Alport Syndrome - Alport Syndrome -after a kidney transplant (2023)

People described how they felt after their kidney transplant. Some mentioned feeling sore around their stomachs but also their throats where the oxygen tube had been. Often people spoke about the colour of their skin and how they looked better. Diane said people didn’t recognise her because her “greyness disappeared”. Angela said she looked green before and Alan said his spots cleared up. Steve said his “mind came alive again”. Michael X said that when his wife Sal got her first transplant it was a “dramatic and wonderful breakthrough”. Others said they had more energy very soon after the operation. As Steve said after his transplant; “You don’t realise how sick you are when your kidneys are failing”.

Alan said he felt a huge transformation after his transplant.

Alan said he felt a huge transformation after his transplant.

Viewfull profile

Age at interview: 49

Sex: Male

Age at diagnosis: 19

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

Very tired all the time. But having said that, I felt a huge transformation once I'd had that kidney in and I was still in hospital. You know what I mean? I had lots of spots, and my face - my complexion - was just much better. I looked healthier, straight away.

Really?

Yeah, it was a huge transformation.

That quickly?

(Video) Alport syndrome - causes, symptoms, diagnosis, treatment & pathology

Yeah. Yeah, yeah.

And did you feel it in yourself, like much better, or?

Oh, yeah. Yeah. I didn't have the, the nausea associated with, you know, renal patients. It's just like I was cleansing my body, you know? My waterworks were going again. I felt better. I didn't feel - once I came out of hospital, I didn't feel fit, because I was so heavy. I think all the water that I was carrying, carrying around, I just felt sluggish. You know? I mean, I did try. You know, I did engage in physical activity, I started cycling and walking. But I think - I used to have a fast heart rate, and it used to really tire me out. I don't know whether it was the medication, the blood pressure tablets, but made me a bit nervy, you know. And I had to accept it.

Richard Y describes how he felt after his transplant operation.

Richard Y describes how he felt after his transplant operation.

Viewfull profile

Age at interview: 37

Sex: Male

Age at diagnosis: 23

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

The next thing I remember was quite embarrassingly lifting up my gown, trying to see - because I'd wanted rid of this PD tube into my stomach - I was warned for the neck might remain, because if the kidney doesn't kick in straight away, might have to do some. So I knew that was there. But I - this tube, that was the thing I wanted rid of. I was lifting that up, not realising obviously I'm butt naked underneath this gown. Trying to look round, and pull this thing off, and - I'd had my tube out, and I'd got a big bandage here, and - yeah, naked.

I'd got two nurses helping me out, trying to cover me back up again, and get me to drink a little bit of fluid. And I'm trying to guzzle fluid, and they're trying to give me it through this tiniest little straw. I remember high-fiving in some weird anaesthetic state, high-fiving anybody who came past. Shaking people's hands. Maybe a bit euphoric, maybe a little bit high on painkillers, and everything like that. So it was quite funny. And then went back to the ward. Went past the day room, saw my family [laughing]. Apparently I tried to get them to phone [my cousin], because he was in a different part, to find out he was. What I didn't realise is that when they removed his kidney they'd pumped him full of air, and he'd had quite nasty surgery, and he was in some discomfort. And he was on a morphine driver, trying to press that button like it's a fruit machine or something. So he really struggled, from my understanding. At that time I was a little bit out of it. And then we're looking at - so that was a Monday. Tuesday. Probably early afternoon. What time would it be? I'd started to sit up, and they'd got me out of bed quite early. It was about seven o'clock I came back from theatre the day before. And it was about eleven o'clock they'd helped get me out of bed. And I was sat there. And I heard a shuffling. And this drip stand came round the corner. And he's hunched over, he'd - they take the kidney out similar to how they put my dialysis access in, so they cut just below the belly button, and then they use keyhole surgery to go in and cut it out, and then this guy puts his little hand in and pulls the kidney out. So he came hunched over, holding his stomach. Probably one of the best things I've ever seen [laughing]. Him in pain is not what I wanted to see, but to see him up on his feet. Because they pumped him full of air, he just kept burping, trapped wind, and complaining about his shoulder. And then the following day - so he had the surgery Monday morning. My partner took him and his partner home. Because he wanted to see the kids. He left on a Wednesday evening at six o'clock. So he'd had surgery Monday morning to take a kidney out. Probably a little bit too early, but he wanted to be at home.

