Chronic Kidney failure - Transplantation - Help! Help needed

[natarajaganapathy]

Dear Sir/Madamme,
My Sister is suspected having Chronic Kidney disease,
She is just 24 yrs old now.
We need to know the Treatment for this kind of disease.
If kidney transplantation is the final Solution for this -
1)Will she be free from the Chronic kidney Disease after transplantation?
2)After transplantation will she be able to lead a normal life?
3)what is the success rate for the Transplantation Surgery?
4)How the Diet should be?( Exclusive of Protein,Potassium,Salt) but pls mention some vegetables,edible oils,rice food,wheat food, grams etc.
Pls pls Provide the needed information.
I will be thankful to you.
It will be really helpful for us.
Thank You

[Beth Witten MSW ACSW]

There are several treatments for kidney disease, including different types of dialysis and kidney transplant. Several booklets on the Life Options website (www.lifeoptions.org) where this message board is located describe life on dialysis. One I'd suggest you and your sister read is New Life, New Hope: A Booklet for Families and Friends of Renal Patients.

You also might want to visit Kidney School (www.kidneyschool.org) and read about kidney disease. You will find a module there on types of treatment where you (and she) can read about all the options.

Someone who has a kidney transplant is considered to still have chronic kidney disease because transplant is just a form of treatment, not a cure. However, people with successful transplant (and people on dialysis) can live relatively normal lives. With a transplant, her life will be less interrupted by treatment than with dialysis, but she may need to take more medicine and be very good about taking it like it's ordered.

Since you asked specifically about transplant, you can find some great information about kidney transplant on these website:
* Transplant Living (www.transplantliving.org) -- information about before, during, after
* Transweb (www.transweb.org) has information and links to other transplant sites
* TRIO (www.trioweb.org) has information about transplant for receipients, candidates, donors, and families
* US Transplant Registry (www.ustransplant.org) has statistics on kidney and other organ transplants including specific information on success rates of transplant programs in the US
* National Kidney Foundation (www.kidney.org) has in its A-Z Guide several booklets on transplant, including a booklet on diet after transplant and a membership organization for transplant recipients called the TransAction Council (www.kidney.org/recips/transaction/)

Tell your sister that we wish her well with her transplant!

[natarajaganapathy]

Thank You very much Sir.
She is now working in a private Bank,
I'm afraid that if I tell her that she's a Kidney patient - She will feel very bad.
& How to tackle this I'm confused.
the problem is we are very much concerned over her happiness/wellness. Anyway I have to tell this oneday.
pls Provide me the info for confirming diagnostic tests on CKD.
Is Biopsy necessary ?
will it effect her? in what way?
Anyway we have to put her in right nutririon.
Once again Thanks for Your Kind Information.
Thank You.

[Beth Witten MSW ACSW]

I know it is difficult to share upsetting news with someone you care about. However, your sister has a right -- and even a need -- to know what her health situation so she can do all she can to protect her kidneys and keep them functioning as long as possible. To do this, she first needs to find out if she does have kidney disease. The best person to tell her this is a kidney specialist (nephrologist). She needs to work with one that she trusts and one that is willing to take the time to answer her questions. She should be seeing her kidney specialist regularly. He/she will do a variety of tests to find out if she has kidney disease and will monitor her condition, prescribing medicines, diet, etc. to keep her healthy. The National Kidney Foundation has a fact sheet on 10 tests that can be done to diagnose kidney disease. You can find it at www.kidney.org/general/news/factsheet.cfm?id=5. I

You say that your sister is currently working in a bank. That is great. She should continue to work if possible. Working patients seem to do better emotionally, physically, and financially. She should tell her doctor if she has symptoms that are interfering with her work. Often there are medicines or changes in activities that can help.

Many people think that kidney disease or kidney failure mean that death is near. Without treatment, people do die of kidney failure. However, luckily there are different types of dialysis and someone can get a kidney transplant from a living or deceased donor. I have known people who developed kidney failure at around your sister's age who are alive today over 25 years later. Some have had kidney transplants, while others have lived on dialysis the whole time. Patients that do best are those that ask questions and find the answers they need to do well, keep a positive outlook, and take an active role in their care. Family support is very important. Attitudes are contagious. If you can learn all you can and give her emotional support, you will be doing what you need to do to help her do well.

