When Dialysis is Imminent

Last updated: Jan-27-2003

DISCLAIMER
I am a patient, not a doctor
This information is based upon my own experience
Any medical advice should be approved by your physician

http://gil1.home.pipeline.com/esrd

How soon?

Your options

Dialysis resembles the kidney very poorly in removing wastes and toxins from the body that are leftovers of the food we eat and our metabolism, but you can improve on it by diet and medications that keep the chemical and hormones balance in the body.
Dialysis also removes excess fluid. Again, you have to contribute your own effort not to drink too much.

There are a few modalities for handling kidney failure:

• Transplant is not a cure, just a treatment. It requires taking strong meds that suppress the immune system, and the kidney doesn't last forever. Transplants are generally better with a live donor, but most transplants use organs from cadavers.
  Transplant gives you more freedom but health-wise you just replace one kind of problems with another kind of problems.
• Hemodialysis (HD) is the most common treatment and requires connecting to a machine for a few hours (3-5) a few times a week (3). It can also be done at home, day or night, everyday.
  To remove waste and excess fluid from the blood, it should flow through the dialysis machine. The location where the blood is taken and returned to the patient is called Access. There are a few ways of doing that, see below.
  The main problems are sticking 2 needles every treatment and the odds that the access may clot.
• Peritoneal Dialysis (PD) is done through a catheter inserted in the belly and filled and emptied 4 or more times a day. This is done at home and requires a short training.
  There is also a machine that can be used during the night (cycler). The main problems are having a tube in your belly at all times and the risk of internal infection (peritonitis).

Which treatment is best for you?

There is no objective way to compare treatments.
The physical and technical aspects can be compared but no research can tell you how you are going to feel.
There are too many factors that won't let you make any generalization.
In addition to your own body reaction to the treatment, overall satisfaction also depends upon the medical staff you have to deal with and the support you get from your family.
Most patients need time to adjust to any kind of treatment. The first few months are usually the roughest and toughest.

Transplant

Transplant is never an immediate option. Even if you have a donor the testing may take months.
In Canada and Europe you may have to wait even longer.
If you are looking for a kidney among friends and family don't be mad at anyone who refuses.
Some people are scared to death just to talk about surgeries.

Both donor and recipient should be in good physical condition, no drug or alcohol abuse, non-smokers and not over-weight.

Regardless whether you consider transplant or not, better enroll for transplant as soon as possible.
If you are called you can always decline without any penalty, and if you change your mind in the future you'll have less time to wait.
And you probably wouldn't say no if a perfect match were offered to you...

For more information about transplants go to my Organ Donation page.

What can you expect after a transplant:

A successful transplant is the best treatment, but it has its on drawbacks.
Transplant doesn't last forever. It can last from a few months to a few years or even a few decades.
You'll have to take strong (and expensive) meds that suppress the immune system.
Many failures are the result of patients forgetting to take their medications.
Usually your diet is quite relieved compared to dialysis.
However, most patients should watch their salt, sugar, and fat consumption.
You shouldn't take any drug or herbs without the approval of your neph.
You should avoid extended exposure to the sun. No more beaches or golf...

Your new kidney is not as cooperative with your sleeping pattern as your own kidneys used to be.
You'll have to go to the bathroom during the night at the same rate as you go during the day.

The anti-rejection drugs tend to elevate cholesterol, triglyceride, and sugar. Some develop diabetes.
The drugs may also cause mood swings, altered sex drive, elevated blood pressure, swelling, poor or immense appetite and consequently loosing or gaining weight, loosing or growing hair, diarrhea or constipation, and the infamous moon-face.
But for most this is a small price, compared to the inconvenience, inefficiency, and other dialysis problems.

Dialysis

Usually patients compare Hemodialysis (HD) vs. Peritoneal Dialysis (PD) as doing dialysis in-center vs. at home.
This is not true anymore. Home dialysis can be either HD or PD.
Your neph or nurse does not always mention this fact when you go to your "Choices" meeting.

