Hello everyone! It’s DAY +357. We have almost reached 1 YEAR post transplant!! February 25th is Kevin’s BIG 1st RE-BIRTHDAY!!
I haven’t updated the blog in a while. Many things have happened since my last update. Christmas was busy and I took on a p/t job on top of working for my business clients to make some extra money. I have also been dealing with my own health issues and had a Total Hysterectomy on February 1st. So I’ve been B-U-S-Y!
Kevin is still doing well despite the ongoing cGvHD complications he is dealing with. He has Chronic GvHD of the skin, liver and gut. So yeah, that sucks. But it could be worse.
He has been weaned down to 15mg of Prednisone (steroid) and 1.5mg of Tacro (immunosuppressant). The BMT team believes this is the “magic dose” for now. He is even flaring a little bit at this dose. His skin flares and his stomach really bothers him daily, but things are tolerable for the most part. The BMT Team said he could even increase the Prednisone dose to 20mg, if he thought it would help him with his stomach pain and decreased appetite. BUT then he would aggravate his Diabetes and need to increase his insulin. He decided to stay at 15mg for now. So the doses of steroid and immunosuppressant will not be changed for the time being or in the foreseeable future. Now we must hope that the dosage will continue to suppress the donor cells and maybe even cause them to eventually stop attacking his organs. Wouldn’t that be awesome?!
Kevin is still taking a wack of other medication daily. Because his immune system is being suppressed, it is important to take drugs to prevent various infections. I will post an updated list for all of our fellow BMT warriors and caregivers who follow the blog:
Tacrolimus – 1.5mg Daily (1mg taken AM & 0.5mg taken PM) – To suppress the immune system.
Acyclovir – 1600mg Daily (800mg taken AM & PM) – To prevent viral infections.
Fluconazole – 200mg Daily (100mg taken AM & PM) – To prevent fungal infections.
Amlodipine – 10mg Daily (PM) – Treatment for high blood pressure.
Metoprolol – 50mg Daily (25mg taken AM & PM) – Treatment for high blood pressure.
Pantoprazole – 40mg Daily (MID) – To help stomach/heartburn.
Prednisone – 15mg Daily (AM)– To manage GvHD.
Sulfatrim – 1600/320mg (It’s a double drug) Every Monday & Thursday to prevent bacterial infections.
Vitamin D – 25 mcg Daily
Calcium Plus – 600 mg Daily
Insulin Aspart (Novo Rapid) – Base of 3 Units at breakfast, lunch and supper PLUS corrections dose.
Insulin Glargine – 5 Units at bedtime.
Hydromorphone – 4mg PRN – For pain.
Loperamide -2mg PRN – For diarrhea.
One of the biggest challenges at this stage of Kevin’s Transplant recovery is dealing with his disability insurance provider, through his work. Kevin’s BMT Team do not want him to even consider a return to work for at least another 6 months. The insurance company isn’t happy about that… so we don’t know what we will need to deal with next.
Every time Kevin goes out in public, it’s a risk for infection. Especially since he is still taking steroids and immunosuppressant. As much as we don’t like to dwell on it, ONE infection could have devastating implications. He still needs to limit his outings. He needs to be vigilant and go out during “off-peak” times as much as possible. He is still careful about what he touches and what he eats. He is still required to wear a mask when he’s at the hospital or a medical clinic. He is also very weak and fatigues easily. Some days he spends a lot of time in the washroom. He is not ready to go back to work.
So we are still over here making the best of each day. In fact, to celebrate Kevin’s 1st RE-BIRTHDAY we are running not one, but TWO Blood Donation Clinics! One on Wednesday, February 24th from 6-7pm and then a second one on Thursday, February 25th from 6-7pm. We are seeking 10 DONATIONS for EACH clinic. If you are interested, please contact me to book. I’ve already started scheduling appointments, but we still need 12 more people to donate. Kevin and I will attend both clinics to thank our Awesome and Beyond donors. I will have celebration cupcakes too! If you know others who might like to join our Awesome and Beyond Partners for Life team and donate blood, please share this info! Anyone is welcome! =) We need people to register for stem cell donation too! =)
In other awesome news, our Grandman is just the best thing EVER. I never knew how much I could love until this little human came along. OH and our Joshy and Courtney are officially engaged! So now we have some more awesomeness and joy to look forward to! We are so grateful for the awesome stuff and that’s a CHOICE we make every single day. =) Here are a few of my favorite photos since the last update!
Thanks for stopping by!