A big Queen wave on the 4th of July

[HipHopQueen]

Hi all,

I’m doing good. I had the last of my testing to be considered to list with two centers. The one that is temporarily off line and a new one. I’m wondering what you all think about me possibly listing for one that is 3 1/2 to 4 hours away. I haven’t talked to anyone about it yet. I just have heard it’s a great center.

One of the people at the center that closed said she would help me write a post to give people living donor information. She never got back to me after I talked to her twice and she said she would do it. Now I’m not going to beg for anyone to help me. The Queen’s got a keyboard and an creative mind and I can do it myself. I just wanted a little help. Now she did get Covid so I understand.

I hope you all are doing well and staying encourage. I truly believe I’ll be okay. Whatever come my way. I’m thankful for every day. I am going to enjoy some delicious 4th of July food and watch the sky light up.

[Darlenia]

We were listed at two centers - one was smaller in our backyard with a long wait list, and the other was larger with a much shorter wait list located two hours away (on a good day). I highly recommend double listing.

The one further away, in addition to volume, had better outcomes. The two centers shared lab data although the one further away requested more procedures than the other one. So we had our hands full keeping both centers supplied with labs and records while also dealing with all the things needed by our dialysis center. Keep in mind that the more distant center will also want to see you face-to-face for the initial consultation so you can try out the drive and see if it works for you. (If not, you may want to check out Angel Flights.) I'd like to add that I've followed a number of people who drove 5 hours or more to get their transplants - apparently kidneys can be saved for longer periods of time than other organs. Travel time is something you can discuss with them.

Once there, we discovered the larger center also had inexpensive on-site lodging for patients and their family. And, as you might have guessed, my hubby received a kidney very quickly at that larger center - we agreed to accept a kidney with conditions. (We're no longer a young couple.) Às an observation, the larger centers are generally teaching hospitals that prepare and graduate doctors. Hence, they're generally cutting edge with the knowledge, research, and technology to achieve. So I definitely recommend going for it.

[Aloha49 in reply to Darlenia]

Thank you for your post. Can you name the better transplant center that had a shorter wait list? I am listed at two and am considering applying at more further away or out of state. Any ideas? Thank you, BB

[Darlenia in reply to Aloha49]

Both of our centers are in Virginia. We listed at Inova Fairfax and VCU Medical in Richmond. VCU is the highest volume, best transplant center in the state. But there are others. There are online sites that review and summarize data on all centers across the nation. I've posted those sites near the bottom of this thread. Both have great research tools and information.

[Blackmidnight in reply to Aloha49]

B careful about registering at more than one location. My state, ask your transplant team or the dialysis center. I live in a state that you can not register in one place in the state.

[HipHopQueen in reply to Blackmidnight]

Oh interesting. I'll check. Thank Blackmidnight. Why the name? Curious.

[Blackmidnight in reply to HipHopQueen]

named after a puppy. Why yours?

[horsie63 in reply to Darlenia]

I'm just starting this and it's already exhausting and I've not spoke to the transplant people yet. My biggest issue is my insurance only covers centers they deem "Institutes of Excellence" and although I finally unearthed the list, the closest one is not on it. The next is 3 hour drive and another close on is 5 hour drive. If it were a one time trip no big deal but with all the testing, etc I don't want to spend hours driving somewhere. That will negatively impact my job and I don't want that. I'm going with the one 3 hours away. I'm familiar with the city anyway so that helps.

[HipHopQueen in reply to horsie63]

Hi Horsie, Yeah travel time is a factor which stinks. I wish that didn't matter. My top choice is 4 hours away so I'm not sure it is really an option. We'll see.

[Aloha49]

HipHopQueen, thanks for your post. Can you name the Centers you are listed with and their wait times? I am now listed with two in Northern California but am considering listing with a few in Southern CA or out of state. I just have to be prepared to travel for a few days to get their possible additional tests done. Any Centers that you recommend? Also how does Angel Flights work? Thank you, BB

[Darlenia in reply to Aloha49]

Sure! Being proactive is good! It's terribly time consuming to drill down on each center of interest on your own to collect information when time is short. Thankfully, there are two sites of immense value that do this work on centers across the nation and also continuously update it. I've placed the two links to these websites below. The first one is easy to use and straight forward. The second one is a bit more difficult and presents information not only on travel distance and Angel Flights, but also includes more refined feedback based on your blood type and PRA values. Interestingly, the last site is run and operated by a kidney transplant recipient. (I've corresponded directly with her, thanking her for her work.) Both sites draw on data from SRTR, the registry that collects data on all transplants performed by the centers. The statistics on both websites can differ a little bit from each other - probably depending on the time/date they post updates. Both sites are worth are worth gold, in my opinion. I'm sure you'll find them very informative too.

srtr.org/transplant-centers...

txmultilisting.com/home.htm

[HipHopQueen in reply to Aloha49]

Two centers in Central PA. Harrisburg and Hershey. I'm not sure exactly of the wait time but I believe they were both 4-5 years. I don't know centers well enough to recommend any. Maybe you were talking to Darlenia.