New Transplant Blog Posts

Hello everyone,
We hope this finds everyone well today! We have started this discussion today to announce a new blog post. Every week, we will reply to this discussion to let you know when something new is published. Watch for new information often!

Have a productive and enjoyable week!
– Kristin

@contentandwell

@rosemarya I guess I am just a different type or something because I really felt good after transplant except for the times when I thought of the grief the donor family must be enduring. These were not overwhelming thoughts though.
For me, I think the best thing was getting back to being active which I did as soon as I was given the green light. When you are active you cannot dwell on things or feel miserable. I highly recommend activity as the best antidote. It may be difficult to begin being active but it is well worth it. The only person I know who has also gone through a life threatening condition is a friend in CA who had breast cancer. She was a huge support for me. The other people in my water aerobics class were great too.
For me personally, getting back to normalcy is essential. I remember even after the death of my mother my great managers told me to take as much time as I needed with pay. I was back in two days. It does no good to sit around feeling bad.
JK

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@contentandwell – Please remind me about getting active as soon as I’m allowed following transplant when my time comes because I don’t expect that to be automatic to me. I’m counting on you!

Lynn

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@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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Good morning transplant friends!
Today’s blog post titled “Transplant Resource: Using the Scientific Registry of Transplant Recipients” is a good post to share with anyone looking for a transplant center. The SRTR posts new data twice a year, and this post helps explain the new data from last month. Thanks for sharing this with anyone interested and have a wonderful day!
https://connect.mayoclinic.org/newsfeed-post/transplant-resource-using-the-scientific-registry-of-transplant-recipients/
– Kristin

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@contentandwell – YES, you have permission to nag me! Since I won’t be shamed into going because I can’t watch you go then I will need a nudge. I have a feeling my husband will want me to take it easy (he is good at babying me) so I will need a push, or two, or three…

Lynn

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@lcamino, I don’t know how often you go now, I do know you have done a lot of bike riding, but when I get on a roll with going I feel compelled to go and if I miss I kick myself later in the day. My husband thinks I am obsessed or addicted. I don’t think so because I really hate the gym! The water exercises are not so bad because it’s a great group of women in there, but getting up, putting on a bathing suit (outside of the club no one gets to see this old body in a bathing suit), showering afterwards, etc., takes a lot of time and effort. I generally leave here at about 8:30 and don’t get home until after 11:00. After the class I continue to exercise in the water by jogging up and down a lane for around 45 more minutes. Then after my shower I reward myself with relaxing in the sauna. I will not use the hot tubs generally because I am afraid of UTIs. My surgeon knows i am pretty sensible so he left that to my discretion. I told him I only go in if I have been in the pool for a long time and during that time no one has been in the hot tub. I figure the chlorine must have done its thing by then.
When I first started doing my own thing after class no one else did that and now a number of people do! No one does it as long as I do though. I keep pushing myself. My family is amused because for years and years they never saw me do any exercise.
Lynn, if you don’t go now, get started. It will help with your eventual recovery and of course it will help too if you want to lose weight. I feel 100% certain it is why I had such an excellent recuperation.
JK

Liked by IWantToBelieve

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@contentandwell – When I was losing weight I was counting calories and going to the gym 5-6 times per week. When I started biking I biked 3-4 times per week and did a weight training video at home 2-3 times per week. Biking can be derailed by rain or heat. I have to go first thing in the morning when it is still “cool”. I can no longer handle the heat and exercise simultaneously. I prefer biking and burn as much calories on a bike ride in 30 minutes as an hour on the elliptical and I enjoy it more. The very reason the exercise waned was things were not getting done at home. When I exercise at the gym I “lost” a good 2 1/2 – 3 hours (travel time, exercise, shower) every morning. I told my husband that is exactly why I didn’t do this before. It’s time consuming! I do save time with biking (no travel time and I can do it for less time and burn more calories).

Lately I have been traveling and when home I have had workmen here most of the day which leaves the evening to exercise. I don’t have any energy at night. I usually fall asleep from 4:30 to 5:30 in my recliner and I wake up to my husband walking in the door. Then I have to get some kind of dinner on the table and I’m spent. I used to be very productive in the evenings but that is long gone. I know I’m making excuses and I’m hoping that once my daughter returns to high school (next Wednesday) I’ll get back into a routine of exercising in the mornings, errands or house chores in the afternoon.

