hey all..newbie here

[andrea_c]

Hi
I found your site after searching the net for support groups for spouses of dialysis patients.  I asked my husband's dialysis center if they had a spouse support group and they said no, would I like to start one.  This I thought to be very funny.  My husband has been on dialysis for nearly 3 years now and is awaiting a kidney from Einstein medical center in PA.  They promise a 2 year wait. Who knows.  The strain and stress this has placed on our marriage is tremendous!  Most times I try not to be selfish with myself, but I gotta say that right now I am at my wits end with anything to do with dialysis and kidneys. It is the only thing that he can talk about. He seems to be always not well. It has curtailed allot of our travel plans.  I can never be not feeling well, because then it does not compare with his illness (correctly so). If I take time to myself then I feel guilty.  All conversation roads seem to lead back to that subject.  I know I know What a horrible thing to say or even think. but it's the way I am feeling right now. Much more to say but since this is just an intro I will let it all fester till another time.  I hope I did not offend any of the kidney patients here. Peace 

[andrea_c]

So maybe my post might have upset others.  I read it and I come off as sounding selfish. I truly am not. It is frustrating to watch my hubby go through this. My job is stressful and now I have the additional house and life  issues on my shoulders as he is either depressed or ill to deal with the other part of living.  I guess this is a cry for help for me.  Most days I feel like escaping. Peace 






EDITED: Topics merged - Sluff, Moderator

[kimcanada]

I am not sure what post you are talking about but   

Remember this is a place to feel free to share your life and I will be looking forward to reading your posts

Kim

[Sluff]

Hi there andrea_c

You have not offended anyone, you are one of the reasons this site exists. It's great to have you here and it's hard sometimes being the caregiver in a relationship. You can start by reading this section specifically created for spouses and caregivers:   
                                                                                                        http://ihatedialysis.com/forum/index.php?board=33.0

Welcome to the IHD family. Here is more about our family http://ihatedialysis.com/forum/index.php?board=39.0

If you need anything just ask us and we will help anyway we can.

Sluff, Moderator

[aharris2]

Andrea, rant all you want, that's what were here for!! don't worry about hurting feelings, we'll get over it.

cheers


Rolando

[BigSky]

 

[jasperkat]

Welcome Andrea!  My husband is on dialysis too and sometimes it is overwhelming.  As time moves on you and he will find ways to cope.  We treasure out time together.

[bluedove57]

I understand how you feel about your husband. Mine committed suicide rather than stand by me. God is good and will  help if you ask. I've been on the waiting list for the past 5 years. I was forced to move in with my mother after being on my own for 30 years. That was harder than doing dialysis. Keep your chin up and I commend you for supporting your husband.

[andrea_c]

Thank you all for your support so far.  Today is NOT a good day for me so far. he was vomitting all last night, could not sleep because he was so "full' that he could nto breathe.  So it was heater on, heater off, fan on, fan off all night he sat up.  Now he is at dialysis and I am facing a day of doing laundry.  I am lostand  am bracing myself for a call from the hospital saying they have taken him there because last nights events were atypical. I am teary and just not feeling good and dreading when he comes home seeing that after-dialysis look.

[angieskidney]

Thank you all for your support so far.  Today is NOT a good day for me so far. he was vomitting all last night, could not sleep because he was so "full' that he could nto breathe.  So it was heater on, heater off, fan on, fan off all night he sat up.  Now he is at dialysis and I am facing a day of doing laundry.  I am lostand  am bracing myself for a call from the hospital saying they have taken him there because last nights events were atypical. I am teary and just not feeling good and dreading when he comes home seeing that after-dialysis look.

All you can do is look at any positives. I know it seems like there are none but there are. He is on dialysis. It is not a lung or heart he needs but a kidney! Which means he can live with the help of a machine! I know .. not ideal .. not what you want for your loved one .. but it is better than the alternative!

It is a shame there are not any support groups for spouses in PA. My fiance lives in PA and he comes here for knowledge. Knowledge is power and that helps get you through and for you to not feel so lost and overwhelmed!

We are here for you! The more you learn, the more you can help your husband. Like for one, he has to control his fluid intake so that he can breathe! I am one to talk .. I have 4kg on me right now! Good thing dialysis is later today...

