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Long Island NY .. HI Everyone...
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Topic: Long Island NY .. HI Everyone... (Read 3207 times)
willielt1
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Long Island NY .. HI Everyone...
«
on:
August 03, 2011, 12:34:55 AM »
Hello everyone .. My name Is Willie I am From Suffolk County Long Island New York( South Shore)
I have been On Dialysis For a Little over a year Now ..
March of 1996 my lungs failed due to Cystic fibrosis ... So I received a Bi Lateral Lung transplant That was
Done In The Hosp Of the University Of Penn. .. It is Now almost 12 years Since i have had that operation..
I Still Work full time ( 10 - 11 Hour days) Driving a tracktor Trailer for a Large Oil/Fuel Company. After I got my lungs The doctors told me .. " Dont be surprised if you will need a kidney down the road because of the anti rejection meds" So Here i am.
My wife is a Very good match for me but her BMI Is too High ( She needs to loose about 35 Lbs) ...
On the Other hand The doctors told me i have 18 percent kidney function left .. So I have been going to
Dialysis Monday Night and Thursday Nights .. I made that schedule on my own without my doctors approval and my lab work stayed exactly the same for the Past 5 months I compared all my lab papers.. I believe they just wanted me there 3 days a week for there Bottom line.. That's another issue I'll get into some other time.
My Life is Good so far .. I Am Married... have a Excellent Job. House .. couple of nice cars .. Wish I Had a Children though... Anyway I Got my New Lease on life 12 years ago .. its been a great trip.. I Know Sooner or Later Something is gonna Get me.. I'm Not worried ..
Otherwise I am Riding this wave till it comes crashing down on me .. if it ever does ;-)
I enjoy this site ...
feel free to E Mail me with any questions ... Willielt1@aol.com
Another note I thought i would mention .. My Only major side affect from Dialysis is ... Not being able to sleep Afterwards ...some nights. .But even that is not that bad .. Otherwise i feel Great.
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Last Edit: August 03, 2011, 12:42:52 AM by willielt1
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They Say " you dont know what you got till its gone"
I Say " You Know what you got ... just never thought it would leave"
Ang
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Re: Long Island NY .. HI Everyone...
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Reply #1 on:
August 03, 2011, 01:01:25 AM »
interesting journey so far
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live life to the full and you won't die wondering
Poppylicious
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Re: Long Island NY .. HI Everyone...
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Reply #2 on:
August 03, 2011, 02:35:58 AM »
Willie! Lovely to 'meet' you.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003
(personal blog)
grumbles of a dialysis wife-y
(kidney blog)
sometimes i take pictures
(me, on flickr)
Everything was beautiful, and nothing hurt.
willielt1
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Re: Long Island NY .. HI Everyone...
«
Reply #3 on:
August 03, 2011, 06:57:54 AM »
This Site is Great .. I am going to give it to all the other patients in my unit ...
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They Say " you dont know what you got till its gone"
I Say " You Know what you got ... just never thought it would leave"
lmunchkin
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"There Is No Place Like Home!"
Re: Long Island NY .. HI Everyone...
«
Reply #4 on:
August 03, 2011, 08:30:34 PM »
Welcome Willie! You are definately in the right place here on IHD! I wish I had found it long ago, but thats okay, cause Im here now! I like your attitude towards life. You have really had your share of problems for sure! So glad you are here and really look forward to your posts.
Again Welcome & God Bless,
lmunchkin
Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present. NxStage at home
tbarrett2533
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Me licking my kidneys from my birthday kidney cake
Re: Long Island NY .. HI Everyone...
«
Reply #5 on:
August 03, 2011, 08:43:11 PM »
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list
Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
MooseMom
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Re: Long Island NY .. HI Everyone...
«
Reply #6 on:
August 03, 2011, 09:34:47 PM »
Ooooh, I wanna hear about the "other issue" ie your schedule that you made yourself!
Welcome to IHD!
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
Rerun
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Going through life tied to a chair!
Re: Long Island NY .. HI Everyone...
«
Reply #7 on:
August 04, 2011, 07:09:11 AM »
Hi willielt1 and welcome to IHD. I'm glad you received your lung transplant. I can't imagine. But here you are with us.... I would think 18 percent was okay for awhile. Usually they put people on dialysis at 10% or less. So don't let them bamboozle you before you are ready. Watch your potassium. There was this guy at my center who just up and quit dialysis and he is still alive doing well. Makes me wonder if they just want the money or what. I would not think that someone with 18% function would start dialysis. What was your creatinine?
