General Information

Many, many sites abound with too much info to digest. My favorite blog is this:

http://bigdandme.wordpress.com/

Most other links are from the National Kidney Foundation:

http://www.kidney.org/

This is just a general information compilation. For general news on how Henning is doing, what options he has chosen, and what we are looking for in the future, check out the BACKGROUND page.

To catch up on all the details of Henning’s journey, check out the HOME page.

Kidneys: Where they are, what they do, and what happens when they fail:

http://www.kidney.org/kidneydisease/howkidneyswrk.cfm

Where Are the Kidneys and How Do They Function?
There are two kidneys (USUALLY. Henning only has one), each about the size of a fist, located on either side of the spine at the lowest level of the rib cage. Each kidney contains up to a million functioning units called nephrons. A nephron consists of a filtering unit of tiny blood vessels called a glomerulus attached to a tubule. When blood enters the glomerulus, it is filtered and the remaining fluid then passes along the tubule.

In the tubule, chemicals and water are either added to or removed from this filtered fluid according to the body’s needs, the final product being the urine we excrete.
The kidneys perform their life-sustaining job of filtering and returning to the bloodstream about 200 quarts of fluid every 24 hours. About two quarts are removed from the body in the form of urine, and about 198 quarts are recovered. The urine we excrete has been stored in the bladder for anywhere from 1 to 8 hours.
Why Are the Kidneys So Important?
Most people know that a major function of the kidneys is to remove waste products and excess fluid from the body. These waste products and excess fluid are removed through the urine. The production of urine involves highly complex steps of excretion and re-absorption. This process is necessary to maintain a stable balance of body chemicals.
The critical regulation of the body’s salt, potassium and acid content is performed by the kidneys. The kidneys also produce hormones that affect the function of other organs. For example, a hormone produced by the kidneys stimulates red blood cell production. Other hormones produced by the kidneys help regulate blood pressure and control calcium metabolism.
The kidneys are powerful chemical factories that perform the following functions:
• remove waste products from the body
• remove drugs from the body
• balance the body’s fluids
• release hormones that regulate blood pressure
• produce an active form of vitamin D that promotes strong, healthy bones
• control the production of red blood cells
What Are the Warning Signs of Kidney Disease?
Kidney disease usually affects both kidneys. If the kidneys’ ability to filter the blood is seriously damaged by disease, wastes and excess fluid may build up in the body.

Although many forms of kidney disease do not produce symptoms until late in the course of the disease, there are six warning signs of kidney disease:
1. High blood pressure.
2. Blood and/or protein in the urine.
3. A creatinine and Blood Urea Nitrogen (BUN) blood test, outside the normal range. BUN and creatinine are waste that build up in your blood when your kidney function is reduced.
4. A glomerular filtration rate (GFR) less than 60. GFR is a measure of kidney function.
5. More frequent urination, particularly at night; difficult or painful urination.
6. Puffiness around eyes, swelling of hands and feet.

Treatment Options: Dialysis and Transplant:
http://www.kidney.org/atoz/content/dialysisinfo.cfm
When is dialysis needed?
You need dialysis when you develop end stage kidney failure –usually by the time you lose about 85 to 90 percent of your kidney function.
What does dialysis do?
Like healthy kidneys, dialysis keeps your body in balance. Dialysis does the following:
• removes waste, salt and extra water to prevent them from building up in the body
• keeps a safe level of certain chemicals in your blood, such as potassium, sodium and bicarbonate
• helps to control blood pressure
What is hemodialysis?
In hemodialysis, an artificial kidney (hemodialyzer) is used to remove waste and extra chemicals and fluid from your blood. To get your blood into the artificial kidney, the doctor needs to make an access (entrance) into your blood vessels. This is done by minor surgery to your arm or leg.
Sometimes, an access is made by joining an artery to a vein under your skin to make a bigger blood vessel called a fistula.
However, if your blood vessels are not adequate for a fistula, the doctor may use a soft plastic tube to join an artery and a vein under your skin. This is called a graft.
Occasionally, an access is made by means of a narrow plastic tube, called a catheter, which is inserted into a large vein in your neck. This type of access may be temporary, but is sometimes used for long-term treatment.
How long do hemodialysis treatments last?
The time needed for your dialysis depends on:
• how well your kidneys work
• how much fluid weight you gain between treatments
• how much waste you have in your body
• how big you are
• the type of artificial kidney used
Usually, each hemodialysis treatment lasts about four hours and is done three times per week.

