Mika has B+ blood and the donor needs to be B type (positive or negative) or O type (positive or negative)

Dear Friends,

Many of you may know by now that I live with a rare disease called cystinosis. Cystinosis damages cells, causing them to crystallize and die. Only about 500 people in the U.S. live with cystinosis. The disease damages many organ systems including the eyes, kidneys, muscles, liver, lungs, pancreas, heart, and central nervous system. For me it led to kidney failure and in 2013, I received a new kidney from a good friend.

Over the past ten years, my kidney has become tired and no longer works well enough to keep me alive. Cystinosis has also caused more damage to my body including swallowing issues, muscle weakening, diabetes, etc. I am facing these problems as well as I can. For kidney failure, I have a couple of options including dialysis or another kidney transplant.

Dialysis will keep me alive for the moment, but a kidney transplant would offer me the ability to live a healthier and longer life. The transplant would also give me more time to do the things I enjoy, reading (all the Star Wars novels), writing (my own novels), cooking, being with friends, finding love, and advocating for rare disease adults and for transgender health care rights. Dialysis is also hard on the body and doesn’t work as well as a transplant. Dialysis increases the risk of getting infections and in some cases in cystinosis patients increases the risk of non-renal damage. I would not survive long on dialysis because of these many risks to me.

However, finding a kidney is not easy — especially when you’ve already had one kidney transplant. Time is not on my side: many people wait for years. Many die while waiting. The average wait time is five years or more for a kidney from a deceased donor.

I do have another option: receiving a kidney from a blood type B (positive or negative) or O (positive or negative) living donor.

Asking a friend to consider donating a kidney to me is difficult, however, it greatly improves my chances of getting a kidney transplant and living longer. Additionally, a living kidney donation usually lasts longer and has better function.

Here’s some basic information about kidney donation:

• You only need one kidney to live a healthy life.
• Most donor surgery is done laparoscopically, meaning there are smaller scars and faster healing.
• The recovery period is usually about two weeks.
• The cost of your evaluation and surgery will be covered by my insurance.
• You will have a separate team of healthcare professionals to evaluate you as a living donor. They will help you understand the risks and benefits and look out for your best interests.

Thank you for reading my story. If donating a kidney to me is something you would like to consider, I would be happy to tell you more about my story and answer any questions. I can also mail you a packet of information and/or you may call my transplant center at 319-353-7704 or visit uiowa.donorscreen.org.

If you cannot or do not feel you can donate, please help me by sharing my story with everyone you know. I am hopeful my efforts will help find a potential donor soon.

The following information is provided by The National Kidney Foundation (NKF) and United Network for Organ Sharing (UNOS).

What You’ll Learn:

– Evaluation
– Surgery
– Recovery

Evaluation:

Financial consultation – Transplant center staff will ask about your finances and insurance coverage.

Psychological evaluation – The transplant team will make sure that you are in good mental health and understand the donation process.

Medical Tests –

• Medical history – the team asks for your complete and thorough history of any illnesses, surgeries, and treatments.
• Physical exam – physical examination
• Chest X-ray & electrocardiogram (EKG) – check for heart or lung disease.
• Radiological testing – looks at your kidney and its blood vessel supply.
• Urine testing – 24-hour urine samples are collected to measure kidney function.
• Gynecological examination (if you have a vagina) – may need to be performed.
• Cancer screening – may include colonoscopy, prostate exam, and skin checks.
• Compatibility tests:
  • Blood typing – see if you have A, B, AB, or O blood.
  • Tissue typing – checks tissue match between your white blood cells and the recipient’s white blood cells
  • Crossmatching – A “positive” crossmatch means that your organ will not match recipient. A “negative” crossmatch means that your organ is compatible with mine.

Surgery & Recovery

The surgery can take between 3 – 5 hours and can be done in two ways:

• Laparoscopy – the preferred method for kidney donor transplants.
• Open nephrectomy – not done frequently and is more invasive.

What are the risks of surgery?

• Pain – you’ll receive medication for pain.
• Infection – an infection can delay healing and cause scarring or other problems. Treated with antibiotics.
• Pneumonia – it’s an inflammation of the lungs caused by bacteria or a virus.
• Damage to the kidney from surgery.
• Blood clotting: make sure to move around after surgery to prevent them.
• Collapsed lung: the kidney is close to the lung and could be inadvertently opened during surgery.
• Urinary tract infection of the bladder or kidneys will be treated with antibiotics.
• Allergic reaction to anesthesia.
• Death: the risk of death from surgery for living kidney donors’ is very low.

The above information is not complete please speak with your doctor or visit https://uihc.org/services/kidney-and-pancreas-transplant