I never thought I would need a new kidney

End stage renal failure experience and information (and hope to find a living kidney donor)

Operating as usual

01/13/2024

So, how is Peritoneal dialysis going? Well, it’s better than no dialysis! If I were to choose to quit, they would put me on hospice care. But to answer the question, there are pros and cons. I’m lying here at 2:53 am, wide awake, due to “drain pain,” hence the heating pad on my belly. The catheter in my belly puts 2500 ml’s of fluid im my abdomen per cycle, lets it “dwell” for abut and hour and a half, and then it pumps it back out through a tube. This is often painful, and there are four cycles of fill, dwell, and drain. “Drain pain” feels very similar to menstrual cramps, but I don’t get to take ibuprofen. For draining, I also have to lie only in my right side, sit, or stand. Needless to say, I rarely get a good sleep. My dialysis machine (cycler) beeps an alarm any time some tube is not getting good flow. I have to check the lines to see what the problem is.
Another con is the calories! The fluid solution is a dextrose water, so your body does absorb the calories. One treatment, meaning every night, is calorie equivalent to one meal and one snack! Not fair! I already was being careful with my diet restrictions, and now I’m taking in calories that I don’t even get to willingly partake of!
Generally, I don’t really feel “good” until about an hour after treatment is over and I get up. A successful treatment takes 9 hours. It is not comfortable. Ideally, one should be sleeping through it.
It is still better than doing hemo (blood) dialysis at a dialysis center!

01/02/2024

My dream for 2024 is to receive a new kidney! I got approved to be in the UNOS organ transplant waiting list in April if 2023. Started dialysis in June. It has been a long and hard road. Although peritoneal dialysis (abdominal) has been better for me than in- center hemodialysis (through the blood), it is still so hard to deal with every single night for the rest of my life, until I get a transplant. In the next few days, I will be posting information about being a living kidney donor.

- There is no cost to a kidney donor. The recipient insurance company pays for ALL expenses related to donation. There are several medical tests required, but those are all covered at no expense to a donor. A donor does need to have all their personal preventative, gender related, and age related screenings or exams done on their own, but those should be kept up to date anyway. More on what specific tests are required in a later post.
The donor pays ZERO for qualifying testing, surgery, recovery, or travel, if required.

Let me know if you have any specific questions I can answer for you. Coming up- what is required to become a kidney donor.

11/09/2023

Got my chest catheter out today! Woohoo! 👏😃

Photos from I never thought I would need a new kidney's post 10/31/2023

So this is what it looks like to do Peritoneal Dialysis (PD) at home. Dennis says it looks like a hospital in our room. All those boxes hold the supplies that I will use in a month. All that fluid that you see on the dialysis machine (cycler). will go in and out of me every night! I’m so happy to not have to go to in-clinic dialysis any more. What I’m not so happy about is all that fluid has dextrose in it (a form of sugar), so depending on the concentration that I use, it is an extra 400-800 calories a day!

10/30/2023

I’m smiling under the mask. Today is my last day of in- clinic hemodialysis! I am so happy about this! Starting tomorrow, I will be doing peritoneal dialysis (through the abdomen) at home, overnight. Then, in a couple of weeks, I can get my chest catheter taken out. I think I might be happiest about that.

10/30/2023

you can donate an organ while you’re alive? As a living donor, you could give one kidney or part of your liver, lungs, pancreas, or intestines to patients in need. Learn more about the impact you can make as a living donor: https://www.organdonor.gov/learn/process/living-donation

09/30/2023

What’s this? This is what my chest catheter port looked like when I woke up on Friday to get ready for dialysis. No, it is not supposed to be soaked with blood like that. It was a bit scary, but I was going to dialysis and they would know what to do. Luckily, it didn’t cause any problems, but I am just showing what life is like with a “perma cath.”
Pretty sure I caused this myself. I felt pretty good on Thursday, and when I feel good, I think I can do more than I should, so I cleaned and organized and did laundry and yard work all day. I still don’t accept that I need to recognize physical limits. I get in trouble a lot at dialysis for over doing it.
I don’t post all my issues, pains, and problems here to get sympathy or attention. It is to show the reality of what late stage and end stage renal failure is like. That’s why I have a separate page. I post educational things and personal experiences here for those who are interested in learning about and following my story.

09/30/2023

It’s 4:45 am. I’ve been awake since about 3:15 am. Waiting for Urgent Care to open so I can get treatment for my latest problem. I can’t sleep through the pain of gout in my foot. I am on a daily med to help prevent flare ups, so I’m sure it’s milder than it could be. The pain came on suddenly last evening, and now I can’t walk without a cane. I just crawled to the bathroom to get some Tylenol.
What is gout? It is a build up of Uric acid crystals that have collected in a joint, causing swelling, pain, and redness. Very common to show up in the joint of the big toe first. The pain is such that even the weight of a bedsheet is intense. The first time I had it, I drove myself to the ER at 1:30 am (with my left foot) because I didn’t want to wake anyone up. I thought I had done something to break my foot, even though I couldn’t think of anything that would have done that. The ER doc knew immediately what it was, due to my kidney problems. It is a common issue with kidney disease.
I cannot take ibuprofen or any other NSAIDS, as those will further damage whatever function I have left. The treatment will be prednisone, which I hate because of the side effects.
So here I am, waiting for the urgent care to open at 8 am. No ER this time. I have had enough of that lately!

