I wish someone had told me...

[RuthWells]

I'm very grateful for this thread -- more, please!

[susiesue]

I wish people wuldn't say 'Well at least you havn't got cancer or anything nasty!!!!
I wish people would stop asking me how I am without really wanting to hear one of the shit days.
I wish I had known it was coming so I could have got further down that wish list of Travellin - it's soooo hard with 2 kids and husband.
I wish I had realised my power as a patient earlier instead of just accepting whatever they say.

[cherpep]

I wish someone would have told me - "You're not going to get better". 

[kitkatz]

I wish the doctor had straight up said to me:  "Hey this disease ESRD just gets worse, you are not going to get better. Prepare for life to suck sometimes!"

[Sunny]

I wish someone would have been honest with my about how this disease will insidiously eat away at your energy level till one day you wake up and realize you can't do even half the things you could 5 years ago.

[Lucinda]

Hey YL Guy - Welcome.  I have been on dialysis three months and the only thing I really wish is that someone had been more positive about this not being the end of the world. I had a bad allergic reaction in the beginning of dialysis but I certainly don't think it is nearly as bad as I was expecting.  Sure there are restrictions on your lifestyle but it is still not the end of the world and I don't generally tell people I am on dialysis and most wouldn't even know.  I found getting into a routine was the biggest hurdle but now it is just another thing I have to do like washing my hair.

I have problems with high potassium so I wish someone had told me how suddenly your heart can stop if your potassium goes too high but aside from that I just wish they had wished me well - not overdone the "life sentence" bit. 

[YLGuy]

Hey YL Guy - Welcome.  I have been on dialysis three months and the only thing I really wish is that someone had been more positive about this not being the end of the world. I had a bad allergic reaction in the beginning of dialysis but I certainly don't think it is nearly as bad as I was expecting.  Sure there are restrictions on your lifestyle but it is still not the end of the world and I don't generally tell people I am on dialysis and most wouldn't even know.  I found getting into a routine was the biggest hurdle but now it is just another thing I have to do like washing my hair.

I have problems with high potassium so I wish someone had told me how suddenly your heart can stop if your potassium goes too high but aside from that I just wish they had wished me well - not overdone the "life sentence" bit.

Thank you for the welcome.  This has turned my life upside down.  I worked in a veterinary hospital.  My doctors told me that I can't do that any more.  The risk of infection was too high.  My arms are pretty scarred from bites and scratches and they did not want my fistula compromised by an animal bite.  In addition to my career being over my energy level has dropped significantly and I get dizzy spells quite often.  Sometimes I can relate to a part of a song Paul and John wrote awhile back:

Yesterday,
All my troubles seemed so far away,
Now it looks as though they're here to stay,
Oh, I believe in yesterday.

Suddenly,
I'm not half the man I used to be,
There's a shadow hanging over me,
Oh, yesterday came suddenly.

[willowtreewren]

Dear Marc,

This must be so hard on you. I do understand about the possible injury to your fistula from dog and cat bites. You could easily bleed to death! Not good.

Regarding your energy level, you might want to talk with your neph about other dialysis options. Evey patient responds to dialysis differently. PD may work better for you since you would be dialyzing daily.

What an appropriate Beatles song for dialysis.

Best wishes,
Aleta

[tyefly]

  wow    are you guys saying that we cant be around dogs or cats anymore once we start to hemodialysis........   I am not dialysising yet  but   I am getting closer......  will they want me to get rid of my dogs..... I love my dogs  like most dog lovers..... and they keep me active..... I walk them most of the time twice daily on the beach....  for at least hour or two.....  If I didnt have my dogs walks  I would really be depressed...... 

[YLGuy]

I dealt with injured animals.  Some of them did not know me so well.  Some were in in pain and I had to hold them to x-ray them (broken limbs). Some I had to inject. Some were just scared but still needed to be removed from their cages and a few were just plain mean.  They would try and bite as their way of saying "ouch!" that hurts.  Most of the time a person can be safe by using proper holding techniques but sometimes they would get me.  I could not have any pets because my boys are allergic so I was never asked to not be around my own pets.  By the way...you have some beautiful dogs!

[Hanify]

No, Tyefly, your dogs are safe.  They won't ask you to get rid of them.  You might just need to me much more careful with staying clean.

