Aloha Friday

I think it’s about time to finally write about our amazing trip to Maui, Hawaii earlier in the year. Just coming back from a short mini trip to L.A. feeling tired yet very satisfied for being able to travel. Makes me think of the endless possibilities. What I thought I can’t do or what this life fighting chronic illness and being on life support (dialysis) can be so limiting.

However, I think I’ve constantly proved to myself that I’m more than able. It may be more work, lugging my dialysis machine, making sure I stay within my diet and still listening to my body.

This would be the first time my family has gone to Hawaii. I’ve gone twice as a kid and always dreamed to go back again especially with my family. I feel like we live and breathe the aloha spirit and on most Fridays I bring that back by sharing a photo. We have been almost forced to live in a slower pace. With this slower pace it has brought full awareness and appreciation for life:

Aloha is being a part of all, and all being a part of me. When there is pain – it is my pain. When there is joy – it is also mine. I respect all that is as part of the Creator and part of me. I will not willfully harm anyone or anything. When food is needed I will take only my need and explain why it is being taken. The earth, the sky, the sea are mine to care for, to cherish and to protect. This is Hawaiian – this is Aloha!

As the child grew, the need for a fundamental code of ethics was taught. This code is found within a deeper layer of the meaning of the word Aloha. The code is derived from one of the acronymic meanings of Aloha.

A, ala, watchful, alertness
L, lokahi, working with unity
O, oia’i’o, truthful honesty
H, ha’aha’a, humility
A, ahonui, patient perseverance

The kahuna David Bray interprets this code as “Come forward, be in unity and harmony with your real self, God, and mankind. Be honest, truthful, patient, kind to all life forms, and humble.” He also stated that to the Hawaiian of old, Aloha meant “God in us.” (http://www.huna.org/html/deeper.html)

It’s in our heritage. We are islanders, me being Filipino and my husband half Chamorro. The upbringing is very similar. We both come from close families and that has been embedded in us.

My cousin’s wedding was planned for the new year, January 2016 and my big family all surprised him by rsvp’ing yes. We figured this was the best time to go for it. Even though I was just easing my way back to hemodialysis. As I always do I committed to going before even knowing if I’d be physically ready to go and even the finances to do it.

My cousin told us about a Virgin America Airlines deal for buy one get the next flight free just by attending a Giant’s game. He was able to get enough vouchers for most of my family. My sister has been doing well in her business and has talked about having a family trip together. It worked out for this to be our trip.

We booked our tickets almost a year in advance. Always a scary gamble to do for me. But I was determined to do whatever it took to have that dream family vacation and watch my cousin get married.

I had complications with my tummy after they removed my transplant. I developed a condition called ascites. Where fluid continued to accumulate. I had a catheter already in place from peritoneal dialysis. I had to remove the excess fluid weekly.

This caused many problems including pneumonia in the beginning of the year. I had to have oxygen support as my oxygen levels were low. I also had abnormal heart scans that showed high pressures. I’ve had a leaky heart valve for some time now that hasn’t been a problem until now. All of my systems felt out of wack and my energy level was very low. I honestly didn’t feel confident that the trip was gonna be possible.

This was also the reason I had to go back to hemodialysis and they had to put in a permacath/chest catheter. I had high hopes that I could use my peritoneal catheter one day but as time went on and no progress made I knew I needed to fully rely on hemodialysis. Just months before we were set to leave to Hawaii I had my AV fistula put in. It needed a few months to heal before I could use it.

In the mean time my health was returning. Life was in the slow lane and I just had to be patient with the process. My oxygen levels started to return to normal and only needed oxygen support when I slept. The fluid was getting less and less. My body was finally feeling like it was healing but knew I needed to do more to lessen the pressures on my lungs and heart.

That’s when we made the decision to do home hemodialysis but training needed to be done after we came home from our trip. More dialysis would be better for me overall.

Timing wise I had already set a goal to have both of my catheters removed before we left. That way I can enjoy swimming when we got there. Something I couldn’t do for years because of the catheters. Just a month before we left I started to use my AV fistula. They were able to schedule surgery to remove both catheters just three weeks before we left.

The day came and got full clearance with my doctors. I was happy that I didn’t need to bring oxygen support too. I had all my treatments scheduled and we were set to go. I can’t even begin to tell you how this trip was everything we could have hoped for. Having my family there whom I love very much, watching my cousin get married, and being able to be apart of the wedding party was just an added bonus.

The ocean mist air felt easy to breath as the the humidity felt good on my body. I don’t do well in the cold no more with my bone issues. I loved the healing properties the island has. We couldn’t stop talking about how we would love moving there one day. It’s okay to dream!

We fit right into the culture. My husband was already making friends that were asking him to go fishing. Many people thought we were locals. I believe it’s because they see that aloha spirit in us. We have fought relentlessly to have a quality life measured by these moments that we are so grateful to be apart of. The beauty of life is so apparent in the islands. From the food, the fellowship, and the fun.

That’s why Aloha Spirit must live on and must continue on…

I will keep fighting for it,

Maribel

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