Are you about to start dialysis? Ask any questions come here and get the truth.

[teniya]

first off the person that insulted me apologized and thats settled. secondly. i never told anyone they shouldnt be upset. i said god wouldnt put us through was we couldnt handle. that just means look to god for help,. i simply asked a question and offered god as a resolution to everyones fears and doubts about life on dialysis. now if you want to pick a fight id suggest doing it with someone else I love life and god. you shouldnt judge people so harshly.

[MooseMom]

Teniya, I dare you...post a quote from someone here who has judged you harshly.  I dare you.  I've read all of the posts to you, and the word "Welcome" stands out the most often.

Not once have you mentioned "God" in any post.  You have not offered "God" as any sort of resolution to anything, so that is an untruth.  If it were true that God doesn't give us more than we can handle, then no one would ever commit suicide nor sink into depression or drink themselves to death, so that is another untruth.  Besides, it is not up to you to offer God.  God offers Himself.

And I am beginning to suspect that you are not a "sick little girl" because you have yet to speak one single word of truth. 

[teniya]

read what i wrote in the introduce yourself section. then youll see that all i believe is that god is the answer. and you were RUDE and judging me. if you cant find better things to do maybe you should go to church and thatll take your time up.

[teniya]

and also God relies on us to spread his blessing and his word to everyone who is disbelieving. so it is up to ME and everyone else in his presents to let people know he's there for them. So I do offer God and I do praise him. So there for you are wrong  ma'am.

[Rerun]

Teniya you can say my name "old bat" aka "Rerun".  It is fine with me.

Honey, you would be surprised who is on your side.  Now, calm down and start reading this site.

You came in here, not introducing yourself and started "judging" us, so you get what you get.  If you had read the rules:  http://ihatedialysis.com/forum/index.php?topic=540.0  we would not be having words.

Let's start clean. 

Old Bat, Moderator

[teniya]

i wasnt calling you an old bat. i wasnt judging i was asking. theres a difference. then i stated my opinion on my experience. I didnt say. you are all stupid for hating dialysis suck it up and be a big girl. No i said my dialysis life was easy and i feel everyone should love life and appreciate what we have. not in those exact words but thats exactly what i meant. then i wished you all luck. i hardly think that deserves a a brutal tongue(type) lashing.

[okarol]

This subject of this thread is about starting dialysis.
"Have you been told you need dialysis? or will soon? Well ask questions here and get a straight answer from a fellow patient."
Please stick to the topic and take the discussion elsewhere.

okarol/admin

[Rerun]

OK, OK, let's start over.

You are very welcome here, but one of the rules here is we get to say what we want without censorship.  No cussing or calling names....  So, you may state your opinion, but so does everyone else.  Some people cannot handle that and leave.  Too bad too sad, but that is why this site was developed.

Rerun, Moderator

[karen547]

This site is called I HATE DIALYSIS, NOT I LOVE DIALYSIS and I'm sorry but God has nothing to do with me being on dialysis, a doctor who was an idiot does.

[MooseMom]

We hate dialysis but we love life, which is why we are on dialysis in the first place.

[karen547]

I agree dialysis is a necessary evil in order to live life, but I really don't think God has much to do with it, but I am more spiritual than religious

[teniya]

God has everything to do with your existence so obviously he has to do with you being put on dialysis. You can be spiritual and religious at the same time. It's one thing to insult my ignorance and judgment, but if you would be so kind to keep my faith and religious beliefs out of it i'd highly appreciate it.  It's not fair for you to insult my God.

[karen547]

I am on dialysis because of a negligent doctor, not because of God, and I'm not the one shoving my beliefs in others faces.. and I am a positive person btw, just because I am not always happy about my situation and vent, which by the way is what this site is for- does not make me or anyone who does the same a negative person. I apologize if  I have offended you but this site is made for us to come and vent and to support one another, it's not Church.

[Rerun]

 

Let's take this discussion elsewhere.  This topic is for new people who have questions about dialysis.