[pamster42000]

that the IVIG treatment was an option for my daughter, Sarah at the Cedars Hospital, in California. In 2004 they were approved by Medicare to provide the treatment to lower antibodies that develop from previous transplants, blood transfusions etc Sarah was on the waiting list for a kidney in 2005 and she had a living donor who matched except for Sarah's high antibodies. Apparently the transplant center she was listed at was trying to start there own protocol for the IVIG treatment and Medicare denied payment for treatment there. If someone would of told us about Cedar's we would of taken Sarah there. Instead Sarah passed away Oct. 1, 2007 waiting for the gift of life. No Dr. or health professional informed us to try Cedar's. It's just sad that money and making a name for yourself is more important than a human life. By the way I found out myself doing research on the internet about Cedar's. I just found it to late to help Sarah. I know you should have trust in your Dr., but don't completely put your life in their hands. Do research on your own and don't take what your Dr. tells you as the gospel truth.

[marti824]

Hey YLGuy,

Welcome to the site.  I'm fairly new here myself, and have found a world of support already. The beginning of treatment for me was horrible, I understand the turning your life upside down part, it will do that, but it does get better.  MY dialysis came on very quickly.  the doctor told me that my numbers were going up and in a few years I'd most likely e on dialysis.  one month later, there I was. So, it's been about a year and a half now, and I've gone through all the stages, denial, anger and a few others, and now acceptance.  I go to dialysis three days a week, and it's just become a way of life, until i can get a transplant, this is how it is going to be. but thinking abut it, it's better than the alternative.  at last i can sit here and complain about it when I want to.  Use this site, get it out of your system, you'll be able to deal with it a little better.

[kitkatz]

I wish someone had told me that acceptance of a disease is cyclical. You go through different stages and things happen and you have to accept things all over again!

[willowtreewren]

I wish someone had told me how emotionally difficult it is to have a donor denied. You try and try not to get your hopes up, but it's almost impossible not to. Then the rug is pulled out from under you.

"Next time" just doesn't cut it for staving off depression.

[kitkatz]

I wish someone had told me getting listed onto the kidney transplant list by a medical team is like winning the lottery.  Ain't going to happen unless the stars are in alignment with Pluto or some such malarkey!

[Yvonne]

I wish the Dr. had performed more tests on John 7 years ago when he first went to the Dr. with blood in his urine, his cancer would not of spread from the prostrate to the kidney and bladder.
I wish we had not moved to this out in the sticks place.
I wish we were still living near our families.
I just wish I could turn back the clock to when things were normal

[kristina]

I wish the Dr. had performed more tests on John 7 years ago when he first went to the Dr. with blood in his urine, his cancer would not of spread from the prostrate to the kidney and bladder.
I wish we had not moved to this out in the sticks place.
I wish we were still living near our families.
I just wish I could turn back the clock to when things were normal

Reading John's story reminds me very much that I wish someone had told me that the Hippocratic oath which some doctors once took only applied to those medical institutes of medical education who decided to use this oath. It was never obligatory. The Hippocratic oath whilst largely made up of good sound principles also contained a clause which we would call today a loophole. It is not obligatory to take this oath in the UK  and it is left to the doctor's own moral principles.
I also wish someone had told me that specialists divide their work into two clear areas: firstly research interests (trials, papers etc.)and secondly their clinical treatment of patients. Today these two areas of interest go hand in hand through the career of every specialist. Because of my medical history and rare disease of MCTD/SLE I would not being considered as (trial) research material for one reason or another. Therefore, all that is left for me is what treatment a specialist will offer me. This always follows safe-guidelines and so far one treatment offered has not been successful. Many specialists, even eminent rheumatologists shy away from my medical situation because I am not a positive gain with regard to the two areas of their work mentioned above. I have been searching for a specialist to give more thought to my medical situation in its entirety and to come up with new possibilities (variations) which might be either successful or help me to keep my kidney-function for a little longer. I don’t quite know how to explain this better, but I feel I need urgently a specialist who takes that little extra time in thinking in order to take a small step further without being too reckless or irresponsible.  Like the professor whom I met after my first renal failure in 1971, who gave me his personal opinion about keeping a vegetarian diet and it assisted my kidneys so well until recently when another flare-up started to deteriorate my kidneys. Because of my medical history, rare disease of MCTD/SLE  and complicated disease pattern I fall outside of normal trial and research treatment. Perhaps I am asking too much, perhaps I am looking for a character that does not exist anymore in the medical world, but I owe it to myself to try and find such a specialist.
I wish I would have known much earlier how very difficult it is to find a specialist in a medical world where the Hippocratic oath is hardly considered anymore...



