Scared and need help

[BRANDY]

MY tests Fri. showed me at 16% from 24% now what comes next with me   what should I do now to prepare myself for dialysis  just arounsd the corner.  I really want to know what I need to do or not to do   I eat fairly well   Im not extremely sick yet   I do pretty good most of the time.  I havent got fistula placed yet       I am getting new neph  so I can go to Davita center nearer me    so here I go with that.  could anyone tell me why I would drop in %    8% in 6weeks   More questions  later cant think of any right now    please  give me heads up on this disease

[Sluff]

I don't believe there is a definite timeline. However you are closing in on that 10% mark at which I think most nephs agree is the time to start dialysis. I am
 predialysis so I can not really give accurate advice but please know that I am sorry it has come to that point soon. I wish you luck when you have to make that transition.

[monrein]

There is no definite timeline but I myself started D with about 16% function.  If you're planning to do hemo, you should strongly consider getting your fistula created so it'll have time to mature, which can take 2-4 months.  You should also ask to speak to a renal dietician but cutting back on protein might help to preserve your function for a while longer.  Too much protein can accelerate the progression of ESRD.  You should also cut back on dairy and other high phosphorus foods.  The pre-dialysis diet is pretty restricted but a dietician should be able to help you with this.

I don't know why your function has decreased so much in 6 weeks.  These things are unpredictable because they do vary so much from one person to the next.  Some people are told they need to start D soon and they go along with not much decline for a long time. 

I'm sorry you're now at this point but remember that you will find answers here to many of the questions that you'll have as you go through it all.

Also remember that you can do an IHD search to find previous threads on topics that interest you specifically.
 

[Joe Paul]

Like Sluff said, with kidney disease, you never know. Eating well, watching proteins should help some. I would see about getting your fistula done soon, if hemo is what you are going to go with. Remember, a fistula gives much better clearance than a catheter, less chance of infection with a fistula too.

[BRANDY]

Thank you Monrein and Joe  for your reply to a sticky situation Im in .  Yes fistula is the way I am going  to do .. Is there any reason why they may tell me I cant do in clinic hemo

[boxman55]

Brandy, I know of no reason why you could not do in-center. The sooner you get your fistula to mature the better. If you have to start before it does, the doctors will surgically place a catheter and dialysis can be performed in the meantime. I would suggest that you ask your kidney doc to get you in touch with a vascular doc that will vein map you first so he can better select the right placement of the fistula. That way you increase the success of that surgery...Boxman

[Meinuk]

Brandy, I know that this is a scary time for you, and in addition to being scared, on top of that, you probably aren't feeling 100% at 16% GFR.  Everything is new to you, and you are doing yourself a great favor by learning all that you can. 
 
BUT - in learning all of this, try to keep perspective, try not to dwell on the "what if's".  Sometimes, people have kidney failure and they will never know why the kidneys failed.  In my case, my GFR was sometimes misreported (labs can make mistakes too) - this is why we have frequent monitoring after we have reached CKD4  (the stage just before CKD Stage 5, Dialysis)  But the fact is that the kidneys are failing, and all you can do is try to  stay as healthy as possible.  Almost EVERYONE can be dialized in center, if it is an emergency, a chest catheter can be placed.  (Permcath) until a fistula or graft can develop into a usable access.

Facing dialysis is a big transition, but it IS NOT THE END.  Look at some of the members here, KitKatz +9 years, Zach 26 years, Bill Peckham 18 years - you can be on dialysis and live a very full life, and as therapies are getting better and better, there is no reason why you can't be making plans years in advance.  This is just a bump in the road, and I know that you have been dealing with medical issues for a very long time, this is just another medical issue.  It sucks, but we are all in this together, so you are not alone.

Now is the time for preparation, and any preventative measures that you can.  Starting with your new nephrologist is a good step, then meeting with a surgeon for your access, vein mapping ect, to make sure that you have the best access possible.  Meet with a renal nutritionist (your nephrologist should be able to hook you up).  Try to meet with a renal social worker.  If you are considering transplant, now is the time to meet with a transplant surgeon.

All of this can be overwhelming.  What works for me, is I treat my healthcare like a part time job, and I am working for myself.  It allows me to take a step back and not be overwhelmed, when I treat my health care like a task that must be completed, and not a life or death crisis.  Because modern technology is keeping most of us alive, we just need to make the best use of it.

