You notice VERY few people post in the transplant section?

[kickingandscreaming]

Have a chat with your MD about Icodextrin, and ask him to be very candid about what part cost pays in the choice between Ico and destrose for you, but be sure to read these papers first so you can carry your own end in the conversation.

Thank  you, SD. I have had that chat before. But too early in the process before I really knew about my peritoneal character. When I asked my nephro--just when I was beginning PD- about using Icodextrin to mitigate the blood sugar effects, she brushed me off.  And I got the sense that it was mostly about $$$.  But now I see that it was too early to know just what kind of prescription I would be on.  Since doing the PET, I have learned that I am a high-average transporter, and I require short dwells.  Ico is apparently only used for long overnight or day dwells and if I were to need long dwells, I would be prescribed Ico for them. But I am on the cycler now (for the last 4 nights) and doing NIPD with dry days and 4 short cycler exchanges.  As far as I know, that's not something that can be used in that context.  If I'm wrong, then I will have the conversation again.  Right now I am planning to give the process a month and see how my next set of labs come out.  Other than the creeping blood sugar, my labs are perfect.  High and high-average transporters are ace solute clearers, but was also absorb more sugar than slow transporters. 

[tigtink]

I am deeply grateful for all who post here, past and present. The day I went for my fistula surgery three years ago was one of the worst days of my life. Reading about others who had gone through it helped me put things in perspective. Without people like MooseMom and cattlekid sharing their stories, I never would have pursued multiple listing and the chances of my getting a preemptive transplant would be much lower. I took to heart MooseMom's advice to go ahead and live my life instead of sitting at home stressing about my kidneys failing. I don't post much because I have been busy living my life, but I always know when I get really frustrated about all the things the transplant centers demand and the agony of the wait, I can come here and get support. And when I get really down, I read and reread stories from those of you that have had successful transplants. It provides me with the hope I need to keep fighting. So even though sometimes the posts here are sparse, this board remains a lifeline for me. I come here every day, even those I only post infrequently.

[DialysisGoneFOREVER]

Thank you SO MUCH for posting this!  I am one of those successful tx patients who don't often post. 

However, my father's kidney function is down to 27% and his nephrologist isn't moving quickly on getting a definitive answer on why hid kidney function has declined and continues to do so.  My father did have a artificial heart valve placed several years ago so I will make sure that he informs his nephrologist of this before his next appointment.  It would make sense that a change in how his heart valve is functioning could affect blood flow in general...it would also possibly explain some of his other symptoms as they don't all seem to be in line with just declining kidney function.

There are always exceptions to the rule. Of course some people do great without exercise but consider this. The kidney does NOT magically produce urine by itself! A dormant perfectly healthy kidney produces ZERO urine!

Your kidney depends on strong blood flow to produce urine and have a normal creatinine! Without good blood flow your kidney will fail! I do intense weightlifting and biking and it makes a HUGE difference! My creatinine has gone down and urine output has gone UP!

Your very welcome! I read early on how the kidney doesn't produce urine by itself but it DEPENDS on strong blood flow and oxygen delivery to function normally. That's why I notice a MAJOR difference in kidney function and performance after intense exercise!

What other symptoms does your dad have besides kidney failure due to the heart valve problem?

[MooseMom]

I have my fourth annual post-tx appointment with my transplant nephrologist scheduled for this Friday, 13 May.  For those of you who are considering tx, who are working to be listed or who have indeed been listed and are just waiting for the call, I thought you might find the following information of some small interest.

On the day before my tx, my creatinine was 4.0.  My egfr was 14.  I had been struggling with potassium for several years, and on the day I was taking 12 tablets of sodium bicarb just to keep my potassium in check.  I was taking phosphorus binders.  Luckily for me, I never had to be treated for anemia.  My calcium and PTH had never been a problem.  I had fsgs and had been diagnosed in 1992.  I had never had to deal with diabetes.  I was in relatively good shape for someone with stage 5 CKD.

I just this morning received the results of my latest blood draw; I have labs done each month, but once a year, before my big appointment, I have the usual labs done PLUS a whole shedload of other tests like hepatic panel, blood lipids, urinalysis, the whole shebang.

Here is a sample of my results.  Compare them to what they were the day before my tx:

Creatinine 1.13 (compared to 4.0)
Egfr 54 (compared to 14)
Uric Acid 4.7 (compared to a level high enough that I had to take a daily dose of allopurinol to avoid gout episodes)
Phosphorus 3.8 (no need for binders, anymore!!)
Potassium 4.4 (no need for sodium bicarb, anymore!!)

In fact, the only results that were "out of range" were creatinine and egfr, and those numbers are good for a renal transplant patient.

Apart from the immunosuppressants, I do take 2 hypertensives (although I may lobby for a reduction) and my bp is very well controlled.  I also take 2 meds for cholesterol (I may request a look at those).  Before I started "treatment" for my fsgs back in 2004, my cholesterol was 550 and my triglycerides were 2100.  My GP said he'd never seen numbers that high in a non-diabetic patient.  But with meds and a new kidney (and plenty of exercise and a good diet), my cholesterol is now 145 and triglycerides are 110.

If anyone has any questions, I'm happy to address them. 

[cattlekid]

I have to laugh....my annual appointment is on Monday!  Maybe someday, we will get on the same schedule so we can carpool 

(for those not in the know, MM and I had our transplants at the same hospital)

I have my fourth annual post-tx appointment with my transplant nephrologist scheduled for this Friday, 13 May.  For those of you who are considering tx, who are working to be listed or who have indeed been listed and are just waiting for the call, I thought you might find the following information of some small interest.

