suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Postby simon baelz » Wed Jul 21, 2004 6:52 am

I am Simon, aged 50+, married to Val, who has 1/5th of a kidney, and still manages to keep smiling when the pain and exhaustion is not too great. :) We live in the Vale of Glamorgan, very close to a RAF base. We have two daughters, Naomi, aged 12 going on 22, who has a severe speech & language disability, Bronwen aged 9 going on 16, who is epileptic and has hypermobility in all her joints, that's double jointed with attitude! We have two dogs, a greyhound and a lurcher,both rescue dogs. :) Val & I settled here when I left the RAF, so we are the dreaded english living in wales. both daughters were born in Wales, so claim dual nationality, very confusing when the rugby is on :!:
Val has been carrying this kidney problem for over 8 years. her defective kidney was removed 5 years ago, and then we were told that the remaining one was on the way out.It came as a big shock.
simon baelz
Posts: 3
Joined: Mon Jul 19, 2004 11:07 am
Location: Vale of Glamorgan

hello guys

Postby jazzplayer » Tue Jul 27, 2004 7:48 pm

Name Keith
Town Grimsby
country England

Kidney Polysistic :(

I was born with polysistic kidney as everyone is my mother was on a machine for twenty odd years sadly she is no longer with us but battled with her kidney problems head on i just hope i can do the same in the style she did im not on a machine yet they have told me i have around five years left with any luck before needing one i have my bad times
even now and get a lot of pain but i want to keep working as long as i can but im finding it harder each year my job involves a lot of walking around 10 mile a day and im outside all the time so if i am feeling off its hard to work.i think this web site is great as i can let of steam if im down its better than taking it out of the wife.
Posts: 10
Joined: Wed Jun 30, 2004 4:55 pm
Location: Lincolnshire

Hello Everybody

Postby Bruce » Thu Jul 29, 2004 1:38 am

I have never been on a bulletin board before, so I am sort of nervous.

I am a 60-year-old retired teacher and have been diabetic for the last 20 years or so. The diabetes over time has caused neuropathy in both legs and feet, severe retinopathy, charcot joint syndrome and, now, kidney failure.

I have not yet started dialysis, but yesterday I had the CAPD catheter inserted and I start training next week. This is all brand new to me and franky is somewhat scary. My nephrologist's plan is for me to begin CAPD and get on a transplant list.

I'll let you know hos it goes.
Posts: 65
Joined: Thu Jul 29, 2004 1:21 am
Location: Long Island, New York

Postby Kaz@Japan » Thu Jul 29, 2004 3:20 am

Greetings! :D

I am a Japanese female in my late 30s. I have been diabetic for about 30 years and also on kidney dialysis (HD) for about 1 year. I would like to hear about HD in various countries and I would be happy if you could tell me what it is like to take it in your country: How long on average the pattients take it, what kind of jobs they have, or whatever, any differences or uniqueness you find about HD in your country. I would like to read/exchange lots of opinions with you on this board. :P
Posts: 7
Joined: Wed Jul 28, 2004 8:25 am
Location: Japan

Postby pamom2 » Wed Aug 11, 2004 2:57 am

I'm Kathy from Pennsylvania. 42 years old. ESRF since October 2003. Started on hemo but now on the cycler machine at nite. Diabetic for 30 years and that's what caused my failure. Sister a perfect match for transplant. Just waiting to iron out a few problems before we can go thru with it. Married with 2 boys 17 and 15. Very supportive family. Don't know what I would do without them. I'm happy I found this board.
Posts: 23
Joined: Tue Aug 10, 2004 11:42 pm
Location: Pennsylvania

Postby oldborris » Wed Aug 11, 2004 8:15 am

Posts: 266
Joined: Fri Apr 23, 2004 1:01 pm
Location: Fulham, London, U.K.

Postby GSinCA » Tue Aug 17, 2004 10:15 pm

Hello everyone

My name is George, I am 54 years old. I live with my girlfriend of 7 years in Southern California. I have ESRD and lost my kidneys in Sept 03 as a result of a diease called "Goodpastures Syndrome". I currently undergo hemodialysis 3 times a week and have started the process to getting on the transplant list. I am not working at the present time but am looking for a part time job to break up the boredom of staying at home. Hobbies include photography, motorcycling, and losing money in the stock market :( . I am thankful I found this website and I have learned a lot reading the posts.
Posts: 9
Joined: Sat Apr 24, 2004 11:51 pm

Postby oldborris » Wed Aug 18, 2004 6:52 am

as everyone is my mother

"Eats, Shoots & Leaves: The Zero Tolerance Approach to Punctuation!" would help here.
Posts: 266
Joined: Fri Apr 23, 2004 1:01 pm
Location: Fulham, London, U.K.

