You have neuropathy, hearing loss, and alports. Young lady we are in the same boat, I have been without usage since 8/87 was transplanted in 1988 and now back to original equipment and dialysis since 1998.

You've had major warnings that you had alports long ago and we need to make those signs known early so the people can quit abusing their bodies early enough to reduce the alport failure rate.

I'm currently writing a book and anyone who has a story, symptom, new ideas for dialysis comfort, Dr. Stories without names please, Dr. Cense will be his name anyway, how about your ideas and thoughts about your future?

I'm also using the doctor/nurse and patient/customer relationships, duties, attitudes, job enjoyment, how about customer relations if any, and if not why.

Here are a couple questions

do you or have you ever considered yourself a customer?

Do you or have you ever disagreed with the dr or nurse and actually changed treatments? If so explain briefly please

how do you cover your hemo dialysis sites when the needles are removed? Clamps, tie straps, gauze pad and colored horse leg coban.

Yes we fold two 4x4 pads in 1/4's and cover the sites, then wrap our arms fairly tightly with the leg wrap which is adhesive elastic bandage. It saves and average of 15 minutes depending on how much you bleed. If the nurse doesn't want to try it, you can ask the Dr. Or just do it like I did with a different nurse or a tech because you can't do it by yourself(the biggest issue in the medical world is independence

anyway, whew sorry didn't mean to make this so long but I want to gain some info.

Thanks so much, hang in their, get on that list!!

I've tried several attempts to reply and am not sure that any were successful.

Why did your first transplant fail? Do you have alport's? Im 42, what time frame am I looking at (guess wise) before dialysis begins.

Did you have low blood pressure? If not,,any guesses why I do?

Any hints or helps for me to be doing now to help myself physically.


I'll try and help you and I hope you'll do the same, right now im trying to see if this reply goes through.

Kimmy k........
P.S. Im also going to write a book,,from a woman's perspective. My son had a genetic translocation when born. At the time they did not know what it would effect..Some mention of kidney possiblilities.
I now know to have him tested......And I want to help other females who have children . So that we might not only deal with our disease, but possibly, unfortunately, what we've passed on.

Thanks,
kimmyk

Im a 37 year old male with alports syndrome, with a history of a renal abcess, neuropathy, and hearing loss. It runs on my fathers side of the family, pretty rampant. I am currently taking meds to control high blood pressure, also take a water pill, have a low hemotacrit level so I get aranesp injections.

Was curious if anyone has more information on this disease, though I feel I know a little about it...There doesnt seem to be much information available.

Also have unexplained thorasic back pain??? Anyone else with this??

Never realised neuropathy was part of alports ...Was always told it was caused by a toxic load of an antibiotic.

There is not an awful lot of info on alports....However, I do know that in your case it is hereditary, which you know by now. Its a genetic disease.......X chromosone linked.

It usually runs its course in males by the age of 40-45.....Resulting in dialylsis and/or transplant. There has been success with transplant and it will cure alport's for the kidney. Of course you'd never get your hearing back..Etc.

The back pain,,,,,,,i have both flank (rib cage) and lower back pain, all I know is it does come from this. From what ive been told its really pain that is radiating from inflammed kidneys.

I still cant find anyone with low blood pressure, thats the key link that is not making sense in my dx. Altho im definitely deaf...Etc......And kidneys have the blood ,prtotein,,,,,almost all the kidney diseases make your bp go up, such as yours has...But not mine!

I search the web to find out material about alports. If you find it scare, you can prolly get a better idea of just looking up neuraphathy first........Then adding what you know about alports. A disease that your born with , that is incurable, progressive...Causing kidney damage as it goes.

Im so sorry that you have to go thru this, and im so frustrated that I cant find anyone with low bp.

You have alports, you need to understand that it can/will affect your cardiovascular system.......And if you dont cut ur phosphorous the calcium in your body will basically not go to your bones, where needed...So you need a calcium supp. Im not sure how much you know?

Also the disease can cause fatty deposits,,cysts in the liver,,,,joints, muscles.And you may experience so spinal fractures...Example (neck)


hope this helps..This is all what can happen,,everyone is diff. Have you asked what your prognosis is?

Kimmyk

I am a 43 yr old lady who was diagnosed with "kidney disease" as a young child. I had my daughter when I was 20 yrs old and was told at the time she would not inherit my disease. She was diagnosed at 18 months old. I then had my son at 29 yrs of age who was also diagnosed at 18 months old. Although I always believed my son had a hearing problem it was not confirmed until he was six. Then we were all tested and confirmed to have alports. Presently, my function is 26%, my daughter who is now 23 has 80% and i'm no too sure about my son who is now 14. On his last visit to the renal specialist I was told his function was still fine but his blood pressure had increased leading to an increase in his medication.

I'm really keen to hold off on the dialysis and as the disease is far more aggressive in boys and my daughter's function is far lower than mine was at her age (and she has not had a child yet), I am very worried for all of us. My specialist is very pro-active. He has me taking various medications and vitamins but i'm really keen to talk to anybody who knows much about diet?? Low salt, low protein, low sugar - but I need more. I'm thinking about the raw food diet?? Any comments.

As for the low blood pressure, mine was always reasonable (90/60) for many years. During the past five years it sky rocketed causing me to lose function. It is now well controlled at around 90/70.

What level of blood pressure do you have?

:(
first let me say im so sorry. I do know the fear. I however, have recieved my biopsy results and even the doctor was amazed,,no alport's. I wish it were that simple though. I have every symptom for alport's and the biopsy showed a "lesion" that is currently resolving itself. Also the membranes of the kidneys have been thinned and that is what has caused the protein spillage.

