Hi I'm new

[billhu]

Hi I have been on dialysis for about 9 months now and I HATE IT. My journey started in 2008 when I was dx with cancer. I fought thru chemo and radiation and then had a Bone Marrow Transplant in 2011. My transplant was from an unrelated donor and I got what is called Graft versus Host Disease (GVHD). This is when the donor cells do not accept my body so there is a war going on inside me. All the anti rejection medications destroyed my kidneys so now I have to go to dialysis the rest of my life, I tell my Dr I would rather be in chemo. That's how much I HATE DIALYSIS

[Charlie B53]

Is your cancer in remission?

On hemo or PD?

It sucks that treating one major problem has brought about another permanent major problem, but stuff happens that we can never foresee.

Sorry that it has happened to you but you have found the right place.  Those here at IHD all know the continuing battle with kidney disease, and freely share their experiences and knowledge hoping to enlighten all who seek to gain better understanding of what is happening to them.

We are also here to listen, anytime you need an outlet to vent anger, frustration, anything.  We are a close knit family, all joined at the kidneys.

Others are sure to post their 'Welcomes', if you haven't already, browse the site, check out some of the postings, search any questions or key words and you will soon see how much we care for one another.  You will be accepted and treated well, as everyone understands how easy it is to find yourself feeling lost and alone, facing a death sentence from kidney failure.

While it is a death sentence, it doesn't have to be soon.  Dialysis becomes a way of life.  We don't like it, but it is a necessary evil that allows us to continue to kep on going, to spend qualitiy time doing whatever it is that you do.

I'm rambling, I'm outta here for now.

Take Care, take a couple of deep breathes, slow down, you will do alright and like all of us, you will manage to get by.


Charlie B

[Ninanna]

Hi Billhu and welcome to the site!  There is lots of good information and support here.

Feb 4th I had a kidney and a bone marrow tx. I also had a case of acute grade II skin GVHD, so I feel your pain there.

[billhu]

Charlie B, I am in remission and I am on Hemo. On Thurs. treatment with about an hour to go my BP dropped an I blacked out. I woke up with 3 nurses over me. I had urinated myself while I was out. and I don't urinate. This has happened twice. They are now going to run the machine slower and put a restriction on fluids they were taking 4.5 lts when this happened

[Rerun]

Billhu, I'm so glad you found us.  People want to change our name but I bet you don't!  I hate dialysis == How else do you describe it? Yes, it lets us live but sometimes it can be hell.  Good news is, once they figure out your dry weight and you learn how to feel a "crash" coming on you can tell them to shut off your UF (pulling of fluid) and let your fluids even out.

Lots to read and learn on here.  Thanks for joining.

Rerun, Admin   

[Darthvadar]

Hello Billhu...

 Warmest  to IHD...

I too want to keep the forum's name... I really do hate dialysis...

Hope to see you posting often!...

Darth, Moderator...

[PrimeTimer]

Welcome to this site, billhu. I am sorry that you are going thru so much. I don't know why some of us go thru so much in our lives other than being told to believe that "everything is for a reason".  Well, sometimes I don't want to know the reason, I just want things to be normal. It is hard. Some days are better than others but it seems that dialysis is the hardest because it's not like we can just swallow a few pills and then get on with our day. Doing dialysis requires a lot of planning, time and strength. I think it's okay if we have days when we don't feel like being strong. So, you've come to the right site, ask any questions you want and I guarantee someone will answer or have a suggestion. Don't be afraid to speak up because a lot of us here are still learning and YOU might actually be able to help one of us with your comments, questions or thoughts! You'll see what I mean...By the way, your body will probably start getting use to a lower BP during treatments but until then, I think nurses appreciate it when you tell them you are starting to feel a tinge of dizziness or nausea coming on so that they can stop taking fluid off of you too fast. You will learn to listen to your body and then they will learn to listen to YOU.

[Bambino_Bear]

 

[Poppylicious]

Hello billhu and a big  to ihd.com.  So sorry to hear of everything you've gone through.  Come back and post often ... share your struggles!

Poppylicious, Moderator

[billhu]

Yesterdays dialysis went better. Tran the machine slower and took off 3 ltrs. MY blood pressure did drop while doing a standing. I don't want them to give me fluid, kind of defeats the purpose. I sat there for about 2o mins and BP came up to 101.

When I get home I go right to bed an sleep about 18 hrs. Will this change

[Simon Dog]

When I get home I go right to bed an sleep about 18 hrs. Will this change

Bill - do you think you would be up to doing dialysis?   If you get on a 5 or 6 day NxStage plan, you will be taking off much less fluid in a treatment and in all liklihood won't feel as wiped when you are done.