09/26/2023

So this hospital stay was 3 and 1/2 days. Happy to be going home! I totally expected tj go home last night after they did a dialysis treatment but my line was not running smoothly so they had to hook up some kind of med to it overnight to clear it. I’m pretty exhausted. You really don’t get a lot of rest in the hospital as they come in bother you every few hours, even throughout the night. I’m still having a lot of pain in my belly, but looking forward to getting back to normal, at least as far as normal goes with life in dialysis.😊

09/21/2023

Another day, another procedure. Today I am getting a catheter in my abdomen to do peritoneal dialysis. This way, I can do it at home, overnight. I’m hoping this works out. There is a chance that it won’t work out, as I have had 4 c- sections, hysterectomy, bladder surgery, and o***y removal. If there are adhesions from scar tissue blocking where the catheter needs to go, then they can’t do it. So I am praying that this works out! The first surgeon I went to didn’t want to do it so she referred me to the surgeon who is doing the procedure today. He has been doing this for 23 years, so I am optimistic.

Photos from I never thought I would need a new kidney's post 09/18/2023

So why should a person consider donating a kidney as a live donor?
So many reasons!
1- the waiting list for a patient to receive a kidney transplant from a deceased donor is years long, depending on blood type and amount of antibodies the patient has.
2- the success rate for a kidney transplant from a live donor is higher than from a deceased donor.
3- a kidney received from a live donor lasts longer than from a deceased donor. *** a transplant from a living donor lasts 15-20 years. An transplant from a deceased donor lasts 10-15 years.

09/02/2023

I’m free! Got out of the hospital yesterday! Feels so great! Enjoying the day with my Katie Lady at one of my “spots”❤️. Finally going back to Virginia tomorrow . With Katie Dalling

08/29/2023

Well, it’s been almost a week and I’m still here in the hospital. The nurses and doctors here have been outstanding. My family and friends here have been super helpful and supportive. I feel almost back to normal, after being so sick. It was quite scary for a while. I’ve been treated with iv antibiotics every day and A LOT of meds. They removed my original catheter as it was the infection source. Yesterday, they put in a new one and then did dialysis. It went well. I hope I can get discharged tomorrow. The doctors just need to figure out my outpatient plan. I will still need outpatient treatment for a couple weeks, which will keep me here in Oregon for an undetermined amount of time
This has definitely thrown a wrench into my life and my family’s. When I need help, then Dennis needs help too, and it is super hard on everyone. We get through it; we always do. I am so thankful for all the love, the warm and positive thoughts and messages, and the prayers.❤️

Photos from I never thought I would need a new kidney's post 08/25/2023

Well, it happened. Sepsis from my chest catheter. I got sick pretty suddenly. I knew i didn’t feel at the beginning of yesterday, and I had been getting chills since the morning, but I just thought it was normal “foggy” feeling from ckd and I was cold. Anyway, progresses during th day. I was visiting my niece and her baby with my mom, sister, and Katie. My shivering was out of control, my breathing was difficult, and my temp was rising. I told everyone that I messed to go home and go to bed. My sister was my driver, and she could tell this was bad as I was getting really bad in n the car. Katie told her to take me in and Jane knew I needed to be at the hospital. If I would have just gone to bed, I would not have woken up! She took me to Milwaukie Province. They tried to stabilize me but has to transfer me to Portland Providence because the first hospital didn’t have the resources to treat me. So I got my first ride in the back of an ambulance. By this afternoon, no treatments were working to stop the infection. They had to remove the catheter so hopefully with the source out, I can start getting better. My temp still goes up and down. They are still pretty concerned as body is fighting, but not as well as hoped. Dr told me today this is a life threatening condition, so that’s pretty scary. My vitals are still pretty wonky and I am absolutely exhausted.

08/22/2023

Did you know that even if a donor and recipient do not match, the donor can still donate for that recipient?
Approximately 1/3 or donor/ recipient pairs are actually not compatible with each other, but a willing abs able donor can still donate for the intended recipient. A paired exchange, or kidney swap, is when a donor passes all the required health tests to donate their organ, but their blood and tissue type is not compatible with their intended recipient but they do match a different recipient who has a donor that matches with the first recipient. They two recipient/ donor pairs exchange, or swap kidneys! Pretty cool!

Please like this page and share!

For more info, go to - https://www.uofmhealth.org/conditions-treatments/transplant/paired-kidney-exchange

Playdough Surgery - Kidney Transplant 08/22/2023

Did you know that with a kidney transplant the recipient keeps their two failed kidneys? They end up with three kidneys! The surgeon just plugs in the new kidney to the native “connections” and it starts working (hopefully)!

