In the hospital again

Hello fellow CML’ers and Caregivers.

I’m going to try to give everyone a quick update without boring you with the details. Although it will sound like a lot I assure you I am going to keep it short.

I was admitted to the hospital, same hospital as before, the Presbyterian/St. Luke Hospital in Denver, on Feb 25th, and it has been a roller coaster ride for my wife and I since. This was for that persistent cough, breathlessness and increased fatigue I couldn’t get rid of for at least four weeks. We went in to my oncologist several days in advance of a a regular appointment and they admitted me from there. Once admitted they found there was also another issue developing which has been diagnosed as HUS-TTP and is a known complication from taking two immune suppressive drugs together (Tac & Rap for the bone marrow people). I had consistently high blood pressure which they found difficult to control with meds. They believed it was a viral infection causing the cough but blood cultures take time to grow so they aggressively treated my lungs for infection in general. I have been on high doses of steroids and loads of antibiotics. Meanwhile, I also picked up a serious staph infection called MRSA (commonly found in hospitals) also in the lungs. A week after getting here my lower left lobe in the lung also collapsed. They thought it could have been a pulmonary embolism so all hands on deck to treat that. So I wasn’t looking too good the first few weeks here and they were close to intubation on at least one occasion. The whole team really worked very hard and did a great job getting me back and my breathing is much better again. In fact we believe I am at least back to baseline with my oxygen requirements at rest being very low.

As a result of all the medications I have been subjected to for treatment of the Bronchiolitis Obliterans Syndrome and infections, I now have also been fighting with the following issues:

• High blood pressure (mine is normally on the low side). So now I’ll need to monitor at home and take the meds as needed.
• High blood sugar counts, which means steroid induced diabetes. So insulin shots four times a day. My wife and I have been given training for doing this at home.
• Kidney damage. Monitored every day.
• Liver damage. Same as kidneys but not as bad.
• Loss of muscle and bone mass. This is actually a huge deal. I cannot walk without a walker and assistance and can’t do stairs at all on my own. But I am slowly getting stronger each day as physical therapy helps me with walking around the hallways and some resistance work.
• Nerve damage to my legs, feet and hands that they believe is drug induced.

I’ve had two CT scans of the lungs, an MRI of the brain, a bronchoscopy, a pulmonary function test, blood cultures and numerous blood tests, chest x-rays, and an ultra-sound of the liver and surrounding organs.
Every day I am seen by the attending physician from oncology and his nurse practitioner, the pulmonary doctor, a kidney doctor, a doctor from infectious disease, respiratory specialists, physical therapy, occupational therapy, and a neurologist. Well I am four weeks in the hospital on Thursday and the hope is to be released this week. They just want to make sure I am strong enough to get around safely at home and are hoping to stabilize my high blood pressure, as well as wanting my renal and liver functions to be good. Oh, this just in: I just finished with the PT guy and was able to walk around the hallways without my walker. Yeah! So now my release will be based on my blood pressure and getting me off the IV medications. They are also still watching my kidneys and liver but I’ll be continuing with blood work while at home.

Finally, I want to thank my wife who has been riding this wave with me the entire time. Every day, she drives from Colorado Springs to Denver to spend time with me and to keep in the loop with my medications and care and helps keep my spirits up. I love you honey!

Please comment if you have any questions.

Kind regards,

David