Transplantation:

http://www.kidney.org/transplantation/transaction/index.cfm
Is Transplant the Right Treatment For You?
Transplantation can allow people to live healthy and happy lives. However, transplant is not the best treatment option for everyone. Below you will find information to help you along your journey of deciding if a transplant is right for you.
Is transplant the right treatment for you?
An organ transplant is an operation that places a healthy organ from another person into your body. The organ can come from someone who has died (a deceased donor) and has signed their state’s donor registry or told their family of their wishes to become a donor. Kidney, kidney-pancreas, pancreas, heart, heart-lung, lung, liver, intestine are all organs able to be transplanted from a deceased donor.
Kidneys may also come from a living donor. This person may be a relative, spouse, friend, or even someone who wishes to donate a kidney to anyone in need of a transplant. Living donors can also donate part of a lung, liver, intestine or pancreas, but these types of surgeries are not as common as living kidney donation. Visit our site on living donation for more information.
Transplant is a treatment option, not a cure, but you can live a long, productive life if you a healthy lifestyle with diet, exercise and knowing your individual limitations.
Who are organ transplant candidates?
Before you receive a transplant, it is necessary to undergo a series of medical tests to determine whether or not you are a good candidate for transplant. You must be cancer-free and have no active infections.

Transplant Surgery:
Details of the transplant operation would be discussed at length by your transplant team. Recovery time depends on the individual. Immunosuppressive drugs are needed so that your body doesn’t reject the new organ. While these drugs are typically taken for as long as you have a transplant, they may change in type or dosage as decided by your doctor.
There are many people on your transplant care team, contributing to your care; however, the most important person on your transplant team is you. You need to take care of yourself and follow your doctors instructions. Educate yourself, speak up when something is wrong, share your concerns, and surround yourself with supportive friends and family.

Contraindications for Transplant:
http://www.umm.edu/transplant/kidney/indkidny.htm
THIS is what has Henning off the list for the foreseeable future:
Structural genitourinary abnormality or recurrent urinary tract infection.

Access for Dialysis: Fistula and catheter: What is it and how does it work?
http://www.kidney.org/atoz/content/hemoaccess.cfm
How Your Access Works
A hemodialysis access, or vascular access, is a way to reach the blood for hemodialysis. The access allows blood to travel through soft tubes to the dialysis machine where it is cleaned as it passes through a special filter, called a dialyzer. An access is placed by a minor surgery.

As a hemodialysis patient, your access is one of the following:
• A fistula, an access made by joining an artery and vein in your arm.
• A graft, an access made by using a piece of soft tube to join an artery and vein in your arm.
• A catheter, a soft tube that is placed in a large vein, usually in your neck.
If your access is a fistula or graft, your nurse or technician will place two needles into the access at the beginning of each treatment. These needles are connected to soft tubes that go to the dialysis machine. Your blood goes to the machine through one of the tubes, gets cleaned in the dialyzer, and returns to you through the other tube. If your access is a catheter, it can be connected directly to the dialysis tubes without the use of needles.
A fistula should be considered the first choice for your access because it generally lasts longer and has fewer problems such as infections and clotting. However, some patients may not be able to receive a fistula because their blood vessels are not strong enough. A graft is considered the second choice for an access. Catheters are generally used as a temporary access, but sometimes they are permanent. Sometimes, it may be possible to switch to a fistula from another type of access. If you do not have a fistula, ask your dialysis care team if a switch would be possible for you.
Caring For Your Access
Whether your access is a fistula, graft or catheter, you should make sure to take good care of it. Your dialysis care team will teach you the steps of good access care. The chart below gives you some general tips about everyday access care and how to prevent problems.
Fistula or Graft
• Wash with an antibacterial soap each day, and always before dialysis. Do not scratch your skin or pick scab.
• Check for redness, a feeling of excess warmth or the beginning of a pimple on any area of your access.
• Ask your dialysis care team to rotate the needles when you have your dialysis treatment.
Catheter
• Keep catheter dressing clean and dry.
• Make sure the area of the access is cleaned and the dressing is changed by your care team at each dialysis session.
• Keep an emergency dressing kit at home in case you need to change your dressing between treatments.
• Never open your catheter to the air.
Keeping Your Access Working
Your dialysis care team will check your access often to make sure it is working well. An access that is not working well can decrease the amount of dialysis you receive. Your dialysis care team will teach you how to check your fistula or graft at home each day.

Here are some tips you should follow to help keep a fistula or graft working longer:
• Check the blood flow several times each day by feeling for a vibration, also called a pulse or thrill. If you do not feel this, or if there is a change, call your doctor or your dialysis center.
• Do not wear tight clothes or jewelry on your access arm.
• Do not carry anything heavy or do anything that would put pressure on the access.
• Do not sleep with your head on the arm that has your access.
• Do not let anyone use a blood pressure cuff on your access arm.
• Do not let anyone draw blood from your access arm.
• Do not be afraid to ask your dialysis care team to rotate needle sites.
• Apply only gentle pressure to the access site after the needle is removed. Too much pressure will stop the flow of blood through the access.
• If you have breakthrough bleeding after you have dialysis, apply gentle pressure to the needle site with a clean towel or gauze pad. If the bleeding does not stop in 30 minutes, call your doctor or your dialysis center.

