Hello from Rochester, New York

[gearhead11175]

Hello,

  My name is Matt, I live just outside Rochester, New York, i'm 33 years old, married, with a 4 year old son. I recently heard about your website at clinic today. I am a kidney transplant recipient (almost 3 months ago) from my older brother Chris.  I was diagnosed with IgA Nephropothy about 5 years ago, and was on CAPD for the past 3 years. Like your introduction said, I am also VERY thankful that CAPD exists, but i really,really HATED it. But for me, it was the best treatment choice for me and my family. I could still work and be a husband and father, but my social life was prettty much non-existent.

  I was going to the home dialysis clinic thru Rochester General Hospital. And although the hospital itself leaves a little to be desired, the staff and doctors at the Dialysis clinic were AWESOME. Especially Dr. Steven Silver, and my CAPD nurse Chuck Jones. When it was time for the transplant, everyone decided that the surgery would take place at Strong Memorial Hospital which is not too far away. Now, I had a poor pre-concieved opinion about Strong Hospital mainly because of my transplant coordinator Barbara who NEVER contacted me, NEVER checked in on me, NEVER returned by calls and NEVER kept me in the loop. About a month before my transplant, she retired (so you know her headwas probably somewhere else.) Once I started meeting with the surgeons, nurses, doctors and staff of the transplant unit and the transplant went as planned, i came to find that they are a TOP NOTCH group that truely cared and it showed in the level of my care.

  I have had a few "bumps in the road" after the transplant. The day after i was released from the hospital, I had to be re-admitted and treated for a rejection. I've had a couple of other scares too, so far i've had 3 biopsies on the transplanted kidney, and no further rejections since the first one. So after some medication struggles with my cheap ass & unprofessional prescripton insurance companies and their "specialty pharmacies" thing seem to be settling down.

  I think that the biggest difference in my life since the transplant isn't that i'm no longer a slave to CAPD, but the weight that has been lifted not only from my shoulders,but my family. ESPECIALLY my wife, who had to deal with all this; the diagnosis, the dialysis, the not knowing; the uncertainty. I really never realized how much this effected her mentally, until the doctor's came out and told my family that the surgery went well and that my brother and I were both alright. My wife, my rock.. the one who got me thru it all, broke down into tears.

  Well, it's really late, I thank you for listening to my story. There is a lot of details left out, if  you want to know more, feel free to ask me anything. Any of you that are facing dialysis, or a transplant, i'd be happy to talk with you.

Cheers,

Matt

 I'm not much for imoticons, but i love the banana doing the "peanutbutter jelly time" dance.

[MooseMom]

I'm so glad you've joined our site.  All of our members have their own unique experiences and their own unique perspectives, and I've found that everyone has something to offer.  Any story about successful transplants are greatfully received along with stories about those who are living full lives on dialysis.  Not everyone chooses transplantation.

I can just imagine the weight that was lifted from your wife's shoulders.  I worry about my husband's shoulders.  I'm not on dialysis yet, but once I do have to start, I know that our lives will be irrevocably altered, and I am not sure that my husband truly understands what that means.  Suffering from ESRD is bad enough without having the extra burden of knowing how it is affecting your family.

I am so glad you have this second chance at life, and than you so much for your very kind offer of support for the rest of us.  That's very thoughful of you.

[galvo]

G'day gearhead and  .

[Jean]

Welcom, welcom,. welcome to IHD. We are glad you are here with us. Post often.

[Poppylicious]

  Matt!

I'm the wife (who regularly bursts into tears, but not in front of my Blokey) of a dialysis patient. 

Yay! for your transplant!

 

[thegrammalady]

  this is a good place to land, no matter where you are in your "kidney travels"

[peleroja]

Welcome to the group.  Lots of good information and friends here.  Glad you joined.

[Sax-O-Trix]

Welcome!   YOU are just the very person I need to talk to!  I  had the very same "Barbara" (I also find we have to play delayed-phone tag with everyone, including the donor team.)  I started the eval process last December and am getting very close to actually needing either the transplant or dialysis.   Just got a call from my new coordinator this past week, she seems nice.  I am hoping for a transplant from my older brother soon.  Did you see a nephroplogist at Strong or did you keep Dr. Silver?  My neph is at Strong because I have known for at least 5 years that I was going for a pre-emptive transplant...

[kellyt]

I love peanut butter jelly time!!!   

Welcome!  And congratulations on your transplant.  I had a strangly, uniterested coordinator, too.  Not my first, but my second.  My first left just before my transplant, too.  I transplanted in Nov 2008 and received my kidney from my sis-in-law, Etta.  She's my husband's sister.  I look forward to hearing more from you.   

[gearhead11175]

Welcome!   YOU are just the very person I need to talk to!  I  had the very same "Barbara" (I also find we have to play delayed-phone tag with everyone, including the donor team.)  I started the eval process last December and am getting very close to actually needing either the transplant or dialysis.   Just got a call from my new coordinator this past week, she seems nice.  I am hoping for a transplant from my older brother soon.  Did you see a nephroplogist at Strong or did you keep Dr. Silver?  My neph is at Strong because I have known for at least 5 years that I was going for a pre-emptive transplant...

Trix,

  Good to hear from you. Once the transplant happened, they removed the peritoneal dialyisis catheter since I no longer needed dialysis. I have been following up with the nephrologists at Strong. I haven't seen Dr. Silver in over 3 months, but while I was in the hospital recovering, Dr. Silver called me to see how I was doing. That's just a testiment to his character. He's awesome, professionally and personally. If by chance you do have to go on dialysis (and I pray you don't) I would HIGHLY recommend Dr. Silver and the home dialysis unit from RGH.

  I hope all goes well for you, hopefully you can go right to transplant & skip the hassle of dialysis. If you have any questions or need to chat, you can e-mail me at mdrchamberlain@gmail.com or post back here!

Hope to talk to you soon.

[Bajanne]

Welcome to our community!  That was a great intro - the kind Epoman loved.  Congratulations on your transplant.  You will now be put in our Hall of Fame!  Because of what you have been through you have lots to offer here.  And we have lots to offer too - information, support and encouragement.  In fact I consider this not just a website, but a genuine family   You just keep on keeping on.




Bajanne, Moderator