I never thought I would need a new kidney

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!

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.

Got my chest catheter out today! Woohoo! 👏😃

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!

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.

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

‘It was just like a miracle’: Saskatoon woman finds kidney donor | Globalnews.ca Since Debbie Onishenko's story came out in August, she's received calls from a bunch of people; some in the same predicament as her, and others, like Brent Kruger, looking to help.

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.

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!

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.😊

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.

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.