ADPKD Treatment Questions

What can I do to prevent, slow or stop the onset of PKD?

There is no cure for polycystic kidney disease (PKD), however there is a treatment option available in Canada that can help prevent cysts from enlarging and slow the decline of kidney function. JINARC (tolvaptan), a twice-daily oral medication, was approved by Health Canada in 2015 for the treatment of autosomal dominant polycystic kidney disease (ADPKD), and can help slow the progression of kidney enlargement and kidney function decline. Alongside the availability of this treatment, researchers and nephrologists continue to strive towards finding additional treatment options for people living with PKD.

Currently, there is no intervention that will prevent the development of ADPKD in someone who inherits it. Those living with ADPKD can control blood pressure and cardiovascular risk factors to try to delay the onset of renal failure. Additionally, those diagnosed should avoid medications that could possibly injure the kidneys.

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How frequently should my kidney function be checked?

  • If you don’t have high blood pressure and kidney function is normal: At least once per year
  • If you have high blood pressure or kidney function isn’t normal: At least twice per year
  • If you are approaching kidney failure: More frequently. Check with your doctor
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How will I know when I need a transplant or dialysis?

If you are seen by a nephrologist on a regular basis, they will frequently request blood work. Your nephrologist will not only be looking at the creatinine level, but also how you are feeling (signs and symptoms) and other electrolyte imbalances. However, you may not experience any symptoms until renal function significantly declines.

About 40 to 50 percent of those living with ADPKD experience kidney failure. Learn the ins and outs of dialysis and transplantation, so you can make the educated decision you need to continue living a healthy life.

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What are the signs of kidney failure?

  • Fatigue
  • Poor appetite
  • Nausea/vomiting
  • Trouble concentrating (in severe cases, confusion)
  • Dry, itchy skin, especially if phosphate is high
  • Funny taste in your mouth; food tastes funny, metallic
  • Muscle cramps at night
  • Swelling in feet and ankles
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Why is blood pressure control important, and what types of medication can I take to avoid to reduce risk of additional damage?

High blood pressure may further damage and scar the kidney. In general, you should avoid any medication that could harm your kidneys or affect your blood pressure. This includes:

  • Nonsteroidal anti-inflammatory agents
  • Cold or allergy pills with pseudoephedrine 
  • Over-the-counter diet pills
  • Herbal supplements
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How is dialysis done?

Dialysis is done by using a special fluid called dialysate. Dialysate is carefully controlled to pull wastes out of your blood without removing substances your body needs.

There are two main types of kidney dialysis: 

  • Hemodialysis
  • Peritoneal dialysis (PD)
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Why do dialysis treatments take so long?

Healthy kidneys work 24 hours a day, 7 days a week. Dialysis replaces only a small amount of your kidney function. If you are not getting adequate dialysis, you will start to have symptoms of kidney failure, such as:

  • Metallic taste in your mouth
  • Fatigue
  • Itching
  • Loss of appetite

Your doctor may prescribe a larger dialysis machine, longer treatments or both to be sure you get as much dialysis as you need to feel good and keep doing the things you enjoy.

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Will I have to quit work when I start dialysis?

No, you should not have to quit work when you start dialysis. Many people successfully work and get dialysis treatments. Upon starting dialysis, you may need a few weeks or months to adjust, and then a period of working part-time before you get back up to speed. When you are ready, you can return to work full-time.

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Can I travel on dialysis?

Yes, with proper planning, you can travel while on dialysis. Start small with day trips and quick weekend getaways. If you are on hemodialysis, you can reserve a space at a centre where you will be travelling.

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How can I care for my dialysis catheter?

Because catheters are both inside and outside your body, they are very prone to infection. It is very important to always keep your catheter clean and dry. Be careful not to pull or tug on the catheter, especially while getting dressed and undressed. Watch for signs of infection: redness, swelling, pain, pus or fever. Call your dialysis centre right away if you notice any of these signs. Ask your doctor to be sure you understand how to protect your catheter.

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What is “the thrill”?

The vibration of blood going through your arm is called the “thrill.” You should check this several times a day. If the “thrill” changes or stops a blood clot may have formed. By immediately contacting your doctor or dialysis health care team, the clot may be quickly dissolved or removed.

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Should I be concerned about unrestricted blood flow?