Options for Dialysis: In-Center vs. Home:
When you are told you have kidney failure and need treatment to stay alive, it can be a difficult time in your life. If your kidney diagnosis is new, you may feel overwhelmed, confused and angry. But there are some important things you can do to help yourself. Learn all you can about your different treatment options and take an active role in decisions about your care.
How hemodialysis works
Hemodialysis is a treatment that replaces the work of your own kidneys to clear wastes and extra fluid from your blood. This is done using a special filter called a dialyzer or artificial kidney. Your blood travels through plastic tubing to the dialyzer, where it is cleaned and then returned to you. At the beginning of each treatment, two needles are placed into your access. These needles are connected to the plastic tubing that carries your blood to the dialyzer. Only a small amount of blood is out of your body at any one time. The dialysis machine pumps your blood through the dialysis system and controls the treatment time, temperature, fluid removal and pressure.
This basic process is the same for home hemodialysis, except that you and a care partner are trained to do your treatment at home.

You can do hemodialysis at a dialysis center where a nurse or technician performs the tasks required during treatment. In-center hemodialysis is usually done three times a week for about three to four hours or longer each session. In-center treatments are done at a pre-scheduled time.
You can also do hemodialysis at home where you are the one doing your treatment. At home, you may be better able to fit your treatments into your daily schedule. Studies show that the more you know about your treatment and the more you do on your own, the better you are likely to do on dialysis.
Different types of home hemodialysis
Three types of hemodialysis can be performed at home. They are:
1. Conventional home hemodialysis: You do this three times a week for three to four hours or longer each time. You and your care partner are trained to do dialysis safely and to handle any problems that may come up. Training may take from several weeks to a few months.
2. Short daily home hemodialysis: This is usually done five to seven times a week using new machines designed for short daily home treatment. Treatments usually last about two hours each. You and your care partner are trained over several weeks. Because you are doing dialysis more often, less fluid generally needs to be removed each time. This reduces symptoms like headaches, nausea, cramping and feeling “washed out” after treatment.
3. Nocturnal home hemodialysis: Long, slow treatments done at night while you sleep. You may do this kind of dialysis six nights a week or every other night. This depends on what your doctor prescribes for you. Treatments usually last about six to eight hours. You and your care partner are trained over several weeks. Some centers monitor your treatments by sending information from your dialysis machine to a staffed location by telephone modem or the Internet. More hours of dialysis each week can result in more waste removal.
It is also possible to combine daily and nocturnal home hemodialysis. Whether you can combine treatments depends on your needs, your medical condition and your machine.
Whatever treatment option you choose, it is important to know if you are getting the right amount of dialysis. Tests should be done regularly to check the amount of dialysis you receive. For more information, speak with your doctor and your dialysis care team.
Added benefits of short daily and nocturnal home hemodialysis
Many reports indicate that people using short daily and nocturnal home hemodialysis:
• Take less medication to control blood pressure and anemia
• Take less medication to keep phosphorus under control to help prevent bone disease
• Have improvements in neuropathy (nerve damage) and less restless leg syndrome
• Feel better during dialysis and less “washed out” after
• Have more energy for daily tasks
• Sleep better
• Have fewer and shorter hospital stays
• Have better quality of life
• Live longer.
New technology
New, easy-to-use machines are being developed for home hemodialysis. These are easier to set up, clean and disinfect. With some newer machines you have fewer supplies to store. If you think home hemodialysis is a good choice for you, ask your doctor about the best equipment for you.
Deciding if home hemodialysis is right for you
Home hemodialysis is not a good fit for everyone. You need to learn a lot about it. You need to be willing to be responsible for your own treatment. As long as you and/or your care partner can pass the training and learn to place your needles, you should be able to do home hemodialysis.