[billhu]

I can't see me doing more than the 3 days

[Simon Dog]

I can't see me doing more than the 3 days

You can get a BabyK and do it at home on a 3 day schedule, but that won't cure the wiped feeling.

Also, assuming you want to live for a while, consider that the 3 day schedule is generally considered inadequate.   If you do 5 days at home, your treatments will be shorter; you won't have to deal with clinic staff; and you can do it in your bed or a comfy chair (Monty Python reference).   BUT, you have to be up to managing your treatment - setting up the machine, record keeping, supply management, taking your own vitals, etc.

Could you share why you hate dialysis with such a passion?  Is it the needles; the amount of time in the chair; the hopelessness of it never ending; the clinic staff or something else?  Perhaps with some details, some on this forum can offer suggestions.   

I'm writing this from my recliner bed about 90 minutes into a treatment and, when I get tired of playing with the laptop, will find something good to watch on Netflix.

As to passing out - I was on the BabyK at home for a while, doing 3.5 - 4 times a week.  There were two incidents where I passed out and my wife called the EMTs.  The first was a routine pass out where I came to a minute later and continued on with my treatment routine.  The second occurred when I stood to work out a mf-er of a cramp, passed out, and had a seizure on the floor.  No injury, one night in the hospital for observation, and the wife serving an eviction notice on the BabyK.   Ever since getting the NxStage a few months ago, there have been zero cramps and zero syncopal episodes.   Life is now good.

[PrimeTimer]

I agree with Simon Dog about using the NxStage Cycler. I know everyone's case is different but because he does 3.50 hour treatments 5 days a week, my husband never needs to take any more than 1.5 liters off at a time. Lately, he hasn't even had to take that much off, more like around 0.3 to 0.5 liters now. He's 56 years old with Diabetes and End Stage Renal Disease. He started dialysis in September for a couple months, then we went through 5 weeks of training and he's been using the cycler at home with me as his care partner for a little more than 6 months now. He is getting good lab results and feels pretty good. The proof is in the pudding...he is working a fulltime semi-physical job. I had learned how to give him a "saline bolus" if his BP dropped too low during treatment and if he felt sick or a cramp coming on. He has never passed out. We do our treatments in the evening, he's up early the next morning to go to work just as he always has done.  And lately, he has not only needed to remove less fluid but has been able to tolerate a lower BP during treatment and has not needed a saline bolus and feels fine (no nausea or cramping). One of our training nurses had said that his body probably would eventually start getting use to a lower BP during treatments and sure enough, I think she is right! Our hope is for him to be able to lower his dose of daily BP meds or maybe not even need them anymore. But just the fact that he isn't having to take that much fluid off anymore AND feels good enough to work fulltime and keep active I think says a lot about frequent dialysis.

If doing home hemo dialysis is not possible, then I would definitely talk things over with your Nephrologist and/or Nurse about communicating to the dialysis staff about how you and them can head off cramping/nausea and then what to do about feeling wiped out after treatments. This might require you to watch your fluid intake more closely but them agreeing to watch you more closely during treatment so that they can help avoid nausea and cramping. Everyone has their part to do in all this. We were told the first year is the toughtest and boy, they were right!

Best place to read up on home hemo is the "NxStage Users" section. There's a lot to learn and do but overall, I think it's better than having to go to a center. But everyone is different and has different reasons for choosing in-center versus home dialysis and I do not think choosing to do in-center is a bad choice, so long as you are getting good care while you are at the center and are comfortable with that choice. 

[billhu]

Thank you all for all the replies. This is a great site.

My Dr's. do not want me to have hemo at home. They say I have too many other things going on like GVHD. Because I am immune suppressed they are concerned of infection. The other thing is someone needs to take a 4 week course. I don't have that someone

[PrimeTimer]

Thank you all for all the replies. This is a great site.

My Dr's. do not want me to have hemo at home. They say I have too many other things going on like GVHD. Because I am immune suppressed they are concerned of infection. The other thing is someone needs to take a 4 week course. I don't have that someone

Then hopefully you will be able to have a talk with your doc and the staff at the center so that all of you can come together on ideas on how to avoid BP crashes and cramping. Maybe it would help if you were to write down all your questions/concerns in the order of priority/concern, make some copies and then hand them out to your doctors and the nurses or dialysis techs, letting them know that since you will be doing dialysis a long time, you want to seek out some solutions. And then when they offer ideas or agree to your ideas, make notes on it. Let them know you want to be "an active participant" in your own healthcare. I don't know if I am giving you good advice but I sure hope things get better for you. I am sure that over time that your body will adjust and it won't be quite so hard. In either case, scan the different sections here, there's a lot of good info and a good mix of people and who knows, maybe you will find yourself feeling more hopeful and strong enough to overcome challenges. Sometimes this is also a good place to find a good laugh! Lots of fun, lots of jokes.