Any restriction of blood flow can cause clotting. Here are some tips to help keep blood flowing without restriction:

  • Avoid tight clothing or jewelry that could put pressure on your access area
  • Do not carry bags, purses or any type of heavy item over your access area
  • Don’t let anyone put a blood pressure cuff on your access arm — have your blood pressure taken from your non-access arm
  • Request that blood being drawn is taken from your non-access arm
  • Don’t sleep with your access arm under your head or pillow
  • Check the pulse in your access daily
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How and why does the body reject a transplanted kidney? What happens then?

Rejection is when the organ recipient’s immune system recognizes the donor organ as foreign and attempts to eliminate it. It often occurs when your immune system detects things like bacteria or a virus. 

At least one episode of acute rejection is common within the first year after a transplant, but it can also occur years after a transplant. Despite the use of immunosuppression therapy, acute rejection can occur and often lead to chronic rejection. 

Chronic rejection, which is characterized by gradual loss of organ function, is an ongoing concern for transplant recipients because it can occur weeks, months or years after transplantation. Organ recipients should be aware of the signs of both acute and chronic rejection. Call your doctor as soon as you experience any of them. Symptoms include:

  • Pain or tenderness over the transplant site
  • Fever
  • Flu-like symptoms such as chills, nausea, vomiting, diarrhea, tiredness, headache, dizziness and body aches and pains
  • Change in pulse rate
  • Weight gain
  • Swelling
  • Less urine

You can help prevent rejection by taking the medication as prescribed by your specialist, and by following your diet and routine closely. Any signs or symptoms that appear unusual – including fever or soreness in the area of the kidney – should be reported to your health care professional.

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What kinds of medications will I need to take after a transplant?

The body’s immune system is designed to keep you healthy by sensing “foreign invaders,” such as bacteria, and rejecting them. The immune system will also sense that the new kidney is foreign, so in order to keep your body from rejecting the kidney, you will have to take drugs that turn off, or suppress, the immune response, called immunosuppressants.

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Following a transplant, do medications cause complications?

Immunosuppressants can weaken your immune system, which can lead to infections and an increased likelihood of some cancers, including skin and lymphatic cancers. Some drugs may also change your appearance.

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Is it better to receive a cadaver or living donor kidney? What’s the difference?

About 88.3 percent of kidneys transplanted from cadavers (persons who died recently) were still functioning well at one year after surgery. The results are even better for kidneys transplanted from living donors. The selection process follows below:  

  • Blood type: Your blood type (A, B, AB, or O) must be compatible with the donor’s blood type
  • HLA factors: HLA stands for human leukocyte antigen, a genetic marker located on the surface of your white blood cells. A higher number of matching antigens increases the chances that your kidney will last for a long time. If you are selected on the basis of the first two factors, a third is evaluated.
  • Antibodies: Your immune system may produce antibodies that act specifically against something in the donor’s tissues. To see whether this is the case, a small sample of your blood will be mixed with a small sample of the donor’s blood in a tube. If no reaction occurs, you should be able to accept the kidney.
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When can I get on a waiting list for a transplant?

To get on a provincial waiting list, you should follow these steps:

  • Receive a referral from your physician.
  • Contact a transplant hospital. Learn as much as possible about the transplant hospitals in Canada and choose one based on your needs, including insurance, location, finances and support group availability.
  • Schedule an appointment for evaluation to determine if you are a good candidate for transplant.
  • The hospital’s transplant team will decide whether you are a good transplant candidate. Once deemed a good candidate, you will be added to a provincial waiting list. 
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Can I have a baby after a transplant?

It is safe to have a baby after transplant, however, the safety of pregnancy for individual recipients must include the consideration of risk to the mother, baby and transplanted organ and requires the partnership and support of the obstetrician, transplant team and other specialists.

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Will a transplant cause any complications?

A number of postoperative complications are possible, including:

  • Infections
  • High blood pressure
  • Rejection
  • Diabetes

There is no way to predict accurately which patient living with ADPKD will have problems. The transplant team will do their best to reduce the likelihood of complications and to treat them promptly if they occur. Following instructions carefully and keeping the transplant team informed of any difficulties will help you return quickly to a normal, active life.

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After a transplant, are you cured?

Unfortunately, this is not a cure for PKD, but there is no evidence that polycystic kidney disease occurs in the transplanted kidney. This is expected since ADPKD is inherited and a transplanted kidney would not contain the genetic abnormality. Survival rates following kidney transplantation for those living with ADPKD are similar to all other patients undergoing transplantation.

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