When I last shared what had been going on in our lives, Mike was considering a treatment that would change the life expectancy of a pnh patient from 5 to 10 years to a normal lifespan. Sounds like a no brainier right? But you can never come off of it, if you miss the bi-weekly treatment by even a couple of days, you can die. Another risk for those receiving the treatment is meningitis. To help prevent that they are given meningococcal vaccines. You receive the vaccines 2 weeks before you begin treatment.
Mike and I were getting excited, we felt we could deal with the lifestyle change and stay on top of the treatment every 2 weeks. He was told he would start to feel better within DAYS of beginning the treatment. So he went for it. He set up the first appointment to be on Dec. 23rd and made jokes about how this was his Christmas present to himself.
We went across the hall of Sitemans Cancer Care unit and waited 2 hours to receive the vaccines.
1 in his right arm and the other 2 in his left arm.
We went home and Mike went to a hockey game that night.
On Friday he woke up complaining of arm pain, fever, chills and dizziness. I gave him ibuprofen and made him stay in bed. His fever went down and he just slept all day. Saturday he couldn't move his arm. He looked awful and could hardly walk. His arm had swollen to twice its normal size and was now purple where he received the 2 vaccines.
We called my mom to take care of the kids and went to the ER.
The doctor that first saw him said he has something called cellulitus. Which is a tissue infection. He was pumped full of antibiotics and admitted into the hospital. During this time Mike's fever shot up to 103. He was delirious and said shooting pains were developing in his arm. Within hours the swollen arm began to turn black in the center with redness stretching from the underarm down to his elbow. I was in shock. I couldn't believe how fast this was happening. Sunday came and a specialist saw him, stating that surgery would be needed to cut away dead tissue to keep it from spreading further and to allow his arm to begin to heal. I was freaked out and for the first time in our 11 years of marriage, I saw Mike was afraid.
The problem with surgery for pnh patients is they do not have enough red blood cells to heal and their platelets are too low to recuperate from invasive surgery.
With his arm in intense pain, fevers making him extremely uncomfortable, nausea, a heart rate of 140, high blood pressure, red blood cells hovering around 8 (a normal man is usually at 14 to 15), low platelets, not enough oxygen and being unable to fall asleep due to the high heart rate, it felt like we were losing him.
They tried 5 different antibiotics but his body couldn't fight the infection with any of them. He was given a blood transfusion but couldn't finish the whole bag because his fever shot up again and they had to stop it. I still do not fully understand that but he did end up receiving the rest later.
After a surgeon and a doctor of infectious diseases looked at 2 cat scans of his arm, it was decided that the infection was not in his muscle as originally thought and he would not need surgery.
This was a major relief.
Now it is Friday. he is still in the hospital, still fighting the infection in his arm, but his last fever was over 24 hours ago. They are not even giving us an estimation for when he will be well enough to go home but he is slowly, minutely, getting better.
It will take time to heal from this and his pain will be intense for awhile as the damage to his arm is akin to that of a second degree burn.
But he is still with us, still making jokes and still insisting on telling the nurses how to do their job.