@rosemarya - I keep forgetting this although I'm signed up it is not of help to me yet because you can not access study labs in the portal so I'm used to calling the study co-ordinator like you call a doctor's nurse. I'm sure I'll make the transition when the time comes. I do have the Mayo app which I like because my appointments, even study appointments, are on that.

@contentandwell - I'll keep that in mind : - )

@lcamino, I've lost track of where you live -- midwest?
JK

@contentandwell - Yes.

@contentandwell - The reason I like biking outside is because I like to be outside and the natural wind you create biking cools you off and the scenery helps pass the time. Yesterday I did five miles in 26 minutes with an average speed of 11 miles an hour. Now that is easier on a real bike because of hills and switching gears but biking against the wind really slows me down (8mph) and biking up big hills (5 mph). The 24 mile ride was a total of 2 hours and 22 minutes in the saddle (on the bike) but that includes stopping for traffic to cross streets and stopping to drink. I averaged 10 mph on that trip. I really want to lose weight (still not happening) but my shape is changing because I can see it, people look at me and think I have lost weight, and I can buy clothes in a smaller size. Unfortunately my nephrologist only sees the numbers on the scale that are stuck between the same 5 lbs.

I think it is important for people to realize how grateful you are. It can be tiring being around a negative person all the time but who complains about being around a thankful person? What I learned after my daughter died was that the friends that were willing to be there through the tough times were the ones that stuck around (because I talked about grief and my daughter a lot) and God provided new friends to fill the gaps for those that could not handle my new reality.

Is your niece's husband on a list to get a transplant? Has he looked into getting a living kidney donor? Wash U is a great hospital but I don't know if they do living kidney donations. For general information the Mayo Clinic has great information on kidney transplants from deceased and living donors.

The way the Mayo Clinic does paired donations is that if my donor is not a match they find a match for my donor at one of the Mayo facilities (Rochester, Phoenix, or Florida) and then that person's donor might be a match for someone else etc. until a kidney eventually comes to me. I believe they have had a chain up to 8 people. Mayo flies the kidneys between the three sights and someone how times it all. I'm organized but it sounds like a crazy complicated thing to orchestrate. Not all facilities work together so it could limit a person's options but at least with a paired exchange your donor does not have to be a match for you (with kidneys, different for other organs I know) as long as the donor is willing to be part of the donor chain. Sometimes paired donation chains can be started by a person that chooses to donate a kidney and they do not have a recipient in mind. I think they call that an altruistic donor.

I learned about being proactive online and it is one reason why I went to the Mayo Clinic because I knew they did a lot of living kidney donor transplants for people with PKD, one of the benefits of the internet and having research at your fingertips.

@lcamino, Lynn, I've never been to Indiana, the closest I got was Chicago where I was assigned for four months, "way back when", and to Lansing, Michigan for my stepdaughter's graduation from Michigan State. Nice country out there. I loved being a single in Chicago, it was a fun city. I almost took a permanent position there.
JK

@lcamino, I had a great bike but when I was single but then I got very overweight and my daughter needed a bike in college I gave it to her. It was a nice, very lightweight bike that I purchased because I had to carry it up the stairs to the third floor in my apartment building. I may have to consider getting a new bike but I should rent or borrow one first. Unfortunately, this being NH there are a lot of hills. When I was single I lived in Boston. That is great that your shape is changing. You should really feel pleased with yourself for all of your efforts. I must admit, I feel pleased with myself for mine and having lost the weight and gotten into better shape. I have to wear my rings on different fingers now and people say I should get them made smaller but I sort of like them being on different fingers because it reminds me of what I have accomplished. I haven't mentioned that to anyone before.

Thanks too for your comments on my gratitude. I just don't want people to be rolling their eyes in boredom.

My niece's husband is on at least one transplant list. Now that I am thinking of it I think I will facebook message him and ask him how things are going. Recently I have not had time to be on facebook much though. I know when they moved from Wisconsin to Missouri last year he was going to list at a center closer to there. He thought he had a donor in one of his 10 brothers but it didn't turn out to be a good match. I can't imagine that one of them wouldn't be a match but only one stepped forward. I mentioned the Mayo in Arizona to him because I know they are great transplant center for kidney with less of a wait than many places. I don't know what the wait in Boston is but my wonderful surgeon is actually head of the kidney transplant center there along with being a liver transplant surgeon. He really is the best, I honestly feel his expertise contributed to my great recovery. I don't know if I mentioned this before, but if he was single (I presume he is married, he's in his mid-40s) and my daughter (she will be 35 next month) was not engaged I would be trying to play matchmaker. He is just her type -- dark, brilliant, and with a dry sense of humor. 🙂 I like her fiance a lot though too. I am just having difficulty now because their wedding planning has really brought forward a cultural difference. My daughter, having worked at a very nice restaurant with big wedding receptions, has always thought that was a waste and basically just wanted to elope or just have immediately family. Her fiance's parents come from India and expect a HUGE wedding, up to 200 people which they are actually willing to foot the bill for. I worry that my daughter is going to get over-stressed over this.
JK

@contentandwell - Well I'm not sure I would be biking as long in NH because of the hills. We have some hills but there is a lot of flat farmland as well so I can mix it up. Of course, if you let yourself go fast enough down the hill it can help you get up the next one if there are no stop signs etc. We have a lot of trails where I live (for walking, bikes, running etc.) so I usually stick to those so I don't have to worry about the traffic.

I'm sure your niece's husband knows this but you can be on multiple transplants lists at once. The lists are set up by regions (determined by UNOS I think) with the average wait of 5-7 years but the waits on each coast is much longer (over 10 years I believe). If he had a brother that wanted to be a donor to him but was not a match and was otherwise healthy enough to donate then if he got connected with a hospital that does paired kidney donations his brother should still be able to donate. For example, one of the Mayo sites could get them in a kidney donation chain assuming both "passed' the preliminary health screenings. The Mayo Clinic in Rochester is number one in the country for living kidney transplants although obviously all three would be fine. He might want to inquire at Mayo if his brother is still willing to donate.

@lcamino, I am sure my nephew-in-law has looked into all of that. He and my niece are both truly brilliant and very diligent. I don't know about his brother, maybe there was something reason they felt he should not donate. I would hate to bring it up to him, there had to be a reason and maybe if his brother just decided against it it is painful.
There are a lot of walking trails in town I will try to remember to check to see if you can bike on them if I decide to invest in a bike. They are not cheap these days. There are no stop signs in town except on the main east-west highway, route 101, that goes through town. The town is semi-rural, you need at least 1.5 acres to build and most people have their own wells and septic.
JK