But even more important try to enjoy these holidays.  Try and take a moment and not think about what is happening to your body.  Your mental outlook has a lot of influence on your health. 

There are things that you can do to TRY and slow  further loss of function (remember, this is just a healthy way to try and slow the disease)  Diet, avoiding salt (Bill has a good post about hidden avoiding salthttp://www.billpeckham.com/from_the_sharp_end_of_the/2008/02/top-ten-ways-to.html), watching over the counter meds etc.  The members here have a lot of good advice.

from a blog post by a Nephrologist  http://pbfluids.blogspot.com/2008/12/patient-information-over-counter.html

What over the counter medications should I be careful about with my kidney disease?

All over-the-counter medications have the potential to be harmful and so they should only be taken according to the labels and if you have any questions you should call you doctor. However, there are a few over-the-counters that are particularly problematic for patients with weak kidneys. Here they are:

   1. Ibuprofen (Advil, Motrin), Naproxen (Naprosyn)
   2. Sodium phosphorous solutions (Fleets enemas or fleets oral cathartics)
   3. Magnsesium citrate (MagCitrate)
   4. Pseudophedrine

Ibuprofen (Advil, Motrin), Naproxen (Naprosyn). Both of these medications are non-steroidal anti-inflammatory drugs or NSAIDs. There are a number of other NSAIDs that are prescription only including indomethacin, Celebrex and others. The problems with NSAIDs goes for all of these agents, not just the over-the-counter ones. NSAIDs block the production of prostaglandins that trigger inflammation in the body. Unfortunately, in the kidneys, prostaglandins help maintain blood flow. Blocking prostaglandins can decrease the blood flow to the kidney and cause the kidney to shut down. This is more common when patients are also taking diuretics (water pills) and blood pressure medicines called ACE inhibitors or ARBs. (Common ACE inhibitors include Vasotec, Zestril benazapril, Altace or any drug which ends with –pril. Common ARBs include Cozaar, Diovan, and Atacand or any drug which ends with –sartan.)

NSAIDs can also interfere with blood pressure medicines and cause patients to retain fluid.

Sodium phosphorous cathartics. Fleets enemas and oral solutions are used to treat constipation or prepare patients for surgery or colonoscopy. Recently we have learned that these medications can cause severe permanent kidney damage. Little is known about how often this occurs and appears to be rare but people with normal kidney function have developed severe renal failure requiring dialysis or transplant following exposure to these medications. Unfortunately not all doctors are aware of this complication and are still prescribing these medications. A clear picture of who is at risk for this complication has not emerged but experts agree on the following risk factors:

   1. Advanced age
   2. Chronic kidney disease
   3. Use of diuretics (water pills)
   4. Use of ACE inhibitors or ARBs

In addition to the risk of damaging the kidneys with sodium phosphorous, patients on dialysis who take these drugs are at risk of severe elevations in phosphorous that may kill them.

Magnesium citrate is sold under the brand names Citro-mag and Citroma. Magnesium citrate is used to treat constipation and to cleanse the bowels before surgery. In patients with severe kidney disease (CKD stage 4 and 5 and dialysis) it can cause harmful levels of magnesium.

Pseudoephedrine is the active ingredient in some cold medicines (Actifed, Sudafed) that are now kept behind the counter due to the fact that pseudoephedrine is one of the ingredients needed to manufacture methamphetamine (crystal meth). Pseudoephedrine raises the blood pressure by about one point and the heart rate by about 2 beats per minute in patients with normal blood pressure or people with well-controlled high blood pressure. This should not cause any problems. However, in patients with poorly controlled or untreated hypertension, pseudoephedrine may cause larger changes in blood pressure and should only be used after speaking with your doctor.[/size]

[kellyt]

My GFR was 6-7% and I still felt pretty darn good.  When I admitted for my transplant I believe it was 7% and my Creatinine was 5.1 (coming down from 8.43 in Aug).  He had stopped two of my meds in August and the Creatinine slowly started dropping.  My doctor didn't want to start me on dialysis if I was still feeling so good, but he was also hesitant because he didn't want me to get sick all of a sudden and have my first few weeks/months of dialysis be really hard on me.  Luckily, transplant occurred and I was able to avoid dialysis all together.

