It’s Day +222 in post-bone marrow transplant land and the wheels on the INSANITY bus keep going round and round! Fevers and high blood pressure and chills and fatigue and lack of appetite.. oh my!

We spent another day in the Emergency today. Thankfully, Ottawa BMT allowed Kevin to go to the KGH for his assessment and blood tests. They were actually really awesome with him this time. Everything was done stat. The doctor was awesome. She remembered him from a previous ER visit. She worked seamlessly with the Ottawa BMT doctor over the phone and got him in and out of that germy hospital as soon as possible.

Kevin has been having elevated temperatures for the past few days. Hovering just under the 38º C, between 37.5º C and 37.9º C. (Anything over 37.8º C is a cause for concern in an allogeneic BMT patient who is still on immunosuppressants.) His blood pressure has also been consistently high again despite being on BP meds and a beta blocker. His diastolic (bottom) number has been consistently over 100 again and this morning his reading was 179/108 (very close to hypertensive crisis). His resting heart rate was 104. He has also been feeling unwell, chilled and he has zero appetite. So this is an indication that something is going on. Figuring out exactly what that “something” is, is extremely difficult in an immunocompromised BMT patient. Allow me to break it down for you…

Kevin recently weaned off of Predinsone. He has had some mild GvHD of the skin return on his face. Mainly on his nose, forehead and cheeks. Today he asked me if I wanted to finish a piece of furniture in the garage and said I could use his nose as sandpaper! LOL It really does feel like that and it’s quite red, but he’s still handsome. 😉 Because the GvHD is affecting less than 25% of the body, oral steroids are going to be avoided for the time being. SO, the symptoms he is experiencing could very well be the withdrawal effects from this wean.

Kevin also started his re-immunizations. Yep! He needs to be completely re-immunized, just like a baby. His last vaccinations were given on Friday. SO, the symptoms he is experiencing could very well be a side effect of the vaccines.

Infection is also a major concern because any infections, bacterial, viral or fungal, can go from bad to life-threatening very quickly in an immunocompromised BMT patient.

Now that he is off of the Predinsone, there is a concern that donor cells will become aggressive again and cause GvHD of an internal organ. His liver is definitely angry and his numbers (blood counts) are trending up again. His kidneys are also starting to get aggravated again.

So you can see our dilemma here. These symptoms Kevin is experiencing may not be anything to be TOO concerned about. However, because he is a BMT patient, there is always a worry of something sinister going on. Most of his blood work came back today and was “stable” or acceptable for a BMT patient. However, there are some numbers that concern me. The bacterial cultures take time, but he is taking anti-viral/bacterial/fungal meds, so he really should not have an infection. We must continue to be vigilant and keep monitoring his temperature, blood pressure and fluid intake until his body calms the hell down. lol We are basically on a watch and wait lockdown! We are totally used to this insanity now… but many have asked why Kevin is still off of work or why he’s not better yet.

Kevin is still very much in a danger zone until he is weaned off of all the post-BMT medications. Many have assumed that just because he is “cancer free”, he is better. That’s not how it works with a bone marrow transplant. That is why recovery can take anywhere from 6 months to 1.5 years and beyond. Some patients never stop experiencing complications. I am a member of several CML, BMT and GvHD support groups, so I am very informed about this. We just need to hope with every fiber of our being that Kevin WILL recover from his complications.

One awesome thing that has happened since my last update is… Kevin is completely weaned off of insulin and his blood sugars have normalized!!! What a relief that is! Now we just need the other stuff to trend the same way!

Until my next update, here’s a reminder for all of us…

Worrying

Thanks for stopping by!!

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