Long Time!

I can’t believe it’s been almost a month since I’ve last updated! There is a reason for that. I’ve had a rough patch the past 3 or so weeks so updating or even thinking about typing anything has been the last thing on my mind. But praise God, I’m finally starting to feel like a normal person again and things are looking up. Since my last update I’ve had several fevers, a viral thing (I’ll explain), GVHD and just feeling sick and blah!

I was doing great up until about day 18! Then after getting home from the clinic I spiked a fever and got admitted to the hospital. My white blood cell count was low, but not considered critically low, so the doctor wasn’t too concerned but had me come into the hospital anyway to get blood cultures done and some other tests to rule out infections. It was crazy because I had a high fever at home and by the time I got to the hospital I didn’t have one…go figure. But better be safe than sorry. The nurse says that happens about 90% of the time. So strange. Everything came back fine, and I was sent home the next day. Seriously, the record for shortest hospital stay especially for a transplant patient! For the next week or so I had a low grade fever and sometimes it would spike to an actual fever so I got treated with tons of antibiotics in the clinic. My white count was high enough that I didn’t have to get admitted to the hospital and could be treated outpatient. What a blessing because the hospital is one place I hate to be! All of my blood cultures and viral tests continued to come back clear so they attributed the fevers to engrafting which can happen when the new cells start taking over.

Shortly after I did have to start getting treated for what could have turned into a viral infection. About 90% of adults carry a virus called CMV which will rarely ever cause problems until you are immunosuppressed. It lies dormant until someone’s immune system is weak and then can flare up. It is common in transplant patients so they monitor the virus very closely. Once the virus gets to be a certain level in the blood they start treatment right away, before it can turn into any kind of infection. The levels in my blood began to increase, so I started treatment for that, and the drug they used was not a friendly one. It made me feel like I had the flu every single day for a few weeks. I am still getting treated for the CMV but they have switched me to a different drug which doesn’t make me feel horrible. I will continue getting treated for the CMV for a few more weeks to avoid it flaring up again. They also changed the med because it was making my liver enzymes skyrocket. Now that I’m off of that and on the new medication my liver enzymes are decreasing and getting back to normal.

Since my last update I’ve also had a bout of GVHD. I have talked about this in my previous posts. It’s where the new donor cells attack my body because it doesn’t recognize it. I got a rash on my arms and legs and had an attack on my gut so had severe diarrhea (sorry if TMI). Once they suspected (and confirmed GVHD) they got me started on treatment right away. My skin rash was confirmed by a skin biopsy which was a quick and easy procedure. But for my gut they had to do a colonoscopy to confirm, so I wasn’t too thrilled about that. But it wasn’t too bad. They treat the GVHD with high dose steroids then after 4 days they start tapering them off. The tapering takes a few weeks so I will be on them for a little while longer. Now I see why people don’t like being on steroids! They are not a fun. The very first day I retained every single amount of fluid I had that day (which I get a lot in clinic), so swelled up pretty bad. They gave it a couple days before giving me something to help get rid of the fluid then I finally started urinating and getting rid of the extra water weight. But I’m still a little swollen, and my face is puffy, but it’s getting better (my wedding ring fits again) and will continue to as the dosage decreases. At least the GVHD is under control. Both the rash and diarrhea are gone, so that’s a great thing! They never like to see severe GVHD, which is why they treat is aggressively and quickly, but they do like to see some because that means the new cells are working and fighting off things foreign including any remaining cancer cells. They call it the graft vs leukemia effect. The relapse rate decreases with the incidence of GVHD, so it can be a good thing when controlled.

With engraftment, fevers, treatment for the CMV and the GVHD it’s been a long few weeks, but I am finally starting to feel normal again! It’s a great feeling. I was starting to really get discouraged because I felt so sick, weak and blah for so long. I was thinking I was never going to start feeling normal again….crazy me. But God is good and is continuing to heal me. I am only day 34 so still have a ways to go, but I’m so blessed to have had no infections (besides the cmv but I don’t consider that since it was treated before becoming an infection), and only hospitalized for 1 night. I got my blood drawn last week to see what percentage of donor cells I am. They like to see 50% at 30 days, so I am hoping for that. All of the signs show that it will probably come back pretty good. My new cells are obviously at work and my blood counts are also good, so that indicates I am engrafting just fine.

My white blood counts are normal, platelets are getting there, and my blood levels are close to normal but I haven’t needed any transfusions for a couple weeks, so they are stable and getting better. It will take my platelets and blood time to get back to normal and to stay normal. But having a normal white blood cell count is amazing. I’m still at high risk for infection because of the immunosuppressant’s, but having those neutrophils helps tremendously!

Today is the first day since before my transplant that I have been home before noon. I am in the clinic all day every day usually from 8am – 4pm getting fluids and meds. Today they cut back my fluid to only 1 liter so I was there for half of the time. It’s the little things! Every little thing is a victory these days. I am looking forward to all of the rest ahead of me. It’s hard leaving the house before seeing Londynn and coming home a couple hours before she goes to bed. Even though I won’t be getting any days off for at least a few more weeks (once the CMV treatment and steroids are done), cutting down the time and being home earlier is wonderful. I’ll take it!

My wonderful sister and mom are still out here helping Braxton and I care for Londynn. My dad has been going back and forth. I am still getting cards, texts and phone calls of people checking in and sending prayers. I’m always so grateful and overwhelmed.  I can’t imagine not having the support that I have between my friends and family. Without you, this would all be so much harder and nearly impossible. Love you all!

Since I don't post pics of LK on Facebook much anymore here are some recent ones!