(Video) Minute Lectures: Alport Syndrome

Blood pressure could return to normal after a kidney transplant. Diane said her creatinine levels “went to normal” 12 hours after her transplant. Several people mentioned passing a lot of urine after their operation and both Alison and Richard Y said their bladder had “shrunk” from being on dialysis and having fluid restriction. Several people lost considerable weight because they no longer had fluid retention. Angela said she felt a bit weak after her operation but was not in a lot of pain. She felt her dialysis operations were more painful. Other people did not experience feeling much better, particularly if they were trying to get the medication to the right level, but were relieved they no longer had to have dialysis.

Some people had a very quick recovery like Diane and Richard X who were only in hospital for 5 days after their transplant operation. Robin returned to work after a month and Angela went back to work after 7 weeks as she felt it gave her a purpose. Mariam and Anthony had worse experiences. Both had collapsed lungs during their operation and took much longer to recover. Mariam was in a coma for two weeks and was in hospital for a month and half after her operation.

Transplant patients have regular checks immediately after the operation. People described daily check-ups at first, which were slowly reduced over the following months. People also spoke about the side effects of being put on strong medication. Robin said he felt his recovery from a transplant was a “gentle ascension into good health” while others experienced a range of emotions after the operation. Steve said he felt very anxious about his new kidney and became fixated on how long it would last, particularly as his friend had donated his kidney to him. He found it helpful connecting with others who had been through the same thing.

Mariam and Steve both got involved in transplant sports. Others said they experienced highs and lows. Several people mentioned adopting a healthier lifestyle such as eating more healthily, exercising and giving up alcohol.

Robin says that there are emotional highs and lows after a transplant.

Robin says that there are emotional highs and lows after a transplant.

Viewfull profile

Age at interview: 62

Sex: Male

Age at diagnosis: 26

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

One thing you particularly are aware of it that and the various drugs accentuate this is that your emotions are thrown all over the place when this is all going on. It’s partly a result of the drugs. It’s partly a result of what’s going on. Physically it’s partly, exactly what you’re undergoing anyway but your emotions go up and down, up and down. I mean to extremes because of your body, the whole, everything in your body is changing, all your chemistry levels are changing in your body. You know, your emotions are completely being thrown around because of all of that. And, and the slightest change in your physical condition can cause you to think, “Oh this is rejecting. It’s not working.” And it can, it’s a very, it can take some handling.

So how were your emotions during that time?

(Video) The Story of Alport Syndrome

Oh I can remember being very high and very, very low, absolutely. You get very, very depressed. You think it’s not working and you get emotionally very, very high, you know, you think well, well what’s he on. You’re actually not really on anything. It’s just completely yeah high. But it, it does produce extremes no questions.

Quite extreme sort of emotions?

Yes absolutely.

The sort of things that you are going through and?

Yes and I don’t think, again maybe now but I do remember that side, especially not being dealt with quite so well medically but if you are having physical symptoms, physical indications but then you got to be very carefully monitored but the emotional aspects of what you are going through were not really being dealt with. And I just rem-. I just have one recollection of one nurse saying to me, “Oh you do know that this drug in particular when you do this will actually make you feel extremely depressed.” I said, “That’s the first time anybody told me that. If somebody had said that was the case I’d know a bit better how to deal with it.” It’s just a medical, sorry, it’s just driven by a chemical reaction that will ease off rather than saying, “Oh my goodness”, you know. “The whole world is tuning black.” In fact when she said that I actually felt better because I know this is something I can deal with. I felt that was something, I felt was a little bit lacking at that time.

Transplanted kidneys could last many years; Alan’s kidney lasted 22 years before he lost it through a motorcycle accident. Cynthia was on her third transplant which had lasted 20 years. Richard X’s second transplant had lasted 11 years so far, while Mariam’s transplant has lasted 9 years.
Unfortunately some people experienced kidney rejection – for Cynthia, her first and second transplants were rejected after a few months and she was put back on dialysis. Other people talked about “episodes” of kidney rejection after their transplant which were described as “quite common” or “a bout of rejection”. These were often dealt with through increased medication.