So first you have to ask yourself whether you, or your relative that you take care of, could do home dialysis at all.

Home dialysis gives you more freedom with your timing, the convenience of your own home, and it saves you the travel and waiting time. However, patients that don't work may prefer to socialize with other patients in the dialysis center.

In the US, Medicare covers the equipment, installation, and supplies for both HD and PD.
For home dialysis one needs available space for the machine and supplies. Supplies should be ordered in advance every month and could easily amount to hundreds of pounds. The machine should be set, bags of various sizes (30 lbs. is not unusual) should be carried from storage, and tubes should be connected to them, keeping everything sterile.
After the treatment the machine should be cleaned, the tubes disconnected, empty and used bags, as well as a lot of packing material, should be disposed of.
There may be problems during the treatment that should be analyzed and solved. There are trips to a clinic at least once a month but sometimes every week. Patients should be able to inject medications to themselves or they have to go to the clinic more often.

Home HD, while still not available everywhere in the US, is a fast growing trend. It is more popular in Canada.
It can be done the same as in center, 3 times a week, or better yet, every night (once payment is approved by Medicare). HD at night is called nocturnal hemodialysis and is considered the most thorough treatment.
There are almost no food and fluid restrictions, and fewer drugs are needed.
Some patients even consider it superior to transplant because they avoid the immunosuppression drugs.
To read more go to: Alan Barnes Nocturnal Dialysis Home Page

In-center HD requires the patient to come to the unit, which may be a long drive, regardless of weather condition. The staff does everything else. Doctor visits are done in the center, medications are given during the treatment and travel in and out is the only overhead.

Remember that in addition to all other considerations, the medical staff that you have to deal with can make the difference between feeling well and being miserable. So before you make any decision, visit the potential clinics where you can have HD, PD, or transplant, talk to the staff (and to patients if you can) and have a first hand impression.

This analysis is just the tip of the iceberg.
For more info go to:
http://www.kidneydirections.com/us/eng.htm
http://www.kidneyoptions.com/home.html

HD-PD Comparison

The important thing to remember is that both modalities do the job of cleansing the blood.
Patients live and function many years on both.
This comparison tells you what to consider and what to expect from your choice, not which one is better.

Remember that you may have to switch treatments after you start because your choice may not work well for you, or because of medical problems (clots or infections).

Here are a few points to compare. They relate to PD at home versus (the common) HD in-center.

Effectiveness

• HD. The dialysis is more potent. 3-5 hours every other day do the work of 24/7 PD.
  But for some it is too hard on the body, they feel exhausted and washed out.
  Waste, electrolytes, and fluid are accumulated in the body between treatments, and then removed during a relatively short period.
  The length of the treatment is calculated based on the blood work.
  Fluid removal is better than PD and controlled more accurately.
• PD. The dialysis is easier on the body, but may be inadequate for some.
  Electrolytes are kept at close to normal values.
  Controlling fluid is more art than science.
  The number of exchanges and/or the cycler program are based on the blood work.
  Big men and women should better consider HD, but there are exceptions.
  Also, if you have PKD, you should consider HD because your belly may already be full with your enlarged kidneys.

Troubles

• HD. Some people are needle weenie.
  I don't think that it is so bad but if you do then forget about HD.
  The access may clot without any warning. Sometimes it can be fixed, sometimes it should be re-done.
  Some patients must switch to PD because of frequent clots or because there are no more locations for access.
  Misplaced needle (infiltration) causes an ugly and mildly aching bruise.
  Some suffer from low blood pressure during and after the treatment.
  If you use a catheter it requires care, usually done by the dialysis staff, and you shouldn't shower it.
  If the catheter causes infection it must be replaced and you may need hospitalization.
• PD. The process should be kept absolutely clean. Infection causes peritonitis which requires hospitalization, it is life threatening, very painful, and may disrupt the peritoneum membrane for good.
  You may have problems with your catheter and may need to redo it.
  Some have pain during the drain.
  Calories must be watched or you may easily gain a pound a week.

