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This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
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@rosemarya - Your "permission" made me smile. I finally did strength training the day I wrote that post and biked 10 miles on Saturday. I usually plan to take Sundays off from exercise but I find when I don't exercise 6 days a week I start to lose the progress I have made regarding weight loss. I know I have to make better decisions with my eating (my strawberry shortcake was really good tonight) and not be so hard on myself (common problem in my family), but I feel a lot of pressure to lose weight before the transplant. I am confident that my heart is healthier than a year ago and that is a good thing. My bike is getting tuned up so I won't have it until Friday so I will have to use my exercise videos this week.
I think I might underestimate how my "health" impacts my energy level. Sometimes I blame my low energy level on waking up so much at night to go to the bathroom (meds and all that water) and other times I blame being out of shape and over weight for having low energy so I really don't know how my PKD plays into it all. Since my kidneys work well enough that I don't need dialysis I just assume that I can't use that as an excuse for needing an afternoon nap.
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2 Reactions@lcamino, I know you are concerned about your health overall and your weight in particular. You could have been writing my story. I would like to share what works for me. First, stop dieting! Start making healthy food choices such as fruit for snacks. Second, learn proper portion sizes and stick to them. Most people eat far too much for each portion. Third, eat a well-balanced diet. Remember protein, grains, vegetables, fruit and dairy. Fourth, stop eating 3 meals a day. I eat small amounts when I am hungry, unless I am not hungry and have not eaten for 6 hours (then I force myself). And last, read ingredient labels. I try not to eat anything I cannot pronounce.
My typical breakfast is a banana and coffee. Early lunch is usually two rice cakes and hard cheese (or tuna). Afternoon lunch is usually a vegetable or more fruit. Dinner is meat of some sort (baked or grilled), vegetables and rice. Bedtime snack is fruit, popcorn, cheese and rice cake or vegetable (like cucumber). Once you figure out how much you need in a day, you can make a list. When you have eaten everything on the list you are done. That's why I only eat a little at a time and eat often. I don't like feeling hungry. Avoiding flour, sugar, root vegetables and extra fats keeps me feeling better and cuts many calories. I just checked my BMI (body mass index easily found online) and have moved from the middle of the obese range to near the overweight/normal line. It has taken me a long time (7 years), but there is no yo-yoing.
No one can do this for you and my way might not work for you. But you need to start somewhere and modify until you get to your final destination. Bless you and good luck!
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2 ReactionsHi everyone...i am just starting on the journey of becoming a living liver donor for my husband. He is from MN and I am from Florida. We have been living in Florida since early 2015 when my hiusband so graciously agreed to move to Florida to care for my Dad who was at the end stage of his battle with cancer. After Dad passed in March 2015 there was no question we would stay here to look after my Mom who was beginning to show signs of dementia. Two years and 3 months later my husband is battling for his own life and I am hoping i can be his living liver donor. The first place i contacted was the Mayo in good old MN. Of course our insurance has changed and so has a lot of things but family support both in Miami and in MN has increased. Any words of support would be greatly appreciated! Thank you to evrryone who jas gone down this scary process before us. Bless all of you.
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2 Reactions@lcamino Your post was interesting - I didn't get the impression you were feeling sorry for yourself, but rather you were making observations about some of the difficulties you experience and being rather analytical. I see that as a good use of this discussion group. Teresa
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1 ReactionTMI stands for "too much information."
Help me Teresa, What is TMI?
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1 Reaction@lcamino Once again, I'm learning from your posts. I have a hard time exercising outside, especially in the summer, but you give good advice about knowing when you are hydrated. Here at Mayo Connect we thrive on TMI 🙂 Teresa
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1 Reaction@lcamino I agree with Rosemary. I very seldom exercise every day. I usually take one day off - I think it is a good plan when you have a chronic illness. (It takes me a day to recover) Keep at though. Slow but steady will work if you are consistent with the schedule that you set for yourself. Teresa
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1 Reaction@herbswife, I have started a new Transplant Discussion named "How Do I cope When I Feel Awful".
http://mayocl.in/2uW4FXt
Every transplant person I have ever talked to has mentioned this same issue and I do not know why we have not created this discussion before now! I invite you to check in there for some responses. And I want to encourage you to post your question there, too.
I look forward to continued conversation with you.
Rosemary
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3 Reactions@herbswife, Hi, I'm Rosemary. I am a volunteer mentor here on Mayo Connect, more important is that I am a liver/kidney transplant recipient. I know exactly how miserable your husband is feeling right now because in 2008, I was where he currently is at. I am deeply aware, also of the feelings and emotions that you and he are experiencing. Please accept my welcome to our community. We are all here to support and to help each other as we share our experiences.
My first response is, Have you discussed this with herb's doctor? We always encourage communication with our health provider.
What is the liver disease that your husband is diagnosed with? This might better assist us with our conversations.
Rosemary
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4 Reactions