EDITED: Fixed Quote Error - Bajanne, Moderator

[Ken Shelmerdine]

I wish that when the NHS did a hard sell on me to do APD, that apart from the positive aspects and the great freedom it allows you to live quite a normal life that they had told me a few facts about the downside of this mode of dialysis.

Although they did mention the hazard of peritonitis they failed to mention what an agonising and dangerous infection it is. They failed to mention that pd can cause serious intestinal lesions which can lead to cronic bowel problems. There is a young guy a my centre who from complications of pd induced peritonitis had to have a colostomy.

Thankfully during my time on APD I didn't develop complications but I did get peritonitis which was one of the worst experiences I've ever had. I'm not trying to put down PD as it worked very well for me for a time and is successful for many people. I just wish that in the UK they'd give new patients a more ballanced outlook instead of a kind of sales pitch approach. 

[Savemeimdtba]

I wish I had gone to the Dr. sooner when I knew something was wrong...
I wish I had known that Hemo wasn't the only option
I wish I had gotten educated and taken my kidney disease seriously before it got too late..

[TeenHatesDialysis]

What I have learned.....

My 2nd daughter with kidney failure was listed prior to her 18th birthday prior to dialysis so that she could accumulate time on the list as "inactive". The Stanford team pushed to list her, but her team of Nephrologists in Colorado would never have considered it and were even shocked when they heard that Stanford was listing her as "inactive".

Research various hospitals. US News and World Report list the best hospitals for Kidney disease for kids and adults. Interview transplant teams at several of the top hospitals. One of our friends had 2 kidney transplants fail in the past year. Then researched the hospital success rate and it was less than 70%. Lucile Packard at Stanford has a superior 5 year success rate. The childrens hospital where we live is top for treating cancer in kids, but bottom in successful kidney transplants.

Some hospitals allow altruistic living donors and some do not. There are many people that want to be altruistic living donors, check out www.livingdonorsonline.com Make sure that you are at a hospital that will accept a kidney from an altruistic donor.

Dialysis crashes. Taking off too much fluid or taking it off too fast cause my daughter's bp to crash and she will pass out. The nurses are not allowed to take off more than 1500 ml from her without my consent.

There are some great doctors, great nurses, great social workers and great nutrition specialists and there are some that should be FIRED! My daughter was extremely lethargic due to a vitamin D deficiency and I had to provide tons of documentation that Vitamin D deficiency could cause lethargy before and get my daughter's PCP to demand a Vitamin D blood test, because the Nutrition specialist argued that Vitamin D deficiency does not cause lethargy. Finally, my daughter was tested, extremely Vit D deficient and then supplemented and finally has some energy.

The social worker at one hospital is amazing and provides lots of useful information. The social worker at the other hospital is useless. At the very minimum, each social worker should direct dialysis patients to this site.


I wish I would have found this site sooner. I have learned so much from everyone here. I know what to ask the doctors and nurses and tell them to do their research, because the hospital is being paid $30,000 per month for my daughter's dialysis treatments and I expect them to do their jobs. I have learned about patient rights and push for the best care possible for my daughter.

Thank you to all of you. I never could have made it this far without your support.

[Sunny]

I wish someone had told me that Stanford has such a good success ratio for kidney transplants (96.5%),because they thoroughly weed out their transplant recipients before transplantation. I know, I've been on that list 5 years and with type O blood and high PRAs Stanford has pretty much weeded me out even with their new IVIG treatment. So when looking at hospital transplant success ratios, consider the issue of who that hospital is willing to transplant. (sorry for the negativity, but after surviving 8 yrs with crappy kidneys, the Stanford coordinator recently told me I probably have another 4 to 5 yrs to go and maybe I should start looking at another transplant hospital. Well I say, F___ them!  Them and their precious success ratio!).

[kristina]

Thanks Sunny for your post. It made me comprehend that perhaps
the reason why all the "best hospitals with great treatment success" are not answering
my pleas for help and stop my MCTD-SLE-flare destroying my kidneys further, because,
they might have been "weeding me out"
after studying all the medical evidence I had sent them
in my hope to receive treatment to stop this flare-up and keep my kidneys.
It they have to keep up their success ratio so fiercely,
they obviously cannot risk taking on a vulnerable patient with
rare risk factors involved.

[Sunny]

Very possibly sad but true Kristina. I hope you have good luck regardless in your efforts. I'm not willing to give up yet, you shouldn't either.

[kristina]

Thanks Sunny, I hope you have good luck as well.
I am not willing to give up either. Let's hope for the best!