This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

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?

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya Thanks Rosemary. I took a look but “healthy living” diets are pretty much the opposite of what I am forced to be eating now to control these digestive problems. Today I dared not leave the house again.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@contentandwell, I admire your attitude with all of this going on. But as we have agreed before, there is no good in complaining because it is what it is, and we are alive. I really hope that you get this straightened out before too long.

Previously you said these digestive problems are from the immunosuppressants. I have not experienced any similar symptoms, but I do know that many people have varying complications during 1st year. Maybe this is just one of those bumps in the road; soon to be a distant memory.

It will be interesting to find out if this will resolve with the dietary restrictions that you are implementing. Did your NP indicate anything about the time involved. I have also heard of some people who need to be changed to a different immunosuppressant meds.
Hugs,
Rosemary

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya Thanks for the support and encouragement. Prior to calling the transplant clinic I googled both prograf and cellcept and discovered that they both can cause my problem. Prior to that I was thinking I had just developed a sensitivity to something I was eating and my main suspect was salads!
I sure hope it is just a bump in the road and that once it is settled I will once again be able to eat a more healthy diet, including salads.
In the meantime, the weather is getting nice, although a bit cool this week, we are heading to Bar Harbor in Maine for the weekend with another couple, my son and daughter are both in good periods of their lives, and life is good.
JK

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc, I’m just getting caught up with emails. I can’t help but notice your comment about arthritis in your spine. Have you been screened for Ankylosing Spondylitis (arthritis of the spine but also other joints)? It often takes 10 years to get a diagnosis because before arthritis appears in imaging of the spine the symptoms can be “explained” away. There are great medications to manage future progression and pain so it is worth seeing a rheumatologist if you don’t have a reason for the arthritis in your spine. Either way, water exercise is great for arthritis of any kind so I hope you can enjoy adding that to your daily routine. Best of luck finding a way to keep moving because that is the key with arthritis of any type.

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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Well, @rosemarya I am not home yet. I stopped off to spend a few days with my son and we are binge watching Blindspot. I have never binge watched anything before so this is quite interesting to me. I expect to finish the last half of my trip home this weekend. I am surely looking forward to my own bed! We have stayed at GOL almost every time since I first went to Rochester, MN. Rarely they do not have room for us, but it has been such a Godsend for us to have a home atmosphere and reduced housing costs when we have to go.

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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Thank you @lcamino. I have not been screened for Ankylosing Spondylitis, nor has it ever been mentioned to me previously. I previously decided not to pursue seeing a rheumatologist because my diagnosis is osteoarthritis. I did a brief read on Ankylosing Spondylitis and it does and does not seem to match my situation. I will however pursue this further and I appreciate you bringing it to my attention. I do know that my body is following the course of my mother’s body in many areas and we both noticed the beginnings of arthritis in our teen years.

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

Jump to this post

@contentandwell I also am on a low-fiber diet. I am also on a low-oxalate diet. I used to eat oatmeal every morning but cut back after being put on the low-fiber diet. After 6 years I now eat it occasionally, about twice a month. I eat strawberries with no problem. I also can eat nectarines, peaches, bananas and cantaloupe. I eat watermelon, but it does have a great deal of fiber so I pay for it later if I don’t take anti-diarrheal along with it. As long you are ok with the oxilates you should be able to eat any berries you like. Good luck!

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya I believe for me no green leafies will be forever, as I believe the low-fiber diet is required by my autonomic neuropathy.

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc, How wonderful for you to get a few days with your son! I have never watched that show, but I think a binge with son after a week of testing sounds like fun.
Yes, same here about Gift of Life House. We have learned that, like the Mayo experience, it is difficult to explain to folks back here at home.
Rosemary

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc Thanks 2011panc. I will try some of the things out that you mention. I have been told that bananas are fine and berries in limited amounts. I too frequently had oatmeal for breakfast, and I added either blueberries or strawberries, plus some ground almonds or walnuts. Now I have read that you can eat cream of wheat. That info did not come from my hospital but from googling but I believe the source that had that info was a good one. I’m not sure which one it was now but I generally only pay attention to very reputable sources.