Angela says that her new kidney took a while to settle in after some rejection.

Angela says that her new kidney took a while to settle in after some rejection.

Viewfull profile

Age at interview: 40

Sex: Female

Age at diagnosis: 10

See full profile

SHOW TEXT VERSION

EMBED CODE

PRINT TRANSCRIPT

(Video) Living With Alport Syndrome

Can you talk me through what happened with the transplant?

So, yeah. So then I had the transplant. And it was broadly, you know, fine. Uncomplicated. Went back to work seven weeks later. I had one episode of rejection. But I think I had in my head at the time that it rejected, was just like 'maybe it hasn't worked', and that was a big awful thing. But actually I think it was quite common, or it was then, to have a bit of rejection. And normally they just - tablets, they can treat it. It's normally about just basically - straight after having a transplant your immune system is lowered a lot more than it is now. So your body obviously gets used to it, and the kidney settles in. So it was just a case of, it was just a case of basically taking more tablets for a while. So it didn't - wasn't really problematic. And then you have to take more tablets afterwards. But then apart from that, I kind of - in my mind - was largely back to normal after that.

Kevin said that his kidney function dropped after his transplant and his doctor discussed the possibility of going back on dialysis which he said was “depressing”. Luckily his kidney function did “eventually pick up”.

Robin says that after thirteen years his first transplant failed.

Text only

Alport Syndrome - Alport Syndrome -after a kidney transplant (5)

Read below

Robin says that after thirteen years his first transplant failed.

Viewfull profile

Age at interview: 62

Sex: Male

Age at diagnosis: 26

See full profile

HIDE TEXT

PRINT TRANSCRIPT

(Video) Minute Lecture: From lab to treatment (Alport Syndrome)

Around thirteen years later the transplant eventually failed. And so there were certainly family memories of me getting slower and running to a halt and having been able to do less and less. So I switched to a different kind of dialysis thereafter for some time. There was forms of dialysis where you can do it through the peritoneum and overnight, which meant that I could still continue to travel overseas with my job and family holidays and so forth without being so restricted to machinery at a hospital or at home which was again very, very helpful. That took around five or six years before another transplant became available.

One of the signs of kidney rejection is feeling tired. Steve described it “as a horrible tired, where you’ve got no energy whatever you do”. Paul said his second kidney wasn’t rejected as much as it “ran out of steam”. He describes how transplant isn’t “a cure but a treatment” and it can come with another set of problems.

Robin and Paul who both had several transplants said they found it more difficult as they got older because they knew what was coming. Paul said as much as he was hoping for the call, he dreaded it. At the same time they noticed many medical advances in recovery time and medication after a transplant. Richard X’s mum was able to have keyhole surgery, an option not available for his dad several years earlier. Richard X took longer to recover from the second transplant and he wonders if it was because he was older. His family go out and celebrate the anniversary of this second kidney. Paul said that frequently people name their new kidneys and his is called “Dave”. Alison says hers is called “Big Kid” because it seemed larger than usual when she had her ultrasound. She went out with her friends on her “kidney-versary” and had afternoon tea and prosecco.

FAQs

Does a kidney transplant cure Alport syndrome? ›

A kidney transplant is not a cure for Alport syndrome, and other symptoms of the disease, such as problems with hearing and eyesight, will not improve following a transplant.

Can you live a normal life with Alport syndrome? ›

Women usually have a normal lifespan with no signs of the disease except for blood in the urine. In rare cases, women have high blood pressure, swelling, and nerve deafness as a complication of pregnancy. In men, deafness, vision problems, and end-stage kidney disease are likely by age 50.

How long do Alport syndrome patients live? ›

Most men with Alport syndrome reach end-stage kidney disease and kidney failure by their 40s or 50s, which can reduce lifespan if not managed with dialysis or a kidney transplant. Most women with Alport syndrome have a normal lifespan.

Can Alport syndrome be cured? ›

There is no cure for Alport syndrome, but there are treatments that can help protect your kidneys. Blood pressure medicines called angiotensin converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) can help keep your kidneys working longer.

