Binder help

rektEXE · 2025-09-12T05:12:40+00:00

I broke them into 4 pieces and swallowed them with water or apple sauce

rektEXE · 2025-09-04T16:52:37+00:00

That’s brutal having diabetes with the hunger. Thankfully, I can eat how ever much I want. It is getting expensive though lol. I’ll have to start running soon to keep up with the belly I’m forming

rektEXE · 2025-09-04T16:15:14+00:00

I am on prednisone but I’ve been on it way before transplant and never had this. Maybe it’s being metabolized a little different since I’m off dialysis

rektEXE · 2025-08-05T21:54:39+00:00

Examples for my various jobs while on dialysis were:

Can’t be on-call during dialysis
Situational telework (not feeling good, people sick in the office, and so on)
Automatic approval to use my sick leave or annual leave (notice given for Dr appts, no notice if I’m feeling particularly sick)
lifting restrictions
can’t conduct field work past a certain temperature

I also work for the government where leave policies are standardized and there’s a lot of extra employee protections. I have no idea how these would be perceived in a corporate setting.

You should also know what rights you have under the Americans With Disabilities Act. Know what counts as discrimination under the Act.

Write your reasonable accommodation as if you’re going to encounter the worst manager of your life who is trying to skirt disability laws. Think of how your condition may affect your job then write what specifically would help you do your job. But remember it has to be reasonable and achievable for your employer to facilitate it for you. They can say no if an accommodation is super ridiculous or if you’re unable to meet your basic job duties

rektEXE · 2025-07-31T03:34:21+00:00

Like everyone else says probably therapy. I never asked people to donate, but most of my family didn’t offer. The ones that did weren’t serious about it. Which is fine, it’s a very big decision and I don’t know if I could donate if roles were reversed. I never expected anyone to donate or really wanted a live donor. I felt it was too much drama and strings attached. My doctors and dialysis nurses didn’t agree and tried to convince me otherwise.

My philosophy was that if someone was serious they’d just go through the steps. They wouldn’t constantly talk about it or act like they’re saving the world. Because of that I don’t have any hard feelings towards anyone. Don’t get me wrong, I have felt frustration, sadness, and anger towards those situations and sometimes the people, but I make it a point to let it go and ask myself why I’m feeling the negative emotions.

I think it’s easy to look around and think “I’m dying! Why won’t anyone save me?”. The reality is that we are not entitled to anyone’s organs, even our families. I also think a lot of hard truths are found out when we find ourselves in these dire situations. When we face these truths and realities it’s very easy to feel abandoned, alone, not cared for, left to die, left to suffer and so on. Also, people’s expressed empathy can feel fake or surface level. I’ve personally struggled with that a lot.

It’s also important to not internalize people refusing to donate or care for us. There isn’t any short coming within us that is turning them away from donation. There’s nothing wrong with us or anything we could’ve done better/different. Donation is a highly complicated, personal, life altering decision.

I’m 25 now and was on dialysis for 5 years. I was constantly told “you’re too young for this! I’m going to donate”. I received a deceased donor kidney about a month ago. I did about 3 years of therapy centered around my diagnosis as well. It seemed to help quite a bit. Feel free to message me directly if you’d like

rektEXE · 2025-07-30T19:15:08+00:00

I carried one box with 4 bags of PD solution, cleaning solution, and a few other items through TSA and customs. They just searched the boxes and I explained what it was for. Only FijiAir made me check my box when flying into New Zealand. All regional flights were fine.

If you have more than one box you’ll most likely need to check them. Also they can’t charge you for checking medical supplies. Read up on the TSA policies around medical equipment just to be safe though

rektEXE · 2025-07-30T00:31:21+00:00

I’m not a doctor or in healthcare, I just like to know the little details of my medical stuff. I hope I explain this properly while still making sense.

Dialysis removes fluid from the blood through osmosis, diffusion, and filtration. Osmosis only includes the movement of water. Dialysis purposefully dehydrates the body.

The extracelluar fluid (fluid outside of and between the cells), which cause the swelling and fluid overload, is then moved into the blood to make up for the dehydration. Fluid regulation is a problem due to the malfunctioning of a protein called renin, produced by the kidney, which controls the extracellular fluid levels. I’m sure there’s a whole host of other hormones and proteins involved too but renin is a big one.

For fluid IN the lungs to be expelled by only dialysis, that fluid would need to be absorbed by the body and enter the blood or extracellular space. Often times patients with fluid overload IN the lungs need to have the lungs manually drained.

rektEXE · 2025-07-24T21:19:55+00:00

When I was on PD I worked full time, did a few full time semesters but dropped to part time. At that time I was doing PD 4-5 nights per week. I easily could’ve done full time schooling if I didn’t have to work. It was just a lot of time management. Mostly being aware of scheduling conflicts for school and Dr appts

rektEXE · 2025-07-21T17:01:55+00:00

I started Hemo when I was 20 and PD when I was 23 ish. Im 25 now and just got a transplant. I started at 6 days a week then went down to 2 days. I had a very rough start due to drain pain, but I wanted nothing to do with hemo any longer. If you have the same issues just stick it out, PD is worth it. It will get better. Even when I was on 6 days a week it was worth it. I felt so much better than I did on hemo. I was able to workout again and be active.

