hello from north carolina

[cosmo]

greetings from north carolina!  DH is the dialysis patient, i am the caretaker. here's our story. in 2006, DH underwent open heart surgery. surgery went great, bypassed 4 times, and he was up and speaking afterwards. that night he coded and things went downhill from there. all his organs shut down, including kidneys. so he went on hemo. spent the summer in the hospital due to infections, sternum dying and having to be removed, etc. all the while on hemo. Did incenter hemo once he went home and then kidneys picked back up and were working fine. in 2009he underwent a catheter just to check everything, and found 2 blockages closed and kidneys shut down once again for a few days. we should have known then. he went on disability because he could no longer work as a teacher.

in 2012 he went in for another heart cath and again kidneys shut down. you'd think they'd learn. this time, it was permanent. so he went on hemo in october 2012. it was rough, getting up at 4 in the morning and driving him to the center, then going to work (i work from home, but still...). in november they put him on PD. we both went through the training and it was working like a charm. now (may 2013) things aren't going as well. we have to use the 4.25 bags most of the time and even then it doesn't take off the fluid like it should. he's going to the clinic tomorrow so he's going to ask some questions. i hope to learn some things here too, i'm sure there's a lot to learn.

he does have ESRD. i hate to ask this question, but what's the average lifespan with ESRD on PD? will he have to go on hemo probably eventually again? i'm so worried. and tired.

that's a brief intro. me? well, i'm a web developer and work from home telecommuting to a company in st louis. i work 9-5. that's about it. my life is defined by DH's dialysis.

sorry, i'm not having such a good day today.

[MooseMom]

Cosmo, I'm sure glad you joined IHD because there are so many people in this community who do PD (and every other modality imaginable) and can surely give you lots of information and reassurance. 

And you have probably already seen the forum for caregivers/spouses.  If you have, then you'll know that you are not the only one whose life seems to be defined by DH's dialysis!  ESRD and dialysis is a FAMILY crisis in the early days.

As to your other questions, I'll let others answer as I truly don't know.  I'd be very interested to hear what the clinic has to say tomorrow!

[papacat]

Hello Cosmo, welcome to IHD! You and DH have had a tough time. I only started PD in Jan 2013 and joined this forum only a few days ago. Being new, I am not as much help as many others are in this forum. I have read here that some have been on PD for a long time. I also have found that some have eventually moved from PD to HD for various reasons. There are some that have been able to get a kidney transplant. Individuals with ESRD can live for a long time, depending on age, health etc. I read here of one person who has done PD for 12 years and another for 17 years! There is hope for you two.

I also had a heart problem, had stents inserted and catheter ablation. Not long after that my kidney started to fail. I am now doing fine with PD. It took about 3 to 4 months for me to work through various issues with PD. Apparently all our bodies are different when it comes to dialysis.

Keep up the good fight and I hope it gets easier for you soon. Please keep us updated.

papacat

[cariad]

  Cosmo!

Your question about lifespan is perfectly fair and normal to want to know. We do not shy away from those types of questions here, please feel free to ask anything you'd like.

One can live a long time on dialysis - there are people who have lived 40 some years, and now that they have better meds and know more about the side effects of dialysis, I'm sure things are even more hopeful. Eventually, as far as I've ever read, PD will stop working and the switch to hemo will become necessary. But that could be over a decade away, I don't know that there is really any way to tell how long that modality will suit someone. If/When it does become necessary, I would investigate home hemo or in-center nocturnal so that you don't have to be a 4AM taxi. If those are not possible, then talk to the clinic about a real 4AM taxi, many people get transportation costs covered.

I look forward to reading more of your posts!

[cosmo]

i found some answers to my questions in the FAQ. Focus on life, not death. death comes to us all.

i will post my questions in the relevant forums, thanks everyone.

[lmunchkin]

Welcome Cosmo! Iam a caregiver too.  Ask anything you wish, and we will answer best we can!  We are here for you!

God Bless,
lmunchkin

[jjneyjr]

Howdy, long time North Carolinian I lived in Charlotte, Hickory, Maiden and recently moved in with my little brother and family in Columbia Mo. Dang the cold!!

In my PD training we have what we call a PET test which should tell you the type of peritoneal membrane DH has. They also should have run a KT/V which should tell you how well the dialysis is going. The first question I think that comes to mind is the bag of drained fluid cloudy? Make sure that it is clear enough to read through the fluid. If it is cloudy call the nurse right away. They should have taught you how to inject antibotics into the fluid.

Is DH on a cycler or does he do manual? If he is on a cycler swith to manual for a few days and see if you get a different result. If you do than talk with your nurse about changing the cycler program. If he is on manual exchanges make sure the drained fluid is clear.
Best of everything for you and DH

Cheers,

[cosmo]

we live outside winston-salem. dh is on a cycler, the baxter cycler and we just did a 24 hour drain and it was clear. i know they do pet tests on him and stuff, but he never tells me what his numbers are. i will ask him specifically to get them next time he goes so i can know too. i think he tries not to worry me.