I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: UkrainianTracksuit on November 20, 2018, 05:07:42 PM
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I never had lower belly fat before and had a flat stomach. That is, until post-tx
I haven’t gained much weight. 5 lbs is like the most I gained. But 10 months after the procedure, I have the most embarrassing belly now. Also, I’m bloated most of the time. So, while I feel better, it seems like tucking a turkey into human pants when I get dressed! It’s doing a number on my psyche and even my husband pokes at it. Man, I could do without tha attention on a problem I already know exists! :stressed;
So I don’t eat a lot of bad foods. My GP said nothing was wrong with my diet but that since muscles were cut during surgery, I can kiss my previous abs goodbye. Is this really so? I mean, I totally get that muscle was cut but can any form be recouped post-tx?
I stay busy. I XC ski, and even with fresh snow on the trails, it’s like a droopy belly in spandex! Do I just need to work out more specifically or is it true all hope is lost?
For reference, it was a SPK.
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My gosh you had a transplant and you are complaining because of a pot belly now.... That is it???? Come on ...... Congratulations on going through the process and being selected......
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There is no exercise that 'spot reduces' belly fat. the Experts at the health spa I go to say the only way to cut down belly fat is more whole grains. I agree with other poster-I'm happy to trade my life on dialysis for a life with a belly. I suggest you buy bigger pants!
I'm 4 weeks now from transplant and I still haven't gotten used to the idea that I'm not tethered to a machine at night. I can actually walk around the house at night! I'm planning lots of trips now that I don't have to think about shipping supplies and lugging that darn cycler. Totally a game changer.
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Don’t get me wrong, I’m happy to have 2 new organs. From insulin as a newborn baby to finally living without it and then HD slamming the breaks on everything in my youth, transplant has been a life changer. For once, I’m living like a regular millennial! :2thumbsup;
But on the other hand, I competed in competitive biathlon prior to dialysis and I wanted to do that again. So I started training and got hooked up with a club. My whole body is thin and has muscle tone.... except for that belly! So while life is better, this whole part is defeating. So, if my mind isn’t happy, I’m not happy.
And as for pants, it’s a weird shape to fit! Shoving my new belly into J Brand leather skinnies is like covering half a cantaloupe with cling wrap. The labels I buy don’t cater to people with bellies. Ugh!!! I guess if I was older I wouldn’t care so much but I just want to scratch my skin off looking in a mirror post-tx!
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I remember after getting my dad's kidney that an exercised pot belly, looks as beautiful as a flat belly
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The tummy may have more to do with the pancreas transplant than the kidney. When my husband got his kidney last year he was the same as before but now this year with the pancreas his tummy really sticks out. It's only been two months so far so we'll see what happens (he's not an exerciser just always on the go with active work).
I've got the tummy problem now post kidney donation. They did it laproscopic so they removed it from very low in my abdomen. It healed like I have a shelf now. So some dresses I used to wear have had to be donated. I'd take this over home hemo for him any day.
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Maybe I will have an excercised pot belly then! Love that term, cas!
And thanks Just A Girl, for raising the point about the pancreas. I don’t think about it much because it is in there, plugging along and doing its job. Always more emphasis on the kidney in regard to its care and tests.
I’ve noticed with the pancreas that my bowels are so much more vocal, at the level it’s located, than pre-transplant. Wondering if that is part of some chronic bloating these days.
The other thing is that my incision is near the left side of my belly button. Obviously, it’s a little crooked since it had to dart away from the belly button. But anyway, one side is visibly higher/sticks out more than the other!
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Look up Amy Purdy, the Paralympian. Since I don't have kidney disease or ever had a transplant I don't want to be out of line here by commenting but, I am sure you are every bit if not more, beautiful than her. You are "you" and from your posts here on ihd, "you" sound like a pretty great person. You sound highly educated, motivated and driven to succeed. Take care of this new body and the image you have of it. You are obviously meant to go places in this thing called "life". Best wishes to you!
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Aww, PrimeTimer, you know how to make a girl cry! :cuddle; Thank you for such kind words!
Amy Purdy is a powerhouse and what an inspiration! She's made her own way through it all and now, I have to figure this life out too, as you say!
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Something I have learned is to never deny myself my own feelings. Whether it's over something I like or don't like, I can't move forward without acknowledging my own feelings. And I don't like accepting things just because it can't be changed. Sometimes the things that bother me eventually bother me less either because it's no longer a priority (to me) or simply because my time was filled by other things. What bothers you now may not bother you as much later on. Or it will but by then you've learned to move forward with it being in your life. I think you probably already know this but I'm going to say it anyways: Our feelings of self-worth go a long ways toward self-empowerment.
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Any abdominal surgery damages muscles. Depending ont he direction of the cut, vertical vs horizontal, the possibility of restoring a pre-surgery appearance will vary immensely. As the vertical incision does far more damage to the lateral muscles.
There are many exercises that isolate lower abs. Repeated exercise of these muscle groups will make a difference but it is going to take time. Like that old saying "Rome wasn't build in a day." Neither can muscle tone and appearance be restored. This could take months of effort and dedication on your part.
Belly fat can be another issue. It is easy to put on, and yet very difficult to remove as the body will reduce most everywhere else before reducing the belly fat. Sort of like a savings account that is locked up tight never to be used. Here again, this will take serious time and effort, a reduction in diet, increase in metabolic rate over a long period of time to get the results you are looking for.
From what you have told us already I am confident that you are doing most all of the above already and you WILL succeed.
You are one tough Lady. Far stronger than I.
