@lcamino Lynn, my lab is a bit busier than yours. I often have to wait because there will be one or two people ahead of me. I can only imagine what the cost is though to transport just my blood to MA -- just mine generally because MGH has the order in as "stat". They want it sent to the lab's testing facility in the morning, generally it is before 9:00.
My phlebotomist is really nice too and she recently gave me the card for her church and thought I might enjoy going there! She said afterwards we could get coffee or something. I doubt I will take her up on it because if I went once and didn't like it, it would be hard to explain why I wasn't going again.
Regarding your GFR, I was unfamiliar with it so I googled. Your range, according to the info I got, suggests "Severe loss of kidney function". What GFR do they generally transplant at? As I mentioned before somewhere, my niece's husband is on very frequent dialysis and waiting for a transplant. They just moved from Wisconsin to the St. Louis area, I hope something happens for him soon, he is such a truly great guy.
JK

@lcamino Lynn, at MGH you are a patient in the Hepatology department prior to transplant and then after transplant you are a patient of the Transplant area. I had an appointment coming up with my hepatologist when I received my transplant, when she came to visit me my husband kidded that I would have to cancel my next appointment and she said I would no longer be seeing her! It was then that I discovered that my association with that department was over. I really liked my hepatologist a lot too, but I was not upset at not having to see her NP anymore. Every time I saw her I came away feeling a bit depressed. I am sure each transplant center has their own way of doing things, I have seen variations in talking about the different ones on this message board.

I positively love all of my transplant team though. They are all great, caring, very helpful and reassuring. What more is there
JK

@lcamino Lynn, my transplant team is in Boston at MGH, I live in NH, just outside of Manchester -- about an hour north of Boston when there is no traffic. I doubt they would bw familiar with any of the doctors up here unfortunately.
JK

@contentandwell, This is a beautiful tribute to your medical team. I can only hope that others have similar feelings about their care teams. I admire and respect everyone who is involved in any way with the transplant process.
Rosemary

@lcamino, When you become a patient of the Mayo Transplant Dept, (and this how it was for me) you are assigned a pre-transplant nurse. She/he will coordinate your schedule during the time leading up to your transplant. And you are only a phone call away. She/he will also be available to answer any question. After transplant, you will have a post transplant nurse. And she/he is always a phone call away.
As for distance, I am 800 miles away, and I learned right away, that the care that I get at Mayo, extends the full distance. I no longer need to see my GI, for liver because my GI care is with the transplant dept. I do keep in touch with him - and he does my colonoscopy locally. I have never had a nephrologist because my kidney failure was sudden. And I do not need to have one since Mayo takes care of that too with the labs and yearly review. If I need any follow-up information, it has been directed to my medical facilities locally. My PCP directs and monitors my 'normal' things like my annual routine cholesterol. BP. gynecology, etc. And he gets my reports from Mayo.
My experience has taught me that I (actually husband) has to be very direct, almost aggressive sometimes, when I need to report to ER after hours for elevated temperatures, UTI symptoms, flu like symptoms, etc. My 'guidelines' are different than for general population, so sometimes the sign-in desk does not want to let me sign-in. If this ever happen, to you, or to anyone else reading this, be sure to tell them that, "I am a transplant recipient" - That usually gets a reaction of urgency. And always, there is a 24/7 phone connection to the transplant dept for the doctor / or you to call.
Before you leave the hospital, the nurses will teach you and your husband everything that you need to know. And, like me, you will probably get a binder full of information to take home. I still refer to mine!
I do hope that this helps to relieve some of your fears. Also, keep in mind that each organ, and each person is individually treated at Mayo. So our visits, our lab schedules, are each unique for us, but also very clearly defined for the routine post transplant stuff. And emergencies do happen, and they ,too, are well directed from a distance. (that experience can wait for another day).
Enjoy your day, and tomorrow, and the next day...
Rosemary

@lcamino, I forgot to add that there is an online patient portal that is awesome! Rosemary