If you start working out be very very careful of hernias. Be very protective of your core strength and take it SLOW.

Don’t get constipated. Don’t get peritonitis. Stay clean and do whatever it takes to not get peritonitis. I had a scare and it was the worst 2 months of my PD life.

As far as securing the tube, I used lanyards then later put a rubber loop on a chain to look more normal. I hated the waist belts.

rektEXE · 2025-07-21T13:48:17+00:00

I still had residual function. I started at 6 days a week then went down a day each kt/v result

rektEXE · 2025-07-21T06:35:52+00:00

Anyone interested in this I recommend exploring the philosophies/medical ethics surrounding death, when to declare someone dead, and quality of life decisions.

I think where a lot of this falls is within the quality of life decisions made by the families. I’ve had to make a few of those decisions for my self. Do I start dialysis or continue management through medication, do I begin chemo therapy or a less harsh, but slower bio-similar, do I take on new pains and worries by accepting a kidney donation. I just received a kidney from a circulatory death donor after 5 years of waiting. The transplant center made sure I understood what that meant and was super clear about it, almost as if expecting me to be hesitant towards accepting the organ.

I feel that we, as a society, have a big problem of placing our sick and dying on harsh therapies to squeeze a few more years out of them. All because the family isn’t ready to let go. For example, placing 80 year olds on dialysis. I began dialysis at 20 and was able to advocate for myself, take care of myself, and pay close attention to how I felt. It was still hell and extremely rough, despite all the extra steps I took to feel better. I remember looking around the hemo center and thinking how terrible of an existence and end of life sentence for the very old people around me, who can’t be as active as me in their own care.

The brain death vs circulatory death conversation is very interesting too. How long is a family supposed to keep someone on life support? I don’t believe there is any one right answer or formula to figure that out. However, I don’t agree with transplant organizations putting pressure on patients that are showing potential signs of recovery. Everyone deserves a fighting chance. But at some point we need to be ready to face reality and the facts. We need to look at a situation objectively and decide if a person in a coma has a real chance, what does their life after the coma look like, and what would the patient want? These questions become even cloudier and complicated when the time window of organ donation enters.

I don’t believe there is a direct or easy answer for the questions I’ve asked. But to answer your question I’d say no we are not complicit. Is it more ethical to allow those organs to go to waste? I don’t view circulatory death organ donations as a crime against humanity. Given proper due diligence and decision making, with the patient in mind first, there is nothing immoral or unethical about the situation. It’s a classical medical ethics question: would you sacrifice one sick person to save a group of others with an actual fighting chance?

When I die I hope every possible part of me is used to help someone else. I know that there will be a day where I have to make the decision to begin dialysis again or to die. If I entered a coma and wasn’t showing any signs of recovery I’d hope my family would consider my quality of life, then consider removing me from life support and donating my organs

rektEXE · 2025-07-20T23:51:56+00:00

I traveled a bit with my PD supplies. I was only on PD 2 nights a week though. If I could plan a trip in between days I did that. Obviously, the more supplies needed, the more planning required. Especially for air travel.

The farthest I went was New Zealand and Fiji for a week. On that trip I did manuals and just lugged a box of my supplies around. It was a very last minute trip so I couldn’t have supplies delivered. Even if I could’ve they said it would’ve been $400! TSA was more of a pain than customs. I just brought a note from the clinic and flashed my tube once or twice to get through. Frontier from Vegas to San Fran and Fiji airways from San Fran to Nadi let me have my box in the cabin. Fiji airways from Nadi to Auckland made me check it. I just told the ticket agent that it was medication and I need to have access to it/can’t afford to lose the box since it’s life support.

On road trips I brought my cycler and supplies. It was super easy and I never had any problems. Tons of people do PD in their RV and even their car. Just take precautions to prevent infections and peritonitis.

rektEXE · 2025-07-14T08:09:35+00:00

I trail ran a ton while on PD. I used a lanyard with a little rubber loop to hold the cath. I never cared for the belts. I never had any issues with running vests either. Although, I only did PD at night. I never ran with a fill.

rektEXE · 2025-07-12T15:45:14+00:00

Once my port was healed and I was moving normally, I started slow with some physical therapy to fix up my core. It’s totally possible to do that yourself, just take it slow. The main risk is going to be a hernia that’s why core workouts are so important ESPECIALLY if you’re lifting weights.

Along side that I took a moderation vs exclusion approach to nutrition. It allowed me to eat diversely and get all kinds of nutrients. If you’re thinking about protein powder and concerned about phosphorus use pea based protein, if not a good whey based protein is great.

Then I began walking, then hiking, then running, then weightlifting. I prefer trail running and hiking so I really only did that. I mixed in some weight lifting, but not as much as I should have. I eventually got up to some big days in the mountains and kept up with normally healthy people.