I'm guilty too...... but let's stop this conversation here.         (he needs a whistle)

[karen547]

I agree, lets just squash it and keep the topic to dialysis related issues!

[karen547]

Teniya, I'm sorry about today, I was just angry about some other things and I think I took it out on you, and thats not right so I apologize to you, and am sorry if I offended you or anyone else for that matter, but I'm human and make mistakes.

[MooseMom]

karen547,     Some days are just harder than others.

[graham]

Hi Guys,

My mum, who is 90, has now had her GFR drop to 14, it was 15 in December when first detected. She is due a meeting with her consultant following an MRI scan and then a chat from a Nephrologist later next week about kidney disease and options for treatment to which family and friends are invited. Sounds like a group meeting sort of thing with other families I guess?

My questions are:

Although she has been advised generally about diet restrictions; eggs, dairy stuff and salt etc. Should she be looking at a properly regulated and restricted diet now, rather than general advice?

At what GFR does dialysis have to start? I know that operations to fit fistulas etc, need 4-6 weeks beforehand, so is this something that may get recommended to do now in preparation ?


Sorry there is so many questions. I have tried to find answers elsewhere in the forum first and in doing so have come across many moving stories from you good people out there. Thank you for your honesty and support.

Regards
Graham

[MooseMom]

"When to start dialysis" is the $64,000 question.  I know my neph starts really advising to start at GFR 10, but if you're feeling really crappy, he would start you earlier.  That's a decision that your mum and her doc need to make.  Many patients will tell you that you will WANT dialysis when you're ready!

My gfr suddenly dropped to 18 after many years hovering in the 20's.  At my next appt, it had dropped to 15, and that's when my neph wanted me to have the fistula done.  It has gone back up to 17, but as hard as it was to finally allow that fistula to be created, I know that it is now maturing and should be ready well before I need D, and that gives me peace of mind.

Re diet, her labs will tell you whether or not she needs specific dietary restrictions.  It's potassium and phosphorus she needs to be concerned with.  It would be a good idea for her to see a renal dietician who can give her more than just "general advice".  There's also plenty of info online, but a renal dietician will be able to give better advice for HER.  For instance, my neph wants me to have MORE sodium for reasons that are complicated, and this is not usually the "general advice".
Ask as many questions as you want!  It's not always easy or quick to do searches for specific answers, so just come here and ask!

[guitarmaker666]

OK here goes: I DO NOT want to bitch too much. But every time I go to my doctors, they look at me and tell me I only have 1-2 months to live...if I do not start d the D word. Can someone please explain (no sugar coating) what happens next?? I am really pissed off, scared and confused...I guess the needle things scare the hell out of me. I also am still confused what happens next. These ###%^$ doctors just are horrible with dread news and bad futures. I play guitar i hpe I can keep this up. JUst like I have stated before though: I am so glad to have found this site.
      Any info would be very much appreciated.....................

[aharris2]

OK here goes: I DO NOT want to bitch too much. But every time I go to my doctors, they look at me and tell me I only have 1-2 months to live...if I do not start d the D word. Can someone please explain (no sugar coating) what happens next?? I am really pissed off, scared and confused...I guess the needle things scare the hell out of me. I also am still confused what happens next. These ###%^$ doctors just are horrible with dread news and bad futures. I play guitar i hpe I can keep this up. JUst like I have stated before though: I am so glad to have found this site.
      Any info would be very much appreciated.....................

Hi guitarmaker and welcome to the neighborhood.