Postby Tara in NC » Wed Aug 18, 2004 12:07 pm

My Name is Tara and I live in North Carolina, USA and I have a daughter Hailey that is ten and has been on PD for two years. She has hypoplastic kidneys. We have been on the transplant list for a year and seven moths now however most of that time has been spent on hold due to not wanting to take meds and not wanting to eat. We tried a g-tube for meds and tube feeding but all we did was get sick for a year. Now she has a j-tube and has gone from 19 kilos to 23 kilso in 6 weeks. She has been in a program for two months about the eating and meds and it has seemed to help she should come home Friday. And as of yesterday are active agian on the transplant list.
Tara in NC
Posts: 1
Joined: Mon May 03, 2004 7:13 pm
Location: North Carolina, USA

Postby Jenni » Fri Aug 20, 2004 3:42 pm

Hi everybody! :D
I recently put up a questionnaire asking for help, but didn't introduce myself. What bad manners! My name is Jenni and I'm a student at Sheffield University. I dont have any major renal problems, (feel like a bit of a fraud!)but have them monitored as a precaution due to a spate of nasty infections a couple of years ago, and a low ph. (which I blame on the Depo provera injection, never EVER have it) :x I have decided to base one of my studies on individual's perspectives of living with renal failure, as it's a subject close to my heart, as my late nana was on Haemodialysis for years, and resented the infringement it was on her travel plans (she was a proper globetrotter!)
As one of her care network, i still want to understand more.
This board is amazing, and I'd recommend it to anyone living with renal failure.
Take care,
Love Jenni xxx
Posts: 6
Joined: Thu Aug 19, 2004 5:22 pm
Location: Sheffield


Postby Mike1975 » Sat Aug 28, 2004 2:29 am

Whatups plp my name is Mike and I am writing from Canada.

I use to visit this BB long ago....

I have had kidney failure at the age of 25 and did not see this coming at all. WOW, what a shock! I did not see how serious this is and thought this might pass like the flu but I needed treatment and the age of 28 I was on Hemo.

My creatine level went up, up & up while on hemo for one year and then my wife :wink: donated her kidney to me :lol:.

Now 6 months have past since the surgury. I hope that this freedom will last for a long while so I can see my baby can grow up.
Posts: 1
Joined: Thu Aug 26, 2004 5:16 pm

Helooooooooo Mike ;)

Postby Elaine » Sat Aug 28, 2004 4:11 am

Helo just read u post :lol: So nice to hear somethin good come outta such bad experiences etc - renal failure etc. :shock:

My daughter has been on p/d 18 mnths & now Haemo 9weeks after bad peritonitis :( She is only 16 and had it soo tough past 3 yrs. She is suspended from transx list until kidneys removed in ? next few weeks? to help proteinurea.

Glad to hear that u have been transplanted and that life is better for you good to see :lol: thanxs to u generous wife and yeh u wanna see u bay daughter grow up too ahhh bless ;)

Just sorta posts nice to see peopel re-visiting site wen transplanted and encouragement to others' that there can be light at end of the tunnel ;)

best wishes 2 u & u family Elaine UK ;) :lol:
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Heloooooooooo Mike

Postby Elaine » Sat Aug 28, 2004 4:15 am

OOPS!! presuming baby daughter !!LOL suppose got 50/50 chance of being a girl!!LOL maybe a boy??

Anyhow they very precious to u i'm sure whatever your child is. :roll:

best wishes Elaine UK ;)
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Postby Michele in TN » Sun Sep 12, 2004 2:05 pm

Hi everyone. I am Michele and I live in Nashville, TN. I am 28 years old. I used to post on the old forum but haven't in a few months. Gosh 8 year olds can keep one busy. Not to mention how great I felt once the quirks of pd were worked out.
Now I've been transplanted (7/29) and I guess I'm feeling pretty down because I don't quite feel as good as I did on pd. I get so tired so easily. It has been really rough on all of us. But I knew I needed to check in and let you all know what the good news was. Atleast fingers crossed on that.