Can a person live normal life after kidney transplant? ›

A successful kidney transplant may allow you to live longer and to live the kind of life you were living before you got kidney disease. For many patients, there are fewer limits on what you can eat and drink, though you should follow a heart-healthy diet and maintain a healthy weight to help your new kidney last.

What is the longest someone has lived with a kidney transplant? ›

Missouri farmer, 80, boasts one of the world's longest lasting transplanted kidneys. His sister's kidney has lasted 56 years and counting. Back in 1966, when kidney transplants were new and dangerous, Butch Newman was days from death.

Is Alport syndrome a terminal illness? ›

Most affected individuals will experience end-stage renal disease and deafness by age 40. Without regular dialysis treatments or renal transplant, a patient's life expectancy may be reduced.

Can you live just fine with one kidney? ›

Most people live normal, healthy lives with one kidney. However, it's important to stay as healthy as possible, and protect the only kidney you have.

How many people have Alport syndrome in the world? ›

As a rare disease, the prevalence of Alport syndrome is not well-known, although it is estimated to be 1 in every 50,000 live births worldwide. In the U.S., it is believed to affect 1 in every 5,000 people, while across Europe that estimate ranges from 1 in 100,000 people to 1 in every 11,000.

How long can a kidney recipient live? ›

As a result, the average life expectancy for a patient on dialysis is generally five years. On the other hand, patients who receive a kidney transplant typically live longer than those who stay on dialysis. A living donor kidney functions, on average, 12 to 20 years, and a deceased donor kidney from 8 to 12 years.

Does Alport cause kidney failure? ›

Mutations in these genes result in abnormalities of the type IV collagen in glomeruli, which prevents the kidneys from properly filtering the blood and allows blood and protein to pass into the urine. Gradual scarring of the kidneys occurs, eventually leading to kidney failure in many people with Alport syndrome.

How rare is Alport syndrome? ›

Alport syndrome is estimated to affect approximately 1 in 5,000-10,000 people in the general population in the United States, which means that approximately 30,000-60,000 people in the United States have the disorder.

Can human kidney grow back? ›

A kidney is an organ with relatively low basal cellular regenerative potential. However, renal cells have a pronounced ability to proliferate after injury, which undermines that the kidney cells are able to regenerate under induced conditions.

How do you manage Alport syndrome? ›

Currently, there is no specific treatment for Alport syndrome. The goal is to treat the symptoms and help slow the progression of kidney disease.
...
This may include:
  1. ACE inhibitor or ARB medicines (medications to control high blood pressure)
  2. Diuretics (water pills)
  3. Limit sodium (salt) in your diet.

Who is most likely to get Alport syndrome? ›

Autosomal recessive Alport syndrome affects about one in 40,000 individuals (3), and is suspected in young women with renal failure and hearing loss or lenticonus (15). The family may be consanguineous. Typically, the only other affected family member, if any, is a sibling (Figure 2C).

Can you live 40 years after kidney transplant? ›

For example, a 30-year-old on dialysis would have a life expectancy of 15 years. With a deceased kidney donor transplant (a kidney from someone who is brain-dead), life expectancy increases to 30 years. Best of all, a living donor kidney transplant increases life expectancy to 40 years.

What is the best age for kidney transplant? ›

Background. Currently the majority of patients developing end-stage renal disease (ESRD) whom are eligible for kidney transplantation are between 45 and 65 years of age [1, 2]. A kidney transplant has an expected half-life of 7–15 years [3–6].

Can a kidney transplant last 30 years? ›

Transplanted Organs Don't Last Forever

A transplanted kidney lasts on average 10 to 13 years if the organ came from a living donor and seven to nine years if it was from a deceased donor, according to The Ohio State University Wexner Medical Center.

Is your life shortened after a kidney transplant? ›

Living donation does not change life expectancy, and does not appear to increase the risk of kidney failure. In general, most people with a single normal kidney have few or no problems; however, you should always talk to your transplant team about the risks involved in donation.

What causes death after kidney transplant? ›

Cancer and cardiovascular disease are the key drivers of mortality beyond 1 year post-transplant. Among those who experienced graft failure, death was common within the first year after graft failure, consequent to cardiovascular disease and dialysis-specific factors.

