Stage4 and very. Nervous

[mamaf50]

Hello, my Gfr recently went from 27 to 17 in less than one year.  I have my first appt with the kidney doctor this Friday. What can I expect? I am so scared

[willowtreewren]

The worst thing is NOT knowing what to expect. 

They should be talking with you about what kind of dialysis you want to choose. There is PD which requires a tube placed into your abdomen or HD which requires an access to be created by joining an artery and a vein. This is called a fistula.

Before seeing your doctor, look around this site and learn more about both approaches so you have some idea.

If you do HD (hemodialysis) you will have to start out by going to a dialysis center (usually 3 times a week) for several hours at a time.

BUT, if you have a care partner willing to be with you during treatments, you can be trained to do your dialysis at home. that option allows you more flexibility in scheduling, and gives you better outcomes because you get more dialysis. In the States that would most likely mean using the NxStage machine.

I'm sure other members can give you more information, but I urge you to find out as much as you can BEFORE you visit the doctor on Friday. Health care professionals often assume that patients know more than they do, so they don't give as much information as they should. 

I'll be thinking about you on Friday!

Aleta

[MooseMom]

Have you been in the care of a nephrologist up to now, or have you just been seeing your primary care physician?

I am assuming you know the reason behind your kidney failure.  Can you tell us more?

What DO you know about the complications of your condition?  If you can give us more info, we can better explain to you what you may expect on Friday.

I'm really glad you've sought us out, and I do hope that we can be helpful to you.  Being nervous is all part of it; it's an emotionally very difficult time.

[Rerun]

Hi Mamaf50, and welcome to IHD and welcome to the world of dialysis.  The thought of dialysis is scary.  The thought of a machine sucking your blood out, cleaning it, and putting it back in is just unreal to think about.  Until.... you learn how it works and how you can feel better and learn to live with it.  Start asking about a transplant as soon as you can if that is something you want to do.  It is still just renal replacement therapy with lots of expensive drugs, but you do have options.

But for now, Today, you can kick and scream and cry.  That is normal.   

Rerun, Moderator          

[Jean]

   ME TOO!!!! I am at a stable 21 for 6 months now, but when I do think about it, I get chills. You are not alone and I am glad you found this site. They will all tell you that it is not so bad, and I always have that in mind, but know how you feel about the big "D"
Welocme.

[mamaf50]

Oh my goodness, thank you all so much for your response. Here's my deal, as a young child I had "reflux" disease and over time it has scarred the kidneys and well you know the rest.  I had an ultrasound last week that showed the R kidney was smaller, my Family prac. doc thought the Neph would want to do a biopsy ( I hope they do) so I can find out exactly what function i have left.  Here's the thing I am most frightend off,  at past visits with a Neph...I was always told "nothing we can do about it until they crap out"!  In so many words.  I am so afraid that is what i will hear tomorrow.  I am so dog tired all the time, I am anemic, can't concentrate or hold on to a thought for much  more than 2 seconds it seems.

My family is 5 daughters and 1 husband!  My girls are all A+ and I am 0+, so they are pretty upset that we don't match in blood types.  I am also a family daycare provider and on most days the kids win. LOL, I am just to tired to argue with them anymore.

I just want my appointment to get here so I can finally, maybe, get some help

thank you again for responding and I am so blessed to have found this site!  Friends helping Friends!

[billybags]

"nothing we can do about it until they crap out"!  Your neph said this, whats he like?  I would have thought that they would be at least be preparing you. In this game you have to get to know as much as you can about dialysis.Any way welcome to the site, ask as many questions as you like, rant and rave at us, we all do it at some time. It is a scary thing that you are going through but trust me you will be fine. 

[mamaf50]

"nothing we can do about it until they crap out"!  Your neph said this, whats he like?  I would have thought that they would be at least be preparing you. In this game you have to get to know as much as you can about dialysis.Any way welcome to the site, ask as many questions as you like, rant and rave at us, we all do it at some time. It is a scary thing that you are going through but trust me you will be fine. 

Well I'm not ever seeing him again I hope.  I am seeing his partner tho.  I have not yet met my new doctor but I have heard he is good.  I am a little disappointed in my family prac doc that she didn't set me up with the neph last year when I was at 27 percent.   I am so afraid I am going to hear those same words tomorrow..".Nothing we can do about it until they crap out"  Do they usual try to put you on a diet when you are diagnosised with stage 4? 

