How I’ve been feeling after surgery

Hi everyone, sorry it’s been so long since we’ve made an update, and particularly, since i’ve written a post myself. I wanted to let everyone know that I’m doing really great (much better than I thought possible…) and things have been going overall very well.

The operation itself, while intense and long, went incredibly smooth for both me and Liina. There’s not much interesting to say about the hospital other than the first day waking up from surgery was a little challenging, but everything got better from there.

Even on that first day, the way I felt was incredible. Maybe I was high on pain killers, but all the doctors were saying that I was doing amazing and my numbers were incredible (… and still are thankfully!). It’s hard to describe how different I feel after coming off of being sick for 2-3 years.

And I wasn’t just sick… I was doing pretty terrible at some points. To give you an idea, when I entered into the hospital, I weighed about 172 pounds. After about 1-2 days, I had gotten rid of about 10 pounds of excess fluid that I just could not get off with dialysis. Today when I weighed myself I was 155.8 pounds. So the kidney is working great!

The main number that the doctors use to determine kidney function is called creatinine. Healthy kidney function is in a range of about 0.5 to 2.0. When I came into the hospital, my creatinine was up to 14. Today, it is stabilizing around 1.3, which is awesome. I haven’t had kidney function this good since I was maybe 2 or 3 years old? Either way, this is a new feeling for me.

It’s really a feeling of clarity in a lot of ways. The kidney’s are responsible for removing toxins from your blood. Because dialysis was not working so well for me, I was literally swimming in toxins. And those toxins are everywhere, including your brain. So I just felt like I was in this sick fog for so long. It’s really crazy to feel this way, and I’m so grateful to be at this level of health again.

What else can I say? I’ve just been hanging out at our rental in San Mateo, going for walks (longer every day), taking pain killers (less and less everyday!), and working with my sister on some projects. Alisyn just started working remotely today, so her company will be missed during the day. But it’s good for me to start working on some projects i’ve been eager to complete but have been too out of it to focus on for long periods of time.

I’m really excited about where life can go from here. Everyone has been so nice, all our friends who have followed and supported us through this have been amazing. All the doctors and nurses in the hospital have been amazing. And everyone who’s been staying here in our little condo (my mom, dad, liina, JJ, and Alisyn) have been amazing. I just feel so great, and it’s this weird alien feeling that I am not quite used to yet.

But i’m starting to remember… or maybe learn for the first time what it feels like to be healthy and feeling a sense of peace and clarity in my mind. I’ve been through a lot in my life, and I truly feel the greatest sense of clarity now, after this surgery, because the physical and emotional journey it took me to get here has been so immense. It’s been a lot of work… kinda like climbing this seemingly never ending mountain, and then realizing you finally got to the top.

It’s not like things are 100% perfect. I still have lots of healing to do, and after living on dialysis for 2 years, my body has very much taken a beating. But things are looking up, and for the first time in a long time, I know everything is going to be ok. This will be a revolution for me, and Alisyn, and I’m so happy that we made it through this crazy time and survived to see the other side.

I’m very much looking forward to the future even though I don’t know what’s going to happen next. There is so much I want to get back to, and do for the first time, and I’m filled with a sense of peace and excitement for giving the best of myself to my life.

I hope that this gives you some insight to what’s been going on. I know that it’s been a long time, but finally “wellness for tristan” has transcended the realm of desires and dreams, and has come into reality. I truly feel well, so much better than I’ve felt in a long time, and I could not be more grateful for what has taken place.

I can never thank Liina enough for the gift she’s given me. She knows how monumental┬áthis is for me, and I’m so grateful to have such a wonderful sister that would do such a selfless act for me.

And Alisyn, I can never thank you enough for loving me and keeping me together through this process. You are the love of my life, and I truly could not have done this without you. Life can continue to be more amazing than it has ever been before.

To mom and dad, and all my loving family and friends, I love you guys so much, and I’m so grateful for all your love and support through these crazy years. I’m so happy to have you in my life!

Here’s to a bright future! Thanks again for reading!

