, like Lance Armstrong) and weekly six-hour infusions of a targeted antibody called Rituxan. I have resumed weekly clinic visits, alone now because UCSF's coronavirus precautions do not permit Tami or other visitors in the clinic.
Further complicating my recovery, an antibiotic, Levaquin, that I had been taking to prevent pneumonia, attacked both my achilles tendons, leaving them immobile, swollen, and vulnerable to rupture, a rare side effect. I stopped taking that drug, started physical therapy, and am hoping my mobility and blood counts improve soon.
We are staying strong and and positive with the support of family and friends and are looking forward to resuming hiking and trail running! Thank you all for your love, prayers and thoughts as we work our way to the end of this marathon, step-by-step.
Our song for today "It's the End of the World" by REM:
The road to recovery has been up and down since my last post. In February, after UCSF started me on Prednisone to treat my nausea caused by GVHD, I began feeling so much better that I started alternating some trail running for the first time in over a year with our regular hikes. The picture below was taken at the end of my first long hike to this rock at the end of a trail that I did not have the stamina to reach before my transplant.
I stumbled into another GVHD pothole in March, however, about six months after the transplant. My red blood counts dropped as low as they have been since diagnosis with the onset of a rare condition called haemolytic anaemia, where my red blood cells are destroyed faster than they are produced. UCSF significantly increased my dosage of Prednisone and started weekly injections of EPO (yes, like Lance Armstrong) and weekly six-hour infusions of a targeted antibody called Rituxan. I have resumed weekly clinic visits, alone now because UCSF's coronavirus precautions do not permit Tami or other visitors in the clinic.
Further complicating my recovery, an antibiotic, Levaquin, that I had been taking to prevent pneumonia, attacked both my achilles tendons, leaving them immobile, swollen, and vulnerable to rupture, a rare side effect. I stopped taking that drug, started physical therapy, and am hoping my mobility and blood counts improve soon.
We are staying strong and and positive with the support of family and friends and are looking forward to resuming hiking and trail running! Thank you all for your love, prayers and thoughts as we work our way to the end of this marathon, step-by-step.
Our song for today "It's the End of the World" by REM:
All of us in the Morrissy family were so disappointed to hear the news of this set back. Two steps forward, one step back. Steve, your positivity will stand you in good stead, that, and the love and support from family and friends! Hopefully your achilles recovers quickly so that you can make the most of your EPO injections on the trail runs!! Take care and stay safe. We love you, Tami and the boys so very much!!
ReplyDeleteThe Hottliebs are also disappointed with your news, Steve, but encouraged by the fact that you seem to have medical care that is keeping on top of all of these twists and turns in your recovery. How ironic that COVID-19 has resulted in even greater restrictions than you were experiencing pre-virus. Either way, we really appreciate your updates and are hoping to learn that your blood counts and mobility are already improving. Much love from Linda, Greg, Tillie and Joey.
ReplyDelete