I was then sent to a urologist. I didnt know I had a bladder problem but a simple ultrasound showed I was retaining urine. So off to urodynamics where I discovered the nerves in my bladder were dead?? This must be why my kidneys were very impaired,,,,,i thought they simply werent producing the urine. Off to a neurologist and now they say ms.

Carmel,,,,,,,,i dont know your faith or ideas, however, since I had studied much on iga nephropathy due to first dx, then they pretty much told me "alports" I studied that also. Im now into ms things but let me tell you I still have all of your symptoms and id love to continue to try and help you , as I am an "infoholic" and I believe god causes us to know things at certain times to help others.

Alport's is very scary. Women aren't known to have it as often, however the age of 45 is a very big "tilt" age for this disease. Your own kidney function concerns me and i've been where you are as far as worrying about renal shutdown. I am worried though becuz you have to remember that even though we do not want dyalysis (who would?).....That we have to first accept it to get a transplant. If we wait until we are too old, or have other health issues (like me) theres not much chance we will get the transplant. Also, did you know that if you have a "live" willing donor you can skip dyalysis and get the transplant???????

Medicine has came a long way, but is still so short in helping us. I had very low blood pressure,,,,,,,sometimes 80/60, they were concerned tht that they'd not be able to give me an ace inhibitor to "guard" my kidneys. Thankfully (i think)....My bp rose after yrs of dropping. Now I am on linosopril. It seems to be getting higher..........

Ive looked into the lemonade cleanse,,and roger macdougall's hunter/gatherer diet. Keep in mind carmel that even if I have ms and you have alport's that we have much in common. B-12 is such a big thing with all of these autoimmune diseases. Please consider adding it and fish oil (omega 3) to your diet. I never believed in omega 3 however, they have proven , as in iga nephropathy that it can stave off progression as much as 2 yrs.

Oh boy do I know the low sodium routine! I swell if I get hardly any salt!!!!!!!!!!..................Im working on devising a diet that doesnt go as extreme as roger macdougalls, and that provides much needed nutrition. Its a personal diet , but as I curtail or change,or find new recipes ill share with you, if your interested.

Right now, this would be an example of my daily intake.
Breakfast
1 cup coffee(bad)
1tangelo

lunch
egg salad with onion and celery
(carmel it is important to add protien. Low protein diets for renal patients always say that the protein that is allowed must be consumed by the patient, so as to avoid muscle wasting.....This is why I add this protein.

Snack/tangelo, or carrot sticks, and fruit juice (nutrition reasons)

water (limited but needed)

dinner
flounder drug through lemon juice (not salted) and seasoned with no sodium creole seasoning.
Rice (green onions or something nutritious for flavor)
green beans.

I hope that youd like to contine to post with me, as I will discover more about all of these conditions. Unfortunately im not done with the kidney issue and its really a wait and see type of thing, given the possibility of ms. I have to cath every two hours.

I am thinking of your children and I also have a child.......Not tested but he had a chromosone swap while in my womb. I will need to make certain he is checked , I have suspected some hearing loss.

Worry about you so that you can be around to help your daughter!!!!!!!!!

I will update you with any promising things I find as I explore alports/ms/renal diseases in general.

Ive been where you are and its scary, my heart indeed does go out to you. And my prayers.
Remember: im here!

Love,

Hi there

i'm sorry I have taken so long to reply I have only just checked this site. I was glad to hear you do not have alports but sorry to hear you are still not well.
You are right I need to focus on myself as well, I need to be here for my children.
I recently saw a world-wide respected chinese medicine doctor who told me I was a very strong person who would live for a very long time - he has given me hope!
My family and I are trying to eat really, really well. I have known people with other conditions (eg cancer) to do amazingly well on the raw food diet and while this is difficult to follow especially for teenagers - we are all making an effort to move in that direction.
I agree that just when you need something/information/someone it quite often happens. I was brought up roman catholic but have drifted away from the chuch over the years. However, it seems every new friend I make lately is very committed to god! I think i'm being guided back in that direction.
My renal specialist is very proactive - i'm taking 4000 mg fish oil, b12, folate and caltrate along with several prescription drugs.
My daughter has been seeing my specialist for a few years now and my son is going to start seeing him next month. I'm very happy about this as I have a lot of faith in him.
Regardless of what is wrong with you it might be worth trying the raw food diet or at least tying to include more raw food. (i'm feeling inspired now and i'm off to make a carrott and beetroot juice for the family - not my favourite drink but it certainly gives you a boost).
Thank you so much for your reply, I will keep in contact and will also pray for you.

Take care
carmel

hi kim
my name is lisa im also a carrier of alports, when I was pregnant with both my boys my blood and protein in my urine went through the roof and blood pressure rose.... Now that im not pregnant my blood presure is on the slightly low side, I also have hearing loss but only slightly.. That stabbing in the back you refer to is some thing that I have had since having my second child.
You talked about an inhibitor, this is a medication that they want to put my son on who is only 20 months, I going to do some looking into it, yes is does lower blood pressure so what is it going to do to you

I have heard that mercury in omega-3 fish oil tablets can make chronic conditions worse. So make sure you take a clean source.

my dad and all 3 of his brothers have alports syndrome, my dad recieved his 1st transplant over 20 years ago. he recieved his 2nd transplant last year. one of my uncles has had several transplants and his body has rejected all of them. he has been on dialysis for about 30 years. 2 of my cousins also have alports. 1 of them had a transplant last year as well.