Food and fluid restrictions

• HD patients are more restricted with potassium and fluid.
  Fluid consumption is usually limited to 1 liter (1 quart) a day. Less for petite person.
  Sugar is not limited if you are not diabetic.
• PD patients sometimes need potassium supplement.
  Fluid is less restricted but not much. The medium strength solution can remove about 1.5-2 liters of fluid a day, but the body absorbs sugar from the solution, about 150-250 gram a day. This is 600-1000 calories.
  Even if you are not diabetic, this amount of sugar may raise your triglyceride to a dangerous level.
  PDers need to eat a considerable amount of protein, and since protein goes with phosphorus they have relatively more difficulties with controlling their phosphorus.
  It is nice when you can eat as many steaks as you like, but your diet may require more than you like...

Time consuming

• HD. The treatment takes 3-5 hours 3 times a week. You have to be in the center at your pre-scheduled time.
  You have to add travel and waiting time.
  Nocturnal dialysis is done 6-8 hours at night, 6 days a week.
  During the treatment you can do some stuff, like reading, writing, watching TV, or even sleep.
  If you do in-center dialysis you see your doctor there.
  You get your injected medications and do blood work there.
  You have 4 free days every week that let you forget about dialysis (but not about your diet).
• PD. CAPD is done 4-6 times a day. It may take an hour for a novice and 20-30 minute after you become proficient. The timing is more flexible, but it keeps you busy every day, seven days a week.
  CCPD is done at night. Preparation of the cycler before and cleaning after take 30-40 minutes altogether.
  The cycler is designed to be operated by non-technical patients, but technical background may help.
  After a few months of dialysis, if your kidney function declines you may need an extra exchange during the day.
  Usually you have to visit the clinic once a month but sometimes it may be once a week.

Physical activity

• HD. There are some restrictions on using your shunt arm. Don't carry heavy weights.
  If you are a drummer PD is better for you.
• PD. You carry 2-3 kg in your belly, not so easy for many sports.
  Swimming is limited to really clean water and a protective cover over the access is needed.

Appearance

• HD. You have a shunt in your arm, usually in the lower arm. After a while it shows.
  I always wear long sleeves.
  You can have the shunt in the upper arm, but this is less desirable.
• PD. You have a catheter in your belly. Forget about bikini.
  With your 2-3 liter potbelly people may wonder whether you are pregnant even if you are a man.......
  Be prepared to buy new clothes, not too tight, one or two sizes larger, even before you gain one ounce of weight.

Travel

• HD. If you travel for one weekday or two days during the weekend you don't need any preparation.
  Just remember that following your diet outside home is tricky.
  If you travel for a longer time you have to find a dialysis center and arrange treatments in advance.
  Your social worker can help. You may have to take an HIV test.
  In the US Medicare pays for treatment in all states.
• PD. Travel is easier.
  If you go by car you can take everything you need with you. You can do your exchanges in the car.
  Your supplier can forward your PD bags to any location or country (unless we are at war with them).
  If you fly, carrying a cycler through security may take some time. You have to take it on-board with you.

Training

• HD. No training, unless you do home dialysis, for which you need about 2 months of training.
  Otherwise you go to a center and the staff does everything. Remember that not all staffers are created equal.
• PD. You receive a week or more of training. Then you have to do everything on your own.
  You have to understand the relationship between your eating and drinking and how the PD handles it.
  You have to inject your own medications (or travel to your clinic).

How to select a HD facility

Most people have a limited selection of dialysis units.
Distance is important since you are going to drive both ways 3 time a week.