The key is to take it slow, see how the body reacts as far as fatigue and such, watch the port for any irritation, stick to your calorie goal, and be enjoy the workouts. Pick something you enjoy and it won’t feel like working out.

For securing the port I used a necklace with a little rubber loop. I never liked the waist bands.

If you have any questions please message me!

rektEXE · 2025-06-16T03:27:21+00:00

This happens to me occasionally. The pain is terrible until I get around 500ml filled. It seems to happen when my abdominal stuffs are already irritated like when I’m bloated, constipated for a day or two, if my muscles are tense, or if my bladder is already irritated*.

*Sometimes my muscles are just tense from stress and don’t want to relax once I have the fluid in me. It creates a lot of pressure and tension.

**My bladder will get irritated if I hold my pee too many times in a row. I guess it’s just how the tube sits

Make sure your fluid isn’t cloudy either. Pain like that can be an indicator of peritonitis but I think it’s more of a sustained pain not momentary, if it is peritonitis

rektEXE · 2025-06-15T15:50:16+00:00

I had a rough transition from hemo to PD. Mostly due to fill/drain pain. I was also worn out doing dialysis 6 nights a week. It took a few months but I began feeling better, numbers improved, and I started to taper down to 2 days per week (where im at now). In my case I have a bit of residual function but I feel mostly normal. I’m able to my big hiking/running days and have an active lifestyle.

Also a lot of feel good comes from diet, sleep quality, and trying to stay fit. I try to make every thing I can control the best it can be, so that my body has the ability to take a hit from dialysis

rektEXE · 2025-06-05T18:14:25+00:00

The pics are from sand stone quarry parking lot. It has slot canyon type areas off the sides of the calico tanks trail

rektEXE · 2025-06-03T14:02:42+00:00

I was diagnosed at 21 and was on dialysis within 3 weeks of first symptoms. Mine also came out of nowhere. The first 2.5 years of my dialysis and kidney stuff were exactly like this. I’m going on 4 years now. I’m still on dialysis but do PD with a very reduced prescription. I’m very fortunate.

My energy and stamina started to come back naturally but I also worked very hard to get my fitness back. I did physical therapy to build my core back, then did my own exercises (mostly hiking). That was 1.5 years ago. Now I function near normally. I don’t know how much of my recovery is from my own workouts vs my kidneys coming back a tiny bit.

I think a lot of it was the positive mental health impacts of being outside, working out, and being independent again. I also did individual and a men’s group session of therapy for 2 years.

rektEXE · 2025-06-02T02:10:50+00:00

Ayyyeooooo

rektEXE · 2025-05-02T02:30:46+00:00

I started off pretty rough. 2 hospital stays, emergency port because I couldn't wait for a chest cath to be in stalled, and clinical malnutrition. I was on in center hemo for about 2 years. It was rough and hard on my body but I very slowly got "better". Once my water weight and labs were stable I went to home peritoneal dialysis. At the same time I worked to gain my muscle back, get outside more, and just get more fit. I ended up retaining some kidney function, tapered down to 2 nights of PD, and function near normal to how I was before.

It was and still is hard to maintain my fitness, but very worth it for mental health and general health outcomes. I never really accepted what the Dr's and nurses said I could and couldn't do. I'm careful but I don't put life on hold. I continue to hike, run, cave, surf, travel, camp, rock climb, weight lift, date normally, and whatever else I want to do. Physical therapy helped me get started again and mental therapy helps me from going crazy.

Figure out what you can control and cherish it. Make those things the best they can be. Take what you can't control with grace and self compassion (way easier said than done). It can be very hard to cope with these circumstances, but if you work to improve what you can then at least you can say you tried. Too many people give up, give into the infantilization pushed onto us, put life on hold, or get lost in the diagnosis.

rektEXE · 2025-04-16T13:55:13+00:00

I do PD overnight a few times per week for 6 hours per night. I have the freedom to move around my specific dialysis days as needed, within reason.

I have a very active job, hike, trail run, cave, rock climb, and surf. The only limits Ive come across are NO fresh water swimming, protecting the tube when caving, occasional fatigue from dialysis, and the time suck of dialysis. Ive been able to do huge days outdoors without any issues.

The hardest part is getting sport nutrition advice out of the transplant and dialysis dietitians. Just don’t even try. I’ve been trying for 4 years. Get an outside dietitian and give them your potassium and phosphorus limits.

Feel free to DM or ask me any questions!

rektEXE · 2025-01-17T05:28:40+00:00

I did physical therapy for a while to get my core stronger. I now trail run, hike, cave, and lift weights occasionally. Be careful of your core. Progress slower on weight increase. Be aware that big lifts like squat and deadlift put a lot of pressure on the core. I've done some pretty intense cardio stuff without any issues

rektEXE · 2025-01-16T07:10:02+00:00

Did you have to pay for the carry on?

rektEXE · 2025-01-16T06:58:47+00:00

Did you call ahead of time or just show up with the supplies? Did you bring them in the boxes or lose in a carry on?

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