Hello From Boston!

[beachbum]

I would like to introduce myself. My name is Tommy. I was diagnosed with ESRF in December but I've been battling kidney disease all my life. Mine is caused by obstructions. My left kidney was removed when I was a baby. I was born sick. For some reason my birth mom didn't get me to the hospital until I was 8 months old and by then my left kidney was destroyed. I had a couple more obstructions from scar tissue after that. My last major surgery was when I was 8 years old.

I had been doing ok since then until my early 30's. My kidney function was always a little off but my GFR was still above 50. The past few years it's steadily declined. I had a doctor 2 years ago diagnose me with kidney disease caused by high blood pressure and he sent me home saying I just need more blood pressure meds. I remember getting an ultrasound done and the tech telling me I had fluid backing up into my kidney but the doctor said I was fine. In December I went to the ER for something unrelated and they saw my kidney function was worse. My creatine was 5.5. This time they discovered I had another obstruction and wanted to do sugery right away. I wanted to wait until after Christmas and get a second opinion at the hospital where my wife works. I'm glad I did.

I had a team of doctors look at my kidney and they discovered nothing can be done to save it. In fact, had I had the surgery at the other hospital I would already be on dialysis in their opinion. These are some of the best kidney doctors in the world. Since then I have been put on about 12 different medications to try and balance everything out. I was against getting the Aranesp injections at first but so glad I started them. I don't feel so worn down and tired anymore. I still have my bad days but overall I feel better. My kidney function is somewhat stable. My creatine has bounced around, dropping down to 5.1 and then back up to around 6. My doctors have told me I can start preparing for dialysis at any point I start feeling worse. I'm opting for PD since I'm 37 and my wife can help me with it. I just started the transplant process 2 months ago and have been through a battery of tests. My wife wants to donate one of her kidneys to me so we are looking into that. My family won't get tested.

I still have a long road ahead of me. I found this site kind of by accident. I was actually told not to come to sites like this by a nurse but I am so glad I did. I have spent the past couple of months kind of lurking here but finally decide to sign up. I'll admit, it's hard for me to accept that I'm going to need dialysis but sites like this one have given me hope. At least I don't feel so alone anymore. Kidney disease is tough because on the outside I look fine. Most people have trouble understanding that I'm sick and it's so hard to explain it to people.

This is me in a nutshell. I look forward to possibly making some new friends.

[willowtreewren]

Hey, Tommy! 

You landed in a good place for support and information. I'm glad you de-lurked. 

Stick around and let us get to know you better!

Aleta (who has a daughter living in MA)

[Willis]

I was actually told not to come to sites like this by a nurse but I am so glad I did.

That seems to be a common opinion. I'm not sure it's just medically related though...some people are just afraid of the internet and communications/knowledge in general. It's like dating sites...some people watch NBC and make the conclusion that anyone who chats on the internet must be some type of perv or predator. Many others have found their lifetime companions and soul-mates online.

Certainly it is easy to get bad information on the internet, but I think if one is wise and discerning that the information can be validated. My neph laughs (in a good way) because I'm one of the first patients he's had who has actually taught HIM a few things.

 

[boswife]

This IS a great place to have landed for sure   And im so glad you decided to 'show your face'    Im sure you've seen that it's the greatest bunch of people, who understand where eachothers at, and a great support place to be.  My well hubbys dr has also been impressed at my 'kidney' knowledge

[billybags]

Hi Tommy I am glad you have stopped "lurking" and have joined us. 

[carla13]

 

carla

[galvo]

G'day, Tommy, and   

[beachbum]

Thanks everyone! Nice to meet you! 

[Poppylicious]

  Tommy!

Congratulations on the de-lurk! 

 

[peleroja]

Welcome to the group, Tommy.  Lots of good info and friends here.  Glad you found us!

[Bajanne]

Welcome to our community, Tommy! Great intro!  I love delurkers!  It means I don't have to convince you that this is the best place on the web for anyone connected to the renal challenge in any way whatsoever.  You will find that you have a new family here.    My caring thoughts are with you concerning your transplant.  Your wife is a heroine to us.  Here at IHD, we particularly appreciate donors (or potential donors).  Looking forward to hearing more from you.




Bajanne, Moderator

[phyl1215]

   Happy your joining us.

[brandywine]

I CAN'T believe a nurse told you not to come to a site like this!? I know how much it has helped me, and I think you are seeing the same thing. Any time you have a problem, post away. You will usually get a response within a few hours, and sometimes within minutes.

[Ang]