Is kidney transplant a lifetime? ›

People can live for many years after receiving a transplanted kidney. On average, a kidney from a living donor lasts about 12 to 20 years, while a kidney from a deceased donor lasts about eight to 12 years. Some people receive more than one kidney transplant in their lifetime.

Is Alport syndrome progressive? ›

Alport syndrome (also referred to as hereditary nephritis) is an inherited progressive form of glomerular disease that is often associated with sensorineural hearing loss and ocular abnormalities [1].

Does Alport syndrome cause blindness? ›

No treatment is necessary since this condition does not affect vision. This condition results in an abnormality in the shape of the lens of the eye. It is not present at birth but may be present in someone needing frequent changes to prescription lenses.

Is Alport syndrome life threatening? ›

CKD and kidney failure usually shorten the lifespan of people with Alport syndrome. CKD increases the risk of dying from heart disease and strokes. Without dialysis or a kidney transplant, kidney failure is fatal.

How expensive is a kidney transplant? ›

The total cost for kidney transplants averaged around 442,500 U.S. dollars in 2020.
...
CharacteristicAverage amount billed in U.S. dollars
Hospital transplant admission152,300
Procurement113,900
180 days post-transplant discharge85,500
30 days pre-transplant32,700
3 more rows
4 Nov 2022

Is having one kidney a disability? ›

Having one kidney can be considered if you meet the Blue Book requirements outlined by the SSA for kidney disease. If you can no longer work full time because of your kidney disease, the SSA could consider you disabled and you will be able to receive Social Security disability benefits.

What foods can repair kidneys? ›

Good foods that help repair your kidneys include apples, blueberries, fish, kale, spinach, and sweet potatoes.
...
  • Bananas.
  • Avocados.
  • Citrus fruits and juices, such as oranges and grapefruit.
  • Prunes and prune juice.
  • Apricots.
  • Dried fruits, such as dates and raisins.
  • Melons, such as honeydew and cantaloupe.

What is the best thing to drink for your kidneys? ›

While plain water is the best drink for your kidneys, other fluids are perfectly acceptable, including coffee, green tea, low-potassium juices, and infused water. Avoid sweetened, carbonated beverages and coconut water.

Is lemon water good for the kidneys? ›

Lemons contain citrate, which helps prevent calcium from building up and forming stones in your kidneys. Interestingly, the benefit doesn't seem to be present in oranges, making lemon a unique tool in kidney stone prevention.

How rare is it to be born without a kidney? ›

Bilateral renal agenesis occurs in 1 of 4500 live births and is usually found in boys. Unilateral renal agenesis occurs in 1 of 1000-2000 live births. Usually there is no family history of renal agenesis, but in 20-36% of cases, there is a genetic cause.

Which is better kidney transplant or dialysis? ›

Kidney transplantation is considered the treatment of choice for many people with severe chronic kidney disease because quality of life and survival (life expectancy) are often better than in people who are treated with dialysis.

Do kidney transplant patients live longer than dialysis? ›

While both treatments have advantages and disadvantages, studies show that patients who have a successful kidney transplant live longer than patients treated with dialysis. * Also, many patients who have a transplant report having better quality of life compared to being on dialysis.

What can you not do after a kidney transplant? ›

Being overweight will also increase your blood pressure. Read more about the calories in alcohol. You should also avoid taking any illegal drugs after a kidney transplant, as they can damage your kidneys, cause a sudden rise in blood pressure and react unpredictably with your immunosuppressant medicines.

Can you be a carrier of Alport syndrome? ›

One source explains that “carriers often do not show any signs of the trait but can pass it on to their offspring.” When applied to females with Alport syndrome, the term “carrier” is used to imply that these women have no risk of developing renal disease or experiencing end-stage renal failure.

Can a father pass Alport syndrome? ›

Autosomal recessive Alport syndrome

In about 15 percent of cases, a child inherits two faulty copies of either gene (one from the mother and one from the father) and develops the disease. This is known as an autosomal recessive pattern of inheritance.

Is kidney damage genetic? ›

More than 60 genetic diseases are currently known to directly or indirectly affect the kidneys. Inherited kidney conditions range from relatively common conditions to very rare syndromes. While some inherited conditions are associated with only mild symptoms, others can cause severe health problems.