[sandman]

Hi Andrea and welcome to IHD.  I to am from PA as Angie has already mentioned.  I am not married to Angie yet but we are engaged.  All the while, we live in two different countries so we don't get to see each other that often.  I have only gotten a taste of what life is like to be the caregiver so I can understand some of the stress you must be going through.  I know it hurts deep down in side to watch the ones we love, deal with so much and know there is nothing we can do but comfort them and remind them how much they are loved.

I don't know what to say to give you any words of encouragement because I don't have the experience that you have had.  I can only hope that I will not come to my wits end with Angie.  I congratulate your efforts in trying to keep your marrage together.  I know this is so cliche but do try to keep your hopes and spirit up as it maybe the only thing holding you together.

[Joe Paul]

Welcome Andrea, good to have you aboard.

[Ohio Buckeye]

Welcome Andrea to the IHD family.
I hope things improve for you and your husband soon.
Has he tried PD dialysis or able to?

[nextnoel]

Welcome, Andrea!    I hope your husband is doing better now - your burden is so heavy!  Hang in there, and come here to rant - believe me, we can empathize with what you're going through. 

[andrea_c]

Thank you all,,,he is home form dialysis and as usual repentent for having put on 5 kg of fluids over the weekend.  He is resting now, so tonight will be quiet.  I am thankful to have him home but then again my eve will be lonely too.  Oh by the way, I am in NJ not PA.  peace

[Wattle]

 


I am sure my husband feels the same some days. Dialysis is not an easy journey to take and sometimes I vent and rant and take it out on him.... because I can. He is the one I come home to after appointments when my head is inside out and I am not feeling rational 
It definatley is hard on any marriage. You have to make time for the two of you.... without dialysis talk or health related issues... and just enjoy each others company. So on a good day go to a movie or get a DVD and sit on the couch and remember why you got married.

Everyone feels like you do, patient or carer, thats just natural.     

[Rerun]

Welcome Andrea to our site.  Maybe your husband should come to this site and get his frustrations out too.  It reallly helps me as a dialysis patient to come here and vent my frustrations and then I don't take it out on my friends and family.

Don't think for one minute that your husband doesn't know what you are thinking.  He is feeling guilty for runing your life.   I hope you can find hope in a transplant.  They you will have your man back.

Be patient~


Rerun, Moderator

[anja]

   andrea, to the community.  Wishing you both the best.

[andrea_c]

ty ty all for the support yesterday.  Today he feels better and things don't looks so gloomy.  He tried to help out with housework while I was at work today.

[Bajanne]

Welcome to our community, Andrea.  As I read your posts, it is clear that this is the place for you to be.  Here are people who understand exactly what you are going through.  Never hesitate to post and let us know what you are going through.
Since this section is for introductions, could you please start a post in the General Discussion, and there let us know how your husband is doing?  We want to be kept up to date on his progress.  I am so glad he is feeling a bit better.
We also have a section for spouse, caregivers and loved ones.  It was created especially for you to discuss your particular perspective as your loved ones go through this challenge.
Please remember that you have a new family now, here in IHD.  And that is not just words.  We are here for you.  Here is a group hug from us - 


Bajanne / Moderator

[shay_pcb]

It's very understandable to feel that way from time to time. I'm sure I make my fiance feel that way quite often! lol I try not to complain, but when he starts complaining about minor things I jump in and tel lhim how I feel most of the time...Then he's quiet...lol I guess I shouldn't do that though. Everyone's pain tolerence levels are different! It may be jsut as bad as dialysis to him! lol Anyway,  to IHD!

BTW, why do you find the idea of starting your own spouse support group funny? I think that's a great idea! You can never have too much support!!! 

[del]

   Hubby has been on dialysis for 10 years now. It is not always easy but we enjoy a very active life.  He really watches his fluid and diet.

[MJB]

Hey Andrea,

Welcome to IHD.

Being the patient now gives me a great perspective on the burdens that I place on others. I have been on both sides. I have been dialyizing for the last 11 months and have been on dialysis for several years in the past between transplants. My father died from complication after a long run on dialysis and my Mother who was his primary caregiver is now mine, not to mention my brother and sister who are becoming increasing less healthy due to PKD. You need to take your time. If it means getting away for a weekend or a day with friends or other family you have to do it. If you are not well you will never be able to help him. I can say that being sick with ESRD does sometimes cloud your judgment and have un-realistic expectations of others. Just bear with him and rant...rant....rant on these boards. There are lots of people on these boards that can help you through this uneasy time. I wish you the best.

Mike