Oh My God.
Thanks for answering my prayer.
Dear Sir,
As You said,
I'm also one among the illiterates who feels CKD means Death nearing.
After reading Your lines "I have known people of ur sis age live long till 50"
gives Boost to myself.
It gives Hope it - Motivates
Now I can give her my full support without any grievance over her condition.
It hurts deep to hear her condition from a Doctor(they are saying 85% damage is done).
She is right now facing the Symptoms of CKD ad they say.
i.e. Vomiting , Drowsiness , No appettite & seems to be week. Anyway I'll ask her to do the biopsy test.
I have seen her as a Young energetic person.
I didn't believe at first when told abt her illness-CKD.
Now also She seems to be Ok & goes to work normally.
She is among her friens-attending functions.
But Sometimes Once in a week se may face these symptoms & suffers.I feel shame for this helpless condition - Hate you god I say.
I have told her the Do's & Don't do's
Drink less water,avoid Bananas Oranges - keep lemon slice with her.
I didn't tell/Discuss her the Real Problem -CKD.
Now after reading ur message, as a Ray of Hope - God has sent in ur words. I'll tell - I have to But how do I? - God?
Thank You very much Sir,
Thanks for Spending your Precious time in guiding us.
I felt unloaded my sorrows on gods feet.
Pls keep in touch regarding this giving us the Updates.
Once again Thanks for ur touch. soothing soft hearts.
Natarajaganapathy++

[Beth Witten MSW ACSW]

From the symptoms you describe, it certainly does seem like she is nearing the need for treatment. She has to wonder what's wrong with her. She may even be thinking it's worse than it is. Usually, the doctor is the one that tells the patient that he/she has kidney failure, not the family. However, if you're the one that shares this news with her, although it's not the kind of news that anyone would want to share, at least there is treatment. If she had a serious problem with one of her other major organs, she would be facing almost certain death.

Not knowing where she is, I'd say a first step is to find out from the doctors what treatments are available in her area and then figure out how to pay for them and get her to them. If they offer any kind home dialysis and she can do it physically, doing dialysis at home allows someone to live pretty normally. You might want to read about home dialysis on Home Dialysis Central (www.homedialysis.org). A type of home dialysis called "peritoneal dialysis" is the most commonly used type, but hemodialysis (what they do in hospitals and dialysis clinics) can be done at home too.

Ask if there's a social worker she can talk with. In the U.S., every dialysis and transplant center has a social worker to help answer financial questions and help people cope with kidney disease and treatment. She may be eligible for a transplant which would allow her to live more normally as long as she follows her doctor's orders about taking medicines to prevent rejection and other medicines to stay healthy.

She (and you) will be in my thoughts and prayers.

[lafferty4]

Chronic Kidney Disease encompasses so many different specific ailments. Do you know which kind of Chronic disease is affecting your family? My family is afflicted with ASPKD also known as Adult Onset Polycystic Kidney Disease. This disease is "not supposed" to affect you until you are in your 50-60's, however, I was diagnosed at the age of 19 and am now age 33 and disabled. My father has received his transplant, kept working, and is now a Personal Trainer in Pittsburgh, PA! He is doing really well. My specialist at John's Hopkins says that PKD affects over 600,000 Americans but my former employer had never heard of the disease and was set to fire me because they thought I was making it up! I actually had to give them documentation in writing from my doctor and the hospital for them to believe that PKD really is a true disease!

I have heard and seen some strange things. The truth is definately stranger than fiction.

Feel free to write back.

Sincerely,

Barbara Lafferty
lafferty4@verizon.net

[Beth Witten MSW ACSW]

If you haven't already heard of this organization, the PKD Foundation has books and other materials about PKD, chapters, and an annual meeting for patients and professionals. The PKD Foundation funds research on PKD and advocates with Congress to get federal funding for this disease as well. You can find out more about PKD Foundation at http://www.pkdcure.org.

[lafferty4]

HI Beth,

Thanks for the PKD Foundation information. I am already a member. Unfortunately, they are only an informational resource, and once you are on their mailing list, be prepared to be asked for donations several times a year!!!! Their information has been helpful though, as far as explaining my disease to others.

The Kidney Foundation of Maryland is a good resource that I have found as well as is the MediGuide to Polycystic Kidney disease. I actually had more information on PKD than my local nephrologist!

[Beth Witten MSW ACSW]

Every charitable organization sends out fundraising letters. I get requests from the PKD Foundation and several other kidney organizations along with a bunch of other charities. In addition to providing materials and support for people with PKD and their families, the PKD Foundation has given over $10 million in grants to researchers studying PKD. PKD research, part of which has been funded by the PKD Foundation, is paying off.
http://www.pkdcure.org/site/PageServer?pagename=pkdmdpro_profess2

My first social work job working with patients with kidney disease was at the University of Kansas Medical Center. Dr. Jared Grantham who has been recognized for his work in PKD was one of the doctors who taught me about kidney disease. Needless to say, I have a soft spot in my heart for this organization.

