It’s April. Back in December, Quinn was evaluated for transplant. Sure, they said, she needed one – just not yet. So we started the waiting process while we waited for her kidneys to fail (more).
In February we got a second opinion from another transplant center and they said that at their center, she would be processed for transplant, given her (lack of) kidney function and her on-going quality of life issues.
Miraculously, at the same time our local center said they would process the paperwork, based on slightly worse lab values and quality of life issues. The paperwork was sent to the hospital’s financial department for it to be – I don’t know, filled out/packaged up – and sent to our insurance company in the next couple of weeks. I’ve called Quinn’s case manager at our insurance company and told her it is on the way.
If history repeats itself we’re looking at…
- 2-4 weeks financial approval (month of April)
- 3 months live donor testing
- 1 month to schedule transplant
So that’s around July – August, give or take. That’s the beginning of school. Quinn will likely have it near the beginning or after school starts. Which completely sucks, you know, if you are entering 2nd grade and enjoy school. Also, with the time frame we are facing, I suppose it goes without saying (a pesky reminder) that she could end up on dialysis.
This time frame is not what we had hoped. We’d hoped she’d be able to be transplanted early summer so she could enjoy some of what summer is all about and be physically healed by the start of the school year.
Luckily, our Quinn Potential Donor #1 (overall PD#2 – see how confusing it gets?) is open to time frame and location (I know, she’s terrific, right?) but we have little to no control over the situation. I can help things along; make sure paper work gets routed, get tests scheduled, and that all the parties are talking.
And there are some parties involved: QPD#1, us, Quinn transplant coordinator, donor transplant coordinator, test schedulers, team of doctors for donor, team of doctors for Quinn, insurance case manager, insurance financial department.
That’s a lot of wrangling. There’s only so much that can go as smoothly as possible, right?
That QPD#1, she’s one heck of a gal!
Love you!
There are more earrings — they are lying in wait for when she needs a boost. I’m just holding onto them and you let me know when to release them to the wild. I am thinking of you guys.
Holy crap…does it really take that long. We are looking at possibly starting the testing process in July or August. Hopefully my son will be big enough by then to be transplanted. Guess we’ll have a thankful Thanksgiving if it takes that long huh? Is there anything I can do now…go get my physicals and exams done so they have them on file?
Karen,
Here is takes that long. This is not the case, so I hear, at other centers. I know of 3 or more other pediatric centers that take about 4-6 weeks for donor testing.
I will say that it will help if you get your GYN and mammogram visits taken care of – but not too far out – probably if they are a few months within the time of transplant you should be okay. Also, if there has ever been anything questionable on a test in the past, your team (by your I mean YOUR team of adult neph, etc) will want to know about it, so get copies of those records now and save some time.
This stinks…I am so sorry. I am praying for some good kidney karma and things go quicker than that for sweet little Quinn. Your plate is piled so very high…it’s hard to take a breather.
I am thinking of you and I love you guys.
Love,
Jen
My head spins just thinking about it all so I can’t imagine what it is like for you……I’m keeping my fingers crossed that things happen faster…..wish there was something I could do! Love the picture you posted…..Quinn is looking so grown up…..you are always in my thoughts!!
Love,
Kristen
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