I am on iron tablets but am still so tired how long does it take for them to kick in?

thank you all for your support I appreciate it so much.

[Willis]

Here's the thing I am most frightend off,  at past visits with a Neph...I was always told "nothing we can do about it until they crap out"!  In so many words.  I am so afraid that is what i will hear tomorrow.  I am so dog tired all the time, I am anemic, can't concentrate or hold on to a thought for much  more than 2 seconds it seems.

Well, the neph may not be very tactful, but often there IS nothing that can be done to slow the progression of CKD. Sometimes losing weight and changes in one's diet can have some effect, but mostly CKD just keeps getting worse.

I've had CKD (IgA Nephropathy) for more than 30 years and it progressed very slowly and even though I was anemic for decades I never felt sick at all. Then all of a sudden my creatinine went from the 4s up to 11 in just a few months. That was when I started to feel sick and PD with EPO treatments is now the best thing that could have happened to me. My hemoglobin is up and I feel 1000% better on PD.

If you are feeling sick all the time, no matter what the lab number say, it may be time to start the ball rolling and get yourself on dialysis.
 

[Willis]

I am on iron tablets but am still so tired how long does it take for them to kick in?

The iron pills won't hurt you, but I've been told that increased iron won't help you much without a "catalyst" which is what the EPO shots are for. After starting EPO and IV iron I felt better within a week and my hemoglobin started to improve.

 

[Bajanne]

Welcome to our community!  You have come to just the right place for you.  Here you will find information, support and lots of encouragement.  I found this site at just that time before I started dialysis and I cannot tell you what a help it has been.  There is lots to read here.  Check out the Dialysis Discussion section where Epoman (the founder of this website) has a thread for people starting dialysis. - Here it is - http://ihatedialysis.com/forum/index.php?topic=5.0
Please consider IHD your new family  - keep reading and keep posting.




Bajanne, Moderator

[Ang]

 

 this journey is scary in the beginning, but gets easier with time.

to start with baby steps is the way to go.

next and most important is to ask questions,evem if they sound silly to you

some around the place can give you answer or perspective of whats happen to them

as most of us have been through stuff already

wish you luck with your journey

[Bruno]

My kidneys took 5 years to "crap out" but in the end you feel that crook you are relieved to go on dialysis...let me amend that...in the end you are really crook and really terrified and go on dialysis kicking all the way.
But, gee, you do feel a lot better.
Welcome, Mama.

[mamaf50]

mary mother of God, I just went from nervous to terrified   The neph wants to start getting me evaluated for a transplant.  i thought i would have to beg for a transplant.  Guess what?  He said it's cheaper for the ins. company to have a transplant than long term dialysis.   Hello!  Cheaper and the word ins. makes me want to cry.  

So i went to the hospital website and watched video's on evaluation and transplant...after care etc.   Scared me to tears,  someone tell me why it would be beter to have a transplant then just go on diaylsis?   

[boswife]

Welcome mama and lucky for you, theres lots of reciently transplanted friends on here that can inform you greatly on that, and lots of D people who can help on that too.  Hubbys on home hemo now for 5 months and we're real happy with that.  Others incenter and happy with that.  Theres PD, and then the others have transplants.  Lots of reading for you to do and sort it out but with the help here, it'll be a lot easier and better understood as its from real people going/gone through all of what you are questioning.  You are so fortunate to have found it here so get to asken 

[jbeany]

Dialysis is very, very tough on you.  It's time consuming and exhausting and rarely makes you feel completely healthy.  The diet and fluid restrictions are very hard to cope with.  Transplants can make you feel like a healthy person again.  Instead of hours a week in clinic, multiple medical procedures each year, and endless testing of my blood glucose each day, I get blood drawn once a month, see a doctor every 3 months for a check up, take my blood sugar once each morning to make sure my transplanted pancreas is still working and take pills twice a day.
It is less expensive in the long run with a transplant.  It's not unusual for D to cost over $20,000 a month.  Add in fistula surgeries and cleanings, (I averaged $80,000 a year in these), the monthly medications, and all the transportation cost, and the cost is staggering.  Plus, many people don't do well enough on D to work.  Many patients with transplants can work, and the meds average about $4000 a month in total.  Of course, you'll still have the issue of making sure you have insurance to pay for the meds, but that's part of deciding what will work best for you.