[MooseMom]

Cattlekid, are you having to go to Madison for your appointment?  My neph sees tx patients on Fridays in a nephrology clinic in Rockford, so that's where I'll be on Friday.  I suspect that since so many patients come from Chicagoland, many Madison nephs may have clinic appointments closer to Chicago.  Good luck to you on Monday!! 

[cattlekid]

PM'd you to stop the threadjack 

Cattlekid, are you having to go to Madison for your appointment?  My neph sees tx patients on Fridays in a nephrology clinic in Rockford, so that's where I'll be on Friday.  I suspect that since so many patients come from Chicagoland, many Madison nephs may have clinic appointments closer to Chicago.  Good luck to you on Monday!! 

[willowtreewren]

MooseMom, Deanne, & Willow, did you have have living or cadaveric donors?

Deceased.

[DialysisGoneFOREVER]

I got my transplant in the Chicago area too! At UIC. But I'm from St.Louis.

Which hospital did you guys go to for Tx?

[KarenInWA]

I am post-tx by 4.5 years. I had a living donor. She is married to my Dad's cousin. She was 67 to my 38 at the time of our surgeries. She is obscenely healthy and has never been ill her entire life (I wish I could be that kind of obscene!). The surgeries went well, and we both healed fairly easily. My kidney took a slow time to lower creatinine  for some reason, but it was steady. Then, come late March 2012 (I was transplanted in Nov 2011 on Thanksgiving Eve) my creatinine went from 1.4 to 1.7 and stayed there for the next 2 blood draws. The dr decided to to a biopsy to rule out the slight chance of rejection, and to look for any tacrolimus toxicity. Biopsy went fine -- until a few days later. I woke up with no urge to pee! To make a long story short - I ended up calling the on-call doc and went to the ER on a Sat evening. Ended up having emergency surgery that night to save my kidney from an obstructing biopsy. I lost a lot of blood overnight, so the next morning (Easter Sunday)  I had to have 2 units of radiated blood along with a round of dialysis due to my K being high. I was in acute kidney failure. My creatinine got as high as 9.9 during this visit.

My creatinine ended up settling somewhere in the low 3's My range since has been as low as 2.8 to as high as 3.5 when ill w/a UTI. I was put back on the transplant list in 2013, then listed as inactive later that year or 2014 (whenever I met the new dr - he replaced the one who did the biopsy. The biopsy dr now works in Idaho - where there are no transplant hospitals). Now I am in the process of being listed as Active again. (should add -  the new dr and I both agreed to change my status to Inactive due to my being stable. I still am stable. The idea for being Active now is I won't get calls for a year or 2 at the earliest anyway.) And the good news? I have 0% PRA!!! Woot!!!

My tx hospital is University of Washington in Seattle.

I do have to say that I prefer transplant as treatment. Even with the biopsy setback - which was very depressing, I'm not going to lie - I feel like I live a normal life. I have had only one other hospital stay since that emergency surgery. It was a 2-day visit for chronic UTI. Had IV antibiotics and labs monitored. Easy hospital stay w/a private room, decent food, and it fixed the issue. Between the IV's and oral Cipro, it not only cured the chronic UTI - I haven't had another one since. I don't have any serious side effects from the meds. I am very lucky to have a good union job w/really good benefits. I get all my meds except one for a $0 co-pay. The only one I have to pay for is  Renal Vite, and that's just under $15 a month.

I work FT at a geek/desk job, work OT when I can or have to (10-hour days right now), love going on trips and day trips, vacations, see shows, etc. Not having to worry about dialysis makes all of that easier. Carrying meds in my purse and making sure I have enough water to drink is easier to deal with. My only complaint is having to use the Honey Buckets when at outdoor concerts!

KarenInWA

[Chris]

I started coming here post kidney and pancreas transplant (Dec 2000 at Northwestern in Chicago, IL), but things got in the way and was easier to keep up ith some of the members from here on Facebook. Eventually computer problems happened and I could not post using an iPhone at the time and interest was subdued. Now there are more new people than people I know on here.

[DialysisGoneFOREVER]

Chris, how much medication are you on?

KareninWA, that's the kind of NIGHTMARE we all DREAD! Glad you're doing better. That's why I NEVER want to have a biopsy unless it's REALLY necessary!

[cattlekid]

I live in the Chicago area but received my transplant at the University of Wisconsin.  I was fortunate enough to be able to multi-list so I was primary at University of Wisconsin and secondary at Northwestern in Chicago.

I got my transplant in the Chicago area too! At UIC. But I'm from St.Louis.

Which hospital did you guys go to for Tx?

[Zach]

I started coming here post kidney and pancreas transplant (Dec 2000 at Northwestern in Chicago, IL), but things got in the way and was easier to keep up ith some of the members from here on Facebook. Eventually computer problems happened and I could not post using an iPhone at the time and interest was subdued. Now there are more new people than people I know on here.

Hey Chris!!
Good to hear from you.
 

[Chris]

Chris, how much medication are you on?

Are you asking total medications or just immunosuppressants? One is going to a longer post!

[Chris]

Hi Zach

[DialysisGoneFOREVER]

Chris, how much medication are you on?

Are you asking total medications or just immunosuppressants? One is going to a longer post!

Just the immunosuppression. Can you please also just say the number of meds you take a day? Thanks.

[Chris]

1 mg Prograf twice a day
1 mg Rapamune once a day
28 prescriptions so far, maybe more after Monday due different issues. However some are temporary medications.