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Rosemary, Volunteer Mentor
@rosemarya

Posts: 1280
Joined: Aug 30, 2011

This and That and Talk - My Transplant

Posted by @rosemarya, Sun, Apr 9 10:32am

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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Rosemary, Volunteer Mentor
@rosemarya

Posts: 1280
Joined: Aug 30, 2011
Posted by @rosemarya, Mon, Apr 10 8:40am

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary


lcamino
@lcamino

Posts: 284
Joined: Feb 11, 2017
Posted by @lcamino, Mon, Apr 10 10:25am

Hi @rosemarya. We have connected before. I need to lose weight to be in better health for my kidney transplant in a year or two. I was doing well for awhile (lost 20 lbs)but now I’m being a yo-yo. I really need to lose another 40 lbs but am struggling with my energy level (to exercise) because I’m in stage 4 and on very low protein. I also am dealing with plantar fasciitis which has meant no more walking the dog for quite awhile and that was my exercise before. I explored spending the money on Jenny Craig but they do not have low salt meals and I was ready to try Optifast with the local bariatric hospital program but you can only do that if in stage 1 or 2. Are there any programs at the Mayo Clinic or with the transplant team at Mayo? I’m open to any suggestions at this point. I know what to do, I just don’t seem to be able to follow through long term.


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1280
Joined: Aug 30, 2011
Posted by @rosemarya, Mon, Apr 10 12:18pm

@lcamino, I am happy to visit with you again. Too bad about your plantar fasciitis – for you and for your dog. Are you getting anykind of treatment or management for it. It is painful. Fortunately my episodes have been minor and easily remedied with rest, change of walking shoes and inserts,

You are right to begin to prepare your body for future transplant.
I did Weight Watchers prior to transplant with a group of friends. But after my transplant I did not like it. I am a numbers person and the point counting was fun for me. To this day, I don’t know if it was the plan, or my failing liver that was responsible for my easy weight loss.

Mayo Clinic does have a diet plan 🙂 The Mayo Clinic Diet. It focuses building lifelong healthy eating practices as well as weight loss. There have been many fake diets in the past that have illegally used the Mayo name. But this is the real deal. I found it after my transplant thru an introductory book promotion from Mayo Marketing. I bought the book. I mainly use it for a balanced and healthy eating plan, now. And I really believe it is part of why I feel so good.

Here is some information for you.

https://register.diet.mayoclinic.org/d_partner_mcd_site_store_text?promo=3280215A-C0C9-4CD3-B38C-BD6ADE4B37C0

Here are some menu and recipe ideas for specific dietary needs.

http://www.mayoclinic.org/healthy-lifestyle/recipes

Keep in touch,
Rosemary


contentandwell
@contentandwell

Posts: 806
Joined: Feb 18, 2017
Posted by @contentandwell, Mon, Apr 10 9:48pm

@rosemarya Give yourself credit, you did it, not your liver. I did it because I wanted my BMI to be lower and it was hard work because I had a good appetite right through it all. I sort of lost my appetite for a few weeks after transplant but definitely not before.
I am a numbers person also, but not a person who would do well in a group like weight watchers.

@lcamino My sister had terrible problems with plantar fasciitis but she went to a really good shoe store and got what she needed and it got better and has never recurred. A doctor told her what she needed to get.
JK


contentandwell
@contentandwell

Posts: 806
Joined: Feb 18, 2017
Posted by @contentandwell, Tue, Apr 11 11:41am

@lcamino Weight issues are so difficult. I have had them a lot, yo-yoed all my life, but am hoping that this time I will keep it down.

I find that I am much more sluggish on days when I do not exercise and I have no energy on those days. If I get to my club in the morning and do my water exercises it improves everything. I struggle to go, who wants to get up, get into a bathing suit and into a pool that is a bit cold? After I go though I feel so glad that I did. I reward myself afterwards with a little time in the sauna. I do not do hot tubs even though my club is pretty pristine, because I fear UTIs.

When I started I always went to class a bit late because an hour was daunting. Now I try to be there on time and after class I jog/march/breast-stroke walk the pool for 45 – 60 minutes. After I am tired but feel good that I did it. My son loves hearing that I am exercising so on particularly good days I send him a screen shot of what my fitness tracker shows. Yesterday was my “personal best”, 30,000 points which according to the fitness tracker was equivalent to over 5 miles!

So try doing something, start out with just a little and gradually work your way up to more. If you have a pool available that is the best because of the low-impact — I have two bad knees so that’s important to me.