Not everyone wants a transplant.  There are those who don't want the increased cancer risk that comes with the immunosuppresants, for one thing. Plus, it's major surgery and it has risks of its own.  But, you can go ahead with the evaluation and get on the list and decide when they call if you want the transplant.  Plus, if you do decide at a later date that it IS what you want, you've already accrued waiting time on the list.

Reading the posts on here can give you an idea of how living on D affects your life, and what a difference a transplant can make if you choose to try for the list. 

And a neph who believes in preemptive transplants is generally considered a good thing!

[mamaf50]

Dialysis is very, very tough on you.  It's time consuming and exhausting and rarely makes you feel completely healthy.  The diet and fluid restrictions are very hard to cope with.  Transplants can make you feel like a healthy person again.  Instead of hours a week in clinic, multiple medical procedures each year, and endless testing of my blood glucose each day, I get blood drawn once a month, see a doctor every 3 months for a check up, take my blood sugar once each morning to make sure my transplanted pancreas is still working and take pills twice a day.
It is less expensive in the long run with a transplant.  It's not unusual for D to cost over $20,000 a month.  Add in fistula surgeries and cleanings, (I averaged $80,000 a year in these), the monthly medications, and all the transportation cost, and the cost is staggering.  Plus, many people don't do well enough on D to work.  Many patients with transplants can work, and the meds average about $4000 a month in total.  Of course, you'll still have the issue of making sure you have insurance to pay for the meds, but that's part of deciding what will work best for you.

Not everyone wants a transplant.  There are those who don't want the increased cancer risk that comes with the immunosuppresants, for one thing. Plus, it's major surgery and it has risks of its own.  But, you can go ahead with the evaluation and get on the list and decide when they call if you want the transplant.  Plus, if you do decide at a later date that it IS what you want, you've already accrued waiting time on the list.

Reading the posts on here can give you an idea of how living on D affects your life, and what a difference a transplant can make if you choose to try for the list. 

And a neph who believes in preemptive transplants is generally considered a good thing!

Oh my goodness, I am so scared. My daughters want to be potential donors.  How can I take an organ from one of my kids.    It will be hard enough to go through surgery myself, how would i be able to be there for one of my daughters?  I just want to wake up and find this has all been a bad dream.

[lmunchkin]

Mama50, I know this has to be so overwhelming for you! I also know that this site will be a tremendous help to you!  You are scared and frustrated all in one!  Look the thing you need to do is except the fact "that it is what it is" and do the best you can to inform & educate yourself.

In regards to your little Angels wanting to donate. Let me ask you, what would you do if it was one of them that needed a transplant!  If the shoe was on the other foot, what would you do?  Sometimes, we have to put ourselves in the other persons shoes.  It is wonderful that your daughters want to donate, it is evidence of their love for you!

Just relax and take each day as it comes.  It will get better! Please continue to post here and keep us updated!  We do care about you and want to offer as much advise as possible!

Praying for you!

lmunchkin     

[MooseMom]

For what it is worth, ie, not that much, try not to look too far ahead.  One step at a time.  If your daughters want to be potential donors, let them all get tested to see if any one of thm is eligible.  It will ultimately be the transplant center docs who will decide which if any, is the best donor candidate.  What about your husband?  Is he interested in getting tested?

[willielt1]

Its not the End of the World.. You Will Be Fine..

If The Dialysis Center is Close to your house That Helps Alot.

[RichardMEL]

OK I have come to this thread a little late.

I'm sorry that you just want to wake up and have it all be a bad dream - don't we all. Sadly it's reality.

My take on the "why transplant is better" is two fold. Yes, it is "cheaper" in the long run because dialysis is expennsive in terms of materials(supplies), staff, machines etc not to mention time, and transplant, while a huge upfront cost, is definitely a much better option - both for YOU and for the health system. The ongoing costs are much lower in terms of medication and care.

I understand it can be scary, but transplant really is the best treatment option for most folks. If you're considered to be up to the operation it is MUCH better than even going to dialysis (take this from someone who did 4.5 years of D prior to a wonderful gift).

