Newbie and overwhelmed...

[Lovebelle]

Hello all...I am completely new to this and am sitting here writing this from my room at the hospital. I am 31 and have had hypertension since I was 19yrs old. They never could figure out why and to this day I am not sure why they didnt look further into my history. Anyway, my BP has been fairly under control over the years until recently. As part of my routine work up my physician ordered labs and a kidney ultrasound. My ultrasound showed a cyst on my right and that both kidneys were very small. Later I went and had my labs drawn and my creatinine was at 7.9 and BUN 79. My doctor scheduled me with a nephrologist but in the meantime ordered repeat labs and my creatinine went up to 8.9. After conferring I was direct admitted to the hospital yesterday and it has been a whirlwind!

I received a Quentin catheter placed in my neck and received my first treatment of dialysis. It was a "gentle" round and lasted only 2 hrs, but in the last 10 minutes I experienced the worst leg cramps of my life. Needless to say I was terrified to go to dialysis again today for 3 hrs and experienced cramping again. I am terrified to go to dialysis again because the cramping is unbelievable. Tomorrow Im suppose to go into surgery to get a PD catheter placed and a fistual formed for backup. I havent slept more than 20 minutes at a time since yesterday and am OVERWHELMED as this is alot being thrown at me at once.

So thats the brief abbreviated introduction to me and trying to absorb all of this. I realized I cant even begin to prepare myself mentally for the longterm ramifications of this and admit Im scared to death. I am a medical professional (nurse) so I understand the disease process but no matter how much education you have, I never thought I would be on the "other side" of things.

Thanks for reading

[MooseMom]

Of course you are overwhelmed.  Why wouldn't you be?  You've really been thrown into the deep end, but you know what?  There are so many people on this forum who are very good at being lifeguards and at throwing you a lifeline when you need it.

I'm not a doctor, but I suspect that since kidneys play a vital role in regulating blood pressure and since yours are congenitally small, chances are THAT is the reason behind your hypertension and your subsequent renal failure.  High BP damages kidneys, and damaged kidneys cannot regulate bp as well, so bp goes up and that damages your kidneys, and...well, you get the picture.

Unbelievable leg cramps are common in dialysis, but by what I have read on this forum, they are far less likely (and may not occur at all, if I understand correctly) when you are on PD.

And you are right...no amount of education can fully prepare you for what you've been through, but education will help enormously in getting your through the next few months.  The longterm ramifications are indeed profound.

Welcome to our community; we CAN and WILL help!

[carol1987]

  Oh Lovebelle.... I feel so bad for you... I just started dialysis and have had a few years to prepare myself and it is still overwhelming!!!

The cramping I believe is because they are taking too much water out of you... and your dry weight has been reached.  But there are others who have been on D  and on this site longer than me with much more knowledge and experience who will give you advice!!

I am still trying to come to terms with being a patient myself.... but here you will find people who have been on dialysis for years.... up to 20+ who are living happy , active lives!!

Welcome This is a great place for information and support!!!

Carol in NJ

[okarol]

So sorry Lovebelle (cute name!) that you're going through this. It's not uncommon to be blindsided by the kidney failure diagnosis, but it sucks just the same.
I wonder about getting both accesses. Seems nowadays they don't like to have a fistula going if you aren't going to use it, relying on PD to start. The back up would be the chest catheter. The heart can be damaged by the fistula pressure so now they often remove it after a transplant. There are news stories about it in our news section, I will have to look for them. Check with a nephrologist, perhaps he feels differently.
Best wishes to you. Welcome.
 

okarol/admin

[Lovebelle]

Thanks for everyone's kind words! Its encouraging to have a place to vent or even research other peoples experience.

I questioned the need for a fistula in addition to the PD catheter. But it seems both the vascular surgeon and nephrologist are in agreement when it comes to that plan of action. I admit Im not exactly thrilled about the Fistula placement at all, but I suppose I can see their argument. Im praying that PD will work so well that I wont have to worry about it for a long time.

Im trying to not think about the 4 hr Hemodialysis tomorrow morning before surgery. Sitting in those chairs is torture and while I understand the need to elevate feet, it is hard laying like that for a long time. My nephrologist did say however that they will not be drawing any fluids off tomorrow, so Im praying the cramping will be at a minimum.

Thanks again for the support 

[boswife]

wow,,, i feel for ya. Im so glad you found your way here though because just haveing this support will truly help you .  Amazing people with lots of knowledge...

[cariad]

  Lovebelle,

I used to get horrible leg cramps long before dialysis - it is a sign of kidney failure. Can you drink as normal? If so, have a glass of tonic water before dialysis. If you are fluid restricted, ask your nephrologist about quinine capsules. I took them up until my transplant and would not be caught anywhere without them. They are not supposed to work very well once cramp is upon you, but I found that I could swallow one in the middle of the night (when they loved to hit) and within minutes I was back asleep. I've been told that the US will not sell them anymore, so you may need to order them from Canada. (Assuming you are in the US?) I had horrible stomach cramp when they tried to take fluid off that just was not there. It was unlike anything I've ever felt before and positively excruciating - my legs were never bothered, though.

Good luck!