Hi @contentandwell - You might make a new and understanding friend with your phlebotomist. You can always "be busy" if you don't want to repeat the outing. Your choice because I do see your concerns.
Sorry about dropping the nephrology lingo. I keep forgetting there are people with all sorts of transplants on this chat. (That shows how self-focused I am at the moment with my health worries - yikes!). I am in ESRD (end stage renal disease) stage 4b. The national standard is to meet with a transplant team when your GFR is 20 (mine is 22). With my disease the standard loss of kidney function is 5 ml GFR per year however the past year I lost 7 ml.
So most likely I will be meeting with the Mayo transplant team some time in the next year. The only thing that might make it longer is God's grace with the assistance of the medication I'm on with the Mayo study. I am taking a medication (Tolvaptan) that is approved in Canada, the UK, Japan, and many other places except the U.S. They know it slows down the growth of the cysts on the kidneys but they want to see if it helps people with end stage renal disease. My hope is that it helps me but my goal is that it is approved so my 16 year old daughter will be able to take it once she turns 21 and then she might never need dialysis or a transplant, and if she does ideally she would be much older than 50 (55 is the average age for kidney failure for someone with PKD).
Back to your question...you meet with a transplant team with a GFR of 20 and get a transplant with a GFR of 15 if a living kidney donor is available. It is the goal of my nephrologist that I get a transplant before I go on dialysis because the success rate is much higher (8-10 years for a deceased kidney donor and 10-20 years for a living kidney donor). Also, a donated living kidney starts working right away. The wait list for a deceased kidney donor is 5-7 years where I live and I can't go on the list until my GFR is 15 so that would mean I would most likely be on dialysis before I got a deceased kidney donor.
My disease is a little different because people tend to lose kidney function at a somewhat predictable rate. Also, I might have my diseased kidneys removed at the time of the transplant. They are now both double the size they should be (healthy kidney is the size of your fist) and will keep growing. My dad, due to pain, had both his removed and EACH one weighed 15 lbs! EACH kidney was the size of a football! He went from looking 9 months pregnant to as slim as he was when he was a Marine. It was amazing!
Finally, a great thing about the Mayo is that they do paired donors so I do not need a donor to be a perfect match. If you have questions about how that works just let me know

P.S. I biked 24 miles today!

@lcamino Lynn, 24 miles is awesome! How long did that take. When I use my recumbent I recently have only been doing it for about 30 minutes because I don't do it much anymore -- not too many miles. That's all I can take, part of the problem is boredom though.

Don't even think about being self-focused, I think we all are. I think for me I am more now than before transplant because I am constantly in awe of how well I recovered and how good I feel. I have always been slightly religious but now much more so because I truly believe that the scores of people praying for me made a difference. Sometimes I have to stop myself because I don't people to think that I only talk about that and how grateful I am.

I can't help but worry about my niece's husband who has been on dialysis now for a number of years. My brother said that he is getting worse. He is still working full time though as a VP of a company in Missouri so he can apparently still do that.

I thought with paired donation that someone had to donate who was doing it in your behalf but who could not donate to you, and in return someone who could donate to you could do it in their behalf.

JK

@contentandwell - I get it. My extended family live on the east coast so I'm somewhat familiar with the area. My Mom lives near me now so I'm not out east much anymore.

@lcamino -- Lynn, we are practically neighbors! 😉 We love Portsmouth, it's about an hour away. We sometimes go there for their many restaurants. We are trying to get in gear to sell our house and if/when we do our first choice of places to move to would be the seacoast/Portsmouth area but it's pretty pricey out there.
We have gone to Falmouth too, from our little lakeside cabin in Maine on Lake Thompson. Falmouth has a lot of nautical types of places so we have gone there to pick things up for small sailboat, and not far from Freeport and LLBean and many, many outlets. These days we don't even moor the sailboat at our place though.
If you ever do plan to get out this way I would love to meet up with you. I'm always happy to have an excuse to go to Portsmouth!
JK