Do you regularly take an anti-diarrheal? At the point I am taking two immodium a day and it helps but I don’t know what would happen if I did eat some higher fiber foods, and I wonder how long I can taking the immodium without it being a problem. I think I may be able to reduce some immunosuppressants in September, at my one year anniversary, so I am hoping at that point if not before I will be able to discontinue the immodium.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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I am glad you found my information helpful. When I make oatmeal for myself I add cinnamon, raisins, salt and walnut pieces. If I feel the need, some days I add a touch of maple syrup. Real maple, not pancake syrup. I have not tried Cream of Wheat, but the Rochester hospital did have Cream of Rice on the menu and that does work for me. I use rice in place of many grain options because it works for me.
I took 10mg of anti-diarrheal daily for a while and was able to wean off except for occasionally. Now I am planning to start an every other day regimen, as I am again having problem. I am just home from Rochester following a complete GI workup. The only thing they found were abnormalities in my colon and anal muscles. That is disappointing to me, but we work with what we have, right? Or not, right? lol
Depending on your issues and physician’s advice, you might do a trial of a higher fiber and then another trial of reducing your Imodium to check out your tolerances.
I use any anti-diarrheal, often store brand, if they have the same ingredients as Imodium brand because they are often less expensive. For me now, every penny counts. When I say ingredients I mean both active and inactive. I shy away from unnecessary inactive ingredients because of possible negative effects. Another area you might want to check ingredients is your vitamins or any otc supplements you may use. There are so many additives in products now and I avoid them as much as possible.
You may as well make friends with Imodium, but hopefully you don’t have to remain as close as you are now. Maybe she can move a few blocks away. lol Best of luck to you. You remain in my prayers.

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

Jump to this post

@2011panc It sounds like you and I could nicely have breakfast together, except no salt in my oatmeal, I try hard to keep my sodium low. I had to smile at the real maple syrup mention. I too use only real maple syrup (heck, I live in NH, nothing less does it for us). We were at a very nice Inn in Maine that my son and daughter gave us an overnight at for our 40th anniversary. They came too and at breakfast they served fake maple syrup! My daughter was completely nonplussed that a a highly rated Inn would serve that and then she could not eat her pancakes.:-) She loves maple — maple sugar candy, maple cotton candy, and anything else maple, and puts the syrup in her coffee too. I tried it — it is good but I usually put no sweetener in my coffee.

I dropped the evening pill the other day and sure enough I had a bit of a problem the next day. We were away for the weekend with friends, the husband in that couple is a doctor and he said that baby spinach leaves are less fibrous than other greens so I had a salad with them. I don’t know if my problem was from that or from decreasing the immodium. I guess this will be trial and error for a while.
I wonder if I also have a problem with my anal muscles. What type of doctor did you go to for that?

I take no supplements, just the slew of things prescribed for me. I will check for generics of the immodium, immodium is not cheap. Good advice to watch for every ingredient in them. I never had to take any anti-diarrheal products before and very few softener/laxatives too. Hopefully immodium won’t have a permanent relationship, and hopefully I will once again be able to eat salads and things of that nature. How ironic that here I was trying to eat healthy — whole grains, high fiber, fruits, raw vegetables and now those things are denied to me.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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I understand. I was referred to gastroenterology for my gastric workup. Previously I had it done closer to home, but we have fewer specialties available to us now. If you have a gastroenterologist near your home, that is where I would go. FYI, I had an endoscopy, colonoscopy, anorectal manography and had to collect stool samples.
As for your trial, I suggest trying them independently and drop the morning pill rather than the evening one. Also, I have had more problems with spinach than other greens, which seems strange. I still do eat broccoli with no apparent problems, thankfully. Although I now eat vegetables cooked almost exclusively.

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc and @contentandwell , I have to say that I am happy that you two have met here on Connect. By sharing this helpful information with each other, I, as well as others, are able to gain new insights into how to live successfully with complications. Your proactive approach and your desire for reputable knowledge are admirable.
I get energized by reading these conversations!
And so I want to thank you for showing us how to live:-)
Rosemary

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya Awww, Thank you. I am glad to help wherever I can. Since becoming medically discharged from the work environment I struggle to feel useful and am so pleased whenever I can be of help to anyone anywhere.

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