Hello

[mallen]

This is to give you an idea of who I am. I am a 62 year old man who has been on dialysis for a little over 2 1/2 yrs.

I first had kidney trouble when I was a teenager. My mom was a nurse and I had just finished a physical for high school when my mom came home and told "You have dirty
urine". I didn't know how to respond. I hadn't done anything to give me "dirty urine". That test started me on the road to protinurea. I went through 6 yrs. in the Navy before they decided to check me out. I went through several easy test and then I had my first IVP. The nephrologist looked at the results and said "Hmmm..." That's all, just Hmmm...

I was discharged in 1971 and sent to the VA Hospital in NYC (I had no health insurance) where they did two full physicals, a full GI series, an IVP, glucose tolerance test and finally one of the first kidney biopsies at the hospital. They biopsied the right kidney and the needle was so long that it also biopsied my liver. They were reluctant to let me leave after several days of testing. I later found out that, at that time, they tried to keep the patient count up in order not to lose funding the following year. I had to check myself out. Of course, I never got the results of any of the testing.

About 5 years later, I went to a cardiologist at Mass General Hospital. He was working to reduce my high blood pressure and looked into the kidney disease. Another round of several IVP's. This time with an allergic reaction that made my face look like something out of a horror movie. What I especially appreciated was walking through the main lobby of MGH dressed in nothing but a "johnny", black socks and shoes - I looked like a stand-in for porno movie. After all these tests, you guessed it "Hmm..."

As the years passed, my protinurea worsened even though I faithfully took all my high blood pressure pills every day. I landed up in a fight with my local doctor who was pissed that I missed several appointments. I told him that I did not miss a day without taking my pills and I was sick of seeing him every three months after the ritual blood test for creatinine. Well you only have 50% of your kidneys left, you only have 25% of your kidneys left, etc. I did not want to hear every three months that I was headed for dialysis and transplant surgery. He sent me to the nephrologist in his group. Nice guy, British car nut and a great wall in his office for tools etc. Some more IVP's, Nuclear Medicine tests, and another biopsy. This biopsy was done in the late '90's. It was certainly a lot easier than the first one I had. Still no firm diagnosis.

Things went downhill pretty fast after that. I went to another Nephrologist, who I am now seeing, who set me up with PD and helped me to get on the transplant list. The PD was tedious, I especially hated the cycler. It kept me awake at nights and I got tired of lugging all the water up and down the stairs. My clearances were not good on PD and we decided it was time to go on Hemo. It took about a month, but I started to feel better on Hemo. The clinic was OK, but I got tired of seeing all those really sick people. I also had a real problem with weight gain. No matter what I did, I gained 2kg per day. The weight gain, more than anything else, forced me to look at NxStage. I am now in my fifth week with NxStage and it's working great. I hope it keeps this way.

The transplant group at MGH seem to be a good group of people. I have had nothing but good results with these guys. Things have certainly changed over the years that I have been sick. The idea of doing your own dialysis would have unheard of when I was first diagnosed. I am thankful that I am around to see these changes I hope that NxStage dialysis will allow me to go back to work. I am feeling better now than I have in years. I'll keep you posted.

Mike

[Sluff]

Well I aked for an introduction and thats what I got... Excellent introduction Mike,

It's great to have you here at IHD. Sounds like you are on the right track with the use of the NxStage system.

If you haven't seen the site rules yet you can read them here. http://ihatedialysis.com/forum/index.php?board=34.0

We are like family here so welcome to the family.


Sluff, Moderator

[shay_pcb]

wow! you've been through a lot! glad you're doing better!

[Joe Paul]

Welcome mallen, good to have you aboard.

[MJB]

Welcome to IHD Mallen!!

I think you will love NxStage and hopefully will return to work soon.

Mike

[kelliOR]

Hello mallen,  Nice to meet you!

Kelli

[doglvr02]

 

[Ohio Buckeye]

Welcome to the IHD family Mallen.

[Rerun]

Hi Mallen and welcome to our site.  Sounds like you have been haunted with this eventula disease for a long time.  I have never had a biopsy and would be interested in the process.  If you find time maybe you could start a new topic on biopsies so we could learn about them.  Your second one not your first one.     Thanks again for a great introduction. 

Rerun / Moderator

[Bajanne]

Welcome to our community!  This is just the place for you to be.  So glad you joined us.  There is lots here - above all, a place to vent when you need to.  There is much to read here, but I hope you will also continue to post and let us know what is going on with you.

Bajanne/Moderator

[angieskidney]

Hi Mallen! You sound like you could tell a lot of great stories from your experiences even though you held off dialysis for a long time!

 

I have never had a biopsy and would be interested in the process. If you find time maybe you could start a new topic on biopsies so we could learn about them. Your second one not your first one.

I actually saw one being done on a TV show where the hospital I was in as a child had a kid who just got a kidney transplant not work so they had to do a biopsy. Too bad I don't have a video in/out on my video card I coulda made a video so you could see how the biopsy is done first hand!

Anyway, back to Mallen! I am glad you are here!

[nextnoel]

Welcome, Mallen!  It's good to have you with us!