-Tristan

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Day 3: Post Surgery

I meant to write yesterday but it ended up being a really busy day. We have some fantastic updates to share!

Liina was discharged yesterday! She is home at our temporary San Mateo condo home and doing well. Resting, pain managing, even getting a well deserved shower and homemade soup ­čÖé

Tristan is walking around everywhere, is totally disconnected from his IV now, and feeling really well if a little sore/in pain. He has a voracious appetite and he can eat WHATEVER he wants. And, he has to keep drinking water constantly (which he was completely restricted on before). What a concept!!! It is expected he could be discharged tomorrow. Woo hoo!

I am doing well. Exhausted. I haven’t left the hospital since we arrived on Tuesday, but I feel so much peace and joy in watching Tristan heal and recuperate and feel better than he has felt in years (even post major surgery). It’s really an amazing process to be a part of and I feel so incredibly lucky to be a part of this all.

But I am really looking forward to going to our temporary home, too. ­čÖé

More soon!

~Alisyn

Day 1: Post Surgery

Tristan and Liina are doing GREAT! Of course, they both have some pain and feel a little groggy and sleepy, but for the most part they are doing really well.

Liina walked around today and Tristan was able to stand up and sit up in a chair for awhile, maybe walking tomorrow. The kidney is doing amazing – pumping liquids out of his body at a rapid rate, controlling his once crazy high blood pressure, and decreasing the toxins in his body at a steady rate.

The care here at Stanford is truly excellent. Everyone is extremely communicative and on the same page. They are consistent in their approach and we aren’t hearing any mixed messages. The specialized nursing team in Tristan’s unit are on top of everything, and they are so great at communicating with us all about what is going on, and they ask for Tristan’s opinion about what he wants to do in various situations. It’s really ideal for us right now.

T & L’s surgeon is a total rock star. She is like an olympic athlete when it comes to surgery, and in this particular metaphor, I would guess that she has multiple gold medals. She is really really good at what she does. She has stopped by to see both of them numerous times. She said that one of the first things Tristan said when he came off anesthesia was to question when he needed to start dialysis next, which has been a continuous and common question he has to ask each day for the last nearly 2 years of dialysis. The answer… NO DIALYSIS!Mahatma Gandhi

Yesterday I was more worried and anxious and upset and feeling out of control than I have ever felt. Liina and Tristan’s lives were in the hands of someone else, and it was excruciating to get through. But we all made it. Wow.

Liina saved her brother’s life, and therefore all of our lives, too. At some point I will be able to process and put into words what this means to me (and us), but it’s really difficult to describe. Tristan and Liina have always been so close and connected, and now they share an organ. It’s incredibly special and profound.

It’s been euphoric and energizing to watch Tristan and Liina heal, knowing that none of our lives are going to be on hold anymore. I feel peace for the first time in a long time. We are not totally out of the woods yet and there are days and weeks and months of recovery ahead, but this has been the launch, the propulsion, and the beginning of┬ámoving forward in a real way.

YIPPPPEEEEEEEEEEEE!

With happiness and joy in our hearts this evening, coming to you live from the hospital (:-)

~The Gruener familyStairs

Success!

We won’t know completely for the next few days, but all signs point to ┬áthe best outcome possible for Tristan. His new kidney is working, and working well, and he is awake and in recovery.

I really don’t have anymore words right now. In the absolute best way this time.

oh, and the surgeon said as she walked away… “And that dialysis catheter is in the garbage.”

­čÖé

 

 

 

One down, one to go

Liina did great! She is out and in recovery. Her parents got to see her through glass and it seems the surgery went really well. Hurrah! The first thing she did when she woke up was to smile, so I think we are in great hands.

We just said goodbye to Tristan and he should be in the operating room now. They estimate 4-5 hours for surgery. I’m a bit of a wreck but so thankful to have so many loving people with me here and here virtually to keep me supported.

Thank you for all of your positive thoughts and prayers today thus far. Please keep them coming for Tristan’s successful surgery and Liina’s full recovery.