Introducing myself....

[justme15]

Hello!
I found this site while searching the internet for a transplant/dialysis support group.  After reading some of the threads and posts, it seems like this site is very informative and friendly!
A bit about myself, I am 35, and was diagnosed with FSGS when I was approx 12 y.o. When I was 22, I began PD, not sure what the technical name was, but I did it for 8 hrs at night. I did pretty well with PD. I got my first transplant when I was 24, 04/2001.  Ten years later my txplant is slowly failing and my doctor has been monitoring my lab values every 3-4 months.  My creatinine is 4.07, BUN 62. all other labs are fine except for Hgb..which lingers at about 7.5...so needless to say I am always, always tired. I'm still working though, I'm a physical therapist. 
I am on the transplant list, i've been on it for a little over a year. I anticipate starting dialysis soon..I would like to do PD since I am very familiar with it, and I was able to get through grad school while I was on it, so I figure I'll be able to work my job around it as well. 
I'm hoping that I can get some support and advice and give support and suggestions as well.  My mom was on hemo for 17 years before she passed away in May of this year, so I am very familiar with hemo as well.
So, that's my story in a nutshell! I hope to learn more about all of you!

[MooseMom]

Well, you're an old hat at all of this stuff, so I'm sure you could teach us all a thing or two!

How wonderful that you were able to be transplanted and have 10 good years off dialysis.

That's great that you already have a year under your belt re accrued time on the list.  I was diagnosed with fsgs 20 years ago, and I, too, have been on the list for a bit over a year.  I'm also anticipating starting dialysis soon, although 2 years ago, my neph told me he anticipated that I'd be starting 6 mos to a year from then.  It's been two years and I'm shooting for many more years! LOL!  So, my point is that it is entirely possible you may have longer than you think before having to initiate dialysis.

I'm really glad you joined because we have so many members who have all sorts of renal diseases and are on all sorts of modalities, and I'm sure everyone here would be happy to share their experiences with you.  Not only that, but since you've already been down Renal Road, your own experiences will be invaluable, so thanks so much for joining and offering to share.

[Rerun]

Hi Justme15, and welcome to IHD.  Ask your Nephrologist about Procrit which is a shot that raises your red blood cell count so you won't be so tired.  Once you are on dialysis they call it Epogen but if you are not on dialysis they call it "Procrit".

Yes, I would try for PD again.  There are no guarantees as it will depend on how much scar tissue has developed.  Your peritoneum has to be permeable for the toxins to transfer.

You have come to the right place.  I too have lost a transplant and had to start dialysis again and it sucks.  I hope you get transplanted before you have to restart dialysis.  Hint ... my name..  Rerun.  Like a bad TV show rerun.

Stay tuned!!

Rerun, Moderator    

[justme15]

I am definitely hoping that I can hold onto this kidney for as long as possible!  however I'm now experiencing swelling in my legs, and intermittent bouts of nausea..which makes me wonder if dialysis will be sooner rather than later. I'm not sure, because when I did dialysis at 22, I felt completely fine! I still urinated, no swelling, no anemia...but my numbers were off so my doc started me on dialysis. So, I don't really know how bad  I have to feel before it's appropriate for me to start.

Rerun.. actually I have been seeing a hematologist for my anemia. I've had too many blood transfusions to count...I take procrit weekly! and my hgb remains at ~7.5.

[willowtreewren]

Welcome, Justme!

 

You're taking Procrit and you are STILL at 7.5?? Holy cow!

It does sound like your symptoms are pointing toward dialysis sooner rather than later.

This is a wonderful, valuable site. I'm glad you found "us."

Aleta

[lmunchkin]

Welcome to IHD, Justme!  Sorry you started so young, but glad you found this site.  How has your iron levels been?  Just trying to understand why hgb is so low, when you're taking prcrit every week!!

Again welcome & look forward to your posts,

lmunchkin

[justme15]

hello willowtreewren!
imunchkin- the doctors are blaming it on kidney failure. I have had a bone marrow biopsy to rule out any problems with my bone marrow. so..the doctor's plan is to give me procrit weekly and transfuse if my hgb goes below 7!

[cariad]

Wow, have they told you what your PRA is? Have they been careful to only transfuse you with leukodepleted (clean) blood?

Why haven't your doctors switched you to Aranesp? I took Procrit and it did nothing to raise my hemoglobin. Apparently, this is fairly common that renal patients do not respond to Procrit, but will to Aranesp.

[RichardMEL]

Welcome to IHD Justme!

First of all, I'm sorry that you lost your mother so recently - and I will make an assumption that kidney failure was involved given she was on D for so long. Either way a shap reminder of how fragile our lives are and how close we are to the edge sometimes.

Having said that it sounds like through all of this you've done pretty well. I too am astounded that you're walking around and working with such a low hemoglobin - you must be a trooper! I do agree with Cariad that perhaps you should be switched to aranesp or something else to help get that hgb up!

One thing I'd also add in relatin to how you felt prior to your first dealings with D, and now is that when you were 22 you had your natural kidneys failing and it's quite a different situation now with a tx kidney, which already was always only going to give half the performance of the normal two(which is more than enough when things are going well of course) but with it failing like this that it's struggling - and you have that low hemoglobin as well - I'm not surprised you feel so low at times.

It does sound like you may need D soon - your creat is creeping up, you feel so tired due to low hgb and you're feeling the nausea etc all associated with ESRD - sorry to say.

one thing - have they suggested your FSGS affected the transplanted kidney? 10 years give or take is a wonderful length of time for a transplant - I hope it can hold on longer!!!

[justme15]

I will ask again about Aranesp.  Last time I asked, they said it was essentially the same drug and would not make a difference.

[RichardMEL]

yeah that's a funny one. I too had thought that EPO and Aranesp were pretty much the same thing, but it does seem that, for some people, just the slightly different drug can make all the difference. Certainly I would suggest that if it's essentially the same in their view then surely it wouldn't hurt to give it a go if your hgb isn't coming up the way it should currently. Of course I'm ignoring issues involving insurance, payment for drugs etc......

[Ang]