Day 100!

I’ve finally made it! Tomorrow is day 100! In the Bone Marrow Transplant world that is a big milestone because it means that if all is well you come to the clinic a lot less, you can usually get your central line (in my chest) taken out, you can start driving and being more independent, they don’t expect you to have a caretaker 24/7, you get another biopsy to make sure you’re still in remission and you are past the point at which most complications happen. I unfortunately won’t be getting my line taken out yet because my creatinine levels (a kidney function) has been slightly elevated for the past few weeks so I am STILL getting a liter of fluid every time I go to the clinic. It’s very frustrating because at this point I should be off of fluids, have my central line out, and only be at the clinic once a week. Instead I am there every 3 days. I am drinking over 100 ounces of water a day (4, 28 ounce bottles), and have even started drinking cranberry juice in hopes that it will help with the creatinine (could be a myth, but trying anything!). There are days where it goes to a normal level and then the next time it’s checked it’s back up. It is medication related because I am most certainly drinking enough fluid, so they have lowered my Prograf level (immunosuppressant) to see if that will give some relief to my kidneys. Until then I will be going to the clinic regularly even after these 100 days, which is disapointing, but it could be so much worse! I have done amazingly well so far!!

 

I am still exercising and finding myself getting stronger each time I go for a run. I am able to run longer and have come a long way since I first started getting back into it. I would much rather go to the gym because I feel like I get a better workout than running around the neighborhood or on the trail, but this will do until I’m off the immunsuppressants and can go out in public.

 

My sister leaves on Saturday which is so sad! She has been here since my transplant helping care for Londynn and me. It was such a blessing that she was able to leave her job temporarily for the first 100 days. God is so good. I look at how my situation could have been so much worse but to see how everything just fell into place is another reason why I will never doubt God’s timing and faithfulness. Of course I wish I had never gotten sick, but He made sure that everything worked out for us and that we had everything we needed to get through comfortably.

 

I still have a ways to go before I can get back to normal living. Being on Prograf, I am restricted from going out in public. So I pretty much go to the clinic and home, however I do spend A LOT of time outside running around with Londynn and walking on the Silver Comet Trail. I can’t wait until I’m able to go to the grocery store again, or out to eat at a restaurant. Carry out is nice, but having the restaurant experience is something I miss. Even going to see a movie or going to the mall. PATIENCE is what I keep telling myself! So many things we take for granted, but this experience really makes you thankful for everything, even the little things that we often overlook.

 

One thing I am really looking forward to is a VACATION!! My whole family needs one….BAD! And we so very much deserve it. Once again, I have to wait until I’m free from my immunosuppressant, but it will be glorious! We already have a trip planned to Disney World in 2016 with my parents. It will be so much fun to take Londynn there for the first time. But I plan to fit in a couple small vacations before then after this is all over. In fact, we are thinking of taking a little camping trip this summer once I start tapering off the Prograf. Since it is remote and not what I would consider “in the public” we plan to take Londynn for her first camping trip. I love camping and grew up doing it every summer. I am so excited to be able to experience it with my little family.

 

Thank you all for the continued thoughts and prayers!