If you can select, here are a few points to check (in no specific order):

• How do you get there? How long it takes?
• Are there close parking places? Do you need a pass?
• How clean is the place? Painted?
• Is it on the first floor? (Higher floor is a problem in case of fire).
• Are the chairs (recliners) comfortable for 3-4 hours? In good condition?
• Can you adjust the chair without calling for help?
• Do they use sheets on the chairs?
• Do they have enough pillows and blankets?
• Is the place over crowded?
• Does the staff welcome you or they are too busy to smile?
• Is there enough room in the waiting area?
• Is there room for visitors and are visitors allowed?
• Are drinking or eating allowed or banned? Would the staff serve anything?
  Do they have ice machine, vending machines?
• Are cell phones allowed? Laptops? Are there Internet connections for the patients?
  You'd be surprised to learn that every center has its own policy, even if they belong to the same company.
• Are there TV's for the patients to watch?
• How is the temperature? 72F is nice for working but not when you sit for 3-4 hours, usually under a vent...
• The nephrologist in charge - how many times a week/month is s/he there?
  Can you see the nephrologist on a short notice?
  Do they have other patients with same disease as yours?
• What is the staff/patient ratio? 3 patients per nurse/tech is acceptable.
• What is the experience of the staff (years)?
• Can you choose who is going to stick you?
• Do you have free and frequent access to a dietitian, social worker?

• Do they reuse dialyzers? With what agent do they rinse the dialyzers? (Non-toxic is preferred).
• Even if the nurses are the same everywhere, the head nurse gives the tone, so better talk to her.
• It is important to be treated respectfully. The staff should listen to you and answer your questions.

Time to get ready for dialysis

Hemodialysis

Once you decide upon HD, you need an access, where blood can be drawn and returned to you.
If your neph can forecast your D(ialysis)-day, access surgery should be performed a few months before that day.
For an emergency dialysis, a catheter is inserted in the right side of the neck-chest.
The catheter can be used immediately after insertion and can remain inserted for a few months.
However, you have to live with the catheter tubes dangling out of your neck, which is very inconvenient, and you may not wet the place.
Also the dialysis, in terms of cleansing the blood, is less effective.
BUT with a catheter you avoid the needles for a while...
The staff should change the dressing every dialysis and you have to avoid infections.

For a permanent access a shunt is needed.
Shunt is a general name for deflection or diverting fluids.
The shunt connects an artery and a vein, so higher blood flow in the vein dilates it and makes it possible to pump blood in and out for the dialysis.
A fistula is a direct connection, while a graft is a gortex (plastic) tube that does the same. Shunt surgery is done under local or full anesthesia.
Fistula is usually less painful after surgery, lasts longer, and shows less, but it requires a couple of months before it can be used. Graft can be used within a couple of weeks. If your veins are too narrow, graft is the only solution.

My personal preference is fistula.

Who should perform the shunt surgery?

While any surgeon can do such a surgery, there are experts in vascular access that do it better. In hospitals that do transplant, usually the same surgeons do the shunt too.
Before you have the shunt surgery you should have mapping of your veins. Some surgeons avoid it but this may be the difference between success and failure.

Shunt tips

It is an advantage to have the shunt in the non-dominant arm, but not always possible.
Many women prefer to have the fistula in the upper arm because they can wear short sleeves, but in this area the blood vessels are deeper under the skin and the surgery may take longer time.
It is more difficult for the staff to find them, searching with the needle...
It is also more difficult to stick yourself, just in case you may want to.
In addition, if a fistula in the forearm fails it can be redone in the upper arm but not vice versa.

The needles are inserted into the vein or the graft, not the artery.
The shunt may stop working if it clots. This may happen because of low blood flow and that can be the result of low blood pressure. Sometimes it may clot while you sleep on your hand.
Also a shunt can be damaged by infiltration, that is, a needle is inserted incorrectly by inexperienced tech and punches thru the vein under the skin.
The few infiltrations I had ended with black and blue bruises that lasted a couple of weeks each time.

A clot can be open by a balloon (angioplastic). This is done with sedation only.
Some people like me are lucky. In 17 years I had one partial clot in the vein and I could still have dialysis until it was fixed. Some other patients have many clots and some should take blood thinner.

Peritoneal dialysis

Once you decided about PD you need a catheter.
Catheter takes 2-3 weeks to heal and you need a week or so for training.
In case of emergency you can have your treatments begin earlier in a hospital, or to do temporary HD.

To be continued...