Went and got that kidney!

To all of you reading this, I (Josh) just wanted to give you an update as to what is happening. Alysia's surgery went well and there were no complications. The donor kidney is in its new home and is producing urine, which means that it's working. As I type this, it is 8:45 p.m. and Gayle and I are waiting in Alysia's room for her to return. According to the nurses, she is in an immense amount of pain and so the doctors are working diligently to reduce her pain to a level where she can rest and recover. 

We are all very excited that Alysia is going to have her life back. Thank you all for your love and support.

Sad, Disappointed, and Frustrated

I can’t describe the sadness or disappointment that my mom, Joshua and I are all feeling. We are all heart broken.

Last night after waiting in the hospital for about 11 hours we were finally informed that the donor’s kidneys were not in the condition they were hoping for, thus not able to donate.

All day, we had been sure that the transplant would be a go. The fellow doctor had mentioned that there was a slight chance that when they would harvest the donor that the kidneys would not be good, but we had hope. I was a match and very compatible with the donor.

It’s very heartbreaking and hard for me to process what happened, but it just wasn’t meant to be. I am confident that I will have a kidney soon.

I wasn’t the only one left in heartbroken last night, there was another patient waiting for the second kidney. I’m sure they are feeling the same way I am.

Thank you to everyone for all the love and support that was sent our way. We wish the best for the donor’s family and for the other kidney recipient.

If you’re not yet, please consider being an organ and tissue donor. You can register ad donatelifenw.org. Or if you are interested in becoming a living kidney donor for me, please contact me.

Thank you all and much love,
Alysia

 All of us, after an exhausting day in the hospital.

All of us, after an exhausting day in the hospital.

Waiting for the Kidney

Yesterday, we got the call that there was a kidney on the way. We are now sitting here up at OHSU doing all the preliminary check-offs.  Joshua will be posting here through my stay. So please check here for updates!

XOXO, 

Alysia 

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UPDATE: Everything is going smoothly so far. We checked into the hospital at 8am this morning, and Alysia has undergone a physical exam, chest X-ray, numerous blood samplings, and has essentially told her entire life story to each and every person to come into the room (by their request, of course). She has not yet been assigned a time for surgery, but we are hopeful that we will hear about it any minute now.

After a restless night, and having to fast all day, Alysia is currently napping in the hospital bed. We are still waiting to talk to the surgeons, as well as a few other specialists who will come to talk to us before she actually goes into surgery. I am confident that all the tests will come back okay, and that by the end of the day Alysia will have received the transplant she has been waiting for for so long.

This journey has been incredibly difficult for all of us. Personally, I am most looking forward to having my adventuring partner back. Alysia, on the other hand, mentioned yesterday that the thing she is most excited about is being able to take a hot bath.

Thank you all for your love and support. I will continue to update this page as more details become available.

National Kidney Month

March is National Kidney Month, and I’ve been doing a lot of traveling. I know that on my website I have mentioned that being on PD limits my ability to travel, and that is still true. I cannot travel very far and if I do, I forfeit my spot in the transplant waiting list. However, these trips have always been in close proximity to Portland - a quick drive away, or a short plane ride (if needed).

Whenever I leave the Portland area, I always let OHSU know of my whereabouts in case a kidney were to become available. By communicating with them, they let me know whether I am in traveling distance to remain on the list.

 Sea Lions lounging on the dock in Newport, Oregon.

Sea Lions lounging on the dock in Newport, Oregon.

My first trip was at the beginning of the month to the Oregon Coast. I travelled there to spend time with my mom for her birthday. It my first short weekend trip and packing and preparing for it was fairly easy. Because I had my car, I was able to bring all my stuff myself, instead of having it delivered there. I brought my machine, my prescription dialysis solutions, and my other PD supplies.

Here is my setup:

 My dialysis machine and my supplies for a two night trip. 

My dialysis machine and my supplies for a two night trip. 

At the end of the month, I travelled to Klamath Falls and Salinas, California.

 View from the train, somewhere on Willamette Pass, OR. 

View from the train, somewhere on Willamette Pass, OR. 

Klamath Fall is about 5 hour drive from Portland and it is where I grew up, so I knew that I would still be active on the list, but I wasn't sure about what would happen to my status when I went to California. However, when I called OHSU they confirmed that, if needed, I could catch an airplane and be in Portland in enough time. This meant that during my 6 day trip, I was still active on the list.

Packing and prepping to my long visit took much more preparation and planning. First off, I had to make sure I have enough dialysis solution, bags, and cassettes for my visit.  Since, I had stayed in Klamath over the holidays, I had leftover supplies from my visit. This allowed me to skip ordering more supplies to be delivered to Klamath. However, I still needed to bring my machine, emergency kit and everyday supplies. The heavy machine takes up about one HUGE suitcase and must be with me at all times. It cannot be checked, and so I carry it on the train with me. My second suitcase must also always be with me and consists of my emergency kit and everyday supplies (medications, bleach cleaners, gauze, tape, blood pressure cuff, masks, thermometer... the list seems endless). And let's not forget my clothes and toiletries!

I am probably a sight to see with all my stuff; two suitcases, a backpack and a lunchbox. Thank goodness the train allows me to carry all my things on board.

Traveling and being on PD is a pain, but in the grand scheme of things it is all worth it. I wanted to spend time with my family and be with the people who matter to me and that I love very much.

 Me and my grandparents in California. 

Me and my grandparents in California. 

I look forward to the day that I receive my kidney transplant and travel freely.