[okarol]

I questioned the need for a fistula in addition to the PD catheter. But it seems both the vascular surgeon and nephrologist are in agreement when it comes to that plan of action. I admit Im not exactly thrilled about the Fistula placement at all, but I suppose I can see their argument. Im praying that PD will work so well that I wont have to worry about it for a long time.

You do have a choice.
Are you planning to try for a transplant?

[galvo]

G'day Lovebelle and  . If they take 3+ litres off me, the cramps arrive both on dialysis and the succeeding night. Take off 2.8, all is well. Dialysis extends our lives but it brings with a number of trials and tribulations. You'll get an astonishing amount of comradeship and good advice here. Good luck and stick around.

[RichardMEL]

Welcome Lovebelle - what a cute name 

Wow, you've had it come on all rather suddenly haven't you? I can't imagine how that is for you. Just know that many of us here understand at least some of what you're going through and can offer our experience and support. Hopefully you will find this as a community you can come and find people who understand much of what you're dealing with - specially when friends and family perhaps can't.

I send you *hugs* - those leg cramps are horrible - I think all of us have been there (though I also find it unusual for a cramp during an initial session, when fluid usually is not removed).

it could well be that you do not need fluid off at this point - are you still creating a lot of urine? You may well be a bit dry as it is. They should really go through some processes to ascertain more clearly what your dry weight is and how much (if any) excess fluid you might be carrying.

Yes, the chairs are horrible - see if you can get your own pillows and blankets to make you more comfy - that's what most of us do.

re the fistula - I know you don't want it, but it really is a very normal procedure, even if you might decide to try PD or some other modality prior to transplant. It is the best form of access to have, and honestly the surgery is pretty minor and nothing much to worry about. It is a very good idea to have it because you can't have a chest catheter for a long time (high infection risk and they are not as good as fistulas anyway in terms of blood flow etc) and if the catheter fails you need that fistula there to be able to have dialysis.

Hang in there, and remember we're here for you!

 

RichardMEL, Moderator

[looneytunes]

Hi Lovabelle and welcome to IHD.  Sorry you've been thrown into this but you've found a great place to ground yourself (along with a little education, support and some fun).  My husband was on PD for a while and there was no cramping with it. 

I'm looking forward to seeing your posts.
 

[Poppylicious]

 

[Bajanne]

Welcome to our community, Lovebelle!!  I am so glad that you found us!  This is just the place for you to be - information, support and encouragement.  Above all, a group of people who really know what you are going through.  For example, those cramps!  HORRIBLE!!!  I have been on dialysis for 5 years and every now and then, I have to deal with cramps.  At least, now  I am more aware of when they are starting up and I call the nurse quickly.
Please consider this site your new family    You will soon find what a caring and sharing group we are.  Just keep reading and keep posting.




Bajanne, Moderator

[Lovebelle]

Thanks to everyone for their support and hugs. I am still in the hospital and dialysis has been a little better. Luckily they have allowed me to sit upright which makes a huge difference and They stopped removing fluid so the cramping has stopped YAY!!

I went into surgery on Friday and have been a bit out of it since then. They placed the fistula on my left arm and a PD catheter. The incision is pretty discreet and think the surgeon did well. Unfortunately my Temp has been elevated all day yesterday and today. Not sure why though. I am also very anemic right now and they are debating whether they want to give me blood (and as result introduce me to a strangers antibodies). If my levels keep dropping I honestly dont think we have a choice.

Anyway, Im going to rest since I feel really exhausted but wanted to thank all of you

[RichardMEL]

thanks for the thanks - was wondering how you were doing. Yeah, you want to try and avoid that blood transfusion if possible because of the antibodies - hope you can!! Have they given you anything like EPO to stimulate your own red blood cells?

fingers crossed that things improve for you. You can always get hugs here (I'm a sucker for a name like Lovebelle!!)

[Bruno]

Hi Lovabelle, I'm glad you are feeling better but what an experience you went through. You sound very brave to me. I think you got the leg cramps because they took off too much fluid and although I have the same kidney failure as yours I didn't get cramps. I think your doctors are right setting you up for PD and putting in a fistula as well. It gives you more options and better choices.
I had the same treatment.

[chook]

  Hugs for you, Lovebelle. Some of us have had years to 'get ready' and it is still always a shock. Welcome to IHD and the wonderful support it offers. The more you learn the better equipped you'll be to manage and cope with all this. Keep us posted on your progress.

[Lovebelle]

thanks for the thanks - was wondering how you were doing. Yeah, you want to try and avoid that blood transfusion if possible because of the antibodies - hope you can!! Have they given you anything like EPO to stimulate your own red blood cells?

fingers crossed that things improve for you. You can always get hugs here (I'm a sucker for a name like Lovebelle!!)

Today they started doubling the amount of EPO they are giving me. My Hgb is down to 7.0 and they are still avoiding transfusions (which is fine with me). Today was a bit rough and have felt  a bit out of it and lightheaded. But I am so happy with my doctors and they all have been wonderful so far. Luckily I also work at the hospital I am in because treatment has been outstanding (I like to think all patients get the same level of care).

[RichardMEL]

fingers crossed you can get your hemoglobin up over 10 ASAP!!! Glad they are taking good care of you