My friend needs a kidney transplant :(

[SoCalDem]

She is only 42 and has polycystic kidney disease.. It affected her liver and she had a liver reduction surgery at Mayo Clinic a couple of years ago and now her kidneys have totally failed..

She goes 3 times a week for dialysis, and is actually feeling a bit better, but it's a real disruption..

What's so sad is that she would have been such a good mom, but when she found out that she too had the disease (her brother, uncle and father died from it at young ages), she decided that she would have no children...


The doctor said it could take her 4 years to move up the list enough to get a kidney..

Last year when my other friend Connie's son died and she donated his organs, she asked about donation for our other friend but was told that since she was not "on the list" she could not be a recipient..

[sasquatch]

1. That is bad news

Could you donate one of yours?

[Blue_State_Elitist]

2. sorry about this

More people ought to register when they get their license to become future organ donors

[TheZoo]

3. I REALLY hate f-ing God(dess)

I lost my Marie because of the same f-king thing. She did have two transplants that obviously did not work, including one transplant from her brother.

My thoughts and prayers (not that they work for me) to your friend, I really hate the "Person" responsible. This is so FU-KING unfair!

[REP]

4. Has She Looked Into PD?

There are two kinds of dialysis people can do at home; peritoneal dialysis and continuous ambulatory peritoneal dialysis. For many people, this is a more convenient solution than hemodialysis, and since it can be done daily, they feell better.

People with PCK tend to do well on dialysis and after transplant. Best of luck to her.

[SoCalDem]

6. She kind of wants to do this, but her husband is scared

because they might not recognize trouble before it was too late.. Oddly enough, another friend of ours died from the same horrible disease, and he was using the self dialysis.. He only lasted a few months after he started it..

Rick was a few months shy of his 35th when he died.. They had their sons tested and 2 of the four were positive.. They did not tell their sons since they were 4, 7, 10 and 11 at the time.. But now Liz has the awful task of watching for the signs and figuring out when to tell them.. (It's the 4 & 10 yr old)..

Rick's older brothers (2 of them) and his Dad also died from it..

Every time I go into my kitchen I think of him.. He and his wife helped me wallpaper, and he did a new ceiling for me in there..

It's such a creepy disease, because to look at him (and my other friend) you would never know there was a thing wrong.. Rick was 6'4",210, and a very active guy, until he just wasn't :(

[REP]

8. I Know

I have advanced Focal Segmental Glomerulosclerosis and early diabetic nephropathy and maybe minimal change disease as well. Unless you know what to look for, I don't look that sick.

There is a usenet group - alt.support.kidney-failure - where your friend (and you) can get information on the disease and managing dialysis, as well as personal anecdotes about different types of dialysis. She'll do a lot better if she feels more in control, and you might feel a little better, too.

[SoCalDem]

9. Thanks.. I'll tell them about the link

They have done lots of research, but it always helps to "talk" to a person who is in the same boat..

Sorry about your condition.. It sounds awful:(

[REP]

10. It's Untreatable

and I may be where your friend is when I reach her age. Not to be too depressing or anything.

[DemBones DemBones]

11. And isn't it a pain when people say, "Oh, you look so good!"

as if they maybe wonder just how sick you really are? I often feel like saying, "Of course I look good! You only see me if I'm well enough to go out and I do try to look nice even when I'm not well."

I fear kidney failure, which is what most people with lupus die of. Dialysis sounds very un-fun.

[REP]

16. I Just Say "Thank You"

because the few times I do hear that, it is meant well.

Even though I'm fairly young, I don't get shit when I use my hcap parking permit, either.

[dsc]

5. I am so sorry

I hope she can find a donor. I am signed as one on my licence as I hope all others are. Best of luck.

[jody]

7. Is she able to do "peritoneal dialysis"? That process can be done

overnight while she's asleep. Most people on peritoneal say that it's much less stressful than hemo. Also, peritoneal patients can eat almost normally unlike hemo patients who always have to watch their diet and fluid intake.

You might want to visit the following sites.
http://brumley.com/renal/pdboard.html
http://www.renalnet.org/renalnet/renalnet.cfm
http://www.renalweb.com/
http://www.nephroworld.com/
http://www.multi-med.com/gateway/

Tell your friend she's not alone and please find an internet support group.

[DemBones DemBones]

12. I'm really sorry about your friend and hope things go well

for her. A friend of mine was so sick at one time that she was moved to the top of the liver transplant list. This was probably four years ago and gradually she got better and no longer needs a transplant at all. I don't know if kidney damage can be reversed that way -- never knew liver damage could.

[SoCalDem]

15. PKD is not reversable or curable

http://www.pkdcure.org/aboutPkd1.htm#whatis


What is PKD?
Polycystic Kidney Disease comes in two hereditary forms:

Autosomal dominant (ADPKD), the most common of all life-threatening genetic diseases.
Autosomal recessive (ARPKD), a relatively rare disease that often causes significant mortality in the first month of life.