Does Alport syndrome affect the heart? ›

In rare cases, Alport syndrome might affect the heart, as suggested by a case report of a woman who experienced a spontaneous coronary artery dissection (SCAD). The condition, which is also rare in other patient groups, had never been described in Alport before.

What company is working on Alport syndrome? ›

Reata Pharmaceuticals Receives Complete Response Letter From The FDA for Bardoxolone for the Treatment of Patients with Chronic Kidney Disease Caused by Alport Syndrome.

Can you live without a kidney? ›

Can you live without kidneys? Because your kidneys are so important, you cannot live without them. But it is possible to live a perfectly healthy life with only one working kidney.

Can you get two new kidneys? ›

People who donate a kidney can live healthy lives with one healthy kidney. A person getting a transplant most often gets just 1 kidney. In rare situations, he or she may get 2 kidneys from a deceased donor. The diseased kidneys are usually left in place.

Is beer good for your kidneys? ›

Even without binge drinking, regularly drinking too much too often can also damage the kidneys. The damage occurs more slowly. Regular heavy drinking has been found to double the risk chronic kidney disease, which does not go away over time.

Will a kidney transplant cure Alport syndrome? ›

A kidney transplant is not a cure for Alport syndrome, and other symptoms of the disease, such as problems with hearing and eyesight, will not improve following a transplant.

Does kidney failure affect your voice? ›

Abstract. Chronic renal failure affects various body systems, one of which is the respiratory system. Because respiration is the prime source for speech, vocal dysfunctions are expected to be present in patients with chronic renal failure.

Is Alport syndrome primary or secondary? ›

Alport's syndrome is a primary basement membrane disorder. Alport403 in 1927 described a clinical syndrome of familial renal disease associated in most cases with deafness.

Is Alport syndrome genetic? ›

This disease is inherited in the following pattern(s): Autosomal dominant inheritance. X-linked inheritance.

How is Alport syndrome treated? ›

Currently, there is no specific treatment for Alport syndrome. The goal is to treat the symptoms and help slow the progression of kidney disease. This may include: ACE inhibitor or ARB medicines (medications to control high blood pressure)

Who treats Alport syndrome? ›

It is very important for people with Alport syndrome to be examined regularly by a nephrologist so that effects of kidney disease, such as hypertension (high blood pressure), can be identified early and treated. Regular evaluations of hearing and vision are also important.

Is kidney failure transferable? ›

It is not contagious. But, some loved ones may get CKD, too, because they share a lifestyle that leads to weight gain and high blood pressure. Family members may also share genes. Ask them to be tested.

How do you know if you have Alport syndrome? ›

Alport syndrome is a condition that affects your kidneys. Mutations in your collagen genes cause Alport syndrome. Symptoms include blood and protein in your pee and hearing and vision loss. It may also cause kidney failure.

Videos

1. How can this syndrome affect kidneys? | Alport Syndrome | Dr. Puru Dhawan
(Kidney Treatment)
2. Sister's Kidney for Little Brother - Mayo Clinic
(Mayo Clinic)
3. Alport Syndrome - Usmle case based discussion
(Dr.G Bhanu Prakash Animated Medical Videos)
4. Alport Syndrome High-Yield Review
(Med School Made Easy)
5. Alport Syndrome
(Pathology Simplified)
6. MRCP Best Lecture On | Alport's syndrome (Nephrology)
(SsAcademy)
Top Articles
Latest Posts
Article information

Author: Saturnina Altenwerth DVM

Last Updated: 11/04/2022

Views: 6570

Rating: 4.3 / 5 (44 voted)

Reviews: 83% of readers found this page helpful

Author information

Name: Saturnina Altenwerth DVM

Birthday: 1992-08-21

Address: Apt. 237 662 Haag Mills, East Verenaport, MO 57071-5493

Phone: +331850833384

Job: District Real-Estate Architect

Hobby: Skateboarding, Taxidermy, Air sports, Painting, Knife making, Letterboxing, Inline skating

Introduction: My name is Saturnina Altenwerth DVM, I am a witty, perfect, combative, beautiful, determined, fancy, determined person who loves writing and wants to share my knowledge and understanding with you.