Explaining why I ask so many questions and thanks very much for answering them.

[kristina]

Dear friends,
I just wanted to let you all know how very grateful I am  for the answers you have given to my many questions. I know I have been firing questions one after the other about end-stage renal failure, Dialysis and transplant but this is my usual reaction to approach a problem. Where I live, doctors see you for about seven to ten minutes and their answers are short and by the book. They neither have the time to give in depth answers, nor can they provide me with those bits of information which one only gets by communicating with other patients. . Also doctors, because of their professional position cannot be as frank as they might wish to be. Through IHD I have learned a great deal about end-stage renal failure, Dialysis and transplant and this helps me to become calmer and it also takes the mystery and fear away from something which I know I will eventually have to face. I am sorry I cannot be as helpful as those who have already answered my questions but I haven't reached the point of their experience. Before I knew about IHD I felt completely isolated and alone and frightened about my future. I am now alert and on-the-ball, but more relaxed, calm and more in control, which for me is a much better state of mind, which I am very grateful for. I know my questions may seem sometimes sharp and very much to the point without any frills, but when I get over the shock of something, this is how I deal with it in order to keep myself together and not remain in the dark worrying myself to bits. There are general things patients experience and  individual  experiences, and it is the individual experiences, which one hardly ever learns about from a doctor, these one only learns through communication with patients and  IHD covers both of these elements greatly, but in particular the individual aspects. So if I may, I would like to carry on firing my questions and I hope that as time goes by I can give a little more input from my experience as I go down this road towards Dialysis and transplant. Thank you so much for being frank, honest and  understanding, it is quite wonderful that through IHD on the Internet patients from across the world can so easily and quickly exchange thoughts and experiences, it is truly awesome! Thanks again. 

[RichardMEL]

Kristina - thanks for this post. I suppose the old axiom that "there are no stupid questions" applies here. There's nothing wrong with the search for greater understanding about one's (potential) situation and how best to deal with it, or even prepare... that makes perfect sense to me. The only comment I would make though after seeing a lot of your questions is that I have a feeling you are perhaps focusing on more unusual potential issues that might crop up (the skin thinning is one that comes to mind to me).. I am not saying this stuff isn't important, but I do think it can be easy to get swept up in all the potential bad stuff that can happen which you may NEVER experience or have to worry about even if you do wind up on dialysis, or with a transplant (or both). Sometimes worrying about what if's and maybe's can put stress on a person they really don't need - and that in itself is not health (think blood pressure and the damage it can do to already weak kidneys).

Kidney Failure and dialysis is not fun. Nobody will ever tell you that - and if they do they're either lying, or crazy - or both BUT it's something many thousands of people live with every single day for years on end and, baring small hiccups here and there, do quite well (just ask Zach). The continued improvement in medications and research even offers the possibility that you may never have to deal with some of the things current patients do - I certainly hope so! The key is, i think, to not be afraid or always look for the worst possible outcome. I've been going 3 years almost... sure I've had a few bumps, but in general have been pretty stable and get on with it - like most people.

I think perhaps you should temper your thirst for knowledge with the understanding that some things you are asking about are rare and may never be an issue for you and to keep that in perspective when you consider what your future *MAY* hold.

Just my two cents, anyway.

[monrein]

All the reasons you gave Kristina, are what make IHD such a valuable resource.

[Rerun]

Kristina "you" are why Epoman created this site.  To help others learn about dialysis, ask questions and once on dialysis to vent.

The one thing you can do is to tell others you meet with renal disease about IHD. 

This site rocks!               

Here is the Official IHD Flyer if you want to put it up at your doctor's office:

http://ihatedialysis.com/forum/index.php?topic=438.msg2720#msg2720

[kristina]

Dear RichardMEL,
thanks  for your thoughts. I had to mull this over for a while and I think you make a very good  point. I think that when I was told in hospital feeling very unwell that I was in end-stage-renal-failure and to prepare for Dialysis it was like the rug had been pulled from underneath me and thunder and lightning was crashing around me and the end was not far off. I immediately, as I have previously mentioned, researched for the right diet etc., etc. in end-stage-renal failure. When that was sorted out, the prospect of Dialysis began to haunt me and again I sought answers to questions and then there were questions about transplant – so, I seem to have been drawn into a feverish journey to make sure I wouldn’t make a mistake. Now having read your reply it makes me realize that I shouldn’t overload myself with issues which are a long way off,  and which might never occur anyway but which causes the blood pressure to raise unnecessarily and therefore speed up the process of my kidney-decline. Your comments made me realize that I have to strike a good balance between what I need to know now and what may come along in the future. Thanks again.

