Dialysis

Hi,

I'm working on a story where someone is in need of a kidney transplant. I want to be as respectful and accurate as possible about general concerns (I won't be getting into any real details).

If anyone is familiar with kidney donations or dialysis and wouldn't mind lending their expertise, could you please lmk?

Thanks!

The process is very involved and means a lot of changes for those on dialysis. Sadly despite many hours a week on those machines a person isn't remotely close to what a real kidney can do. There is a lot of pain and suffering and eventually death, but it helps keep people going on unit a kidney is available. It is a rough treatment, but otherwise you're waiting to die.



Those who are lucky to receive a transplant are on many drugs, but have a new chance at life. The first donor was a brother giving to his twin. The closest match the doctor could think of, and at the time was only assuming. It happened in NY State....The brother who received the transplant passed away (his brother lived for many years after), but he burned thorough every day. Friends and neighbors said he was always happy for his remaining 8 years of life. He had married his nurse, fathered children, and had a full life. He was always grateful to his brother.

While not on dialysis or in need of a transplant yet, I'm Stage 4 Chronic Kidney Disease (which is one stage before Stage 5 or ESRD, end stage renal disease). The whole process of facing the fact that your kidneys are shutting down on you is scary as hell.

Treatment for dialysis and an eventual transplant is different for everybody. I know a lady in my church who is on dialysis and it completely wipes her out. Dialysis takes a huge chunk out of your week. You have two options for dialysis: hemo dialysis which is creating a circuit (fistula) in one of your limbs to run the machine that filters out the toxins from the blood, and peritoneal dialysis which where they create a a port into your abdomen to fill the peritoneum (the membrane that covers the abdominal muscles and internal organs) with fluid to filter out toxins that way. Hemo dialysis usually takes a couple to several hours, and you can do it overnight at a center or at home. Hemo dialysis is also more restrictive of what you can and cannot eat or drink. Peritoneal dialysis offers you a little more freedom in diet and your lifestyle. With it you can be hooked up to a bag of fluids that filters through the peritoneum while you're doing other stuff.

Some people cannot do hemo dialysis as they have really bad veins (like me, I'm a very hard stick), so the only option is peritoneal dialysis.

As far as transplants go, you have to reach a certain decreased percentage of kidney function before they even consider putting you on the transplant list. A lot of factors go into consideration for a transplant: BMI, age, smoker/non smoker, drinking, drugs, etc. The younger you are, the higher priority you get. A transplant does have a shelf life. Depending on the state of the transplant you get, you can usually get an extended 10-20 years of life. Cadaver transplants are usually considered favorable depending on your situation, that way if you need another transplant (which is entirely possible), you will still have a living donor. As far as donors go, they also must meet certain requirements: their general health condition, their age (they do not take kidneys from people past 65), blood type, and the five point genetic matching testing. Getting a transplant is not impossible, but there is a very long wait. Another way of getting a transplant sooner is what they call the kidney doner match system. If you have someone who is willing to donate a kidney, but is not an exact match, they can be paired through a chain of people's kidneys who are a match for someone else. The chain involves precise matching of willing doners to those who are in need of a transplant. The chain is very delicate and if broken for whatever reason (someone is pregnant, their immune system has recently been compromised, etc.), no one is able to get a transplant.

It is possible for people to live just on dialysis and still lead a fulfilling life. A lot of people continue to work, go to school, socialize, etc. despite being on dialysis. There are a good number of people who live on dialysis to the very end. My maternal grandfather lived for a number of years on dialysis.

Causes of renal failure are hugely varied. The usual culprit is diabetes and high blood pressure. Though there can be some total fluke accidents where medication is involved (like my case). I was one lithium as one of my main mood stabilizers for bipolar and my renal failure was caused by lithium toxicity. People whose renal failure was caused do natural causes (i.e. diabetes) can suffer faster and more acute kidney failure because it is the body that is breaking down due to actual disease. In my case, where it was a medication that damaged the kidneys, the damage is not continuing. So therefore, any further damage will be more gradual with age (leaving a person more stable at their current level of function). I've personally been stable at where I'm at for about two years now. I am monitored closely by a nephrologist (a kidney specialist). My kidney function has actually improved within the last six months due to having bariatric surgery to prepare for an eventual transplant(s) should I need them. My doctor is very hopeful that with my continued weight loss, my kidney function will continue to improve, and I won't even need a transplant. Given my condition, I will most likely remain stable for a good number of years.

