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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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Yes, one project a day or when you have time. I used orange oil on my cabinets and chairs the other day while cleaning, but I did not get the table due to all the junk on it. It has become a pharmacy instead of a dining table. Between the glucose logs, medication trays, and other incidentals it needs a bulldozer to clean it off. I had planned to do it today but am just not feeling it. Tomorrow is another day... I have another DR apt on Friday with GI. It is time for colonoscopy. It all comes around regularly.
I, also wake up and have bathroom trips at night usually 3-4. I only drink water, no soda, teas, or coffee. I stopped drinking all that when I was diagnosed with diabetes. I don't miss it at all now and never even think about it. I make tea for the guys and it does not bother me at all. I use to drink tea by the gallons too, could not be without it. Funny how our tastes change over time and medical conditions.
About that move you will be doing, wow... I would hate to face that one at my age now. The thought of packing up all this stuff we have accumulated sickens me. You are brave to do this at this stage of life. With our bad health, (husband with heart ailments) we would have to get a lot of people involved. Good luck with your move. I hope it goes smoothly.
About weakness, I have days like that too. Could it be a low potassium level? When I feel washed out, I usually have a banana for a snack and picker upper.
Take good care, CK
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1 ReactionI think any time we feel different or sickly, we tend to think is something else wrong. I hate to think things like that because we all have been through so much. The doubt is always there about something else being wrong. Does anyone else feel this way? I am very proactive about my medical care and, especially my bloodwork numbers. I always want to know what my levels are running. Is everyone else this way? Just asking... I feel very comfortable asking my physicians questions about my health and about anything I do not understand. I am curious about everything. I have to know... How do you feel about asking questionsf?
Our son has taught us not to think 'something is wrong' when he has a hiccup... we're learning to deal with things one moment at a time ... he usually shares with us AFTER he has dealt with things.. which we have mixed feelings about.. he doesn't want or need DRAMA! I can get very emotional and step into drama if I don't stay in Present Moment Awareness.
No problems asking questions. Knowledge is power! Have a lovely evening XXL
We feel exhausted some days and we haven't been through what you guys/gals have!! Give yourself a break lol' 😉
We're supporting our son from a distance ... and that's very tiring!!
Let alone what you have been through !!?!!
Happy decluttering and moving. Go gently... we're only human!!
Happy days ladies. XXL
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1 Reaction@chattykathy I am very much that way also, particularly checking results on the portal. I think I drive my PCP crazy. Too bad, it's my life and my health. I have mentioned that the doctor I was going to when I had my first HE episode told me I had Alzheimer's -- on the phone, no less. Since then, although I know the episodes were not related to Alzheimers at all I do worry about that.
JK
Life rewards Action XXL
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1 Reaction@chattykathy, It is refreshing to hear you speak of spending some R&R with your sister! The words alone are comforting. Sometimes I find myself justifying to others the need for me to take some R&R - just because I want to. Since my transplant, I find it mentally and physically necessary and rewarding. So good for you.
No, I am not into spring cleaning, I got lucky this year. We had major house painting done in the spring, and everything needed to be moved out of closets. So I had the opportunity to do some major clearing out of stuff. It continues to be an ongoing project.
I have just returned from my annual eval. in Rochester. And I, too, received a great report. Even got a bit of a reprimand by my kidney doctor to stay off ladders to avoid falling. again.
There has been a recent blog posted by @kequick about patients' strength and physical ability prior to transplant. You might find it interesting. http://mayocl.in/2p0TEnJ
Rosemary
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1 Reaction@contentandwell, It sounds like you are facing a gigantic task to catch-up and to move forward. I find that one of my most difficult part of cleaning out is letting go. My sons do not want most of the things that I have here. And since the recent passing of mother in law, I have felt a relief from the quilt that I held about purging some of her things as well as my own mom's things. Right now our goal is to simplify and to stay in place for a while. Our kids are within driving distance and don't spend the night.
Glad to hear that you have had a good recent transplant experience, too. It's too bad that we weren't all at the same place at the same time! That would have been an awesome waiting room experience!
Do not push yourself too hard. You are not very far out from your transplant surgery. So I think that it is okay to shorten or to skip your classes. That fatigue can be a real burden. Is it fatigue or overtiredness? Has your transplant doc mentioned if it is a possible side effect of the drugs, or is there anything else that might be causing it? I learned that my 'side effects" are just something I am going to have to live with. At least there is the satisfaction of knowing that there is not another cause.
Rosemary
@chattykathy, Yes, I think like you do. I am a very positive person, but I, too, wonder if something might be wrong. This is especially if there is a twitch or anything in my liver or kidney area. But It I feel the same twitch in another part of body, I hardly notice. I am also dedicated to taking my temperature if I'm not feeling 100%.
I am the same about bloodwork. I have my labs drawn locally and they are faxed to Mayo. I return to the lab after a few hours to be certain that they have been faxed and to get a copy of the results for myself. Always let out a "WooHoo" when I see good results. The nurses at the lab are used to me. In fact if I need to get labs drawn in between my routine 3 month order, they always ask if I'm doing okay.
I ask questions. And I carry my list of questions. I have never had a doctor to object to that. My team at Mayo encourages questions, anytime. The online portal is wonderful. And there is a 24-7 phone number for providers to call.
Rosemary
@linda59, I want you to know how much I appreciate you for sharing your point of view. As a mother, I can clearly relate to what you say. However, as a transplant recipient with 2 loving sons and husband, you are giving me a deeper awareness of what it is like from the 'other' side, the point of view of the caregiver and loved ones. They do not like to talk about it much, and you are helping me to understand some of what they have gone through.
From deep inside my being, my liver and kidney, I say thank you.
I am happy that your son is doing well.
Rosemary