nervous about posting but..

[The Noob]

when i joined this group last year it was a great help, but DH raised a ruckus about me posting and there was an intense discussion about it. however, we are in month 18 of all this, i need the support and get tired of reading the boards and not being to post, so i said what the heck, i'll give it a try and if its not well received, well, at least i tried.

so here is the update of the last year:

DH had 9 episodes of peritonitus with PD, even after scan and xray, no one seemed to find problem and blamed us for what they percieved as lack of sterile procedures. last october i moved him to a different clinic with fantastic doctors! he was hospitalized a month later with that last infection. the surgeon came out of the OR scratching his head speechless. he drew me some pics and explained DH PD cath had never been placed correctly. it was stuck in the fatty layer right under his skin. beside the cath there had developed a pocket of fluid, and this was what was getting infected.
the cath was removed, a jugular port, then a chest port was put in, he starts hemo right then in hospital, released after 6 days and onto clinic 3 times a week.
to say trauma was the word of the day for him would be lame. i stayed cool and calm and GET R Done.

we somehow got through the winter with blizzards and a killer ice storm, and being trapped down the 3 acre long driveway that was often blocked with snow. often times i would drive the van down to the mailbox and the next morning son and i would walk DH down to the van (or truck) so i could drive him to clinic.

it was usally a 2 hour drive due to road conditions. then i would sit and wait at clinic or run errands, get several hundred lbs of coal in bags, groceries, etc., then back on the road for same drive, unload, tend stove and it was just me and my son to do it all. but we did it.

this went on for 5 months until early spring. in the meantime there were many more trips to city (2 hrs each way) for more surgery, appts, several cancelled after we had waited all day. DH had a new PD cath put in, cleaned out once, still not working, ended up in ambulance in the snow one night at 2:30 am, 2 hospitals, 4 days in ICU where he got both hemo and PD, i did the PD for him every 2 hours and all the rest of his other care as well as running back and forth from home to get supplies for this as they didn't have. all with 17 yr old son holding down the farm and coal stove.

DH's PD was unusable at this point due to too many adhesions. so he was stuck in clinic 3 times a week, 35 miles each way. few weeks after ICU i collapsed on floor. that was the end of the major driving for me. i still take him if he has a surgery or appts or isn't well enough, but with regular hemo he started to feel a little better and drives himself.

i did make friends with the families in center and we started our own informal support meet while we were all sitting there. it was invaluable as almost all friends/family/neighbors went quickly by the way side.

after 6 attempts to get to the education day at the transplant clinic in the city (he was in hospital every time) we got through that part and a month later had the eval. this was last tuesday. what a zoo.
my daughter and her fiance have been supportive and helpful all along the way and adamant about being tested. so they went to eval with us, sat through the 3 hours and got their labs done.
we are now waiting to hear if one or both are a match. they are both young and healthy and i only let them be tested after they understood all the processes.

its a tremendous thing for someone to offer you a kidney! DH had family who agreed to test but then backed out when other family told them not to, and then called him to tell him they had done this.

i look back on the last 18 months and wonder how we have coped, truly its been one day at a time.
i have spent a few months at our other old place cleaning and so on and getting some respite.

the NKF is paying cobra for 29 months, DH was terminated from employ after 12 months of medical leave, after 26 yrs there, not even a thank you, just "turn in your gear". this in effect cancelled our primary insurance, 401, etc. so i have nothing. i am a full time nurse and hired hand with no pay or benefits so i work extra hard at my own health. i have faith that at some point this will be over and we can both go back to work and get on with our lives. you have to think positive..LOL

son and i are now working on finish studies and deciding on college or military for him. no hurries though. we are still on the farm and i have downsized alot on animals and so on. i still have some and son and i have done some gardening this year. i finally locked onto some pets for DH he can manage, FISH. he loves them.

there is so much more thats gone on but you all know the drill. i was willing to try home hemo, 3 weeks training in city, and all the other associated stresses, DH now has a great fistual that the clinic will start working on soon. we are taking it one day at a time and hoping he will have a transplant before then.

i have some worries about my kids donating, and we've told them constantly they can back out, but they are insistant, want nothing in return, and are selfless. they call almost daily to see how we're doing and we also spoke with cousin who had transplant 11 yrs ago and is doing very well.

we've had alot of plans for the future we toss around, but for now we are here at this point. the next week will tell us more.

the transplant eval was a horror. tons of paperwork, then they called 3 times before meet to make me re-do it all (same info) then have to re-do it day of meet, then 5 people interviewed us making us repeat it all again. the hospital is large, rushed, rude but the doctors are some of the best in the country so we put up with the rest of it.

