Tuesday, July 22, 2014

Day +53 A Day in the Life of a Transplant Patient & Small Victories

Ryan’s platelet count has rebounded a little bit. They jumped up from 78K to 119K in just four days.  I felt so relieved when I found out.  I know that platelets will fluctuate and that he is doing fairly well, but anytime I see his platelets go down, I panic.  I just can’t help it.  I watched his counts go down over and over for almost a year and it was always bad news.  I am now conditioned to be disappointed to see numbers go down and it will take me awhile to get over that.

I went into yesterday’s appointment with my usual list of questions and concerns.  After not seeing an increase in platelets for a few weeks, I wanted to know if Ryan had been tested yet for platelet antibodies and, if not, I was going to request it.  If someone has platelet antibodies, it means that their immune system is mistakenly creating antibodies that attack and kill platelets.  So, my question “Has Ryan been tested for platelet antibodies?” was met with “Well his platelets are almost 120K, that’s pretty good.”  The team acknowledged once again that they know I am worried, but they want me to know that they are not worried.

Another piece of good news is that Ryan hasn’t needed any anti-itch meds in over 24 hours. He still has a slightly visible GVHD rash and, since we lowered his steroid dose again Sunday, his cheeks are a little pinker. However, so far he hasn’t had a major GVHD flare up. The PUVA therapy seems to be helping some. Being off the anti-itch meds (which also act as sedatives) has certainly increased his energy level and overall happiness. He has been a lot more loving the last couple days and has been downright silly at times.

On a non-medical note, Ryan’s latest hobby is mopping.  Yep, you read that right. He has been asking every day this week if he can mop the floor.  I figure he can’t do much damage with a Swiffer, so why not? It also gives him some additional exercise so it’s a win-win.  I am secretly hoping he will want to continue mopping everyday when we return home.

In case you are wondering what Ryan’s days are like, below is a sample of a typical clinic day (This was yesterday, Monday 7/21/2014):

I wake up and jump in the shower

Wake up Ryan and disconnect the IV used for overnight fluids

7:15 AM
Leave for Clinic

7:45 AM
Arrive at SCCA Clinic

8:00 AM
Blood Draw at Lab

8:30 AM
Take morning medications & grab quick breakfast in the SCCA cafeteria

8:45 AM
Hickman Line Dressing Change (Ryan’s most dreaded appointment every week – it hurts…)

9:30 AM
Appointment with Nutritionist:
Weight/height recorded. Nutritionist advises that Ryan needs to continue working on getting more fluids, eating more potassium rich foods and adding calcium as much as possible.  We hear for the first time that Ryan’s last chest x-ray showed some bone de-calcification, therefore, calcium and vitamin D are really important right now.

Take Psoralen in preparation for 11:15 PUVA treatment (must be taken precisely 1.5 hours before treatment to be effective)

Clinic Appointment with Transplant Team
Vitals are taken and we discuss medications, fluids, skin symptoms, lab results, ekg results, hickman line function, appetite, nausea, and so on. The de-calcification shown on the last chest x-ray is brought up again. The team re-assures us that it is reversible, but we need to continue to address it.  Note: Ryan already takes two Viactive calcium chews a day, along with Vitamin D.  The bone issue is a common side effect of transplant and the high-dose steroids – all the more reason to keep tapering him off the steroids, if possible.

Mid-day Medications

PUVA Therapy (a.k.a. “The Tanning Bed”)

12:00 PM
Lunch back at the RMH apartment. Ryan sneaks in some SpongeBob on TV while I work on Laundry.

2:00 PM
Physical Therapy at Seattle Children’s

3:30 PM
Return to the SCCA clinic to pick up new prescriptions and IV fluid bags to be used until the next clinic appointment on Thursday.

4:30 PM
Return to RMH apartment


7:30 PM
Start prepping IV pump (gather supplies, check pump battery, program pump, attach tubing to bag and prime)

7:45 PM
Clean and flush Ryan’s Hickman line and hook up IV.

8:00 PM
Evening Medications

8:30-9:00 PM
Ryan goes to bed (by this time, Ryan is normally asking if he can go to sleep…)

Around this time, I generally go to bed, but I am so busy processing everything that I have a hard time going to sleep.  About the time I finally drift off, I hear Ryan wake up and yell from the other bedroom “Mom! I have to go pee!”  My job is to get up with him and hold the backpack that contains his bag of fluids and IV pump so that he can do his business…

Note: This week’s schedule is an improvement over last week when Ryan needed anti-itch medication around the clock, including at 11:00 PM, 2:00 AM and 5:00 AM.

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