Your care partner
Most home hemodialysis programs ask you to have a care partner who is willing to be with you to help during each treatment. Your care partner can be a family member or friend. This person goes through the training with you so he or she can learn what to do. Sometimes, patients hire a nurse or technician to be their care partner.
Stopping Dialysis: What Happens:
http://www.kidney.org/atoz/content/dialysisstop.cfm
There may come a time when you feel you want to discontinue dialysis treatment. You may feel that dialysis is no longer maintaining or improving your quality of life. If this occurs, it is important to know that you have the right to make the decision to stop dialysis. However, before making this decision, it is important that you discuss it carefully with your loved ones and treatment team.
Can I really stop dialysis treatment if I want to?
Yes, dialysis patients are allowed to make decisions about stopping dialysis treatment. You are encouraged to discuss your reasons for wanting to stop treatment with your doctor, other members of your health care team and your loved ones before making a final decision.
If I ask to stop dialysis, how will the health care team at my unit respond?
The members of your health care team will want to have a clear understanding of why you made this decision (worsening health, specific treatment problems, depression) to determine if any improvements might be made that could affect your decision. Your doctor, social worker and nurse may all speak to you and encourage you to talk openly about your feelings.
How do I discuss my decision with my family and friends?
Many people find it difficult to talk to loved ones about stopping treatment, and they worry about how others will feel and react. Although you may find it hard at first, the best approach is to discuss your feelings openly with your loved ones. You may wish to have members of your health care team (like the doctor, primary care nurse or social worker) present when you speak with them.
Can any changes be made in my treatment that might improve my quality of life?
Maybe. If you are thinking about stopping dialysis because of specific treatment or other medical problems, your doctor might be able to make some changes that would improve your situation.
Will I be asked to speak to a mental health professional?
You might. If your health care team is concerned that you want to stop dialysis for solely emotional reasons or because you are suffering depression, you may be asked to speak with a psychiatrist, social worker or other counseling professional. Depression may be treated successfully with counseling, medicine or a combination of both. The team may also want you to speak with a mental health professional to make sure you understand the full impact of what stopping dialysis will mean.

Is stopping dialysis considered suicide?
Many religions teach that individuals have the right to stop treatment, including dialysis, if they feel it is not helping and is burdensome. You may wish to speak with your religious adviser if you have concerns about this.
How long will I live if I choose to stop dialysis?
This varies from person to person. People who stop dialysis may live anywhere from one week to several weeks, depending on the amount of kidney function they have left and their overall medical condition.
What should I expect after stopping dialysis?
Death from kidney failure is usually painless. However, if you do feel any discomfort, pain medicine may be prescribed for you. Without your dialysis treatment, toxic wastes and fluid will build up in your body, making you feel more tired. The fluid build-up can make it more difficult for you to breathe, but your doctor can prescribe diuretics or a treatment called ultrafiltration to remove fluid and make breathing easier for you. The doctor may also recommend that you limit your intake of salt and fluids to reduce fluid weight gain.
What type of food and drink could I have?
Typically, there is no reason for you to continue to follow your renal diet at this time. Your doctor and dietitian can answer other specific questions you may have about diet.
Will my renal health care team continue to help me?
Absolutely. Your team should remain available to you and your loved ones. Your doctor and primary nurse can advise you about the type of care you might need, and your social worker can help you arrange for care as well as provide emotional support to you and your loved ones.
Can I get hospice care?
Usually. If you choose to stop dialysis, you are considered to be in a terminal state and you are eligible for hospice care. The type of hospice care available may be either a home hospice program or a hospice facility. Your social worker can help you and your loved ones in making arrangements for hospice care.
Do I have a choice of where I die?
Your wishes about where you want to die will be honored as much as possible. Many people choose to die at home, where they feel more comfortable in familiar surroundings. If you choose this option, your social worker can assist you and your family in making any special arrangements for your care at home. A nursing home may be another option for some patients. A hospital admission is not always available, depending on the nature of your insurance coverage and your overall medical condition. Your health care team can help you decide if hospitalization is an option for you if you wish.
If I choose to die at home, can I get a home health care worker to help my loved ones?
The types of services covered at home will depend on your insurance. If you are in a home hospice program, a home health aide may be available to assist. If your insurance does not cover a home health aide and you and your loved ones wish to pay privately for these services, you can do so. Your social worker can usually assist in arranging these services.
If I change my mind, can I go back on dialysis? Will I feel sicker if I do?
You may go back on dialysis if you change your mind. If you have missed several treatments, you may have some discomfort when you first start dialysis again. You should discuss the possibility of returning to dialysis with your doctor.
What should I do if I decide to stop dialysis treatment?
If you decide to stop dialysis treatment, you or your surrogate may want to make sure the following items are in order:
• Your will.
• Signed advance directive (living will, durable health care power of attorney or health care proxy) complying with your state law.
• A durable power of attorney, complying with your state law, naming someone to act on your behalf on all matters other than medical (e.g., legal, financial, banking and business matters). Your power of attorney must be a “durable” one in order to stay in effect even if you become unable to make your own decisions or if you die.
• An inventory, including the location of your bank, brokerage and other financial accounts, stock and bond holdings, real estate and business records, medical and other insurance policies, pension plans and other legal papers.
• Names, addresses and telephone numbers of your attorney, accountant, family members and other loved ones, friends and business associates who should be notified of your death or who may have information that will be helpful in dealing with estate affairs.
• A statement about your preference for funeral/memorial services, burial or cremation instructions and decisions about organ and tissue donation.
• Written or video- or audio-taped message to family members and other loved ones, business associates and friends.

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