You are not alone

This year has been very difficult. I had a serious mental health even followed with several suicide attempts. I was hospitalized and afterward, I moved to Ankeny to live with friends and to attend a fifteen-week intensive outpatient therapy group.

I am living with severe depression, more specifically I was diagnosed with major depressive disorder (MDD).  According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), MDD presents with depressed mood or a loss of interest or pleasure in daily activities for more than two weeks and impaired function in social, occupational, and educational activities. Additionally, MDD is a significant mental health condition that can affect every aspect of life.

Living with any mental illness makes life difficult. It doesn’t make you weak it makes you stronger. I am not proud of my suicidal thoughts and actions, but they did happen. The important thing is that I got help and it indeed helped.

I know that I am not the only person with mental health issues. I am like many other people and especially like many people living with cystinosis or any other rare disease. At times, I wish that I did not have cystinosis or that it would just go away. I would like to experience life without having cystinosis. I want to be normal.

As you may be aware, I am working on my Bachelor’s degree in psychology and I am considering getting a Ph. D in psychology afterward. I decided to go into psychology because when I was growing up with cystinosis, I did not have a mental health professional who really understood what I was going through. I felt that many of the mental health professionals I saw lacked an understanding of what it is like living with a rare disease and being transgender.

Thus, here I am working to become the professional that I was looking for.

Therefore, I plan to work within the field specializing in rare diseases and/or organ transplantation. I want to be there for young people like myself.

If you are having suicidal thoughts go to the nearest Emergency Department. You can also call the National Suicide Prevention Hotline at 1-800-273-8255, the Trevor Project at 1-866-488-7386, or you can call or text me at 1-712-314-8258.

Please remember that you are not alone. Please reach out for help. No one can do this thing called life alone.

 

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2 Years Ago This Week

Me in Pre-op with Diane and family
Me in Pre-op with Diane and family

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.

ki2011301f1Again, 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.

Labs (05/13/2015):

  • 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

Labs (04/01/2015):

  • 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.

  1. Albuterol 90mcg/actuation ihhaler Indication: Asthma
  2. Clindamycin 300mg capsule, 600mg 1x daily Indication: Prevent infection from dental work
  3. Vitamin B12 500mcg Indication: Cystinosis
  4. Cystaran 0.44% eye drops Indication: Cystinosis
  5. Mycophenolate 500mg tablet, 1,000mg 2x daily Indication: Prevent kidney rejection
  6. Montelukast SOD 10mg, 10mg daily Indication: Allergies
  7. Omeprazole 20mg capsule, 20mg 2x daily Indication: Acid reflux
  8. Ondansetron 4mg tablet, 4mg every 8 hours Indication: Nausea/vomiting
  9. Procysbi (cysteamine bitartrate) delayed-release 75mg capsule, 1,050mg 2x daily Indication: Cystinosis
  10. Polyethylene Glycol 17grams Indication: Constipation
  11. Prednisone 5mg tablet, 5mg daily Indication: Prevent kidney rejection
  12. Prograf 1mg capsule, 1mg 2x daily Indication: Prevent kidney rejection
  13. Phospha 250 Neutral tablet, 250mg 2x daily Indication: Cystinosis
  14. Probiotic Acidophilus (lactobacillus acidophilus) capsule, 1 capsule daily Indication: Bowels
  15. MultiVites 2 gummies
  16. Sertraline HCL 100mg tablet, 100mg 1x daily Indication: Mood issues, depression
  17. Sennosides 8.9mg tablet, 8.6mg 1x daily Indication: Constipation
  18. Topiramate 100mg tablet, 100mg 1x daily Indication: Migraine
  19. Trazodone 50mg tablet, 25-50mg 1x daily Indication: Migraine, sleep, mood
  20. Vitamin D3 2000IU, 4000IU 1x daily Indication: Cystinosis
  21. Gabapentin 600mg tablet, 600mg 3x daily Indication: Migraine
  22. Rizatriptan 10mg ODT tablet, 10mg every 24 hours as needed Indication: Migraine
  23. 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

Education Update:

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.*

Medical and Life Update

SAMSUNGToday, my lab results came in from the Alegent Creighton Clinic on West Broadway where I see a new physician who is just amazing! The results are just awesome! I am doing very well for a post-kidney transplant Cystinosis patient.

