This is Joni, my angel dialysis nurse from 4 years ago. She helped bring me back from the brink of death to a more functional, healthier place so I could get through a tough pre-transplant process. Had a beautiful, short visit with her today.
She, and her fellow nurses, give life to so many people with hard lives. She will always be an important part of our story…
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!
2nd best thing about getting my certified, pre-owned kidney? (First is staying alive.) NO MORE DIALYSIS!!! This is my flow sheet, where I keep each night’s session stats. I just filled out the new sheet and only TWO MORE NIGHTS! No more pain, better sleep, get our evenings back, get our spare bedroom back (where a mountain of supplies lives).
Now let me say that I am very aware of how fortunate I am, since I know MANY people who have been on dialysis for YEARS. I’ve endured it for only 10 months. Having a living donor (can you say Angel Emory??) has allowed for a much faster process to transplant.
Thank you, Lord.
Got a surprise at my dialysis station in my room today…this awesome Father’s Day arrangement from my floral-designer-extraordinaire daughter Heather Rose Atkinson!
Sharing some aloha/plumeria with the lovely nurses at my dialysis clinic.
Things are looking up! My new and improved overnight dialysis machine and I have gotten more used to each other. Not quite as much pain and sleeping better. Still have to do one manual dialysis session in the afternoon, but hoping to stop that next month, and roll it back into the overnight regimen.
The best thing is that I’m starting to feel slow improvements as a result of the dialysis taking the place of my failed kidneys. I’m having more good days then bad now. I don’t feel as weak or shaky. I’ve been explaining it like this…if I was 100% before all this started, I probably got down to 10% the first few months of this year, and now feeling at about 40-50% these days. VERY happy with the progress.
Stacy and I even tried a short get-away last weekend, hauling all my manual paraphernalia with us. All went well, and we got some needed relaxation and renewal in Julian, San Diego’s quaint mountain town.
This Monday is our first appointment with my transplant team at Scripps Green Hospital in La Jolla. We’ll spend all day with various team members, talking through the whole process and each step. We’ll get an idea of the timeline and what to tell those who have offered to donate a kidney for me. Very excited to get this part of the solution moving forward.
And thanks to friend Heather Spears Kallus for using parts of my story in a wonderful blog post called Power in the Name:
Meet my new best friend. My new kidneys. Kidneys in a box. Robo kidneys. Aka my new overnight dialysis machine. It worked great last night – hardly any pain at all. Life is now going to be much better!
And I have my first all day appointment with my transplant team at Scripps setup for June 1st. Onward!
Since I’ve been such a Bad News Bear, I thought I’d pass along some good news. I’ve felt better the last two days then I have all year – more energy & more brain power. We can only attribute this to re-starting manual dialysis the last few days. It feels SO good to feel good.
We did one more test of the automated overnight dialysis machine and there was still too much pain. So today I was approved for a much better and gentler – plus more expensive – machine. We’ll have a couple of days of training on it, but hoping to be on it by the end of next week. There’s a history of success with other patients with pain as bad as mine.
So for now we’re doing the manual dialysis – 3 times a day, an hour each time. It takes a lot of time and it’s more uncomfortable, since it leaves the fluid in my belly throughout the day, but it sure is making me feel better, as it cleans out the toxins and excess water my failed kidneys can no longer filter.
Stacy and I thank you all for your thoughts and prayers, the wonderful cards I’ve received, and the amazing support of our church, Community Covenant Church. Sure could not do this without our village.
A goooood day! Cleared to take showers again! (Everyone within a 10 foot radius cheers!) We were approved to start using the overnight dialysis machine! And I rocked my lovely granddaughter Natalie to sleep. Thanks for the outpouring of love and support.
I’m not gonna lie, this last week has been pretty hellish. There were many bumps in the road with my first week of dialysis – unexpected side effects, changes to my prescription, etc. made it pretty rough on me and especially Stacy, since she hates to see me suffer. My nurse made some adjustments over the weekend and I’m doing much better. All in all, we were in a pretty dark place for a few days.
BUT…it’s Friday and Sunday’s comin’! Going to church yesterday was just what the Great Physician ordered. Experienced my own personal resurrection. Feeling better fueled to get through the next coupla weeks.
Then, while in church, my good buddy Kenton messaged me from Israel with this photo. It’s a piece of paper with my name written in Hebrew and a prayer for me written on the back. He folded it up and put it in the Wailing Wall in Jerusalem on Easter. It’s good to be loved.
The light at the end of the tunnel is once I’m allowed to move on from the manual method of dialysis I’ve been doing to the automated machine that works overnight while I’m asleep, life will get much better. And from talking to many others on this method, life will slowly start to normalize, as it brings some new life back to my body.
Parallel to the dialysis journey is the transplant journey…last week my nephrologist told me I’ve been approved by Kaiser for a transplant. Now they will hand over my case to Scripps Green, which will do the actual transplant. But, because they are a different medical system, they also have to approve me. They will take the medical tests I’ve done with Kaiser, but there will be interviews and such that I’ll need to do in person. Once approved, I’ll be assigned a Transplant Team, who will walk me through the process. After all that, they will give the thumbs up to put the call out for potential donors. I’m guessing all this will take at least 9-12 months. But we’ll see.
So…thank you all for the incredible support we’ve received – prayers, encouragement, cards, Facebook messages, meals, etc. You just can’t know the full extent of how that buoys us in the roughest of waters.
Doing my first dialysis session (manual) at home.
Yesterday I shared the link to the magazine article about my health journey. What gets kinda lost in the online version is a sidebar that lists my most important recommendations for someone who has chronic illness: