nervous about posting but..

[paris]

Re: family and friends -- I don't think they feel we are really sick or at least not sick enough.  Relatives just want to hear "I'm fine" and friends, well most ran for the hills.  I have 2 who have stuck by me and know when I need my space.   Since my diagnosis, other family members have had cancer. People understand cancer and rally around that cause.  When transplant time came, other than a few calls or emails, family didn't seem very concerned.  Just glad I was all better!  They asked how soon my body would accept the kidney -- geez Louise!!      I wish people understood and I wish they would worry about the caregivers. My husband really didn't have anyone to vent to and there were some days he didn't understand everything.     

Sorry--my llittle rant for the day!    This is a great conversation --- we have missed you, can you tell?     

[kellyt]

Welcome back!  We are all here for each other!   

[The Noob]

thank you all so much for the warm welcome back! texasstyle is right, there is still some good living in between. hubby is starting to feel better and his labs are good. we have 2 possible donors, even if not, the fact they were willing and excited to even be tested is good enough. just that in itself, wow!

it has been so hot here of late and the rain keeps going around us. we had a visit last night from a young amish friend who left home to see the world last year. we didn't recognize him! we don't get many visitors, maybe few times a year now. was a good evening.

as i am sitting here drinking coffee this morning trying to wake up, i want to say that that the first year was a nightmare. never should have happened if we'd had better docs. oh what i'd do differently if i could go back. but for the grief stages, i believe we are now to the acceptance part where we quit feeling like the steam roller was going over us, to where we have schooled ourselves and gotten adjusted to this "New Normal". this has made all the difference is how we cope.
i had times i never thought we'd make it to this point.
now yesterday we went to town to run errands and it was packed due to holiday. hubby made it around good in spite of the hustle. so did i and i didn't complain to myself or feel sorry, just did it and accepted it. with a smile no less.
when we were going through all this everyone kept saying "it will get better", because no one really knew what the underlying medical issue was. i truly believe the docs he has now saved his life.
before he ever had the first meeting to the new clinic, he was nervous and the docs, both of them, called him at home twice to reassure him. you could hear the wife and kids in the background. they talked to him for an hour. now how common is that? along with his new docs, we have had 2 of the best surgeons and others and if we'd only got them the first go round!

but, somehow we have made it to the other side and are coming out of it alive. we found we are more resilient than we ever thought, and have the ability to fight back and at times Just Do It.
and if we ever get back to working the rig someday, we have a renewed compassion for patients and caregivers. nothing like going through it to bring it home.

thank you all so much, 

[The Noob]

i wanted to add: over a year ago i bought a used small laptop off ebay for 147$ and that was express s/h as well. its been my lifesaver. i've taken it everywhere. many times when hubby was in hospital/clinic/docs i would look up meds and procedures and so on right there. during down times in hospital i would put on youtube and watch Ms.Marple. i'd always sit with him during hemo at hospital and he could use the puter but he usually slept. he has a favorite hemo nurse there, we both adore her. its funny how you get to know so much about the providers lives.
next time we go in hospital (it will happen at some point) i am just going to say hey, i'm his caregiver and whatever you do has to go through me and doc first. i am very diplomatic. up to a point. i compliment and support. unless i see gross negligence. they always seem to want to dose him with narcs. i was watching the other patients and they were worse off but much drugs. then getting yelled at for not getting up when they could barely raise their hand. i know my hubby and he and i have an understanding that no narcs if he can cope other ways. too many complications. if i had to leave briefly seems they'd run in and dose him up and leave him. so i just stay with him all the time.
once recently after surgery, the post op nurse says his O2 sat is too low and they will have to admit him.
i say no, lets get him up and move a little. she says ok and goes back to desk to surf the net. i started him little by trying to sit up, move torso a little. within 10 mins he was up dressing himself and his sats were normal. if i'd sat there and done nothing he would have been admitted.

boy i am on a roll this morning..LOL

[drgirlfriend]

Noob, I am really inspired by your story and what you're getting done. What my boyfriend and I are up against is little league compared to what you and DH are accomplishing. Thanks so much for sharing! 

[The Noob]

  welcome to the wide world of dialysis sis!!!