Glad you joined us.
Rerun, Moderator
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten
Re: Long Island NY .. HI Everyone...
«
Reply #8 on:
August 04, 2011, 08:01:55 AM »
Welcome to our community, Willie! You've found a great place for information, support and encouragement. Also a great place to rant, rage, rave or just vent. You just have to keep on reading and keep on posting. You are now a part of the IHD family
ajanne, Moderator
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"
I LOVE my IHD family!
willielt1
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Re: Long Island NY .. HI Everyone...
«
Reply #9 on:
August 08, 2011, 09:49:48 PM »
Just got home .. My Cretin was 8.5 When i was first admitted in the OR 15 months ago..,. My cretin was just checked and it it at 4.8 right now ...
My Albumin : 4.1
My BUN Is : 69
URR is : 74
potassium is : 5.4
Phosphorus : 5.4
calcium :6.8 (LOW)
Hemoglobin is a little Low 8.9 ... but it has been like this for a long time ...
So My Labs are sort of stable .. i have been feeling fine .. I am thankfull for that
So I have a problem ... the place i go to for Dialysis is very nice ... I became friendly with 2 of the techs.. We fool around ( Verbally) and so on .. I became very attracted to one of them emotionally .. I am Married and Love my wife Very Much.. I asked them if we could all hang out one night and grab a bite to eat or just have a few drinks together .. .they Started distancing them selves from me. I told them many times things will not get out of hand... so make a Long story short tonight when i went to dialysis i feel like i have no value.. they smile and such just to save face but we dont talk anymore like we used to .. and it hurting me allot. we used to be sort of close together or so i thought. we used to ask eachother how the weekend was and this and that ... now it is so cold .. i used to look forward sort of to seeing them .. I also Feel like maybe they don't want to get close to me for fear of me dieing ,,, and that is what is also going through my head..
I thank all of you for your kind words and support... it is very comforting
I know I am rambling but i have to get some sleep .. have to be up in 6 Hours .. good night all l
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They Say " you dont know what you got till its gone"
I Say " You Know what you got ... just never thought it would leave"
lmunchkin
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"There Is No Place Like Home!"
Re: Long Island NY .. HI Everyone...
«
Reply #10 on:
August 09, 2011, 07:27:23 PM »
I teared up reading this, Will! And it saddens me that you feel this way! But listen please when I tell you the truth! You don't need their Validation to know that you are valuable to others around you, and especially your wife!! Don't feel bad about getting close to one of the techs either! You are going through alot and at times we all reach out to someone for emotional comfort!
Now are they buddy buddy with others in the clinic? I bet not! They may have sensed your emotionally state of mind at the time and felt that maybe they should back off and be more Professional acting, (They should have been that way from the start) and it hurt you! Just let it go and don't take it in a personal way!
If I were you, I would pull one of them aside and tell them how you feel or not feeling about the abrubt end to the "Buddy & Pal" friendship! If you did something inapporpriate, apologize and mend it! Im sure you are owed and apology too, cause they should have known better!
If you did something wrong, well my goodness, who hasn't! Just don't beat yourself up over it, it is not worth it, but YOU ARE! I don't know you but I know about this Disease! I know the affects that it has on lives! It can tear you apart if you let it and you have to be strong enough to look it in the eyes and say you are not going to take everything I have! You have enough on your plate, Will, I can only imagine! But we all can make it a little better over time! No it is no picnic, granted! But is it not what we make it?
Next time, you go in to that Clinic with your head held "high"! You hear me? Don't let this Beat you down! Let all see, that you no longer are worried whether they want anything to do with you or not! I may be wrong here, but I honestly think that they are just being a little more cautious with you and probably others also!
Hang in there Will! It is not the end of the World, and this too will pass!
God Bless,
lmunchkin
P.S. keep us posted, okay? Im not being nosy, just concerned!!!!
Logged
11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present. NxStage at home
rsudock
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will of the healthy makes up the fate of the sick.
Re: Long Island NY .. HI Everyone...
«
Reply #11 on:
November 17, 2011, 04:54:47 PM »
Welcome Will. Congrats living a full life even though you have @ chronic illnesses...not only ESRD but also CF. May I ask your age? I work with some kiddos with CF and am learning a lot about the disease. How is your pulmonary function?
Now addressing the situation with the techs...it is better to wait until techs offer a friendship outside of a dialysis center I think. Remember it is their job and they do start to care about the patients and get to know them, but it doesn't mean they want to be your BFF outside of the unit.
take care,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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