Living donor failed testing

[cattlekid]

Many of you know that my mom was in the middle of being tested to be a live donor.  Well, I got the call I didn't want today...she has failed her testing.  She got as far as the glucose tolerance test.  Her glucose level was in the low 200's and they won't take anyone with a glucose level over 139.

Ugh.  She is really upset and depressed.  I know she really wanted to do this for me.  I told her that it was more important that she gets to the doctor and is checked out in case she is pre-diabetic. 

I do have one more living donor on deck that I know of.  I will be seeing her tomorrow and will give her the number to call the center and get her testing started. 

I am now resigned to the fact that I will have to get a fistula.  I have been putting off the clinic staff by telling them that my mom is being tested.  Now I don't have that excuse to fall back on any more.  I am just so afraid that I will be disfigured for life.  I had a tech this weekend at the clinic I traveled to that had a fistula and it looked like the @$%$%  Rocky Mountains.  I would like to be able to wear short sleeves in the future.  I am also one who works on her laptop at dialysis and I would like to continue to be able to do so. 

Crap, crap, crap.   

[okarol]

If you want you can opt for a temporary chest catheter while working up living donors. That's what Jenna will do if the timing doesn't work out.

[cattlekid]

I've had my chest catheter since January.  My center is hot and heavy on getting it out.  They had me in for a vein mapping back in February and I have successfully put off the surgery until now.  I just don't see a way out and it would be nice to take a shower....

[cariad]

So sorry, hun.  I hope your next living donor jumps at the chance and sails through testing.

I've had my chest catheter since January.  My center is hot and heavy on getting it out.  They had me in for a vein mapping back in February and I have successfully put off the surgery until now.  I just don't see a way out and it would be nice to take a shower....

Your 'way out' is simple. I want to keep the cath. When it's your body and you on dialysis, you can get a fistula straight away.

I assume that you have read up on the dangers and disadvantages to the tunneled line. (Infection and lower clearances) I had a line in for a month, and I took showers every day, just carefully. I am so glad that I put off getting a fistula, because my veins are crap as it is so it did not look like it was going to work out, and I have no scarring from my cath.

There are people who use their line for years and years. Rightside was very helpful in reassuring me that it could be done if I needed it, as he had his for a year and I don't think ever had infection with it. There are many others, too. Your unit may not like it, but it is not their decision.

Good luck! 

[okarol]

I've had my chest catheter since January.  My center is hot and heavy on getting it out.  They had me in for a vein mapping back in February and I have successfully put off the surgery until now.  I just don't see a way out and it would be nice to take a shower....

Jenna had her chest catheter last time for 9 months. There was never a problem. I did use a SureSeal and Saran Wrap so she could shower once in awhile. Do what feels right for you.

[rsudock]

Cattlekid do the buttonhole technique on the fistual won't disfigure it as much...makes it easier to stick too!

xo,
R

[Poppylicious]

I'm so sorry your mum failed the testing.  What a blow for both of you.  If there's one upside to being tested as a living donor though, it's that some things are picked up on which may not have been otherwise.  I really hope the you have good news with the next person! 

As for a fistula ... Blokey refused for the longest time and had a chest line for eighteen months without getting an infection.  Obviously a fistula has made dialysis better (clearance wise) and he can now shower with no fear(!), but I'm sure you can put them off for a few more months if that's what you want ...

 

[kellyt]

   I'm so sorry.  It's tough when they start bumping your possible donors.  I hope you're Mom's okay, too.

[Cordelia]

I am so very sorry   

I have a chest line ....and.....I've had mine for a year. No problems whatsover. I have never, ever had even one infection and it runs well ....once in awhile they have to put the liquid draino down my line but generally, it runs quite well and my clearances are super.    

I also shower daily with it. I wash around the site very carefully. I use Dove Sensistive Skin bodywash, that's all and use a white chlorhexidine stick afterwards and swab around with the little stick. I wrap my tubing with saran wrap with an elastic band to keep it snug. It doesn't get wet. I was determined to make it work having a daily shower. I went from last Aug to Christmas Eve with no shower, and I hated it so I pushed my unit (Begged) to let me try showering and have done so since. Chrismas Eve was a real treat. I think I stood in the shower for half an hour!       

The only downside to the cath in the chest is that you cannot swim, that's all.

[RichardMEL]

I'm with Poppy on this (don't tell her hubby!!).... I'm sorry your mother didn't pass the test, but that they found something to potentially be an issue is a good thing in that it can get checked out more closely and hopefully get on top of anything that may be brewing ASAP.

Yes, it's a rreal blow and very upsetting for you both - I went through the same with my own sister when she alsoi failed at the last hurdle. All I can say is what I said to her at the time (and still feel) - *ALL* I could ask or expect of her as my sister was that she step up and be tested. I'm not angry with her that it didn't work out - it's not HER fault!! And while it was really frustrating at the time as it felt like a real setback, I also felt a little relieved because if I did take her kidney I would forever feel responsible for her should something happen to her that could be traced back to her donating. Now, I didn't have to worry about that.

Your mom did all she could do - get tested - it didn't work out, but maybe it is a blessing in disgusise - specially if that testing has potentially picked up something of concern.

You will get your tx in due course and the disappointment will pass. Frankly I'd be more disappointed if my family members didn't put their hand up to test.....