new to this from MD's eastern shore

[marlinfshr]

I just joined and figured I'd introduce myself before I start asking any questions.

I think I'm still in denial stage but my numbers don't lie, I guess. Back in 1999 I had advanced stage 3 testicular cancer which required 13 month's of chemo. One of the chemo drugs was cysplatnum (if I remember correctly). They pulled me off of it because it was causing severe peripheral neurapathy and took my creatinine levels to around 2. several years later I had my blood work done and my creatinine levels were around 4. In 2009 I went in for a physicle for my captains license renewal and the level was at 4.4 and the doctors started scaring me with talk about dialysis and a transplant. I had an ultrasound and never went back for the results. I felt great and the boat I was working on was ready to leave for Costa Rica. So I went. I felt great for the past several years. Last fall it was at 4 and my new doctor stated I needed to redo my lab work in case they made a mistake. I did but stated that that seems about normal for me.

Then at the end of this past April I had a heart attack. I've had high blood pressure for years and all the men on my mom's side, and her, have had heart attacks. The preliminary blood testing showed my creatinine at 3.8 but they had to place a couple stents. Then came the dye. Shot the level up to 7.4. They put me on a slow dialysis in the hospital for 30 hours and it dropped to 3.2. After a few days it went back up to 7 so I had a catheter put in my neck. Now I've been on this 3 day/4 hour routine for the past month. My last lab results showed the creatinine at 5.6 but all other numbers were fine. It seems the only sign I'm showing is anemia. Though that has gone from a low of 8 to 9.9 last week and I'm not getting as short of breath. I've never been anemic before my heart attack.
I now have an appointment at the end of this month to consult with a PD surgeon and the beginning of August to see about getting on the transplant list. 

I guess I'm starting to accept that this is real because everything I read shows I need dialysis at these creatinine levels. I'm still hoping they can recover from the shock of the dye but my last blood work was done abou 3 weeks after the stents were placed and my creatinine was still at 5.6 so I'm slowely losing hope. However, I'm not going to let it bring me down. If I have to be on this until a transplant, so be it. I'll make the best of it. This attitude got me through cancer so I'm planning on it to get me through this.

Now to decide wether to go with the PD and manual exchanges or stick with the 3 mornings a week at the center.

[MaryD]

Welcome, marlinfshr!       

I'm doing PD and I do manual exchanges - only because machines and I don't get along.  Have you decided against doing PD with a machine?  Most people do APD rather than CAPD.

I have peripheral neuropathy because of chemo, too.  Makes life interesting not knowing exactly where your feet are.

[lmunchkin]

Welcome Marlin!  Glad you joined us.  Yea it is all overwhelming, but your outlook is good, all things considering.  My husband has tried several modalities and found that he can live well with Dialysis. He has done CAPD, CCPD, Hemo In-center & currently does Home hemo at home.  He is an awesome dude and loves to be alive.  He can't get a transplant, but has found that living on dialysis can take him a looooong way.  He knows all his options and is happy living for the moment!

Again welcome & God Bless,
lmunchkin

[Poppylicious]

  Marlin!

[boswife]

  and glad you found your way here .. hope it brings you even more  encouragement hangen with others who have lots of answers and help..     

[blondie1746]

Welcome, and have heart, you can get through this!  What part of the eastern shore?  My son goes to Washington College in Chestertown.  We live in Idaho now, but are originally from Maryland.  We love the eastern shore! 

I have been doing PD for about 18 months.  Started out doing manual exchanges and quickly switched to the Baxter cycler at night.  It gives me much more freedom than doing manual exchanges all day.  I work from home, which has made all of this a lot easier to deal with.  I am on the cycler for 8 hrs, so if I have to get up early the next day, I just hook up earlier, watch TV in bed, or work on my laptop.  It really works great for me.  Would I rather NOT be doing dialylsis?  YES!  But, considering the alternatives, this works best for me. 

Good luck with this "adventure" and ask questions whenever you wish!  Most of all, try to stay positive!!  This isn't a death sentence, it is keeping you alive!

Sheri