Hey Y'all!!! My name is Evelyn and I am from SC

[eeyore31573]

This is the story......I am 38 my hubby is 41
10 years ago my hubby (finance' at the time) was told he has FSGS....dialysis started about a year later, we got married 4 months before he started.....3 days a week in-care dialysis......took up the time while I was at work and when I came home I was the home nurse......all the same stuff I have read on here.....about once a week a dialysis nurse would call me...your husband's blood pressure has dropped really low, he is sick and we think you should come get him.....Thank goodness I was 2 blocks away from the center.....as everybody has mentioned he felt aweful and it took him the "day off" to feel human again.....then 5 years ago we got the call.....well next month marks 5 years...we have a transplant.....so for 3 years we were told that if rejection is going to happen it USUALLY happens in the first 3 years.....we celebrated the 3 year anniversary with a "birthday" party........life is really getting goooood again...then last February 18th(2010) he was sick with a head cold....did the usual went to the doctor....doctor sent him straight to the ER.....his head cold ended up being 3 brain tumors...2 on left hemisphere and 1 on brain stem...they were called PTL's (post transplant lymphomas)... I have been a stay at home nurse and wife since I brought him home from the hospital on March 8th, 2010...I am not complaining a bit!!!!...they told me to make him comfortable he has about 3-6 months left in him... it's been hard but we heard the words remission 2 months ago, then we go to the "kidney" doctor.....he has not been on anything for his kindney except for prednisone since last year........we heard the word rejection last month....by Fall we are possibally looking at removing transplant and starting dialysis again...he 100% REFUSES to go to a dialysis center again so he wants to do Nxstage...he has more confidence in me than I do sometimes lol.....so I am looking for info from REAL people about Nxstage and to say here we go again......I have no clue what he is actually feeling on dialysis but, I do know it is very hard on him physically and emotionaly

[willowtreewren]

Hi, Evelyn,

 

What a roller coaster ride you have been having! 

I was a NxStage care partner. If you can drive a car you can learn to do NxStage. BUT, it does take up a great deal of your time. On the other hand, I found that the time "we" spent doing treatments at home was quality time together.

Aleta

[eeyore31573]

Focal and segmental glomerulosclerosis (FSGS)

[looneytunes]

Hi Evelyn and welcome to our community. 

You will find several members (myself included) who are working with NxStage.  I tease my hubby that he has the "amateur nurse" at home.    NxStage is not difficult but as WTW says, is time consuming.  I find that I get a lot of things done while hubby is hooked up and still have time to visit with him and monitor his treatment. 

Ask any questions, there will surely be someone here that can help you.  Again, glad to have you here!   

[eeyore31573]

thank you.....

[MooseMom]

I confess that I have never heard of post transplant lymphomas.  I guess they are caused by the immunosuppressants?  Is this common?  Anyway, I am glad you found us, and most people I know who are on NxStage feel like the extra work is worth it.  Maybe he could get his neph to let him do 8hrs nocturnal (while he sleeps) so that he gets good dialysis but will still have his days free.  Good luck to you both, and let us know how we can help.

[eeyore31573]

I confess that I have never heard of post transplant lymphomas.  I guess they are caused by the ?  Is this common?  Anyway, I am glad you found us, and most people I know who are on NxStage feel like the extra work is worth it.  Maybe he could get his neph to let him do 8hrs nocturnal (while he sleeps) so that he gets good dialysis but will still have his days free.  Good luck to you both, and let us know how we can help.

immunosuppressants yes.....common no according to doctors VERY rare and when they do happen usually it happens near or in organ transplanted 1 in a million chance of nervous system (according to dr) and even less directed to the brain.....lol Dwayne says he should REALLY play the lottery lol

[kporter85db]

Hello and welcome to IHD, Evelyn. You'll find lots of great information and great people here.

 

[Ang]

  Aboard

[Poppylicious]

  Evelyn!

 

[lmunchkin]

Hey Evelyn and Welcome!  I also am a caregiver to husband!  I work full time, come home and put my little darling on NxStage to do about 4hrs. Not really necessary to do 4hrs, but he gets a good dialysis when doing it longer.  Gets the fluids off and toxins out of blood stream.
I know you are going nuts right now, but if you could just relax, and take this one thing at a time.  It will get better for you! 
If you are willing and have a good employer who will give you the time you need to train on this NxStage, you and he will find it very much worth the effort!  Now, Im not going to say it was easy to learn, because I would be misleading you!
But once you learn this, Evelyn, and you go through all the "horror's of alarms", and you will have them, it will finally "CLICK".  Trust me when I tell you, it will become so routine that you will be able to do it Blindfolded!  Not really, but you get what Im talking about here!
Lord knows you have been through alot with your husband and he appreciates that you have been there.  Once you both go and get trained, you will go home and after a month or 2, you both will enjoy your time together!  That being said, The nurse who will train you on NxStage, Will not let you go until you can Do It.  When the nurse tells you that you are doing great or fine, even though you may not think so, trust that the nurse knows!
IT WILL BE OVERWHELMING AT FIRST, No doubt! But Hang in There Evelyn, you can do this!
There is no harm in trying!  You have not lost a thing in effort to do this for him!  You love him & he loves you, so at least give it a try!  The worst thing that could happen is he would have to go In-Center.  I know he doesnt want to, but what other alternative does he have besides "death". That is blunt, but it is the truth!  He needs to understand that!