[Sluff]

Kristina, your feelings are very real. After being a member on IHD a person gains knowledge about a very livable disease.  Those words from the doctor sounds so devastating (End Stage) sounds like death and I really think the bedside manner in the way we are told this should be changed. Not that we shouldn't be told the truth but when I was told I had kidney disease I thought I was dieing.  I immediately searched the internet looking to learn more about it and the first thing I searched for was the mortality rate. This sounds awful but that was the first thing that came to my mind, how much time do I have.  here I am 3 yrs later and I'm basically still in a holding pattern, still pre-dialysis and proud. We have such a diversity of members here that we really do have the answers to most of our questions, and the courage it takes for the members to take time from their lives already filled with daily life and added dialysis schedules to come here and share their life to help others is amazing. So to sum this novel up, I just want to reiterate what Rerun said and that is IHD exists for people like you.

[BigSteve]

Kristina: It really doesn't matter if you know in advance or, like you, ESRN jumps out at you. I knew for
months that my remaining kidney was weaking and I thought I was prepared for hemo. Well it was
still a shock, being tied down for hours, and tying my life to those 3 days a week. It is an extreme
adjustment in one's life, but I am so gratefull for the help from my fellow IDH'ers.

[Bajanne]

Just read your post and felt very proud of this site.  This is exactly what Epoman set out to achieve.
Thanks for expressing so well what this site is all about.
I remember the absolute dread I had when I was given my diagnosis.  My brother had died just 10 months before after ten years on dialysis.  All I could see was death.  Thankfully, I quickly found this site.  I always used to say that this site was developed especially for me, since it started the month before I found out I had kidney failure.
Epoman and the others really prepared me for what I was going to face.  I went to my first dialysis feeling empowered.  i was aware of what I needed to ask, etc.
Thank God for IHD!!!!

[Sunny]

Kristina,
I am pre-dialysis too, for eight years now.
When I was first told I had kidney failure I thought for sure I was going to die. I started looking up medical information on the internet and saw all the statistics on life spans for those on dialysis and for people with ESRD and I became so worried about it all. But all the information I found, along with this wonderful website, empowered me to find ways to live with ESRD through diet, medication, lifestyle changes, and knowledge. I have learned not to sweat the long-term worries and just do the best I can to live with what I have. It has taken me years to get to this point of acceptance in my life, and maybe it will take you just as long. It helps to interact with people here in this virtual world community because we, as a group, have so much more information than our doctor's are willing to provide. Keep asking questions, others are also learning from them. But don't let yourself worry too much about what may happen down the road. Cherish what you have and know that you can learn to live with kidney disease.

[Wenchie58]

Kristina..
   You are so lucky to have found this site BEFORE everything starts with you.  I found it, quite by happenstance, while I was home healing from my transplant.  There are so many questions I should have asked but didn't even know existed.  I learn daily from this site, even learning from responses to questions you have asked.  So ask your questions..the answers enlighten many of us.

[kitkatz]

There is no way I would have made it through the last three years without my IHD.com family. We walked through some hell and have pretty much come out the other side now. 

[paris]

I must be overly emotional right now!  Reading through this thread has me in tears!  Kristina, your questions are great----keep asking them.   The knowledge and support here makes us all so much stronger than we think we are.  And now, you have a safe place to find out what is really ahead for you because there are many who have already gone down the same path.  Keep posting and learning.  We are very glad you are with us   

[RichardMEL]

Sluff and others - great point about "end stage" - I remember the very first neph I saw. We went in, sat down and his FIRST LINE was "You have two years" (!) I had no idea.. two years to live? two years till dialysis? two years till I get a date? what??? Of course he was a jerk and we changed doctors to a nice one - and I lasted 13 years after his pronouncement anyway so he can get lost! 

The words around dialysis are very negative: "end stage" "kidney failure" "Chronic Renal Failure" etc etc... Of course this underlines how serious our situation is ***BUT*** with treatment options like dialysis and transplant available it in no way has to be doom & gloom!