A normal kidney is the size of a human fist. However, with the presence of PKD, cysts develop in both kidneys. There may be just a few cysts or many, and the cysts may range in size from a pinhead to the size of a grapefruit. When many cysts develop, the kidneys can grow to be the size of a football or larger and weigh as much as 38 pounds each.


What are cysts?
A cyst in the kidney begins as an outpouching of the nephron, similar to a blister. Cysts can occur anywhere on the length of the nephron. Although polycystic means many cysts, not every nephron forms cysts. The fluid inside the cysts often reflects the area in the nephron from which the cyst arose.

Approximately 70 percent of cysts detach from the nephron when they are still very small, about 2 mm (1/8 inch) in diameter. Over time the cysts enlarge and can become filled with clear fluid or fluid that contains blood or white blood cells.

Cysts can form in other organs as well as the kidney; the most common other site is the liver. Current research suggests that liver cysts are associated with the bile ducts or tubules of the liver rather than liver cells themselves. It appears that rather than take the place of functioning liver cells, cysts merely push the liver cells aside. This is why liver cysts don't cause liver failure even though the liver can become quite enlarged due to cysts.



Research has shown that there are at least three components to cyst formation:

Cell proliferation: The cells of a cyst wall reproduce themselves more than do normal kidney cells. This makes the cysts grow in size.

Celullar secretion: Secretion is a way of making fluid. To form a cyst the cells themselves must produce fluid. If there were no fluid produced to fill the cyst, there would merely be a ball of cells.

Abnormal basement membrane: The basement membrane is a very thin layer of tissue the cyst cells sit on. In ADPKD this layer is thicker than usual and is made up incorrectly.

In general, cysts cause problems because of their size and the space they occupy. The size of the kidneys and liver is directly related to how many and how big the cysts are. For example, people with kidneys over 15 cm (6 inches) are more likely to have pain than people with smaller kidneys.

?warning not a pretty sight.. PKD vs normal kidney

A diseased polycystic kidney compared to a normal kidney.




How come I've never heard of PKD before? Is it a new disease?

In the 1700s and 1800s, PKD was often given the label of Bright's disease. This term encompassed any of several kidney diseases marked by high concentrations of protein in the urine. Today, we know that many of the cases of Bright's disease were actually cases of PKD. The first documented case of PKD dates back to Stefan Bathory, the King of Poland, who lived from 1533 to 1588.

In addition, the PKD Foundation is the only organization in the world that focuses on PKD and it was not formed until the mid-1980s. It wasn't until fairly recently that PKD has gained some momentum in raising awareness and funds for the disease.

Another reason many have not heard of PKD is because it is an "internal disorder" — meaning that it does not have a dramatic affect on a person's outward appearance. A person living with PKD may have pain or trauma on their internal organs, yet they maintain a very "normal" physical appearance that does not attract attention or compassion from the unknowing public.

[REP]

17. No Kidney Disease is Cureable or Reversable

There isn't even much treatment for the majority of kidney diseases. Once you have kidney disease, you have kidney disease. Some diseases, such as FSGS, even recur in transplanted kidneys.

[corarose]

13. OMG Sorry to hear about her she is young

What's horrible is there are so many people who could donate but they don't want to and their relatives bodies could have given someone a full life but instead they don't donate them.

It makes me sick when I hear stories like this one.

[Gemini Cat]

14. I hope your friend gets a kidney.

My SO is on hemo-dialysis. It's a hard life and my SO always feels rotten. PD was tried, but the treatment did not work due to scarring. I would love to give my SO one of my kidneys, but our blood is incompatable, thusly not allowing for a transplant. However, I have recently heard that having differing blood types, may soon not be a problem.

It really pisses me off when people tell me they refuse to sign a donar card, because of various silly fears. I think the gift of one's organs after their death, is a wonderful tribute to their lives.

Good luck to your friend, I really hope she gets a kidney!!

[SoCalDem]

18. I hope your SO gets one too:)

It's a tough thing.. waiting and hoping...and knowing that most likely it will be a long wait.


A co-worker of my husband's waited so long for a bone marrow transplant and sadly, he did not make it.. He had such mixed lineage, that they were never able to find a match.. There were drives for 4 years for him, but no match was found:(

He was only 45 (leukemia)..

[proud patriot]

19. My aunt is also waiting to get on the list

Give your friend a hug for me

[curlyred]

20. My mother died from PKD

In October. She had been on hemodialysis for close to 15 years after suffering a massive abdominal infection that ended her short time on CAPD. The last few years she just went continuously downhill with weight loss and some degree of mental confusion--a side effect of dialysis that we don't hear much about.

It's astonishing to me that more people don't know about PKD, the most common genetic disease.

Best wishes and thoughts to your friend.