I also need to stop drinking pop and get my eating (portion control) back on track. I think I might sign up for the Mayo Clinic Diet online. I get a lot of their emails (pointers, recipes) but I have held off signing up by telling myself I can do it (I lost 30 lbs in 3 months after the birth of my third daughter by eating right and exercise). Since I have put weight back on I must admit I need some help. After my company leaves next week I’m going to talk to my husband about us both doing it.

Thanks for the pep talk!

Lynn

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@lcamino, going to the gym or pool really is a time commitment. At this point in my life, with our son and daughter gone, I do have the time so it is easier for me. I would love to resume bike riding but my town is hilly — we live on the side of a hill — and hills of course make it more difficult. When I was single and lived in Boston I would always ride my bike to work in good weather, about 5 miles, and on weekends bike over to Cambridge or along the Charles River, all great areas for biking. I am not sure now if I even have my old bike still, I may have given it to my daughter. If it’s still downstairs in the cellar it must be in pretty bad shape, plus it was one of those very skinny tired racing bikes. Not the best for the roads around here. You make it sound so appealing though that I am feeling a bit wistful about my old bike riding days.
JK

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@contentandwell – I just posted a long reply and in my attempt to download a picture I lost it all. In short, hills are tough. I treat them like intervals and if I ride the trails vs neighborhoods I have enough around my house. I can go 22 mph down a hill and 5 mph up a hill once I have lost the downhill momentum. I ride a road bike (skinny tires) and my shores are clipped in. But I live in Indiana so I do have to exercise at the Y when the weather does not cooperate.

Recently I have had left flank/kidney pain when I bike strenuously so I’m hoping when I get my transplant they will also do a nephrectomy so I can keep biking. My kindeys will continue to enlarge (cysts will keep growing) after I get a transplant unless they remove my kidneys. My dad had both of his kidneys removed and they were both the size of a football. I’m not kidding. I found a picture online to post but can’t figure out how to do it (googgle “kidney size of football” and the image will appear if you are curious). That being said, that will not solve my weight problems but I don’t want to feel 9 months pregnant like my dad did (sore back, poor quality of sleep, pain). I forget how much each of his kidneys weighed but I now they can be up to 15 lbs each.

Lynn

IMG_1013

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@contentandwell – Well apparently I figured out how to post a picture but not the one I meant to. That is my husband and I after a 10 mile bike ride. I’ll get help from my kids to post the kidney picture when I get some time.

Lynn

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@lcamino, Lynn,no picture here. Your comment “I’ll get help from my kids” cracks me up. I am always amused when I have to turn to my kids. I was a computer professional in ancient times and helped them, I never thought my son would be up on computers but he is pretty good now, and his company is an IT staffing business!
JK

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@contentandwell – That is weird. As I’m typing now I can see a photo of my husband and I under my post about the size of PKD kidneys. (3 posts above the one I’m typing.

Lynn

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@lcamino, Lynn, I see the picture now! What a nice picture of you two. You look great.

I am about to go to my water class. It’s going to be a somber one, one of the women who is always there and very outgoing had a stroke yesterday and was air-lifted to MGH. I know at our ages (many of us are in our 70’s, where I will be too soon too) we need to realize that these things happen to our peers but it does not make it easier.

She had been working hard at getting into better shape, lost a bunch of weight and did the water and also Pilates two or three times a week.
JK

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@contentandwell – Sorry to hear that. Unfortunately things happened a lot that we can’t predict. We are dealing with health issues we know about but so many bizarre, and not so unusual, things happen everyday to people. In the past I would hear about a healthy person (athlete, runner) who had a heart attach and just decided that you should live as healthy a life a possible but you can’t prevent things from happening. Of course I’m no specimen of a healthy lifestyle but I’m trying and that’s all I can do.

Lynn

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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@lcamino

Love the picture – thanks for posting it~

Teresa

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@contentandwell

@lcamino Lynn, I’ll be there for you. Should I be a nag? ๐Ÿ˜‰ My husband used to go a gym all the time but then fell away from it. When I started going so regularly he was shamed into going again — I did not nag him. He does not go as often as I do but he does go about 3 times a week, which is good.
JK

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“A picture is worth a thousand words”
@lcamino, You are doing an amazing thing by working to stay healthy in preparation for transplant!
and
@contentandwell, You are a dear friend to be encouraging along the way…with promise of support in the future.

You both are some of the the reasons that make the ‘mental health and well-being’ in the above referenced mentioned blog, – โ€œPost-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.โ€ – a possibility!

Enjoy today, and the next day, and the next day….!
Rosemary

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