Navigating Home Dialysis: A Personal Journey

So many updates. I am not sure where to start. But they are great updates.

Dialysis progress –

This week Tyler and I attended PD training so that we can conduct PD at home. I was shaking during the training. I burst into tears because of the horror of the chance of causing an infection and indirectly causing him harm. The empathy and kindness that I received from nurse Sarah in that moment will stay with me forever. He has a tube in his stomach which is a direct line for infection. There are so many life-or-death steps to finish PD at home. It was extremely intimidating, but we are feeling better about it. Who am I kidding? He was fine, I am the mess.

Tyler is doing great at it and a champ. He continues to have a positive attitude, and we graduated from class this week. We are now on day one of our full day of PD at home.

We fill with dialysis solutions – at 8:30am, 1:30pm, 6:30pm, and 10:30pm. Each fill requires a drain before we fill again. The fluid remains in his stomach for six hours. It absorbs the toxins and some of his nutrients from his stomach “sac” (the space within the stomach cavity). He cannot lift more than 15 lbs with the fluid in his stomach or he risks having a hernia. Eventually we will be trained on the cycler and he will do dialysis while he sleeps.

Modern science has come so far. It provides options for dialysis patients. We are thankful to Vantage (formally known as Baxter) and BC Renal. Vantage ships our dialysis supplies to our house. BC Renal pays for it all. Patients with Vantage can travel just about anywhere in the world. You need to give the the company notice of your upcoming vacation plans. They will ship the supplies directly to your hotel room.

Anemia –

During this journey we discovered that Kidney failure can lead to anemia. Tyler’s hemoglobin is 85 and he needs iron fusions. We will be doing that this coming week. He will also have Iron shots every two weeks. When your kidneys fail, they can no longer produce the hormone that produces hemoglobin in the body.

Anemia leads to extreme fatigue & weakness. He sometimes also looks very pale.

Transplant Referral update –

Due to having Bergers Disease, Tyler will need a transplant. We are scheduled to begin the screening process on May 6^th. I am hopeful that maybe some other family members will come forth to be tested.

You have to be in general well health – physical and mental. You also have to have a BMI of under 35.

The more options we have – the better chance of a match. I will also be getting tested to see if I am a match. The process is going to be quite a journey. We will need to meet with medical teams many times over the next few months.  

Physical Health

This journey requires lifestyle changes for both of us. I recently joined a gym, and I have attended two sessions with a personal trainer. My goals are to build my strength and endurance. I need to pass a stress test to be considered for donation. I am also learning a lot about Macros and nutrition which has been helpful for supporting Tyler’s unique dietary needs. Sodium intake must continue to be under 15% of the Daily Value for every item we eat. This is the only thing I have control over. Therefore, the gym will be my antidepressant. It will be my personal battleground where I prepare. ❤

Thank you to all our friends who have donated to the Go Fund me. We appreciate you and we are incredibly thankful for your kindness. My income has been delayed until next week because of paperwork from my employer. The Go Fund me has been a lifesaver safety net.

Family & Faith

Many of my friends know that we share two sons together. The children are doing as well as can be. We would like to thank the staff members at their school for their generous donation for groceries. May God bless you for your kindness. And a special thank you to my husband’s family members for their support. This would be a HELL of a lot harder without you. May God also bless you for your unconditional love and strength. Seriously, thank you.

P.S. if any of my co-workers are creeping – I love you all and miss you. Keep saving the world while I am gone. I will return soon to help spread sunshine with you all once more in July.