[lafferty4]

Perhaps they are an excellent resource for research grants, but from a patients perspective, they really can't help out a patient directly except for informational materials (ie. they can't help with medical bills, grants for transportation, etc). Also, their conferences are outrageously priced for a patient on disability.

There aren't many places that can help out a patient with kidney disease with more than some brochures and getting on a mailing list. I have been looking for doctors that will perform laproscopic cyst reduction and did not like Dr. Kavoussi at John's Hopkins, who was the closest doctor that would perform this type of operation. I wanted a surgeon that I could ask questions to that had performed this operation as many successful times as possible. Unfortunately, Dr. Kavoussi only does 1-2 a year and said that he more than likely would have to do a nephrectomy instead. I did not like his options and know that there are other options out there, including a doctor in Portland, Oregon or Washington State that is very experienced in this procedure.

I don't mean to sound negative, but waiting in pain on disability is not my idea of a good time. It seems the only options available to people who aren't already on dialysis is to wait and take drugs, some of which the side affects are worse than the disease itself (ie. vomiting, more fatigue, memory problems).

I am curious however, to find out what are the guidelines to get on the transplant donor list for a kidney? Do you actually have to be in ESRD to get a transplant or can you get one when your kidneys reach a size that is just plain excrutiatingly painful?

[Beth Witten MSW ACSW]

You're right that the PKD Foundation doesn't provide financial help with the cost of treatment or help for transportation. There are more resources that help with things like that when someone has kidney failure. Probably this is because people are likely to be working and have higher income because most people do in-center hemodialysis which is not very work friendly.

I don't know what your kidney function is, but it is possible to be referred for "pre-emptive transplantation" before your kidneys fail. In most cases this occurs when your kidney function is 25-30%. If you have a potential living donor, he/she can be evaluated too and you could get your transplant without ever doing dialysis. If you don't have a kidney donor, you can get on the transplant list and start getting points to time spent on the list when your kidney function is 20%. People with PKD appear to do well with kidney transplants.

I found this link to information about pain management in PKD. I'm not sure if any doctors in your area are doing any of these procedures, but the PKD Foundation may be able to tell you if you call them.
http://www.pkdcure.org/site/PageServer?pagename=pkdabt_patientsartic5.

[Black]

HI Beth,

Thanks for the PKD Foundation information. I am already a member. Unfortunately, they are only an informational resource, and once you are on their mailing list, be prepared to be asked for donations several times a year!!!! Their information has been helpful though, as far as explaining my disease to others.

The Kidney Foundation of Maryland is a good resource that I have found as well as is the MediGuide to Polycystic Kidney disease. I actually had more information on PKD than my local nephrologist!

ITA w/ your assessment of the PKD Foundation. They do have some good general background info. but their primary focus appears to be raising funds for research. I'm glad someone is doing that, but I was disappointed to find there is not one comprehensive site for PKD info and it has been necessary to spend many hours, of many days, over many months, learning what we need to know to take good care of my husband and his descendants. We started out behind the curve and have been playing "catch up" ever since he was first diagnosed over a year ago -- when he was initially told, "There is no treatment for PKD." and diet was never mentioned.

I'm currently waiting by the phone for a call back from a social worker in another state because she is the only live person I have been able to find to speak to that appears to be well informed, can always answer my questions and volunteers information freely. It shouldn't be like pulling teeth to get information.

Educated professionals should be prepared to volunteer complete information and not wait for me to carefully phrase every question about every detail so I can get the info I need. I shouldn't have to monitor dozens of medical web sites to piece together a timeline for appropriate progression of care. General Practitioners should know to ALWAYS refer ALL of their PKD patients to a Nephrologist for evaluation. ALL Nephrologists should be educated about PKD and tell their patients that there are things which can be easily done which may slow the progression of cyst growth and disease progression. Nephrologist should tell patients that if they live long enough they will be on dialysis and that vein mapping should be done many months in advance of kidney failure. (The government "Fistula First" information should be given to every patient.) Nephrologists and surgeons should tell patients that fistulas should be done by VASCULAR surgeons and not by a general surgeon who does only a few a year. Nephrologists, vascular surgeons, and dialysis centers should tell patients up front what their success rates have been in getting useable fistulas and the percentage of their patients they have been able to put on home hemo.

