Quick Update

Since I’ve yet to write a post I thought it was time to give everyone an update since so much has happened since we first launched this blog.

The biggest news is that I’m on dialysis now, and I’m feeling so much better.  I can’t believe how bad I was feeling, and it’s really amazing to me that this medical technology exists and can make me feel so much better.

My plan was to originally start right away with Peritoneal Dialysis (which is home dialysis), but one evening the symptoms I was feeling were getting to be so bad that I thought it was time to throw in the towel and go in to the emergency room to get started on dialysis right away.  That translated into a nearly week long hospital visit, mostly to recover from the surgery to get a PD port in my stomach.

Also, I have a port in my chest for hemodialysis now.  I have to do hemo for a few weeks while the PD port fully heals, and then I will be able to get the hemo port out and be on full time home dialysis.

Things have been pretty painful, but they are getting better.  I was finally able to sleep on my side(s) last night, so I think that’s progress.  I also went and got dialysis at the clinic for the first time yesterday, and that was a pretty interesting experience as well.  I asked the nurse what the average age of patients at the clinic was, and she said somewhere between 50-70.  So I’m not really expecting to connect with anyone around my age while I’m doing hemo for these next few weeks.

So although things have been pretty crazy, I do see that things are getting better.  I’m starting to feel better, and starting to get used to dialysis and how it makes me feel.  The thing about dialysis though is that it doesn’t actually make you better.  It treats your symptoms, but that’s about it.  I’m grateful that it exists, but I know that I have to look elsewhere to try and find the healing that I really need.

Right now I’m looking at Traditional Chinese Medicine to address my kidney health.  I had the opportunity to go to Oregon recently thanks to Alisyn’s parents and see a really amazing acupuncturist.  He got me started on some Chinese herbs, as well as giving me some acupuncture.  I found the acupuncture to be really calming, and I’m very interested in connecting with a practitioner somewhere in Monterey or Santa Cruz.  I’m hoping to get that started very soon.

In the meantime I will try to be more regular about updates.  Thanks a lot for all your support!


Out of surgery

Tristan came out of surgery about 2.5 hours after he went in. He was very groggy and sore, but the surgeries seem to have went just fine.

He’s in quite a bit of pain, but they are doing a good job with pain management and he is currently resting peacefully.

I am pretty exhausted, but holding it together. The nurse jokingly told me I can’t leave the room because his blood pressure is lower when I am here 😉

We’ll keep updating you as things happen. Thanks, everyone, for your love and support. We really appreciate it.

In the hospital again

Hi friends,

You’ve probably been wondering what is going on lately, and we haven’t been great about keeping everyone updated.

Tristan has a post in progress about what landed him in the hospital this time, but we started out in the ER early Sunday morning and have been here since.

Tristan is currently in surgery as I write this. He is having two relatively minor surgeries to implant two catheters: one for hemodialysis and another for peritoneal dialysis. The emergency room had already placed a catheter in his neck for emergency dialysis Sunday, but these two ports will enable him to be discharged in the next 1-2 days. Because the PD port (which lets us do dialysis each night from home instead of going into the center 3x/week) takes two weeks to heal and another week to train for the procedure, T will be undergoing dialysis from the center every other day for about the next 2-3 weeks.

Right now I am praying that the surgery goes as well as possible with no complications, and I hope you will also send so your prayers, wishes for wellness, and good energy out into the universe for Tristan right now. We need each other during these times.

More later today …

– Alisyn