It’s DAY +48! Almost half way to the DAY +100 milestone! Although there are complications, there are still blessings and we are focusing on each and every one of them.

Thankful

Not much has changed since my last post except for the BMT doctors’ minds about how long Kevin can remain on the high-dose Prednisone for his GvHD of the skin. Kevin had follow-up appointments at the BMT Clinic on Friday, April 10th, 2015 and again yesterday, Tuesday, April 14th, 2015.

On Friday the doctor added 3 new prescriptions to his long list of post-BMT medications. Some are PRN (as needed) medications, however, most are taken. **Please keep in mind that most of these medications are necessary because of the post-BMT complications that Kevin has experienced. Here is an updated list:

Tacrolimus (Prograf) – 6mg Daily –  Immunosuppressant to prevent rejection.

Acyclovir – 1600mg Daily – To prevent viral infections.

Amlodipine – 5mg Daily – Treatment for high blood pressure.

Pantoprazole – 40mg Daily – To help stomach/heartburn.

Olanzapine – 10mg Daily – To prevent nausea.

Prednisone – 200mg Daily – To manage GvHD.

Dilantin – 300mg Daily – To prevent seizures from high-dose Prednisone.

Posanol – 15mls Daily – To prevent fungal/mold infections.

Doxepin – 10mg Daily – To help with sleep, itch and pain caused by GvHD.

Insulin Aspart – Base of 20 Units at breakfast, lunch and supper PLUS corrections dose.

Insulin Glargine – 40 Units at bedtime.

Clobetasone medicated cream – To help manage GvHD.

Hydrocortisone cream – To help manage GvHD – safe for face, armpits and sensitive areas.

Ativan – 1mg PRN – To help with anxiety and sleep.

Hydromorphone – 2mg, 4mg or 9mg PRN – For pain.

Maxeran – 20mg PRN – For additional nausea.

Benadryl – 12.5mg PRN – To manage Maxeran side effects.

Loperamide -2mg PRN – For diarrhea.

Trazodone – 25-50mg – For sleep.

Hydroxyzine – 50mg PRN – For additional itching caused by GvHD.

 

Yesterday we were in Ottawa at the BMT Clinic for another follow-up and we fully expected the doctor to lower the Prednisone dose, like we were told before. Well, long story short, the GvHD of the skin is not really improving. His face and neck might be improving because they are peeling, but it’s hard to tell at this point. Regardless, the rash is still spreading and it’s serious, but it’s not severe so the doctor thinks the steroid is helping slow down the progression. Also, the GvHD doesn’t seem to be attacking his liver or intestines at this point, but the doctors are worried that it will attack these organs if they lower the steroid dose at this point. With the exception of becoming an “honorary diabetic”, as Kevin puts it, his body is tolerating the dose of steroids fairly well. So all things considered, staying on the high-dose steroids is the best call, even though the side effects suck. GvHD is the primary concern and everyone is hoping the feisty donor cells start to get along with Kevin’s body and things improve without further intervention.

This morning we had an appointment with an awesome Diabetic Nurse who educated us about how to better manage Kevin’s blood sugar. Even with serious carb management, portion control and already high-dose insulin doses, Kevin’s lowest blood sugar reading over the last week and a half was 15.5 mmol/L / 279 mg/dl and his average reading was 19.5 mmol/L / 351 mg/dl. Today we learned that his daytime insulin doses need to be much higher. So today at lunch his blood sugar was 22.2 mmol/L / 399.6 mg/dl and before he was taking 20 Units at that reading. Today he took 32 Units and we will find out how well that works at supper time. Bringing his blood sugar down is another priority because it can also cause serious damage to his organs. We now have a newfound respect for diabetics!! It’s a freakin’ tough disease to manage and live with.

One really positive thing that has improved as a result of all this blood sugar business, is out eating habits! Kevin wouldn’t necessarily say that is a good thing, because he misses his sweets and the Prednisone makes him crave them like a monster. However, it is absolutely an awesome thing.

So now we basically wait and watch for signs of GvHD progression and infection and we HOPE that things improve. If they do not improve, Kevin will be re-admitted to the hospital.

Until my next update, take good care of you and your special ones and cherish every awesome moment!

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