Im so sorry all this has happened to him and you, but we can make it better for them! You are not the only caregiver who is stretched in this awful disease, there are many of us, and we want you to know that we are here to help! OK?  Hang in there! Just take care of yourself and get relaxed so that you can do this for him!

Keep us posted and there are alot of NxStage users other than myself, that would be willing to walk you through whatever you need. Please visit our NxStage or Caregiver site.  They are great!

GOD BLESS YOU,

lmunchkin     

P.S. NxStage is like training for a new job. Once you do it over & over again, it becomes like second nature.  You will perfect it and look back and say, "What was all the drama over?"  Seriously!  That's what happened to me after I finally got it!

[The Noob]

Hey Evelyn, i am from Chas., SC, born and bred. Hubby from WV. we are in Mi now and hoping to get back south when things get settled more.

i remember when i was first an EMT, and firefighter. one the way to each call i was a nervous wreck, yelling at my partners to tell me "what to do"! i remember sweating like a pig on those first few months at each call. one dear sweet old lady handed me a small kitchen towel to dry the sweat off my face..

after a few months of that i made the "click" and got better at it, until after awhile i was seasoned and my BP rarely went up past normal except on a few real challenging calls.

we did PD at home for 10 months, it took at least 6 of those until i felt totally comfortable. hubby is on hemo in clinic now and i'm still learning. was wondering when we draw a paycheck on this nursing? 
seriously, its a labor of love..God Bless you sister

[eeyore31573]

The Noob ..... I AGREE on the paycheck thing lol....I was in Harleyville for 18 years!!!...now in the upstate of SC

[Genlando]

Welcome, Evelyn!

I live in the Columbia, SC area.  I just started HD on the NxStage back in May 2011.  My wife is my treatment partner.  Even though it takes up a lot of her time, I feel that we're closer than ever now (if that's possible after 29 years' marriage).  After just a couple of months on NxStage, I can honestly say that I feel WAY better than I did with in-center treatments.

My wife told me that she felt intimidated for the first couple of treatments; however, she rapidly got used to the process, and she's totally comfortable.  I say GO FOR IT!

[eeyore31573]

wow....thank you for all the responces and especially the ones that say it is not easy at first but it will come....I have not worked since March 8, 2010 due to soooooooo many doctors appointments with the tumors....but you know what I would give up another very well paying job for what we have done together this past year and me watching the hubby go from being paralyzed 100% on one side to up and walking (not perfect) again!!! God has been more than good to us and to tell you the truth we have not needed for anything.....our Church family and his family has been wonderful to us (all of my family has passed away).
I just have a bad habit of getting the jitters when I know it is something I will have to do lol ....like bringing a man home who cannot do ANYTHING for himself and do EVERYTHING for him.....but then again when we came home from the hospital they told me to make him comfy and enjoy the 3-6 months we have left....THAT WAS MARCH 8,2010!!!! wow must have REALLY made him comfy!!!!

The Noob and Genlando ....lol I maybe leaning on y'all until I get my nerves up lol...at least I know you are kinda close!!!!

[lmunchkin]

Oh Genlando, I forgot about that aspect of NxStage, cause it has really brought us closer together also if that is possible!  I mean I can hook him up and fix dinner and watch Tv while we eat.  You don't see people in-center, enjoying a full course meal!  I have never understood why that is, but it don't matter, we still gonna do it.  Why you say, BECAUSE WE CAN!!!!!!

Sometimes I will crawl up in bed with him and we cuddle while he D's (Sending all kinds of Alarms off) lol.. But I truly want him to have the best life possible and we laugh alot, but we do have days, especially if I have had a rough day at work, that Iam just not very talkative and He understands that! But hey, those days are few & far between!  I really enjoy my job and have a good repore with my Bosses! They have been there for me through all this with my husband and they really think alot of him too! Ive been working for them since 1999. Odd, that seems so long ago!

But I, like you both, really do like this NxStage! Does she cannalate you or do you do it?  Do you use PureFlow? I love the pureflow, cause you don't have to hang bags!  Hanging bags is what we use when we travel.

Evelyn have you come close to choosing a modality yet?  Please let us know of your decision, cause you should really pick what feels right for you!

lmunchkin