Hello from Columbus Ohio

[Lowilson]

Hi, my name is Lori just started dialysis on dec 29th. I have pkd. The first day was ok they did dialysis after putting in temp catheter. I ran for 2.5 hrs. Still had a good buzz from surgery. The next day I went again but got a major headache and felt wiped out. Yesterday I went but my blood clotted and my blood pressure went real low and I got really dizzy and fuzzy.they stopped treatment. Today I still feel real weird when I stand up and completely wiped out. I take it this is all normal?  Hopefully, gets better after you get used to dialysis?  Hopefully, this board will quell my fears and get with my new life with dialysis.

[rsudock]

There's another buckeye! Hello there are a few of us here...Im in Cleveland with my bro Neil! We have ARPKD (infantile pkd)

Welcome,
Rachel

[MooseMom]

There are many well informed, experienced and compassionate people who have experienced dialysis just as you have, and I'm sure they will come by and give you plenty of advice and support.  Welcome to the forum!

[willowtreewren]

Lori, It sure sounds like they are trying to remove too much fluid too quickly! 

That drop in BP and the fuzzy headedness are good indications of that. It sometimes take a while for them to determine just what your dry weight is (what your normal weight would be if you were not carrying extra fluid). If you have PKD I suspect you are still urinating and don't have too much fluid retention. Speak up and tell them that you still urinate....ask them not to pull off so much fluid at each treatment.

 

And welcome to IHD!

Aleta

[Lowilson]

 Thanks for the info!! All a bit overwhelming

Lori

[Poppylicious]

  Lori!  You're in the perfect place for support and advice!

[lmunchkin]

Absolutely!!! Tell them to not take so much off.  Learn as much as you can about dialysis.  Check into other options available: PD, NxStage ect...
Can you get a transplant? Yes this can be overwhelming, but you have us now, and we will see you through this!  Ask any question you like, and someone on IHD will have an answer

Welcome & God Bless,
lmunchkin
 

[Traveller1947]

Hi, Lori, and welcome!  I'm sorry to hear that you're having such a rocky start.  Aleta gave you excellent advice: speak up and tell the doctor, the nurse and the tech what you're experiencing so they'll realize they're taking too much fluid off.  Your body needs to adjust to dialysis, it's true, but also, the doctor has to figure out what your real dry weight is.  But hang in there--it gets easier.  All the best to you on your journey.

[Lowilson]

I wil let them know!! I am approved for live doner only. Because of heart issues. They will re evaluate in three months. I had heart failure years ago after my kids were born. I am 47 now. My heart had been doin pretty good but they ran an echo right before I went to transplant committee and results were not great. They were hoping dialysis would pull some stress off my heart then I can get on the list. I have o type blood I hear that is bad. Hoping for better test results because I am not real sue where to dig a live kidney. I do not have large family to pull from. Anyhow I appreciate the support and words of wisdom as I work my way through this journey

Lori

[sullidog]

Welcome! I'm also from columbus ohio and have o+ blood so I see your frustration, but you'll learn a lot here! One thing I've learned you do have to speak up a lot.

[lmunchkin]

We are here for you Lori.  Anything they tell you that you may not know about, come here and ask IHD.  We are going to get you through this with love and support.  You are not alone. 

God Bless,
lmunchkin
 

[Lowilson]

I talked to them and they lowered the amount fluid they were taking off and took a look at my blood pressure medicines. Now they have reduced them and I do not take them on dialysis days. They think that will help my low blood pressure crashes. I am hopeful because today I still feel very week. I was hoping I would gain some strength. Not be so tired. My muscles really ache.

[willowtreewren]

Oh, Lori,

At least they are listening to you! 

It does take time to sort it all out at first and I'm hoping that you will soon start to feel much, much better for having the toxins removed from your blood!

 

Aleta

[iketchum]

We also have to look at blood counts. You may be anemic and require arenesp or even a transfusion. I have felt weakend and tired now for four years, but I still do amazingly well, like riding my motorcycle, hunting and fishing.Everyone is different and you will find your new limits. Best of luck and read as much as you can here, you will find questions you didnt know to ask.

[lmunchkin]

Maine is beautiful this time of year, Iketchum.  Is it still too cold for riding?

Lori, as time goes on, you will start to feel better!  But as time goes on, you will also learn of other options available to you.  Home D. has come a long way over the years and thanks to those before us, it is much better than before.  The dialysis is better, because it is done more often and is much more gentle to the patient.

Keep an open mind about your health.  It is your body, your life and you dictate!

Keep us posted and God Bless,
lmunchkin
 

[Riki]

The first month has a lot of adjustment.  You feel like crap, and they're throwing information at you left, right, and centre.  It's a lot to take in.  I think you've made a great move coming here.  I've found that if I have a question, someone here has an answer. 

I've been on hemo for 3 years, and starting it was a huge learning curve, after I'd been on PD for nearly 5 years.  Coming to this site has helped me incredibly, and I'm still learning.

[RichardMEL]

Welcome aboard, Lori!

Your story is quite common in terms of settling in problems with D. I think most of us have been there Initially it is very difficult to determine a proper dry weight, so this will probably occur a bit as things settle - but not too much I hope since it's difficult for you!!! I'm glad your team is listening to you and looking for ways to make it right - that's a good sign for your treatment at your unit I think.

I am glad you are with us and hope we can definitely help you out along your journey with D, answer questions and provide support.

RichardMEL, Moderator

[Lowilson]

 Well today I did a fistulagram i figured it wasn't going to be a big deal but my veins suck and doc had a horrible time with it sticking over and over again only to come up with the fact he doesn't think they can do anything to it. They are going to try and start a buttonhole  technique and perhaps get both needles in but the veins are deep. Otherwise maybe a new fistula higher up?? I not sure??  I hate getting stabbed!! I am worried that not all of staff will be able to stick me the doctor had a hard time with an ultrasound machine....what about protecting temp while washing hair any recommendations

Lori

[Ang]