DH labs are very good, he is washed out after hemo but i keep him up and moving. little things i know he can do. i babyed him the first year, which made him dependent. once i realized that wasn't way to go, i quit. he is in excellent health in every other respect. we are blessed with son here, the kids never complains, never asks for anything, always positive, here with us to the outcomes whatever they may be.

the upside of this is that in spite of my diabetes, menopause and bone spurs on my spine, i am doing pretty good. told my DH i should be walking on water about now..

seriously, we have plenty to be thankful for. i am a compulsive optimist. and i do hope you all will forgive me and i can stay as i so badly need the support and get tired of talking to myself, and answering as well..

[Lindia]

Hi -   I just joined the forum today, and I am also the wife of a hubby with kidney failure.  I'm also optimstic and feel like that particular personality quirk has really helped me deal.  It must be scary to have a long drive to dialysis, and the potential of being unable to get out of your home due to blizzards.   My hubbys labs are also good, and we are hoping to do home hemo dialysis.  I really need someplace to vent, as I vented to my hubby a couple of days ago and stressed him out --      Keep on talking --  we're women after all !

[paris]

That is why we are here!  If we don't have each other, who will we talk to that really understands?   It has been quite a year for you.   You wrote a wonderful post and could feel your frustration and your love.    Keep posting.  As often as you like.  Caregivers need a place to vent, too.   I admire your "get r done" attitude!   I'll be waiting to read more.   

Don't go away again!   Your DH doesn't have to know you are talking to us.  You need this site.     

[The Noob]

Thank you!!!

well, i only hit a few of the high points. LOL
the final straw with the un-named other "family" came when they called to tell him they had convinced his blood relatives not to even get tested, that he should wait for a cadaver donor, and other nonsense that threw him into a broken state. that was it for me. this is just too hard to get through to have crazy making behavior added.

last week DH was sitting in his chair getting hemo and the patient next to him with dementia pulled his line out and was spurting blood like a hydrant. DH screamed to the nurses and they got it under control.
for the most part the clinic is run well and clean. we are empathetic to the staff, try to treat all there as family, we're all trying to do the best we can.
the only gripes are that we would like better seating. they are hard small chairs. one family member brings his wife and due to his paralysis has to stay. he is on braces and has very hard time getting around and really needs a lazy boy or something.
the other gripe is that EMS and prison guards who bring and pick up patients do not have to do anything when going to and from the hemo unit, such as wash up, mask, etc.
when DH and i worked EMS we always were required to wear masks, gloves, hat and footies and gown.

we've tried to address these issues calmly with staff and one comment blurted out to us in the lobby was: "this ain't the holiday inn!"

thought of writing short article to increase community support, but didn't want to ruffle feathers.
any ideas?

[Pam]

Welcome back Noob! I'm a fellow Michigander and have often wondered about you. Our winters can sure be nasty.
It's good Your hubby is feeling better on hemo. One of the best things he can do is get some exercise. Walking a little every day will help build his strength up.
It was a very rough yr for you but you just have to take things one day at a time and hope for the best.
Keep reading and post when you can. I don't post much but this site and the support it offers has saved my sanity!
 
Pam

[The Noob]

thank you Pam! well DH and i are both from south. we've discussed moving back but i said lets see where we get with this eval and testing first. plus we have a ton we'd have to move as well as 3 horses.
i do get him up and moving daily. walk outside, etc. he even helped with the tractor one day for a bit.
we have neighbors who know our situation, and we've helped them before and even during all this, but no one bothered to even call or whatnot during the rough winter.
something i have found out, and it can be debated, but it seems to me that those who truly want to help do so without prompting. the others will use any excuses (shift the blame) on the lack thereof.
we're good people. before and even during this we have helped others. few have reciprocated.

my sister has an 11 yr old son post BMT 2.5 years. his care is 24/7 and they spend alot of time in hospital. he has x.linked ALD. he was diagnosed at age 8 and had few symptoms then. when i have a moment of self pity i reming myself of what she is living with. she is in miami, but if she was here we'd help eachother. she was told by our family there not to bring her son around them because the family doesn't want to feel obligated to interact with him. wow is all i could think. he was a beautiful happy little chubby 8 yr old who didn't ask for this.

i'm not sure where the next few months will find us. we're still waiting on word from transplant clinic.
i did find out that hospital does single incision and may be able to use it for the kidney donor. they go through the belly button as a port for their tools, stitches on inside, bandaid on out. heal time much less and no visible scar.

thank you all again, bless your hearts!

[The Noob]

PS: Just posted a pic of hubby 3 years before D. It is this image I want him to keep in his mind, he can do this again. The rest is temporary! (posted in pictures of IHD family)

[MooseMom]

THERE YOU ARE!!!!  I have been wondering where you disappeared to, and now I know.  I'm glad to see you are alive!