Listen to your body.  Listen to your doctor.  I'm sorry I don't have the experience to answer your question properly.  Good Luck!   

[BRANDY]

         Thanks for you guys replying, I didnt say in my former  message that I am also diabetic    for 34 years and on insulin pump now for about 1 year.  My question is -- does hemo effect my pump  will I still need it or does hemo take care of me.?  I read somewhere you dont use pump   dont make since to me...  guess I am ramblin again





Edited: Fixed smiley error - paris, Moderator

[paris]

Brandy.  like the others have said, each situation is different.  You and your neph will know when it is time.  I dropped from 30 to 18 in a year, but have been steady at 14-15 for 2 years.  I do everything I can do keep what function I have.  Follow food guidelines, don't take any over the counter meds unless approved by neph---anything I can do to slow things down.  Meinuk gave me great hope when she told me she had been at 15% for 5 years.   Your labs and how you feel will help you make the decision.  Best of luck!  Keep us posted.

[Lucinda]

Hi Brandy.  Sweetheart, try not to confuse your situation by asking too many questions all at once.  Any questions you have will be answered somewhere here on this site.  All answers to your questions will be here somewhere on this site.  Initially, I just went through (searched by relevant words)  all the threads that I felt related to my situation.  I am also pre-dialysis and currently scheduled to start training next month.  I KNOW how scary this is but good to prioritise.  If I were you the first thing I would be looking into is when you will be getting your access.  Your fistula is probably most important right now.  Once that is in and maturing it will give you a greater sense of security knowing it will be there when you need it.  I had mine put in two years ago and I have managed to starve off the inevitable all that time.  I think diet and exercise are the most important thing leading into dialysis.  I am sure my strict diet has been a real contributing factor to why I have not had to begin dialysis sooner. Most importantly, try not to get anxious as that will put your blood pressure up and that will also have an adverse effect on your renal function.  Take care.  This site is absolutely the best dialysis bible in the world.  xx

[nursewratchet]

There is no definite timeline but I myself started D with about 16% function.  If you're planning to do hemo, you should strongly consider getting your fistula created so it'll have time to mature, which can take 2-4 months.  You should also ask to speak to a renal dietician but cutting back on protein might help to preserve your function for a while longer.  Too much protein can accelerate the progression of ESRD.  You should also cut back on dairy and other high phosphorus foods.  The pre-dialysis diet is pretty restricted but a dietician should be able to help you with this.

I don't know why your function has decreased so much in 6 weeks.  These things are unpredictable because they do vary so much from one person to the next.  Some people are told they need to start D soon and they go along with not much decline for a long time. 

I'm sorry you're now at this point but remember that you will find answers here to many of the questions that you'll have as you go through it all.

Also remember that you can do an IHD search to find previous threads on topics that interest you specifically.
 

Yea!!! Monrein is after my heart!!! Get a fistula, Get a fistula, Get a fistula   Now I'm off my personal soap box, just would hate for you to have a catheter.  Follow the diet, it will give you more time to stave off. 

[BRANDY]

How do you use key words or what ever to search the IHD for a topic???

[paul.karen]

Like Sluff said, with kidney disease, you never know. Eating well, watching proteins should help some. I would see about getting your fistula done soon, if hemo is what you are going to go with. Remember, a fistula gives much better clearance than a catheter, less chance of infection with a fistula too.

Joe or anyone else.  What do you mean buy a fistula will give better clearance then a catheter??

[monrein]

For hemodialysis, the best access is an arterio-venous fistula (instead of a catheter into the heart, or groin in some cases) because it has less risk of infection and because more blood can be effectively cleaned in a session of dialysis.  Catheters sometimes involve recirculation, by which some of the same blood is being cleaned over and over, so the clearance of toxins is not as good.

Don't confuse a hemodialysis catheter with a peritoneal catheter.   Two totally separate things.

Hope this helps.

[monrein]

How do you use key words or what ever to search the IHD for a topic???

Just go to the top of the page and where it says search you type in what you're looking for.  Example...Fistula, or buttonholes.  The press ENTER on your keyboard or press the search button.

