The Spoon Theory

No other resource was more helpful in assisting my friends and family to understand what it was like to be me while battling chronic kidney disease.

If you deal with chronic illness, please read this, then forward it to those closest to you. They will be enlightened and you will be relieved when they don’t pressure you as much. Many times my folks or kids would ask how my spoons were doing.

This is from the website But You Don’t Look Sick. You can also download this article in PDF format or get it translated in Spanish, Hebrew, and French.

Read it in English:

The Spoon Theory by Christine Miserandino

Prison Break, Part 2

Got some wonderful moments at the beach today. (Second half of Crystal Pier closed due to high surf.) Added bonus! Time with our dear friends Fred & Nancy Gale, who stopped here to visit on their way home to Boston. Nancy took on breast cancer last year and won! So we had much to talk about, including so many shared experiences on our own journeys.

12642679_10153338711948016_6472092955192256534_n

Reflecting…

Since yesterday was our one-month anniversary, it got us all reflecting.

Our wonderful family friend Emory donated a kidney to someone else so I could get the kidney I need. That kidney came from Glenn. I had to share their posts from yesterday:

EMORY:

It amazes me how strangers connected by a “simple” thing can come together and provide so much support and laughter, and a shoulder to lean on when in need. It’s only been a month but already so happy to have added these people to my life. ‪#‎kiidneydonor‬ ‪#‎livingdonor‬ ‪#‎changinglives‬

GLENN:

Human connections are a funny thing. As my kidney recipient goes through his ups and downs of healing and adapting, my emotions go up and down with him. This is a guy I’ve known for all of 4 weeks. We’ve talked for no more than 5 or 6 hours. And yet there’s something that connects us that seems to be far greater than people I’ve known for years. Why? A kidney is nothing more than some human cells formed into an organ, an organ that I can’t even tell is missing and that I don’t need. So it’s something much bigger than that. Is that what bonds us as human beings? Is that what makes us an advanced species, the power to connect with others quickly. Is it evolutionary? Is it based on survival instincts? Where is it in Maslow’s Hierarchy of Needs? I don’t know, but it’s a very strange feeling and I feel more human for having it.

ONE MONTH!

Today is one month since my kidney transplant!

Spent a loooong 8 hours at the hospital yesterday. Good news/bad news:

Good: One month is a critical juncture in the process. Percentages of success increase dramatically now. The docs are all pumped with my new kidney – great labs, operating strong, good all around. Restrictions will slowly start to be lifted on me. We’ll see what the results of this week’s biopsy is.

Recovering well from Tuesday’s outpatient surgery. Got two new incisions so a lot of pain with that, until late yesterday. Much better this morning. And loving not having to mess with my dialysis catheter. That part of my life is behind me!

Bad: When checked yesterday my wound vac/drain is not in the best position anymore to drain the fluid. So Monday I’ll go back in for repositioning or adding a 2nd drain. That’s 4 times under anesthesia in a month – I see it as a chance to catch up on lost sleep.

Thanks for the love and support!

Back In

12651326_10153330919288016_949053269386896353_nBack in for outpatient, routine surgery, 4 weeks post-transplant. Remove stent and my dialysis catheter, the last vestige of dialysis. Plus a biopsy of the new kidney. Cya on the other side!

Follow-up: Surgery was successful. I got 2 new incisions so a lotta pain. Just took some Norco. Very tired..

 

 

Update

Things have turned a corner. Here’s the rundown:

The drain put in last Friday worked well for a day, then I found myself in Urgent Care 3:00 Sunday morning due to severe pain. Bottom line: The drain is still working to get out the excess fluid and will continue to diminish until everything heals up in there and stops leaking fluid (mostly from the lymph system). Yesterday was the best day I’ve had in a while – MUCH less pain, easier to get around – and with no pain killers! Feel good this morning, too.

Surgeon says of all the problems, this is the best to have. It’s common, and the new kidney is still doing great. They’re not worried about it, which is of course the most important element of my recovery.

Yesterday was 3 weeks since transplant, and at 4 weeks I’ll have outpatient surgery to get the stent out, take out my dialysis catheter, and do the first biopsy of the kidney.

Thanks for all the nice notes and texts asking how things are going. We appreciate the support!

Perspective

First, thank you for ALL the amazing birthday wishes yesterday. I didn’t have time to go through them all, but I will today.

I’m not gonna lie…this week has been a challenge. Alotta pain. It started Sunday in the transplant site and got worse throughout the week. On Thursday the surgeon ordered an emergency ultrasound, which found significant fluid build-up near the new kidney.

An urgent procedure was scheduled to have a drain inserted to get that fluid out before it compromised the kidney by pushing it out of place. So yesterday afternoon they knocked me out and the interventional radiologist did the deed. The drain will stay in a few days until they feel it’s completed the process. This has already reduced the pain significantly., just learning to juggle the drain bag when I’m moving. Hopefully Monday they will have results from tests on the fluid.

Also, on Thursday I pulled the muscles in my right side. That has been excruciating pain. The doc says that’s common as they have to cut some muscles in the transplant surgery, which puts pressure on others muscles that aren’t used to being used for certain activities. It’s slowly healing and feels a little better today.

The good news is that the REALLY important stuff is all good – my new kidney function is solid, no signs of rejection, labs all look good. That’s what really matters, so I’m considering this a minor setback on the road to success!

I actually started to get whiney about having to do all this on my birthday, then my son Jeremy said, “How cool that they’re saving your kidney on your birthday!”

Perspective regained.

Transplant Buddy

Meet Heather Kantor, my transplant buddy. She was the first recipient in the kidney chain I was honored to be part of. Her donor, Glenn, wasn’t a match with her (like Emory wasn’t for me), so I got his kidney. And, of course, neither of us would have a new kidney if not for Breelynn, the altruistic donor who kicked off this amazing story. Heather’s final check up with Scripps coincided with my appointment today so we met for lunch to catch up before she moves back east. Feeling blest that I not only gained a new kidney but dear new friends as well…

12473919_10153304101473016_7760779430498028766_o

One More Squeeze

One last squeeze with my angel donor Emory yesterday before she headed home to San Jose. After her post-op appointment, she and her mom Karen came over for lunch. So how do you say thanks to someone who saved your life? It is quite the challenge. Not sure if I can ever fully accomplish that. So, for now, I love you.

20160108_135447-1

Post-Transplant Update

10 days since transplant…the surgeon and doctors are all super encouraged with my recovery so far. There’s still pain in the transplant area, but not bad enough that Tylenol can’t take the edge off. And they say that’s the healing happening, so it’s a good kinda hurt.

The best part is that as the surgery haze has the slowly lifted this week, I’m noticing the long list of side effects from the kidney disease and dialysis are just GONE. Not there! My head is spinning with how much better life already is.

Get the staples out next week, then outpatient surgery on 1/26 to get the stent out, get my dialysis catheter out (YESSSS!!), and a biopsy of the kidney.

Already have a good dose of Cabin Fever. My Monday/Thursday appointments at the hospital help with that some, but still wishing I could get out – not to be for a few weeks. Stacy has been a saint putting up with my restlessness – much of her nursing is just trying to keep me down.

Thanks for your continued support & prayers – this month is still critical to the success of this amazing transplant!