Donate a kidney for Donna

11/01/2025

I haven't posted any updates for a LONG time, I know. For the past year I've been fighting Lyme disease in addition to going to dialysis every other day.
I've had oral antibiotics 3 different times.
I've been to my orthopedic doctor (who thankfully tested me for Lyme), 2 different infectious disease doctors, my P*P, and a rheumatologist.
The rheumatologist suspected it was Lyme-related despite all of the antibiotics. He did more tests to rule out other things and referred me to an infectious disease practice. They scheduled me to have a catheter placed in my chest that connected to a vein that goes right to the heart. Then they sent a traveling nurse to my home to show me how to do the infusions every day. After that, she came once a week to do labs & change the dressing.
Then for 28 days I got shipments of the antibiotic (Ceftriaxone), saline and heparin. I gave myself the infusions every day.
I finished that 2 weeks ago & am FINALLY feeling better.
I have not been active on the transplant list since March because of all this. I am still accruing time on the list, but will not receive any calls for surgery until I'm healthier.
They want you to be able to get up & walk quickly & I still can't do that without a cane. My muscles have gotten much weaker in this year so I have to build them up again.
A lot of things can make you inactive on the transplant list, so just getting listed doesn't guarantee a kidney.
Here's my savior - the central line aka chest catheter. It went in by my neck and out of the chest, with 2 tubes called lumens to put the syringes of medicine into it.

06/25/2024

I haven't posted for a long time because nothing new has happened regarding transplant. Most people wait 3 or more years, so I'm not surprised. No living donors, so I just wait.
I started dialysis in the fall because I was too tired to keep up with the tasks of daily life. I just wanted to sleep. I didn't feel like eating, didn't remember when I'd last washed my hair... the lack of kidney function affected everything. My body was dying.
Dialysis was hard at first. I almost passed out several times. I have veins that have zig-zags in them, which makes it hard for the nurses to find good spots for the needles. That causes the needle to poke through the other side of the vein rather than just sit inside it.
Then when the machine returns the blood it has cleaned, it pushes out of your vein and into the tissue. That causes rapid swelling because it's coming out so forcefully. It can also make you pass out because your blood pressure drops a lot very fast.
The other problem is once your arm swells up, they can't put a needle in that area.
So I've had a lot of this. It's called an infiltration. At first it scared me because I almost passed out or got nauseous. Now I'm a pro at dealing with it.
After 9 months of dialysis it's getting easier and the treatment is working well, so on the days I'm not there I have the energy I need.
It's good that I do because things keep breaking in my Mom's old place so I have a lot to do. I can't afford to hire someone so I'm learning how to fix things myself when I'm strong enough.
It's a weird way to live, to be honest. I don't know what my future holds so I can't make long-range plans. I just do what I need to do each day.
My cats continue to be a great comfort to me. I lost my oldest one in Jan to heart failure. That was really hard because I'd had him since he was 8 weeks old. He got me through some bad times & was very special to me.
But it makes me appreciate the others more.
I don't take life for granted. Everything can change in a day. Be grateful.

08/18/2023

I had to go to Bellevue today to pick up my sweet Sable's ashes. I haven't been to this area since the early 90's so I decided to look around. First, the cobblestone streets! Amazing that people would lay all of these down to create a street.
I wanted to go to the Lincoln Bakery but they closed right as I got there. 😢. So I walked a few more blocks just to look around.
I'm exhausted. I'm sitting on a park bench now to rest. It's so weird to be this way. A year or two ago I could've walked all of Main Street. Now I have to remind myself that I don't have the strength to do this anymore.
It sucks.

05/18/2023

I've been too busy to post updates the past month. I had continuing power problems from the storm in April, my Mom's memorial on April 23rd, lots of grass to cut and the 9 cats keep me busy, esp cleaning all of those bowls every day!
Cleaning out all of my Mom's things is an ongoing process, as well as the legal things to get her estate settled. We've had problems with a trust that she never told us she had. The lawyer we were going to use didn't have time to get into all of that, so we have to find a new one.
I have good days and bad days as far as my energy levels. Some days I just drag myself around to get a few things done. The Procrit shots I give myself help tremendously. I do it every 2 weeks, but I think they only work for a week and a half. I start feeling tired & weaker around that time.
I'm learning to take rest breaks. It makes me feel like an old woman, but it is what it is.
Nothing is getting done as well as I want, so I'm learning not to be such a perfectionist. If it gets done at all that's good enough.
Hope everything is good in your world. Please keep sharing my story, since I haven't found a donor yet. Thank you!