I was doing this right up until transplant, less in that last month and a half because I was struggling with not feeling well at all and was so swollen with edema and ascites that nothing fit me so I pretty much was confined to the house.
JK


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1280
Joined: Aug 30, 2011
Posted by @rosemarya, Thu, Apr 13 1:42pm

It sounds to me like most of us are concerned about weight issues. It is important to also be concerned about good nutrition, too.
I just came across this video and information about The Mayo Clinic and want to share it.

http://mayocl.in/2pdOyTh

Rosemary


lcamino
@lcamino

Posts: 284
Joined: Feb 11, 2017
Posted by @lcamino, Tue, Apr 18 3:12pm

Sorry for my late response. Life has been busy. I see a podiatrist for my plantar fasciitis. I wear expensive sneakers all the time, have custom insoles and try to do my stretching 3x a day (I have missed the last week though – oops). I have had a medrol pack (burst of an oral steroid) and that worked wonders until it wore off. Tomorrow I think I’m getting a steroid injection. I do fine when I stay off my feet but once I am active it takes me a day or two to recover, but at least I’m recovering because that wasn’t happening before. Last week I flew to Rochester for my Mayo appointment and with the walking at Mayo and the Chicago airport I walked 10 miles that day! It felt great to be active but my feet really paid the price. I started walking my dog for a mile a day every other day for the past few days and it has been so nice to get outside and enjoy the nice weather. I’m supposed to exercise in a less demanding way so we will see what my podiatrist says tomorrow.

I’m back on the wagon for counting my calories and trying to build up my exercise. I use an app called My Plate to track food, water intake, and exercise. It has helped me learn that my weakness is what I drink. I’m in a study at the Mayo Clinic that makes me very thirsty so I drink about 150 oz a day (just over a gallon of liquid). I get tired of only drinking water so have a strawberry lemonade or juice and they are loaded with calories.


contentandwell
@contentandwell

Posts: 806
Joined: Feb 18, 2017
Posted by @contentandwell, Tue, Apr 18 3:16pm

@icamino, thanks, I will check out myplate and see how it compares to myfitnesspal.
10 miles! Wooohooo, that’s great! I did five miles the other day and was exhausted. I don’t think I could do more than that. My pool walking really helps, diminishing the impact.
JK


lcamino
@lcamino

Posts: 284
Joined: Feb 11, 2017
Posted by @lcamino, Tue, Apr 18 3:56pm

@contentandwell
I see a podiatrist, have a really good shoe, custom inserts etc. These things were no longer sufficient once I started exercising so the doctor is helping me get through it. I need to rest the foot which means I can exercise but not by walking my dog. I can bike, swim etc. but I just haven’t gotten in the habit. It took me a long time to get that pattern and now I’m trying to change.Thanks for your input.


lcamino
@lcamino

Posts: 284
Joined: Feb 11, 2017
Posted by @lcamino, Tue, Apr 18 4:14pm

@contentandwell, I plan to check out mightinesspal too. Let me be clear, the 10 miles was NOT all at once! I walked 1 mile with my dog today and was dragging by the end. We both have to get back in shape. I’m going to ask my podiatrist about waling in the pool because I have thought of that but I’m not suppose to walk barefoot. Sometimes standing in the shower is too much and I have to wear my crocs.


contentandwell
@contentandwell

Posts: 806
Joined: Feb 18, 2017
Posted by @contentandwell, Tue, Apr 18 9:14pm

@lcamino I, and most of the other people in the water aerobics, wear water shoes. If you plan to get any try to get ones that are not too enclosed. When I first started this, probably about six years ago, I had water shoes that were like Mary Janes (from Lands End). I found that because they were more enclosed they got really musty smelling. I have some now that I bought in The Walking Store, but you can buy them in many places for many prices. If I walk vigorously in the pool I sometimes slip if I don’t have the shoes on for traction. I don’t want to slip and fall in because I wear hearing aids — they can withstand a brief immersion and have but I hate to chance it. If your crocs have a back they would probably work for you too.
JK


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1280
Joined: Aug 30, 2011
Posted by @rosemarya, Wed, Apr 19 9:22am

@lcamino, I admire your attitude and enthusiasm. And your healthy and proactive approach will be a great help for when it is time for transplant. I was told that, and it is true for me. I suspect that those Mayo folks have stressed that with you, too
Rosemary


contentandwell
@contentandwell

Posts: 806
Joined: Feb 18, 2017
Posted by @contentandwell, Wed, Apr 19 10:42pm

@rosemarya, @lcamino I am sure my good recovery had a lot to do with the fact that up until the very end when things went downhill quickly I was doing a lot of exercise and watching my diet. I think my recovery owes a lot to that AND to the skill of my transplant surgeon, to whom I will forever be grateful.
JK


Rosemary, Volunteer Mentor
@rosemarya

Posts: 1280
Joined: Aug 30, 2011
Posted by @rosemarya, Thu, Apr 20 6:53pm

@contentandwell, You are right JK – We have to do our job so that our surgeon and entire team can do their job 🙂


contentandwell
@contentandwell

Posts: 806
Joined: Feb 18, 2017
Posted by @contentandwell, Thu, Apr 20 9:33pm

@rosemarya I just recently discovered when I asked about an error on my record of whom was listed as my surgeon that he was the primary surgeon but two other transplant surgeons were in there too! No wonder it costs so much. I had met one of the other surgeons during the initial intro day and she visited me two times but I had no idea she was in there also.
JK

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