Playdough Surgery - Kidney Transplant Playdough Surgery 🔪 - Kidney transplant.We just watched Dr. Dinee Simpson’s kidney transplant surgery on - 🙌🏻🙌🏻🙌🏻 this amazing Black surgeon ...

Photos from I never thought I would need a new kidney's post 08/21/2023

What are some causes and risk factors for chronic kidney disease? Notice that some of these are preventable and some are simply genetic. The bottom line is TRY TO STAY AS HEALTHY AS YOU CAN, especially as you age. Stay away from smoking, poor diet, try to keep your cholesterol down, keep your heart healthy, and avoid type 2 diabetes. Diabetes, high blood pressure, and high cholesterol all contribute to CKD, and CKD causes diabetes, high blood pressure, and high cholesterol. All of these go hand in hand. Having co- morbidities with ESRD could eliminate a person’s chance for transplant.

Please let me know if you have any questions.

Photos from I never thought I would need a new kidney's post 08/21/2023

What are some signs and symptoms of kidney disease? It is hard to suspect kidney disease when the early stage symptoms are very similar to many other health issues.

Please let me know if you have any questions.

Photos from I never thought I would need a new kidney's post 08/21/2023

Here are some graphics explaining the stages of chronic kidney disease. There are 5, (really 6), stages of ckd. The numbers represent Glomerular Filtration Rate (gfr), or estimated percent of kidney function: 1- > 90 (still normal), 2- 89 to 60, 3a- 59 to 45, 3b- 44 to 30, 4- 29- 16, 5- 15 to 0 (end stage). This test is usually part of a standard blood test when you get an annual physical exam. You should be able to find your GFR result with the blood test result. Most doctors don’t bring it to a patient’s attention until a patient is in stage 3, so do start looking for this number for yourself.

Please let me know if you have any questions.

Living Kidney Donor | Inova 08/21/2023

For info on becoming a living kidney donor, go to

Living Kidney Donor | Inova Inova Kidney and Pancreas Transplant Center wants you to be fully educated on the details of living kidney donation.

Living Kidney Donor | Inova 08/21/2023

I was diagnosed with chronic kidney disease (ckd) in 2015. I had fallen on an ice patch in a parking lot and passed out for a few moments. I ended up going to the ER and getting a CT scan of my head. I Obviously had a concussion, but they told me I needed to see a doctor as I had a large thyroid goiter. I had avoided going to doctors since I gave birth to Emily in 2006, so who knows how long my thyroid had not been working. That turned out to be the least of my worries! My Doctor ran many tests because my renal function was at only 43%. We went through weeks of eliminating possible causes of this ckd. When I went to a nephrologist ( kidney Dr), they drew more vials of blood than I had ever seen! He had me get a kidney biopsy, which is very invasive as far as biopsies go. The results showed that my ckd is caused by focal segmental glomerulosclerosis ( fsgs- I probably didn’t spell that right). Fsgs is a kidney disorder that basically turns the glomeruli (filters) in your kidneys to scar tissue. It is rare and progressive. Mine is primary, and just a weird genetic anomaly. No one in my immediate family has kidney problems. This was daunting news.
At first, it wasn’t so bad. I was hopeful that I could maintain as much function as possible for as long as possible, as long as I tried to stay healthy otherwise. Over the years, however, there has been a slow and steady decline in kidney function, with an increase in symptoms. I guess it was about a year ago that I got to stage five, which is end stage renal failure (ESRD) and my nephrologist told me that sooner or later I would need dialysis or transplant. Even though I had seen it coming, that was tough to hear and face.
So she referred me for transplant and dialysis. Neither one is a quick and easy process. You can see how dialysis is going in my photo album. Getting things rolling at the transplant center is also slow going. The initial intake takes a few months. Then they start testing. The first blood draw for these tests was 20 vials! I am used to blood tests, but they usually only took 3 vials at every blood test. I also went through meeting the surgeon so they can see if you are a candidate for transplant surgery, cardiologist, chest x ray to examine your heart area, abdominal x ray to check out the kidney and abdominal area to make sure that area is conducive to transplant, nuclear stress test, then MRI of abdominal area, along with the normal health exams for gender and age- mammograms and Pap smear for females, and colonoscopy for over 45.
Fortunately, i passed all the tests and they determined me otherwise healthy, besides the ESRD, so I could be approved to be on the transplant list to wait for a deceased kidney donor! That is a huge hurdle for ckd patients who are at end stage and need transplant. Many do not qualify and have to live with dialysis for the rest of their lives.

Of course, the story is much longer and more complicated than this- and this is just the beginning of a whole new journey! I look at dialysis as temporary until I can be matched with a live kidney donor. It is hard not knowing how long the wait will be. The wait for a deceased donor would be 6-8 years! My family and I sure hope and pray to find a living (and loving) donor before then!

For info on becoming a living kidney donor, go to

Living Kidney Donor | Inova Inova Kidney and Pancreas Transplant Center wants you to be fully educated on the details of living kidney donation.

Photos from I never thought I would need a new kidney's post 08/21/2023

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