Searching 4 the Perfect Pair, of Kidneys

11/10/2023

The fourth surgeon who is very familiar with pkd was very unimpressed by my kidneys. He isn’t convinced they are what’s causing the constant pain/nausea/vomiting because as he said, “they really aren’t THAT big.” He wants an MRI done and wants to see me back, in February. I told the lady who was trying to schedule me, “I’ll be dead by then,” to which she laughed. I guess that’s to be expected by a very unexpected response.
I woke up today at 5am in sheer terror feeling like my soul wanted to leave my body. I spent the next 15 mins puking whatever little liquid I had in me. I was convinced this was it I was going to the ER. A lot of this has been a mental thing for me. This whole disease process has made me mental.

10/31/2023

I post here from time to time to keep record of what’s going on, which hasn’t been much good. Waiting until Nov 9th to see the 3rd surgeon and beg him to help me. My kidneys are so large. I’m tired of the constant pain and vomiting. People in the PKD groups I am in say it’s night and day once you get your kidneys out. Many have said it’s like getting a second chance at life. I wonder if I will get that? The fact that my father had this very surgery back in 2014 and did not make it through weighs EXTREMELY HEAVILY on my mind each and every day, several times a day. I’ve been Rx alprazolam to help calm this chaotic mind. I’m not sure anything else can help me at this point except surgery. I’ve sadly finally come to that point and I don’t know what will happen in the future. I’m literally trying to make It day by day.

08/24/2023

MRA of the brain scheduled today to check for aneurysms because I’ve been having so many headaches lately. It’s been years since I’ve been checked. Hopefully the damn insurance won’t give me issues.

03/17/2023

First time flying since being on dialysis and it’s been semi stressful. TSA gave us a hard time about carrying on the machine. They wanted it checked it but if they break it they won’t pay for it. They stuck me in a wheelchair even though I’m more than capable of walking that way it ensures I have room to put my machine. It’s embarrassing!! VIP treatment is nice but not like this. 😣

11/04/2022

I wonder if I’ll ever get a kidney and be free from these tubes.

10/22/2022

Tonight I am grateful for my husband of almost 13 years and my son. My husband has gone above and beyond in learning my treatments and setting up my machine each night and disconnecting and recording all the information needed each morning. My son has been so strong through this all. He has gone through seeing me deteriorate at a younger age than I saw my dad. I am grateful for them. I am Grateful for my mother who has had to live this nightmare over again after losing my dad to this disease. I can’t imagine how difficult this all must be for her. I may not have it all but my heart is full with those I have in my life. 

10/18/2022

It’s been a long road for sure. After battling a site infection, learning how to do manuel exchanges/ the new machine, I’d say things are finally starting to settle down. It’s been an adjustment to this new lifestyle but I’m starting to feel better. I’ve lost over 5lbs of water weight and my skin has cleared up. I’ve had several injections of iron and one shot of Epoetin. So hopefully all will be set before I start my residency program. Future is looking pretty ok as of right now.

10/10/2022

10/07/2022

Today is the first day I feel absolutely fkin disgusting. I saw my exit site now that they removed the stitch that was there and it’s ugly. Thankfully I was never one to wear bikinis because I can only imagine how much more sad/upset/digested/depressed I’d be looking at all the scars and wounds on my stomach. I am no stranger to scars believe me but this really just upsets me mentally. I don’t feel like a person with this thing hanging out my stomach.

10/05/2022

Had my first “exchange” today which was basically getting my peritoneal cavity stretched out and use to having the fluid inside. It felt uncomfortable at first and I started cramping when they were draining out the fluid. The discoloration In the bag are the toxins that got pulled out which is shocking to me because it was literally a quick fill and drain.

10/01/2022

I really thought having a catheter hanging out of my stomach would give me body image issues. I was prepared for that to possibly happen. Instead I am not having any issue seeing it. In fact I feel sort of proud in the sense that I took a step to prolong and improve the quality of my life. It’s still extremely early on in the whole process but mentally I am dealing with it well. Oh yeah also happy birthday to me 🙂 I live to see another year.

09/29/2022

You wouldn’t believe my excitement when the surgeon asked if I wanted pictures of my insides. I was hoping for more graphic ones but these are nice too. In them you can see the perforated peritoneal catheter that was inserted into my abdomen. The little holes will allow the dialysate (liquid) to fill my abdomen and draw out the toxins from my body via osmosis (peritonum acts like a filter) that my poor little broken kidneys no longer can. Science is absolutely amazing.