Now about accepting a donation from one of your kids. Yes, this is a very difficult topic. The closest I can relate to this is my sibings wanting to donate, being tested etc. I did feel like I would feel respoinsible for one of them if they donated and something might happen to them that could be a result of the donation. I had to tell myself in the end that it would be *their* choice.. and to reject that choice for my fears would be a blow to them emotionally perhaps worse than the *chance* of something going wrong. I'm sure your kids don't want to see you unwell, going through D etc and remember that the evaluation of potential donors is very stringent, and many do not pass (like my sister) for one reason or another, so if one is accepted for donation they are in the best health and the medicos consider the chances of anything bad happening to be very small.

Obviously it is your choice in the end as to what you are comfortable with, but | think it is a wonderful thing that you have family willing to step up and being tested.

hang in there.

[olivia]

I agree with Richard. If someone wants to donate, they will feel really good about themselves. They will be your hero. If it is their choice to be tested and your choice to accept or not..

Dialysis is scary and so is a transplant. The more you educate yourself the more empowered you will feel to make these decisions for yourself.
Bottom line you have to live with any decision you make.

Take care, and good luck with Doc. Write down questions you may have, and I'm sure each visit will bring up more questions. Its important to feel comfortable with your neph too. Wishing the best to you.
 

[malaka]

I'm not a doctor, so this is layperson advice.  From my reading, transplant patients do better overall than dialysis patients.  Even Social Security Administration thinks you do better as a transplant patient as dialysis = long term disability but transplant means a year or so of disability.

Antirejection drugs do carry a risk of cancer, but dialysis carries a higher risk of infection.  And dialysis doesn't replace all kidney functions.  Others commented on the "job" of dialysis (no matter what type you get) versus the freedom of transplant. 

Like to travel?  Work?  Drink water like a normal person?  Easier with a transplant. 

[RichardMEL]

I can now claim to have done both dialysis and transplant (YAY!).....

It really is a mix of pros and cons with each form of _treatment_ - just like anything really. I would say that the pros of transplant - being freedom, more energy, less/little dietry restrictions etc vs the cons of potential affects of antorejection drugs/steroids etc and risks of cancers etc needs to be carefully weighed up against the relative stability of dialysis(for most patients, anyway) and the fewwe drugs you have to take while on D (again, for most patients) vs. the risks to the heart and other systems from imbalances in fluids or things like Potassium overload, too high PTH, bone disease etc and of course the relative lack of freedom to travel, work(for some), energy and general wellbeing(again, for some).

I guess it comes down to each individual and their situation. For example in my unit when I had justg ot my tx I spoke to one of the gents there and he was really happy for me etc, but he explained that he actually requested to NOT be put on the list, because he felt he was too old and was happy enough with his stable life on D. That seemed to work for him. For me, transplant was a no brainer - at least to take that chance (and so far, so good) because I did/do want to travel with freedom, eat more freely, work more, etc. Not that I did badly on dialysis - I was one of the lucky ones to have very few problems, but for me, transplant IS the better treatment, even though it has been a bit of a rollercoaster so far and probably will continue to be. The pros are still worth it because I have not had to be hooked up to that machine since early December - and only a dialysis patient can appreciate what a gift that is - and even if my kidney quits tomorrow, that's 8 months that I am ever so greatful for. Hopefully many more to come!!!

try and remember though, that whatever treatment mode decision you take - be it transplant now, or dialysiswhen the time comes - if you go with D, you can always investigate transplant. Dialysis is scary, but I think the fear of the unknown, of what will happen and what it will be like is probably worse than the actual experience (again, for most people - I don't want to generalise and have folks recount horror stories - which unfortunately there are some). I know prior to starting dialysis (hemo) I went to a seminar put on by the dialysis team, where they showed us the machines, and the needles, had D patients to talk and nurses and stuff... and that prepared me for a lot of it,but still as I approached that first day of going in I was still wondering exactly what it would be like - even the silly things like "what do I do when I arrive? What is the procedure? will it hurt? How will I cope?" etc. In the end it was pretty much OK and I went on from there and certainly the second time was so much better than the first in terms that I knew what to expect, what I had to do (ie: come in, weigh myself, get told what chair I was in, go set up my stuff, sit on my backside and think of England while they needled me, then get bored real quick!! ). From the third time it was almost old hat and a routine.

Remember that thousands of people out there, indeed hundreds of thousands around the world go through dialysis (and/or transplant) every day. If all of us can do it - so can you