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Weight loss
Thank you Rosemary for tagging me in this conversation. I weighed about 240 lbs. at the time of transplant; when I returned home I continued to lose down to my lowest since age 14. I stated earlier in the PICS conversation that I had lost a bunch of weight. I actually was able to buy jeans in a size 14. I did not feel "right" at this weight. Gradually, I regained all of it back.
I started my journey in 2010 prior to transplant in 2011.
I shared my whole story on PICS and am enjoying this forum to talk about my experiences.
I am about to celebrate my 6th year postsurgery for liver/kidney and, although it took me a while to recover, I am doing well at this time. I just need to start working on the weight issues again.
Thanks for allowing me the privilege to share my story. If you have any specific questions, I am happy to answer.
Until next time, CK.
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This is a comment to all regarding exercise. My goal is to lose 40 lbs in the next year, hopefully before I need a kidney transplant. I have bad plantar fasciitis so I was using that as an excuse to no longer walk my dog. With treatment from my podiatrist, and a renewed commitment to take care of myself, I am back to 1 mile walks but my exciting news is that I have discovered the rowing machine at the YMCA. It is a full body workout and the first time I managed 10 minutes. Sometimes I do 30 minutes slow and easy and other times I do shorter times with intervals (row hard for one minute, catch my breath with a slower row, then row hard again). I started doing it every other day because I felt like my muscles needed a day to recover, much like weight lifting. I prefer this workout over swimming and it is easier on my feet than waking, treadmill, elliptical etc. Just thought I'd throw out the idea to anyone who has access to one at a gym. It always intimidated me before but I like it. I just ignore the super fit people who row next to me really fast for 10 minutes then get up and go to another piece of equipment. The first time I had some brief flank pain (kidneys) but it has not repeated. It is a good abdominal exercise so I've noticed that my posture has improved and I'm sleeping better. I do recommend some stretching after rowing because you use a lot of muscle groups you don't realize until stiffness the following day. Of course, don't start any strenuous workout without consulting with your doctor. This post is strictly anecdotal. Whatever you do, keep up the good work taking care of yourself!
@chattykathy We really must move. This house is way too big and on over 2 acres of land so too much to maintain -- don't be impressed, property values here in southern NH are significantly less than in many areas.
I know this task will be an enormous task but it must be done.
My potassium is fine. I am just tired. I think I am getting burned out from exercising at the club too. I hate exercising in the gym, and I do Pilates but don't like it much, so the pool is my most frequent activity but I am getting tired of it.
JK
@rosemarya It is a gigantic task and I too have trouble throwing out if it has any sentimental value. My son is also very sentimental and would like to have numerous things we have but between the fact that he is an apartment and hopes to eventually have more space, and he is 3000 miles away in southern CA things are still here.
Unfortunately I doubt my son and daughter will ever be within driving distance. I had really hoped my daughter would move to Boston since she still has friends around here and her fiance's sister is a doctor in Boston but neither of them like it there, so they will either be living in NYC where she lives and has an enormous network, necessary in her position as a free lancer, and he lives in Philadelphia where he has started a business. His business really does not rely on location though so he could probably do a mover easier than she could.
Wouldn't that have been something, to all be there at the same time! From stats I got from Compare Transplant Centers I was one of only two women in the last quarter of 2016 who had liver transplants at MGH! I forget what the other criteria were for that stat, age or MELD, maybe both. I saw my oncologist today and we were discussing when I got my transplant and it was almost definitely "early" (MELD 28) because my blood type is B. The average MELD at MGH is mid-30s.
Hmmm, in my mind fatigue and tiredness are the same. How would you distinguish one from the other? It really started in the last month so I doubt it has anything to do with the transplant. It does seem that some of the drugs do not effect you immediately but after some time. The hair loss has just started happening in the last few weeks. I will have to google my drugs to see if they could be causing this, fatigue or tiredness.
Right now I feel like taking a nap. We did Boston today to see my oncologist -- things were great, thankfully -- and I should probably go out and get some exercise. I am much better off if I go to the club early, right after breakfast. Plus I need to work off some calories.
We do have to learn to live with the side-effects, for sure. To me the worst is the constant "sweats". I've heard them referred to as "night sweats" but mine happen during the day too. It's far worse than menopause. It starts around my chest and neck and then moves all over, up to my scalp and literally to the soles of my feet. I hate them but it's better than not being here so I try to not complain about them much.
JK
@lcamino Thanks for that info, and congratulations on your success, that's great. I have never done a rowing machine although I do others but you make this sound very worthwhile. I enjoy the pool but am getting a bit bored having it as my primary exercise so I need to expand.
When I go to the gym in my club I start with treadmill and end with an elliptical. I too know I do them for much less time than the hard-core gym-rats do, but that's OK. I do some other equipment too. My physical therapist gave me a sheet with recommended exercises and how much and for how long but the names at PT are different from the names at the gym and it's been a while so visually I am not connecting well.
I don't do much regular walking because the impact bothers me.
JK
@lcamino, Thanks for sharing this. You have a firm goal, and a good attitude. And you are a real encourager! My husband and I have joined a local gym and our Silver Sneakers program pays for it. I guess being 'old' has its advantages! I have just returned from Rochester and tomorrow we will start our program.. We want to be in better shape and strength for hiking.
I hope that you will keep us up to date on your progress
Rosemary
@contentandwell, I, too, am intimidated by the machines. I'm used to a simple treadmill and the walking trail locally. I think it is remarkable that you have found the water exercises work well for you. I am not - and will never be a "hard-core gym-rat".
Rosemary
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1 Reaction@contentandwell, I noticed you asked what the difference is between fatigue and tiredness. For me, tiredness may be just being sleepy and in need of sleep, and/or a physical feeling of weakness after hard work. To me fatigue means physical and mental weakness without the sleepy aspect. In most cases, however, I believe they can be used interchangeably. Either way, when I am done, I am DONE! lol
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1 Reaction@2011panc Thanks, I guess I am just plain old tired a lot.
JK