Transplant referral

[Deanne]

My neph set my referral in motion this afternoon to start the transplant listing process. My creatinine is at 3.3 (up from 3.0 two weeks ago).

She asked if she'd already referred me to an education class about dialysis, too. I told her she hadn't, but I'm already thinking I'll prefer PD if I don't get a pre-emptive transplant. She asked what I knew about PD and HD and where I learned about them. I told her about this site of course and was able to answer the brief quiz questions she gave me about each.  She said it sounds like I don't really need to attend the class, but that I can if I want to. I will. There's always something new to learn.

Back to work for me tonight. I need to make up a couple hours of work from my neph appointment. I don't want to use up my personal time unless I have to.

[okarol]

We contacted the local hospital directly when it was clear Jenna's GFR was below 20, which is when a patient is eligible for wait listing. No referral is required. The next step was to complete a form they mailed to us (some centers have you do it online) and once they get that they open a file. Then, later on (their form says 2 to 4 week, but, well, it was 6 weeks) they called to set up a transplant evaluation day. We did that yesterday, it took all day.
I hope things go well for you. The sooner you get listed the better chance you have of getting a preemptive transplant. These things take lots of time. It's been 3 months since we first called the transplant team, and it may take 3 more to get her listed. Hopefully her kidney lasts and she can avoid dialysis, but you never know how the creatinine will go, fast or slow.

[Deanne]

Thanks for the information Karol. I appreciate the timeline you gave me. Realistic expectations will go a long way toward avoiding frustration. I hope Jenna is able to hold out.

[MooseMom]

Boy, my neph never offered me any sort of dialysis class.

[cariad]

Boy, my neph never offered me any sort of dialysis class.

Mine tried to order me to attend one. That's why she lasted for one appointment. She told me I needed 'to be educated'.

I went to the appointment, which there was a substantial charge for, and I spent the entire time telling the nurse how out of line the nephrologist was, putting the nurse in the position of trying to defend this woman. When the nurse left the room, I rifled through my file and found 'does not want to take medication' which either shows some sort of language processing disorder on the part of the nephrologist, or was a deliberately malicious note. I had told her that I intended to do the trial to get off all medication and that I was going to hold off on an access.

I learned nothing from my appointment, which was one on one. (Oh, I did learn that my vit D was dangerously low.) I had no questions, had already been told I could not do PD, and had a plan for a transplant which they willfully ignored. I asked about my options on here, got a wonderful and succinct response for free, and completely tailored to my situation. (I can still remember jbeany gave me a great response that really helped!) I wish I had been offered an appointment, not told by the nephrologist that she had no time to explain anything to me and so I had to be handed off to someone else to deal with my immense stupidity.

I hope you get something out of the class, Deanne!

[Deanne]

The class is offered by Fresenius. It's called TOPS and is offered in several states. I found a link but I don't think links are supposed to be posted here, so do a web search for "fresenius tops" and you'll find it easily.

[paris]

I'm glad the process is starting, Deanne.  My neph offered classes to me and I went to anything I could.   From the first orientation meeting to being listed took me about 9 months. A lot of that was scheduling issues.   I feel fortunate, because I didn't have too much trouble along the way.  I didn't like my second co-ordinator, but that was just personality differences.   I'll be praying this all goes smoothly, quickly and your name will be on that list in no time.   Good luck        

[Deanne]

Thanks Paris!

[AguynamedKim]

I hope everything goes well, Deanne.  I look forward to hearing about the process and what you think about it.

Good luck! 

[MooseMom]

Great news that this is all getting underway.  I agree with Paris...seems that scheduling issues are the main things that gum up the works, especially scheduling the cardiac tests.

I have one suggestion...keep copies of everything and get a fax machine if you can afford it.  Being able to fax test results to my transplant center saved a lot of time.  There will be lots of paper flying to and fro, and things can get misplaced, so if your transplant center calls you and says, "We have everything except for x.", you'll be able to fax your copy to them.  This happened to me several times.  Keeping copies and notes is also helpful for when you have to repeat the whole testing process next year...you'll already be a pro!

[Deanne]

It sounds exactly like a mortgage / refinance process! Thanks for the tips / heads-up. Can't do a fax machine - I got rid of my land phone line years ago and I use Clear (not broadband) for internet, but it's easy enough to fax things from work.

[MooseMom]

It sounds exactly like a mortgage / refinance process! Thanks for the tips / heads-up. Can't do a fax machine - I got rid of my land phone line years ago and I use Clear (not broadband) for internet, but it's easy enough to fax things from work.

LOL...that's about right!  And as long as you have access to a fax machine, that'll work.  I've just found that having fax capability very helpful.

Keep us posted!