First Clinic Visit & Week at Home

I am so glad to be home! Tomorrow marks one week since being discharged, and it's kind of hard to believe because the days have gone by quickly.

As previously shared, although I came home on Monday, September 7th, I had to return to Northwestern on Wednesday, September 9th, for my first weekly clinic visit. I was glad to have the first one taken care of so that I knew what to expect moving forward. Unfortunately, traffic congestion and then an unexpected temporary street closure made me 20 minutes late for my first appointment of the day, but since I called ahead to let the office know of our delay, I wasn't "in trouble" for being tardy!

Clinic visits begin with blood work and PICC line dressing change. Then, I wait for a bit before meeting with a pharmacist to go over medications, a member of the transplant team (an advance practice nurse or physician's assistant) to discuss how I've been feeling so he/she can make notes for the doctor, and then Dr. Mehta, my transplant doctor.

Fortunately, all of the side effects I've been feeling are typical for my stage of transplant recovery. Some of my symptoms and the results of the blood draw caused changes to be made to my drugs: one of my medications was stopped completely, and a few others had their dosages lowered a bit. The rash I had noticed while still in the hospital did not cause alarm - I was told to watch it and continue to put medicated cream on it. Dr. Mehta proclaimed my blood count numbers were "spectacular" and noted that I looked, physically, more like a person waiting for a transplant rather than one just two and half weeks after having a transplant. (I bet it was the wig!) Overall, I was very pleased with the clinic appointment.

The very next day, I was admitted to home health care. I believe the purpose of transplant patients receiving this service is to keep them home as much as possible for awhile after hospital discharge and to keep an eye on new symptoms which may emerge. My main needs for home health are to have blood drawn regularly and to receive magnesium transfusions. The most important drug I am currently taking is Tacrolimus, an anti-rejection drug which lowers the immune system. It also leeches magnesium from the body, so the transfusions will replenish what is lost. By the time I return to Chicago on Tuesday, I will have had three transfusions, which take eight hours each because the magnesium is combined with one liter of fluid and pumped in slowly to reduce risk of reaction. The bag of fluid and the pump fit inside a bag which I can wear crossbody-style which means I can be active throughout the eight hours rather than having to drag around an IV pole. Home health nurses help me get the transfusion going, but I am able to unhook myself when it's over.

The leg aches and pains which were so awful a week ago are nearly gone - I only notice them if standing in place for a prolonged length of time, and sometimes not at all. I've had similar aches and pains in my hands, especially around random finger joints, over the last week but even that is greatly improving. My sense of taste seems to be somewhat better today - I hope it's not just my imagination! Eating has been tedious this week. I have noticed other rash-like areas on my skin, but often it is from the friction of my clothing or when my skin gets too warm. There is some itchiness, but it isn't severe or long lasting. This seems to come and go depending on my skin temperature. I will also be prone to having very dry skin for awhile.

My discharge orders stated I was not allowed to drive until given my doctor's permission, but on Wednesday, Dr. Mehta said he didn't mind if I drive as long as I feel safe and I feel I will keep everyone else safe on the road. Since I'm receiving home health care, I am technically considered homebound, and I should only leave home if necessary. I haven't had a need to leave home all week, and I already have a driver lined up for my next clinic visit. I may venture to the post office soon (it's a few blocks from my house), but that's all the further I feel comfortable going at this point.

I am very pleased with my progress, and I hope it continues without any stumbling blocks!

Prayer Requests

• Please pray no new recovery symptoms emerge.

• Please pray the medications do their job, and the dosages can be reduced a little each week.

• Please pray for traveling mercies for my weekly trips to Chicago.

• Special Prayer Request: My nineteen year old niece, Lena, was involved in a car accident on Friday. She suffered a broken clavicle and broken elbow, both on her left side. (Fortunately, she is mostly right hand dominant.) She had surgery yesterday morning in which two plates and twenty screws realigned her broken bones. She will need a lot of physical therapy and months of healing before she is back in business. Please pray she recovers well and quicker than expected!

2026 has been challenging for our family. We have been sustained by the love, support, concern, and prayers of all of you. We are incredibly grateful, and we know that God's plans for us have purpose and are far greater than our own.