I love the new set up, to!!! :wink:
Michele, 30
Mom to Emily, 11
Wife to Chris
Transplanted 07/29/04
Creatinine 0.9 2/07
stopping prednisone due to severe renal osteodystrophy 11/06
Michele in TN
Posts: 53
Joined: Sun Sep 12, 2004 8:21 am
Location: Nashville, TN, USA


Postby jviren » Sat Sep 18, 2004 1:00 am

I'm Jan, age 46 but feeling arbitrarily age 31, with FSGS since age 15 when I seemed to wake up one morning with swollen eyelids and ankles and feeling tired. Had an open kidney biopsy which led to the diagnosis of Nephrotic Syndrome at that time. Suspected cause of my disease: strep throat, but we can't be sure. I was put on prednisone and Lasix and Aldactone, as well I some other medications I can’t remember. When I was a senior in high school, I was at the University of Minnesota Hospital for 3 months while they attempted to arrest my disease with a chemo drug, Cytoxan (it didn’t change anything). When my son was 2 years old, I had a bout with swelling that went out of control—I couldn’t even wear my husband’s clothes—and I was in the hospital for 10 days getting albumin by IV.

Anyway, I've led a pretty normal, healthy life except several bouts of swelling every few years, which brought a slight decrease in function each time, until just recently. I remember when my serum creatinine reached 6 about 15 years ago and I was told to prepare myself for a transplant in the near future. At that time I had been taking 80 mg. of Lasix every day just to keep the edema down and, of course a potassium supplement to keep my electrolytes balanced. Interestingly, around that time I woke up with my whole body cramped up in one giant Charley horse from dehydration. My doctor told me to discontinue Lasix and I haven’t taken it on a regular basis since. I really have no edema unless I’m sitting for long periods or get a viral infection. Also at that time, my serum creatinine got much better—as low as 2.1. Since then it’s been creeping up again (now about 3.8 to 4.1 or so) but I still don’t need Lasix. Having fought edema so much, I hate it!

In January 2002, I had three viral infections in a row. From those, I had another bout of swelling which brought my kidney function down to where I am now (about 25%). Because my creatinine clearance was 19 at the time, I qualified for the transplant list. My sister has gone through the evaluation to be my living donor (she matched all six antigens), which is an amazing gift. So far, I don’t need a transplant, as my function has remained the same for over a year. I just had my parathyroid glands removed because of a high PTH and blood calcium level so I am taking oral calcium by the ton (hycalcemia has been a battle) and Calcitriol (1.5 mcg. daily), which I’m told I’ll be able to reduce soon. For medications, I take Atacand (8 mg.) to keep my blood pressure low, Zocor (40 mg.) to keep my secondary cholesterol level low, and Levoxyl for hypothyroidism, along with iron for anemia (it’s under control). At meals, I take sodium bicarbonate (1300 mg.) and Renagel (400 mg. at lunch and dinner). My blood potassium and phosphorous levels seems to be under control right now, although my BUN is in the 60s. I am on a low sodium, low phosphorous, low potassium, low protein diet—which really isn’t too bad. Don’t know how long this journey will be but right now I feel good. The only real difference I’ve noticed in myself since my function went down is that I tire more easily and have less energy. I tend to be a high energy person so my husband says I’m down with everyone else now!

I edit a literacy journal, Wyoming Journal of Literacy, and am writing a young adult mystery novel. My main love and occupation is directing a Christian ministry (EquipNepal) that works with people in the kingdom of Nepal. I run a sponsorship program for orphans and other children and fundraise for other worthy projects—it’s a very satisfying and awesome job where I get to use a lot of my gifts for the Lord. I also enjoy writing music and playing my guitar, singing, photography, and meeting people. I am a teacher and writer by education. My husband, Bud, is a mechanical engineer runs a consulting business our of our home, designing conveyor systems for bulk materials handling. We have a son who is 23 years old. We live in Northeastern Wyoming by Devils Tower National Monument (you know, in Close Encounters of the Third Kind) in a town that is all of one little country store on the highway.

I would be happy to communicate with anyone about this common link of kidney disease because I'm finding it to be very helpful.
Posts: 1
Joined: Fri Sep 17, 2004 3:31 am
Location: Northeastern Wyoming


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