You don really give much information so I will guess. I am guessing that they are looking at blood test results and see that you are reaching the point where your kidney function has declined so far that you are very close to needing an artificial means of cleaning your blood to keep you alive - dialysis. Okay. One of three things happens at this point:

A. You decide not to start ever and the toxin buildup and fluid overload (if you are retaining fluid) will kill you eventually
B. You decide to (or just happen to) wait until you are really sick and you will end up in the emergency room, later admitted, having a temporary catheter inserted in your neck or chest to start you on dialysis and a permanent access - fistula or graft being placed in your arm. You will be stabilized in-patient and then assigned to an outpatient facility for a lifetime of dialysis treatments (there are treatment alternatives).
C. You very proactively tell the doctor that you would like to have a graft or fistula placed so that it will be ready for use when you have to start dialysis. I believe grafts average 3 weeks to be ready whereas a fistula averages many months. If you are already being told that you only have a month or two to live, it may be too late for either. Just get the catheter placed and make the arrangements to start on a nonemergency basis.

C is (in my opinion) the best choice because it gives you some control in that you are not in an emergency situation. I hope this helps and it is the kind of info you were looking for. If not, ask away. You will find a wealth of information on this site. I hope your doctor is doing more than just scaring you.

Regarding your guitar, if you can play now, this close to dialysis, you should be feeling better and be better able to play after you start. I am not a musician, but please mention the guitar to the vascular surgeon who will create your access so that it can be positioned with your guitar in mind.

Alene
 

[okarol]

guitarmaker,
It would be helpful if you got a copy of you lab slip and looked at the numbers for creatinine, GFR, BUN and HBC. But if they're telling you it's serious, I would take one of aharris suggestions here.
Or, if you're concerned about your arms, you can explore the option of peritoneal dialysis where theres a tube in your abdomen and you do daily fills in your abdominal cavity so the toxins are removed by osmosis. No needles. Many people find this to be a comfortable way to go, but everyone is different.
My suggestion. Try one of the options. See if you feel better. See if your labs improve.
We are here for you - keep asking questions. Take care!

[lunadatura]

I can only tell you that I dont reccomend you do what i did and wait until you are puking your guts out because your kidney function has gone off the deep end and you end up in the ER /hospital with an emergency cathter placement in your chest and emergency dialysis - NOT FUN. Better to go NOW and get your fistula and/or PD catheter placed and get started outpatient on dialysis.

A good vascular surgeon should be able to place a fisutula in your arm in a place that wont affect your guitar playing.

the good news is that you will feel better once you start D.

ROCK ON!!

[guitarmaker666]

Thanks again:  You have told me way more than the darn docs did. I guess I am going to look at option C. By the way this is the first time I have heard about PD? NO needles? whoa boy it may be the way for me I am just a big chicken I guess.  LOL   And yeah this was told to me after blood work my cretin levels are way high. Any info on this procedure...PD would now be helpful..    Thanks again

[RichardMEL]

PD is a good option for a lot of people, but can involve a lot more manual work (bag exchanges and all that, or using the machine overnight). The thing to remember is that with the PD catheter in infection is a big risk, and you have to be careful in that regard.  You also can't easily swim and have to be careful when washing that area.....

I don't do PD so others can tell you more about that, but here's wiki about it: http://en.wikipedia.org/wiki/Peritoneal_dialysis

With a fistula, doing hemodialysis, which you can do at home, or in a unit, where they do all the needles and all that stuff(so you don't have to worry). I do HD and it works well for me. Yes, you should have no problem playing while being on dialysis. The only thing you need to be careful about is to avoid lifting heavy items with your fistula arm, but that's not an issue with a guitar.

Sounds like you need to change docs to a neph you can relate to and feel comfortable with to explain to you everything you need to know.

I had my first neph was like yours. He told me "You have two months" when I first saw him. No preamble, no explaining.. BANG! Well that was 13 years before I started dialysis, and now 17 years ago... I didn't go back to him but got another neph who was much better and have been with him ever since. While being told you have 1 to 2 months to live if you don't start dialysis is pretty extreme it could be accurate, since those who quite dialysis usually only last between a few weeks and a few months, so you must be pretty close to needing dialysis.

This is pretty scary for you I can appreciate but don't think this is the end of the world or anything. Hopefully whatever type of dialysis you decide to do hopefully it will make you feel better and more able to do the things you WANT to do!!