Medically, I am doing good. I gained weight so I am working on loosing that. I keep having headaches but mostly I am doing good. Although, as a Cystinosis patient I must watch my Thyroid and other systems since the Cystinosis affects the entire body. I am doing more walking again. I was additionally more depressed so I think that effected my weight a bit too.

My life update, I just went to my grandmother’s today, and I plan to stay here for a couple days. I plan to help her out with some house work and just visiting with her since most of the family don’t spend any time with her. I am going on a break from most of my political organizing for the rest of the year. I am doing this because I am trying to financially (I live on Disability) save more of my money instead of spending it out travel expenses for the LB380 (Second Parent Adoption) campaign. In addition, I need to spend more time focusing on myself. I need to figure a lot of stuff out and work with my medical insurance to cover the new form of Cystagon and get my insurance to pay for the eye drops that were just approved by the FDA. I need to prepare for the next chapter of my life. The next chapter of my life, should include going back to college. I need to finish my degree in Psychology and Political Science so I can get a job at the University of Iowa Hospitals and Clinics and hopefully work in the transplant department. My goal is to move to Iowa City and go to the University of Iowa for my masters degree in Psychology and Political Science. I also hope to help out on political campaigns while in Iowa City.

US-News-rankings-2013Here are those results:

  • WBC (White Blood Cell): 6.7
  • RBC (Red Blood Cell): 4.98
  • Hemoglobin: 13.9
  • Hematocrit: 43.3
  • Platelet Count: 219
  • Neutrophils: 72
  • Lymphs%: 18
  • Monocytes%: 7
  • Eosinophils%: 3
  • Basophils%: 1
  • TSH: 1.560
  • Glucose: 92
  • BUN: 8
  • Creatinine: 1.0
  • Sodium: 138
  • Potassium: 4.1
  • Chloride: 103
  • Calcium: 9.5
  • Protein: 7.9
  • Albumin: 4.3
  • Alkaline Phosphatase: 111

Clarification: All those results are great.

Now, here is all the medications I am on including Vitamins and Sinus spray:

  1. 970200_581143018593377_1471588441_nCystagon (LTD DIST) 50 mg cap. 11 caps 4x daily
  2. Mycophenolate 500 mg tab. 1 tab 2x daily
  3. Rapamune 1 mg tab. 4 tabs 1x daily
  4. Prednisone 5 mg tab. 1 tab 1x daily
  5. Phospha 250 Neutral tab. 1 tab 2x daily
  6. Levocarnitine 10% oral solution. 2 ml 4x daily
  7. Cysteaminine Ey Drops. 1 drop each eye every hour while awake
  8. Sulfamethoxale – TMP SS tab. 1 tab every monday, wednesday, friday
  9. Ondansetron HCL 4 mg tab. 1 tab every 8 hours as needed
  10. Sertraline HCL 50 mg tab. 1 tab 1x daily
  11. Sumatriptan SUCC 100 mg tab. 1 tab as needed
  12. Clindamycin 300 mg cap. 4 caps 1 hour before dental appointment
  13. Docusate Sodium 100 mg tab. 1 tab 3x daily as needed
  14. Sennosides 8.6 mg tab. 1 tab 2x daily as needed
  15. Vitamin D 2000iu ta. 1 tab 1x daily
  16. Magnesium 500 mg tab. 1 tab 2x daily
  17. MutiVites Vitamin Gummies. 2 gummies 1x daily
  18. Acetaminophen 325 mg tab. 2 tabs every 6 hours as needed
  19. ProAir HFA 90 mcg inhaler. 2 puffs every 6 hours as needed
  20. Oxymetazoline HCI 0.05% Mist. 2 sprays each nostril every 12 hours as needed