I am 24 years old now, thanks to the person who had true altruism and decided to donate a kidney to me two years ago. Although I do still live with cystinosis. However, on the 30th of May will be the 2 year anniversary of the kidney transplant (or adoption of Serenity). I am doing well. I am doing so much better than I was at this moment two years ago. I hope my living donor is doing well too.
Again, cystinosis is a lysosomal storage disease that is caused by the accumulation of the amino acid cystine. The disease leads to kidney failure, blindness, weak bones, muscle weakness, pulmonary dysfunction, and eventual death. Cystinosis disproportionately affects blond, blue-eyed children of European descent who carry the autosomal recessive genetic mutation to the cystinosin, a protein encoded by the lysosomal cystine transporter gene (CTNS) on chromosome 17p13*.
This year on the anniversary of the transplant, I will be in Denver, Colorado. I am going to a Cystinosis Patient and Caregiver Town Hall. At the town Hall, I will join conversations in how to better treat and improve care for my fellow cystinosis patients. In addition, I will have the opportunity to meet with other individuals with cystinosis and some cystinosis specialists.
However, when I get back from Denver, I will be heading back to the University of Iowa Hospitals and Clinics (UIHC) for the two year post-transplant follow up. But, I will also be following up with Dr. Nisely at the UIHC LGBTQ Clinic. At the LGBTQ Clinic I will learn what we (the team) are going to do about my hormone levels and whether or not I will start taking estrogen.
The following details show how I am doing.
- Phosphorus – 3.2
- BUN (Blood Urea Nitrogen) – 19
- Creatinine – 0.97
- Potassium – 4.2
- CO2 – 25
- WBC – 6.4
- Platelet Count – 219
- Hemoglobin – 14.4
- Phosphorus – 2.5
- BUN (Blood Urea Nitrogen) – 14
- Sodium – 141
- Total Protein – 6.9
- Potassium – 3.8
- Glucose – 92
- Creatinine – 1.1
- CO2 – 25
- Albumin – 4.6
- WBC – 4.5
- RBC – 4.5
- Hemoglobin – 14.1
- Hematocrit – 44
- Platelet Count – 220
- Thyroid Stimulating Hormone – 1.35
The following is a list of all the medications and supplements I take to treat the cystinosis and prevent my body from rejecting the new kidney.
- Albuterol 90mcg/actuation ihhaler Indication: Asthma
- Clindamycin 300mg capsule, 600mg 1x daily Indication: Prevent infection from dental work
- Vitamin B12 500mcg Indication: Cystinosis
- Cystaran 0.44% eye drops Indication: Cystinosis
- Mycophenolate 500mg tablet, 1,000mg 2x daily Indication: Prevent kidney rejection
- Montelukast SOD 10mg, 10mg daily Indication: Allergies
- Omeprazole 20mg capsule, 20mg 2x daily Indication: Acid reflux
- Ondansetron 4mg tablet, 4mg every 8 hours Indication: Nausea/vomiting
- Procysbi (cysteamine bitartrate) delayed-release 75mg capsule, 1,050mg 2x daily Indication: Cystinosis
- Polyethylene Glycol 17grams Indication: Constipation
- Prednisone 5mg tablet, 5mg daily Indication: Prevent kidney rejection
- Prograf 1mg capsule, 1mg 2x daily Indication: Prevent kidney rejection
- Phospha 250 Neutral tablet, 250mg 2x daily Indication: Cystinosis
- Probiotic Acidophilus (lactobacillus acidophilus) capsule, 1 capsule daily Indication: Bowels
- MultiVites 2 gummies
- Sertraline HCL 100mg tablet, 100mg 1x daily Indication: Mood issues, depression
- Sennosides 8.9mg tablet, 8.6mg 1x daily Indication: Constipation
- Topiramate 100mg tablet, 100mg 1x daily Indication: Migraine
- Trazodone 50mg tablet, 25-50mg 1x daily Indication: Migraine, sleep, mood
- Vitamin D3 2000IU, 4000IU 1x daily Indication: Cystinosis
- Gabapentin 600mg tablet, 600mg 3x daily Indication: Migraine
- Rizatriptan 10mg ODT tablet, 10mg every 24 hours as needed Indication: Migraine
- Docusate Sodium 100mg tablet, 100mg 2x daily as needed Indication: Constpation
The following is the schedule for all of the medication and supplements I take.
8 or 9am: Cystaran, Prograf, Prednisone, Mycophenolate, Phospha 250 Neutral, MultiVities, Omeprazole, Docusate Sodium, Gabapentin, Tizanidine, and vitamin D
10 or 11am: Procysbi (14 caps), Cystaran, sometimes Ondansetron
2:30 or 3:30pm: Acidophilus, Gabapentin, Sennosides (as needed), Cystaran, vitamin B12
8 or 9pm: Cystaran, Phospha 250 Neutral, Mycophenolate, Omeprazole, Prograf, Docusate Sodium, Tizandine (as needed)
10 or 11pm: Procysbi (14 caps), sometimes Ondansetron, Cystaran
11pm: Sertraline, Topiramate, Trazodone, Montelukast, Gabapentin, Tizanidine, Cystaran
I have completed another semester at Iowa Western Community College (IWCC) for my associate’s degree in psychology. I completed Intro. Biology with a C, Composition II with an A, Social Psychology with a B, and Intro Sociology with an A. Currently, I have a cumulative GPA of 3.286.
Next semester, I will only have one more left at IWCC. Once, I finish at IWCC I will transfer to the University of Iowa to work on a bachelor’s of science in psychology and perhaps a master’s in public health.
This fall, I will be taking Human Biology; Abnormal Psychology; Gender Ideas, Interactions, Institutions; and Public Speaking.
I am going down this path because I would like to use my education to work within the cystinosis, LGBTQIA+, and transplant communities. I plan to work in research and clinic in those fields.
*Morrow, Thomas. “Do comparable Efficacy & Convenient Dosing Justify Procysbi’s Extremely High Price?” http://www.managedcaremag.com. Managed Care, July. 2013. Web. 27 April. 2015.*