And Kristina thank you for apprieciating the point I was making with my post. I didn't want to sound rude or anything and I think you got exactly what I was trying to get across - to strike a balance.. so I'm glad.

I also agree with others - this thread underscores exactly why epoman created this site. Well done, IHD!

[Yvonne]

I too Paris have been reading through this thread with tears in my eyes. The Dr. told us John had about 3 months to live in January 2007 when he was taken into hospital with renal failure. As he was still alive in June 2007 they decided with a lot of pleading from me to operate and remove his bladder and one kidney. The kidney Dr. said the kidney that was left WAS SHOT they were his words and I still have the letter he wrote to our own Dr. He is still not on dailysis, his kidney is at 11% and has his good days and bad days.
John has never wanted to know anything about his condition and will not read any of the letters on this site his head is buried in the sand and I often wonder if that is what I should do.
This site has helped me to cope with his condition as I have no one to talk to that can understand the way I feel, they have answed all my questions in the past and I hope will continue to do so. Yvonne the wife.

[kristina]

Gosh! All these replies/comments really do show how incredibly valuable this site is! What is most interesting as well is the fact that it allows carers, partners/spouses and friends, to understand more about the world of renal problems and to share with others their own particular stresses and worries as well. I am sure it is extremely helpful to them as it is to us, the patients, who are trying to survive. It is also extremely fascinating how there is a feeling of community yet we do not meet, we do not know each other as such, we come from all different walks of life and we are all over the world. It is quite special what Epoman has set up! One particular aspect is also very touching and that is when people make a comment, which takes courage to do so, to someone on the site, where they feel that this person needs help, and the others are looking out for their welfare. And the fact that these replies and comments are posted publicly it allows anyone else the chance to make their comment as well and this is as near as I know to achieving the truth.  Many thanks.

[Lucinda]

Your questions are all really valid and your thirst for valuable knowledge will hold you in good stead when the time to start approaches.  I have only been on dialysis three months but everything and everyone here gave me such valuable advice before I started that I coped pretty well when I started.  I had a rough start - which they tell me is pretty unusual - in that I was allergic to the artificial kidney which I have explained in another of your posts.  The most important thing to remember is that starting dialysis will be a real anti-climax to what you might be building up in your head.  I would have to say the worst part of it is the time allocation.  I am doing my dialysis at home now so that makes a difference but they tell me that it takes a good six months to feel comfortable with the process.  I did it at home by myself this week because my husband was away and I actually found it easier to be on my own.  As for your doctor, find someone you can really talk to.  Every time I go to see my kidney specialist - and she is pretty special - I am in with her for about an hour and a half.  I have her email address, her mobile number and if I am ever worried about anything she tells me to call or email anytime.  She gets back to me within two hours.  Having a good relationship with your specialist is really important.  Take care and we are all here for you. xx

[Hanify]

Yes, this site is amazing.  I am on PD but did do haemo for three months at the beginning.  I was petrified of having to go back to haemo cos I hated it so much.  But, after finding IHD, I have since realised there are so many good experiences with haemo - especially home haemo and night time - that I don't need to be afraid if that day was to come.  Having said that, I really do agree with Richard too.  Try not to bring problems forward (is that the right term).  If it hasn't happened yet, don't let it worry you too much.  I so wish I'd known about IHD last year.

[kellyt]

No need to explain or apologize.  Questions are what makes this site amazing!

[MandaMe1986]

Kristina I am glad you found us and you don't need to explain why you ask what you do.  I ask questions that I have had the answer two more then once but its good to ask again sometimes.  I am with everyone I am happy you found this site when you did.   

[Romona]

Kristina, I wish I would have found this site when I was first diagnosed. Everything I found on the medical websites had me scared. People I knew on dialysis and that had transplants had some bad experiences. I felt I was doomed. My doctors that I admire and really like seemed to be so pushy. Now that I visit this site, I am able to cope with things better. Ask all the questions you want. People may be able to put your mind at ease. My husband and sister laughed at me when I packed my bag for a kidney biopsy. A simple out patient procedure. Not for me. But I researched it in advance and knew that there was a chance for complications. They weren't laughing when I spent 4 days in the hospital. Things may happen, but as long as you try not to dwell on the possibilities. I know that is easier said than done. I am like you, I worry too much. I would rather prepare myself mentally for things than be surprised.