04/09/2023

I'm having a calm, normal weekend, finally. No giant wind storms to deal with. I have power! Last weekend lightening struck an electric pole that directly supplies my home. It blew up the transformer and fried the wires for my internet access.

So for four nights I had to light candles & use flashlights, eat cold food only (but nothing that needed to be refrigerated), and wear 2 layers of pajamas and gloves to sleep. Bed was the only warm place to be!

I'm so glad to be almost back to normal. The strike fried my wireless modem so I still have to buy a new one of those.

At least now I can get back to sorting through my Mom's things, looking for financial documents that we knew nothing about but now need, and preparing for her memorial.

I got bloodwork done on Friday & nothing has gotten much worse. I seem to have stabilized for now with just 11% of my kidney function left working.

So I can probably put off dialysis a little longer. Thank God. The idea of leaving my cats for 5 or more hours every other day scares me.

This week I'm going to have to cut grass for the first time this year. I haven't used the mower since 2016 so hopefully I remember how it works.

So many changes lately. Happy Easter, everyone!

03/25/2023

My shelters for the feral cats are both destroyed. The 1 big cat house is intact but the cat is scared by the wind & the noise of the plastic.
Now I have to quickly build or repair a shelter for them.
I’ll add that to finding a new kidney & taking care of all the death notices for my Mom. Life can give me a break any day now.

03/25/2023

As if I don’t have enough to do right now… this tree has been there for about 20 years. It just had to go down now, when the woman with end stage kidney failure has to fix things.
My life right now is so bad it’s funny.

03/25/2023

Hopefully this is good news, altho if people don’t donate organs nothing else matters.
I didn’t know I was paying a fee to be listed until I read this. So dying people have to pay for the chance to get a transplant?
It seems like that could make UNOS want to keep us waiting so they’d keep collecting fees. 🤔🤔

Federal health official announces plans to break up the monopoly power of the United Network for Organ Sharing, which has run the system for nearly four decades.

03/15/2023

As if needing a new kidney isn’t enough, last week I came home from a doctor’s appointment and found my Mom dead on the garage floor.
It looked like she had been putting something away in there & felt dizzy and sat down on the floor. She was laying flat on her back & didn’t have any injuries like she would’ve if she had fallen.
I’ve never experienced anything so awful. My brain couldn’t accept that she might be dead, because that meant there was nothing I could do. I shook her legs and kept saying “Mom!” hoping she was just passed out.
When she didn’t wake up I touched her face and it was cold, so I knew.
I couldn’t stop shaking & crying. I called my sister, called 911, then called my brother.
Since then every day has been about getting into a new routine, helping my cats adjust, letting people know & doing lots of cat dishes (feeding 9 cats every day produces a lot of dirty dishes & cans of cat food that need to be washed so they can be recycled).
By the end of the day I’m exhausted. I can’t believe this has happened 7 months after I found out I was end-stage. The fun never ends (sarcasm).
I’m taking it one day at a time because that’s all I can manage.
This was my Mom and Dad sometime in the 1960’s, I think.

02/21/2023

So tired today. It’s such a weird thing. I got less sleep yesterday but had more energy. I never know, because it’s mostly anemia that makes me tired. When you don’t have enough red blood cells, you don’t get the right amount of oxygen to your muscles and your brain. The part in the text below about small exertions causing shortness of breath is spot on.
And at a certain point, your muscles start to waste away because rather than keeping protein molecules in your body, they escape through the kidneys and go out in your urine. We need protein to build muscle.
I’m learning more about the human body now than I ever did in school.

01/31/2023

I was asked today how a person would know if they were a match for me. I thought it was such a good question that I wanted to share what I know.
If someone registers online at my hospital’s site (livingdonorreg.UPMC.com), they’ll get a call from my hospital to ask basic health questions. Then if they seem in good health, they’d want to run some blood tests. They look for several things like blood type, antibodies and more that even I don’t understand.

I'll be tested every month to check my antibodies to see if they've changed. This way the transplant hospital always has current data on what mine are.

All of this is paid for by my insurance.

And even if you're not a really good match for me, it's still possible you could give me a kidney through what's called a "paired exchange". That's when a person donates to someone else, and that person's donor gives theirs to me. So please register to find out!

Thank you for your interest in becoming a living donor. If you would like to donate to a specific individual, please ensure that they have been evaluated for a transplant at UPMC, located in Pittsburgh, Pennsylvania, and are currently in contact with the UPMC Transplant team.