Here is one tiny example of the problems I have encountered. I saw a reference to a patient using a "squeeze ball" to hasten maturation of a fistula. It took a while online to learn that this happens because the exercise increases blood flow, which expands and strengthens the walls of the vascular system in the arm. Thereafter, I mentioned the "squeeze ball" to several dialysis patients, my husband's nephrologist, his fistula surgeon and two social workers and two nurses at two different dialysis centers. Every single one of them eagerly said something like, "That's a good idea." "Yes, that will help." "Yes, he should be doing that several times a day before he has the fistula surgery." BUT not ONE of them had suggested it previous conversations!!!

I hate being "mushroomed" (fed sh*t and kept in the dark) and that has been the case with one bright exception -- online message boards have been a wonderful source of support and information!!

PS: Thanks for the opportunity to vent :)

[Beth Witten MSW ACSW]

You're 100% right that people with kidney disease need to be referred to nephrologists and need much more education -- the sooner the better.

Did you find the free materials on this site? There are booklets, fact sheets, and lists of questions (called Patient Interest Checklists) that are for people with kidney disease and failure.

You might also want to look at the tips from patients and professionals. There is at least one tip for using a squeezeball -- squeezing to well known songs.

[Black]

You're 100% right that people with kidney disease need to be referred to nephrologists and need much more education -- the sooner the better.

Did you find the free materials on this site? There are booklets, fact sheets, and lists of questions (called Patient Interest Checklists) that are for people with kidney disease and failure.

You might also want to look at the tips from patients and professionals. There is at least one tip for using a squeezeball -- squeezing to well known songs.

Thanks, Beth; yes, I have been all over this site and at least one more where you also post. I cannot say enough good things about the info you and others have provided. These boards, w/ the info they provide and link to, may have saved my husband from an early death. :shock: We've been married 26 years; thanks to you and the others who have taken time to share their experiences here, we may get another 20 or more :D

BTW, Hubby exercises his arm while he's web surfing -- he's trying for 600 reps total for each day. He started the Commit lozenges today -- probably the 6th or 7th time he's tried to quit smoking. He's been smoking 44 years and had already cut down from 3 packs a day to 1 1/2 (pray these lozenges work better than the gum and the patches!!) Thanks to cigarette withdrawal he'll probably exceed 600 for the next few days :lol:

Thanks again.
Lorelle

[natarajaganapathy]

From the symptoms you describe, it certainly does seem like she is nearing the need for treatment. She has to wonder what's wrong with her. She may even be thinking it's worse than it is. Usually, the doctor is the one that tells the patient that he/she has kidney failure, not the family. However, if you're the one that shares this news with her, although it's not the kind of news that anyone would want to share, at least there is treatment. If she had a serious problem with one of her other major organs, she would be facing almost certain death.

Not knowing where she is, I'd say a first step is to find out from the doctors what treatments are available in her area and then figure out how to pay for them and get her to them. If they offer any kind home dialysis and she can do it physically, doing dialysis at home allows someone to live pretty normally. You might want to read about home dialysis on Home Dialysis Central (www.homedialysis.org). A type of home dialysis called "peritoneal dialysis" is the most commonly used type, but hemodialysis (what they do in hospitals and dialysis clinics) can be done at home too.

Ask if there's a social worker she can talk with. In the U.S., every dialysis and transplant center has a social worker to help answer financial questions and help people cope with kidney disease and treatment. She may be eligible for a transplant which would allow her to live more normally as long as she follows her doctor's orders about taking medicines to prevent rejection and other medicines to stay healthy.

She (and you) will be in my thoughts and prayers.

Hi Beth - good day,

Hope you had a fantastic new year startup..

Sorry for not catching up with you -
All is well now -
My sister has gone thru transplantation after 12 dialyis in the hospital - all happened in 2006 decemebr
Mom has donated her Kidney - it has macthed well.
both of them are doing well and good.

Sis is again going back to work - Mutual fund advisor
running on pangraf and cellcept - she is okay now
my only worry is that she is not going for walking regularly nowadays

[natarajaganapathy]

Hey Beth -

Thanks again..for all your help..and prayers..

Wish you a great year ahead with all the success and happiness....

Good day,
Guns

[Beth Witten MSW ACSW]

I'm glad to hear that your sister is doing well after her transplant. I hope that your mother is doing well also.

Keep encouraging your sister to stay physically active. Although it's easy to put exercise on the back burner when you have a busy life, exercising will help her feel and do better. If you're living in her community or know someone who does, encourage them to walk with your sister. It's much more fun to have someone to talk with while walking and if you want with someone else, you help to keep each other motivated.

I wish you and your family a wonderful 2010!