As for you and your hubby, well, your story has left me exhausted just reading it.  There was a lot of information packed it there (and thank you for that!), but what you wrote from the beginning made me wonder.  May I ask, what was your husband's objection to you posting on IHD?  Did he think it was an invasion of his privacy, or what?  I would have thought that he would have been grateful for any support you had in taking care of him, but what do I know?  Anyway, I'm glad you are back, and I hope you can stay.

I know that you are hesitant to let one of your kids donate; we have this intense desire to protect our children.  But your family wouldn't be complete without their father around, so they would be donating for their own good, too, because they want their father back just like you want your husband back.  They probably feel so helpless, but this is something they could do for the whole family.

Speaking of family, there are branches of yours that sound quite appalling.  How they reacted to your sister's child is abominable, and the fact that they haven't helped you out much is just disgraceful.  I'm very sorry about that, but we are here, ready to help you via cyberspace.

I am SO glad you are back, and I hope you will let us assist you.  Our fab members are so knowledgeable and so generous with their time.

[The Noob]

HEY MOM! so very good to see you too.
Dh resistance to me being on any D forum i think was his denial about what we were facing. for a very long time he kept saying every day when he was going to go back to work, waiting for co-workers to call, etc. I finally said hey, i need the support somewhere, and this is the place!
The co-workers dropped off the radar asap, except one or 2. One of them still calls or comes by every 6 months or so. The other we thought was a good friend disappeared when we asked him if he would consider getting tested. I'll keep that in mind if I want to get rid of anyone, I'll just ask them their blood type!
The first year of this has been intensive 24/7 care, plus all the norm that doesn't stop and the Mt.Everest of paperwork, calls, bills, you know the drill. Since he has been on hemo, its settled down a bit, thank God cause i was approaching stroke level.

DH is my kids stepdad, we've been married almost 7 years. Their dad is around once a year. Even so, these 2 love him and want to help. For the rest of the un-named family on both sides, all i can say is Karma is a B**tch.

There have been so many times i would have them over for a good dinner, meet with them to explain all this, email, calls, and so on. Did little good for most. DH was so weak, he would sit there and let them drone on about themselves, critisize me and my son, whatever they wanted to pick at, and he had no energy to speak up and it was depressing to him that they reacted this way. I finally put my boot down, changed his cell #, told them to leave us alone, and cut the umbilical cord. Harsh some may say but enough was enough.

DH just got back from clinic. he's wiped out, but made himself some lunch. I have been cleaning all day..seems like I am always cleaning.

still no word yet from hospital. hugs Mom..

[rsudock]

What does DH stand for? Dear Husband? 

Anyway glad you two are still kicking! Hang in there!!

xo,
R

[The Noob]

hey girly, back at ya!

DH=Dear Husband

[MooseMom]

I know all about toxic family members; my husband's family is full of them.  It's a shame whenever you have to cut people out of your life, but sometimes it has to be done.  You really do find out who your friends are, and you really do find out who cares about you and your husband.  That your kids want to help their stepdad says everything you need to know about "family". 

If your other bits of family aren't part of the solution, they're part of the problem, and you can't afford to deal with them.  It has nothing to do with being "harsh" but has everything to do with marshalling your emotional and psychological resources to where they are needed most, which is to your husband.

I can't wait to hear what the hospital has to say!  I hope you will find out that you have two potential, viable donors waiting in the wings!  Good luck!!  Let us know ASAP!!

[Pam]

Great pic of your hubby!
I,ve been on the list at Henry Ford going on 2 yrs. No one has offered to be rested except my daughter and she's not a match. We signed up for the paired donor program but she is having problems with her paps. We have to wait another 6 mos for her to be tested again. In the meantime we had a call on May 10, I was to far down on the list. We had another call June 10 but that was a positive crossmatch. So now just waiting to see what July 10 th might bring. But it is good to know that I'm on the radar!
Don't foreget to take care of yourself. I've been type 1 diabetic for 30 years and I know first hand that stress can throw the BS all over the place.
Pam   

[The Noob]

Mom i don't think i have heard it put so very well!!! you nailed it.

Pam, bless your heart girlfriend. when we were at the hospital one time, i said to a lady i met in surgery waiting, (her husband was having heart cath to get on TX list) that we need a reality tv show about kidney disease and dialysis/transplant to educate the public. everywhere are support groups for all else but this. her reply to me was "it would be too sad, no one would watch it".

this is exactly WHY its needed.