[RichardMEL]

Clearance is a measure of the amount of toxins and crap taken out of your system by the dialysis process, so a better clearance is good (and will make you feel better ). A Fistula is generally accepted to be the best form of access, followed by a AV graft and then the cath. The risk of infections is far lower with a fistula and a mature one can handle the stress much better. At least that's what I've always been told

Brandy - that's pretty scary to drop so much so quickly. Unfortunately it happens (though it may also be wise to get another set of labs done to confirm it as labs can be wrong sometimes and also they can fluctuate - you may have GFR of 19 next time!). Clearly though there is some sort of decline happening. Sometimes it's quite slow and sometimes it can come on quite quickly. I am sure we all hope it's slow for you and this is just a bump.

Try not to be scared though. You can see how many of us handle dialysis and ESRD and do pretty well. It's absolutely scary and daunting. You might want to get your neph to set up with you more information. Maybe your local unit or hospital will have an information seminar, help you meet patients etc (mine does) which might help. Perhaps also see if you can visit your nearest dialysis clinic and see if they will let you see what it all involves. I know I had never seen it before I went in for my first treatment (even with the seminar, when they showed us the needles and machine it was all still a bit unreal) and I had no real conception of exactly what the day to day procedure was... like go in, weigh, set up, blood pressure, needle, blood pressure blah blah.. etc etc... It can be scary going in there seeing people all hooked up specially if it's you next!! An introduction might help a bit.

Just remember you're not quite there yet and it may be some time off but I absolutely concur speak to your new neph about a fistula - I am sure with your GFR going down they will want to get onto that anyway. Fistulas take 6 weeks + to mature before use, so the sooner you get it done (and it's not very painful or anything) and in then the better it will be in the long term - even if you don't have to start D for a year or hopefully more... it can sit there and mature and get nice and strong so when they have to use it you're going to have far less problems.

Hang in there. We'll try and help you through it. Hopefully also your neph and support crew should also help!

[paul.karen]

Thank you Monrein and Richard.
Yes that helped and made sense.
So much to learn still.  That is why this site ROCKS..
P&K

[BRANDY]

   Richard you seem to know alot  about this disease,  how long have you been on dialysis???  Thanks for taking time  and supporting me on this   I SURE need it .  I can talk to people about it but no one knows anything about it so it is just me talking.. No one understands what I am really talking about .  And alot of them really dont care, sad but true






Edited: Fixed smiley error - paris, Moderator

[RichardMEL]

Yeah I sure crap on like I know a lot. I don't know really. Stauffenberg is the expert but he's on a posting hunger strike or something so you're stuck with me and everyone else who posts. What I *do* know is that I try to educate myself as much as possible about my situation, how the dialysis system works, the real deal with labs and their interaction and stuff like that. Why? Because I like to understand. I may not be able to change much, but it gives me a measure of control over my situation - for example understanding WHY there's fluid restrictions or the dietry stuff makes it much easier for me to handle doing it, because I know absolutely what the deal is. Or for example understanding UF profiles in the dialysis machine helps me make an informed choice when it comes to the session and how I want to run it in a  way that will be most comfortable for me.

I also think the D staff apprieciate that I do ask questions (and hopefully retain the information) and use it in a productive and understanding way. I can work with them on issues and I think there's some confidence by them now - I've been on dialysis almost 2.5 years - that if I make a request it's not just because I'm whinging or don't understand what I'm doing - but there's a reason behind it (and I can thus discuss with them - though usually they just accept what I want to do and we go with it).

I don't want to be a patient that just sits there and accepts what I'm told with no understanding or background. I want to know why and be a part of my own treatment. Afterall if I don't care about my body and its treatment who else will?

[pelagia]

How do you use key words or what ever to search the IHD for a topic???

Just go to the top of the page and where it says search you type in what you're looking for.  Example...Fistula, or buttonholes.  The press ENTER on your keyboard or press the search button.

and I think Okarol once mentioned that you get the best results (broadest) if you search from the home page (just use the link at the top of a page, just under the search box, to get to the home page before you type in a search).

[BRANDY]

   I figured it out  ,  this is great for a newbie  I didnt know you could do this   I have already found alot of answers that I needed to know   and some  I hadnt thought of       





Edited: Fixed smiley error - paris, Moderator