A lot of things change when you go on dialysis or receive a transplant. One of the most beneficial changes is that if you go dialysis or receive a transplant, you automatically qualify for SSI/disability and Medicare. Kidney failure is considered by the national government to be a chronic illness that there is likely no cure for. If you already have insurance, your current insurance becomes your secondary, and Medicare becomes your primary. The other big changes are what medications you are and are not allowed to have and your diet/fluid intake. Once you are diagnosed with impaired kidney function (I'm not sure if it matters what stage it's at), NSAIDs or anti-inflammatory medications are big no-nos. You also have to confer with your doctor on what medications have the green light and what are off limits. This is especially difficult if you have a mental illness (like I do). I had to go into a monitored setting at the local hospital before they would even consider putting me on a main mood stabilizer. You also have to watch out for different otc drugs. A personal experience of mine was having a UTI. Because of my impaired kidney function, I could not use the otc Azo pills they sell at the drug store for temporary relief. Also if you get sick, you have to make sure the doctor knows about your impaired kidney function because some antibiotics and steroids can cause further damage. As far as diet goes, once you are on dialysis, you have to eat a fairly strict low/no sodium and low potassium and phosphorus diet. So extremely salty foods are now forbidden as is salt to season and most condiments (unless they are specifically low sodium). Fluid intake can also be restricted because you do not want to flood your kidneys.
An uncommon but possible side effect of kidney failure is something called diabetes insipidus. You should not confuse this with type 1 or 2 diabetes which its technical name is diabetes mellitus. Diabetes insipidus has nothing to do with blood sugar. It causes your system to process liquids faster, leading to increased urination and increased thirst. People with diabetes insipidus are ALWAYS thirsty. (I have this condition myself.) And they also have to urinate much more frequently than the average person.

So I know that is a LOT of info I just gave you, but I hope it helps.

13 years on dialysis

I have been on dialysis for 13 years now any questions I can probably answer

this may be overly harsh, but my son had a kidney transplant 3 years ago. it is a really difficult process and extremely hard on everyone involved - donor, recepient, family, etc.

if this is a lit story, i don't find the idea of trading sex for a kidney to be at all appropriate.

if it's not lit, my apologies.

I understand that any and all health issues are very delicate and fragile topics, but don't be so quick to judge.

crashD said:

this may be overly harsh, but my son had a kidney transplant 3 years ago. it is a really difficult process and extremely hard on everyone involved - donor, recepient, family, etc.

if this is a lit story, i don't find the idea of trading sex for a kidney to be at all appropriate.

if it's not lit, my apologies.

Click to expand...

That is most emphatically NOT even close to being the situation.

Bebop3 said:

That is most emphatically NOT even close to being the situation.

Click to expand...

as i said, if it's not, my apologies.

and i'm glad to hear that.

The story involves a man who finds out that he has a half sister who needs a kidney. He eventually falls in love with her aunt (maternal and they share a father).

There is absolutely no bargaining or anything like that for a donation. At all.

crashD said:

as i said, if it's not, my apologies.

and i'm glad to hear that.

Click to expand...

No problems. I hope your son is doing well.

Dialysis seems to be very taxing for the patients. The clinics are very overworked, and scheduling is tight. This is not a drop in procedure you have to go during your time slot which might very well be 4 in the morning or might mean that you are off the machine lighted at night.

There seems to be a weary camaraderie among the patients who typically spend I would guess about 4 hours together more or less. They go on in sequence and come off in that order, usually. but for reasons beyond my ken they sometimes are done early or longer and I'm not sure what determines that.

It's different for different patients but some report that it is physically painful. A lot of them suffer from neuropathy there's a lot of swelling and water retention amongst these patients. They often have difficulty walking.

After the procedure they are usually seem spent. I've never seen one energetic afterwards. They are often cold as well.

In addition to the dialysis itself they often have to go to vein specialist to to get repairs done.

I got a call from one a couple of days ago. It was not his dialysis day but he had been transported to a doctor that did not have him on the schedule so he needed to go ride back home. Transportation somehow messed that up and eventually he couldn't even get through to transportation so he started aimlessly walking in the general direction of home. Problem is, home for him was 14 miles away. He made it about 2 miles. His feet were killing him. he could simply Drive himself he owns a truck however his driver's license is suspended for medical reasons because at one time he was suffering from hep C and some complications they're made driving not safe for him. He's currently hep c free, but the docs won't release him to drive. I made a fair number of dialysis patients because I work with a lot of indigent people and being on dialysis makes it almost impossible to work. Because I travel long distances through their area and people know that they will call me from time to time for a ride knowing that I'm probably headed the direction they need to go. I've taken the same guy to the local food bank as well. Although grateful for the assistance I suspect that a lot of the food given out by the food bank is not particularly ideal diet wise for a dialysis patient who have to watch sodium intake. where are my depth here, but generally speaking modern food is filled with all kinds of artificial chemicals. The kidney is the body's filter and I'm sure that it is instrumental in allowing our bodies to process that horrible fuel.

I don't generally see dialysis patients for very long after they have come off the machines and there seems to be a long recuperative. So I suspect that in addition of the four hours that there's probably about an equal amount of time before they feel sort of normal.

not knowing where you're going with this but dialysis clinics are not particularly conducive to romance. They're brightly-lit have a vaguely unpleasant Hospital type odor. Patients have that clinging to them. Mini show up with blankets and pillows and jackets because the process chills them. sweats are kind of common. There's one trim elderly lady that looks like a three quarter size version of Jessica Tandy who always shows up made up, well-dressed, wearing modest jewelry, but that is not the norm.

There's a couple that I've gotten to know and like quite a bit. He played professional baseball at some point and she is from the Philippines I think. He is extremely devoted. He goes and sits in the lobby for 4 hours while she's on the machines, so naturally, he goes with her there and back. I've only recently noticed that his vision isn't very good at all. He seems younger than he probably is I now think he's probably in his late 70s but I'm not sure.

I had no particular outline in mind as I started to draft this. It's just free association. So it's a little muddled I thought some nuggets in there might be useful to you.