[del]

My goodness you have had quite the year!!  The drive to and from dialysis in extreme weather is terrible.  Hubby had over an hours drive each way when he did in center and we are further north than you!!  There were several times that he had to go and stay with friends overnight because of weather.  And you find out who your true friends are when kidney failure or I guess any disease strikes.  Family is another issue.  None of my family have ever mentioned about donating a kidney (hubby doesn't want a transplant) but they could have asked.  They don't even call very often.  In the 28 years I have been living here my brother has visited twice, I have 4 sister's and 3 have visited twice. The other one has never visited.  Hubby's family is another issue!!  He has one sister who does not act much like a sister. She only lives about a 2 minute walk from us but we never see her unless we go there and she rarely calls.  None of hubby's family have ever offered to be tested for a kidney either.  Hopefully things will start to look up for you.  Hope things go well with the transplant evaluation.   

[The Noob]

in 18 months there have been over 30 hospital stays. many surgeries, appts, tests, labs, you all know the drill.

at one point last year hubby just didn't have energy to keep answering phone every day from histrionic family. they were screaming cuss words at me while i tried to explain he was too sick. couple days later social services shows up, says i have been reported for abuse.
we were doing 5-7 PD tx's a day, had to drive to town (did tx in car) to speak with social worker, who explained it was his family complaining he wouldn't talk on phone. so they reported me as abusing.

LOL i laugh about it now. told my sister when worried about this sort of nonsense.."what are they going to do? threaten us with HELP?"

this was same ones who faked heart attack when hubby was in hospital first time for 8 days. its always all about them. let it go on for over a year then put stop to it. there have been so many other antics but we got through it and have some peace now.

PS: daughter just texted me said donor nurse not in till tuesday but they were able to confirm blood type. nothing else till tuesday.

we are waiting to see where we go with this eval, our real hope is to move to WV where his cousin is whos been awesome, and start over.

[The Noob]

daughters blood type is O+. hubby is A+. so far so good. more info on tuesday/wednesday

another PS: i picked up my AA token in March: 11 years clean and sober..yea 11..count em
its a miracle

[boswife]

hey Noob, so good to see you back.  this is sooooooooooooo where you belong to 'get it OUT' with others who know what your talking about.  Im so glad you gave it another shot    HOpe things all come together for you and soon 

[MooseMom]

Noob, re your family, methinks there's a movie script in there somewhere.  You know, an indie flick about a dysfunctional family!   

[natnnnat]

HEY MOM! so very good to see you too.

Sooooooooooo excited to see you back Noob, I've been worrying about you too ( where is Noob?) and when I saw this Noob-Mom greeting I laughed and teared up.  Father in Law came over to see what I was laughing about and I think caught me all dewy eyed. 
Well, this joint can be like that!
 

[Poppylicious]

Welcome back, Noob!  You've had a very turbulent eighteen months - I'm pleased you were able to ride it out!  *fingers crossed* for some more exciting transplant news!

 

[The Noob]

morning yall! getting some coffee, wow its so hot and dry! i chuckled when i read the posts over. course i knew daughters blood type, i am more anxious for them being donors. was texting her last night while she was at work, she is a STNA and was doing a double. in spite of how rough they have it financially at times she will rarely let me help out. very independent. she said they are both very excited about donating. i know the ethics but even before this i always had to make sure they had what they needed and when she'd say no, i'd drive to city and do it anyway. kidney or not, i'd like them to be closer. these are youngsters in their early 20s but have demonstrated so much unselfish love and care over the last 18 months than anyone i know. (except for you all here!)

well the man is up fiddling with stuff to do, he does feel better with regular D. don't know when this heat is going to break!

[texasstyle]

I always wondered about DH too lol. Now I know!  Anyway Noob, I'll bet you feel like you could already write a book of your experiences. For myself, and probably many others, we feel like it's "always something". It's hard being a caregiver, it's hard being the one recieveing dialysis, and I know it is even often emotinally hard on the members of my family who do not reside in my home. My father calls so much to check in on things. I have found over the last 4 years that even with that happens, there is still a lot of great living in between. I have learned so much fo being here! Not only from a medical aspect, but about life in general. When I have been at some of my lowest points, everyone at IHD was there for me and helped pull me through. We all think and feel the same here pretty much, just come from different backgrounds and because of one common bond, we have come to find each other. One thing I think is important in life: learning to ask for help.I'm sure you have even helped others through your postings and may not even realize it.

[The Noob]

LOL you know, SW asked me few times if i asked for help..of course! just smaller things, respite, anything.
my one daughter and her fiance have been the constant. i do wonder sometime if its the culture of the area one lives in? what do you think?

[looneytunes]

Wow..Noob!  You're back and all is ok.  I was worried about you but am so glad to see you back.  And, it sounds like things are a little better than they were though there are still plenty of challenges.