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Author Topic: Hey! Phil from Rome!  (Read 3820 times)
Phil
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What doesnt kill you, makes you stronger

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« on: May 03, 2010, 04:41:27 PM »

Hi there! My name is Phil, I'm 29 years old and live in Rome, Italy! I have a genetic kidney disease called Alport Syndrome, and I'm about to start dialysis. I have a twin brother who has already been through 3 years of HD after which he got a transplant and is currently doing just great! Gives me ALOT of hope. Just wanted to say hi and join this great community! Its hard for 'healthy' people to understand the mental toll, as well as the physical toll, which kidney failure (or any other disease) can have on you, and I find great strength in forums like this one, where I can share my points of view, or ask questions to people who understand EXACTLY what I'm talking about :D

Hope to hear from you soon!
Phil
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1993 - Diagnosed with Alport Sindrome
April 2010 - Fistula surgery on right forearm
May 2010 - Started HD
Still waiting for the call!!!!!
Dianejt
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« Reply #1 on: May 03, 2010, 04:42:53 PM »

Welcome Phil!
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caregiver to husband Frank

bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
monrein
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Might as well smile

« Reply #2 on: May 03, 2010, 05:05:35 PM »

 :welcomesign;  Phil to IHD.  I feel very sure that you will find lots of support and information here and I look forward to learn ing from you and your brother's experiences also.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
MooseMom
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« Reply #3 on: May 03, 2010, 05:23:03 PM »

Who cares about kidney stuff...I want to hear about ROME!   :2thumbsup;  How cool is that!?  If you live in Italy, where do you go on holiday?  I've got the travel bug; I've never been to Italy, so you're gonna have to tell me all about it.  We're glad you've joined us, and we hope that starting dialysis will go smoothly.  Are you pursuing transplantation like your brother?
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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."
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« Reply #4 on: May 03, 2010, 06:01:27 PM »

 :welcomesign;

I am glad to meet you!  :flower;
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looneytunes
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« Reply #5 on: May 03, 2010, 06:10:56 PM »

Hey Phil! Glad to have you join our group.  There are a lot of great folks on here so you will find loys of support and hopefully a few laughs too. 
 :welcomesign;
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« Reply #6 on: May 03, 2010, 06:19:27 PM »

Bornjourno!   ;D

Welcome to IHD Phil!  Too bad your twin didn't have 2 healthy kidneys and you could take one and never be on antirejection drugs.  I hope you get transplanted soon.

                       :welcomesign;  Looking forward to your posts.

Rerun, Moderator
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paris
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« Reply #7 on: May 03, 2010, 09:59:50 PM »

Nice to meet you, Phil.  It must have been interesting for your family to have twin boys having kidney disease.  It is good to hear that your brother got a transplant and is doing well.  What is your plan? To transplant or not?     We are very glad you joined us. It does help to talk to others who know exactly how you feel and what you are going through.  We share information, we support each other when we are down, and we have some fun here too.   I think you will fit right in   :2thumbsup;      Welcome to IHD.  Post often so we can learn more about you.   :thumbup;   And ask lots of questions!



paris, Moderator
« Last Edit: May 06, 2010, 06:51:22 PM by paris » Logged



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galvo
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« Reply #8 on: May 03, 2010, 10:04:12 PM »

G'day Phil and :welcomesign; You've come to a good spot here.
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Galvo
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« Reply #9 on: May 03, 2010, 11:48:58 PM »

Hi Phil, and   :welcomesign; to IHD. This is a great spot for info, fun and friendship. Check in often, and read, read, read. OH, and come in to the chat room on Friday nights.
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brmoore
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« Reply #10 on: May 04, 2010, 08:13:22 AM »

Hi Phil - Welcome :welcomesign;
      I can't imagine how hard it must be to live in Rome and have to restrict your diet. I would
cry every time I walked by a Gelato stand.
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« Reply #11 on: May 04, 2010, 08:44:43 AM »

Welcome to the site Phil.  I look forward to learning more about you and your brother. 
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May you live as long as you want and never want as long as you live.
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« Reply #12 on: May 04, 2010, 03:08:19 PM »

Welcome to our community, Phil!  So glad that you found us.  This is just the place for you to be.   You have come upon a wonderful group of people who, as you said, understand EXACTLY what you are going through.   We are now your new family, caring and sharing  :grouphug;  Excuse my curiosity, but I am a language fanatic.  Do you speak Italian?  That is the next language I plan to master.  By the next cruise ship season (October), I want to be able to say more than the little things I now say.
Looking forward to hearing from you.




Bajanne, Moderator
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I LOVE  my IHD family! :grouphug;
Phil
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« Reply #13 on: May 04, 2010, 03:25:30 PM »

Thankyou everyone for such a warm welcome!!! It really means alot to me! I look forward to chatting, writing, and getting to know you all!

Just to answer some quick questions....
My plan is to get a transplant. I've seen how much better my brother is now, and it really gives me hope! I'm planning on doing in center HD...in Italy Home HD isn't really a option, and unfortunatly I can't do PD because last year I had surgery on my intestine (I had diverticulitis!...really unlucky!!!), and so my doctors have ruled out PD. As for the rest...well...my my creatine level is at about 7 now..so it really is about that time! lol!

BRMOORE : dont get me started on food...lol! :D I LOVE to eat&cook....but due to high pressure, and diet I've lost alot of weight over the past couple of years...but I actually feel better/healthier now so its all good....plus I treat myself every one in a while! :D

MOOSEMOM : Rome is great...but if you want a real holiday Italy can offer so many beautiful places....the Alps or Dolomites if you like the mountains...or the beaches in Sardegna or Sicily....I'll be glad to help suggest some places for you to visit!
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1993 - Diagnosed with Alport Sindrome
April 2010 - Fistula surgery on right forearm
May 2010 - Started HD
Still waiting for the call!!!!!
Phil
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What doesnt kill you, makes you stronger

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« Reply #14 on: May 04, 2010, 04:03:56 PM »

BAJANNE : I'm half Italian...so yup..I speak Italian ;)
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1993 - Diagnosed with Alport Sindrome
April 2010 - Fistula surgery on right forearm
May 2010 - Started HD
Still waiting for the call!!!!!
grannysgirl
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« Reply #15 on: May 04, 2010, 04:47:52 PM »

 :cuddle; hi Phil from Rome. Sorry your kidneys decided not to work. Welcome. Wow, I am curious is dialysis is different in Rome then in the US???? This is an awesome group. Hope to hear more from you.
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Phil
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What doesnt kill you, makes you stronger

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« Reply #16 on: May 04, 2010, 05:11:27 PM »

Hey Grannysgirl...I'm pretty sure that dialysis is the same over here as it is over there :D The only difference I can see is that Home hemo isnt really a option here...but I think that that has mostly to do with the difference in healthcare systems.
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1993 - Diagnosed with Alport Sindrome
April 2010 - Fistula surgery on right forearm
May 2010 - Started HD
Still waiting for the call!!!!!
billybags
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« Reply #17 on: May 06, 2010, 07:44:57 AM »

hi Phil   :welcomesign;  to the family. I loved Rome, threw the obligatory coins in the fountain, I really wanted to go back.
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peleroja
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« Reply #18 on: May 06, 2010, 09:11:02 AM »

Welcome aboard, Phil.  Glad to have you here.  Come on back and post often.
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