Take Care,
Charlie B53
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Prime Timer, you are right on the ball here. Right now it bothers me but later on down the road, it won’t. I’m still at that silly age where this stuff matters but in the big picture, it doesn’t. Having “freedom” from dialysis and injections, if only for a time, is much more important.
Hey Charlie, thanks for the kind words, but I am surely not strong or tough! My view is that in life we have 2 choices: we can decide to check out prematurely (as in end it ourselves) or go on living. Life pushes us forward and if we choose to live, there’s a bunch of stuff to go through. I learned to go with the flow rather than fight the current.
And yeah, it’ a vertical incision/scar so no wonder it’s been worse! It’s 9 inches: from above my belly button to right above my pubic area. That’s a lot of muscle damage when I think about it now. Just have to keep working at it. I’d like to join a gym for direction rather than just distance training but it seems like they are meat markets and places for selfies these days. :waiting;
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UT, instead of joining a gym, perhaps you could find a personal trainer to work with. Several years ago, I happened to read an article in our local paper about a man who had survived many health challenges but wanted to return to being fit. So he found this personal trainer who designed a program just for him that addressed his particular concerns that he could do at home.
I contacted her because I wanted the same thing. I am older and because of the post tx meds, I was concerned about bone health and upper body strength. She worked with me to first make sure my back was strong and stabilized, and then built a strength training program that I could do here at home with just free weights and stretch bands.
So, I'm thinking that maybe you could do the same type thing since you have a particular goal in mind. Also, if privacy is a concern for you, this would address that.
Anyway, please remember that there is a difference between being slim and being fit! Try to be patient with your body. It has been through a lot and now deserves to be honored and not criticized! :2thumbsup;
Good luck and take care!
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And yeah, it’ a vertical incision/scar so no wonder it’s been worse! It’s 9 inches: from above my belly button to right above my pubic area.
My guy's pancreas scar actually almost connects to the bypass scar from heart surgery in 2016 so his scar runs the entire length of his torso. He's going to scare people in the pool next summer lol. Pancreas scars are huge.
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That's a super idea, MM! After some quick googling after I read your reply, I see there is a place that offers semi- or private personal training. The best part is that, like you say, there is a complementary session to discuss concerns. There are some things that "normies in gyms" don't get such as weight restrictions and a fistula.
My guy's pancreas scar actually almost connects to the bypass scar from heart surgery in 2016 so his scar runs the entire length of his torso. He's going to scare people in the pool next summer lol. Pancreas scars are huge.
Wow, that sounds like some scar! A badass scar at the pool! Sadly, my pool days are completely over and I won't be hitting up the Black Sea beaches anytime soon. Between the belly and the scar, and the Russian gazelles strolling the sands, they'll throw me back into the exclusion zone of Chernobyl.
And I have a bunch of drain scars that don't seem to be fading. There's like 5. It's like a map for buried treasure! What a belly I have! :rofl;
My husband is really crude so he told me to just put make-up over the scar "like strippers with c-sections gone wrong working on a Tuesday afternoon." ::)
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Scar lines will shrink and fad a bunch but it takes TIME.
I had both shoulders taken apart, rebuilt then reassembled leaving a vertical line down over the front of each shoulder. It was stiff tissue, the Physical Therapist I had took a 1/2 wooden dowel or plastic with a well rounded and polished end and holding in his fist pushed and turned circles, massaging the scar tissue, sort of breaking it up internally into smaller pieces that became more flexible. Those small white lines are now soft and pliable. Hardly noticeable, and if noticed, not bad at all.
CHECK with a PT Person before trying this yourself. This could be a job for a concerned and Loving Husband, followed by Kisses to make it feel better. Give him this note.
My Wife's first C-Section/Child was an emergency. Very Old Dr didn't even know much about a bikini cut and cut vertically far longer than necessary. He was in a hurry after all. Patsy was never one for exercise much of anything. Ruined her upper abs. I still Love every inch of her.
I know you are much stronger than you may think you are. Time and effort will give you the results. Maybe not 100% but I'll bet you make it into the 90's!
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Yes, Charlie, I've heard about that "breaking up of scar tissue" protocol! Definitely will check with a therapist first before doing anything with my abdomen but I know what you described works. As for scars fading, it's true that it takes time too, as I have learned from my graft and fistula scars. The arm may be less than pretty but where some incisions were made on "failed attempts", they've faded over time. In my pre-dialysis days, I scratched my body until I poured blood and those scars seem much harder to fade. Even with creams, etc. Just learned to live with them and wait... And I'll give my husband the doctor's note from Dr. Charlie!
If only there was something like that for breaking up scar tissue in vens....
There is something weird I noticed about my incision too. It's almost like when the surgical team closed it up, they started at the bottom and it's tighter and forced the tension upwards. If that makes sense. So it's like it sticks out more! Maybe this is the shelf that Just a Girl mentioned...
I would probably help to stop standing in front of a mirror at this point! :rofl; I've come down with my first post-tx cold so I'm kinda finding trouble...
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Scars are merely the marks left on a True Warrior.
We do NOT give up, nor do we give in.
It really isn't our appearance on the outside as you are truly Beautiful on the inside, and that is what matters.
Anyone that knows you, knows you on the inside.
Anyone Judging you from the outside doesn't matter.
You can print this and frame it.
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Just a little bit more frustration but hey, what’s a pinch more in this life, right?
Finally, after over 3 weeks of waiting to be slotted in with the intake person for a personal training consult, I had my appointment.
So, I discussed my problem and limitations, such as weights, with some old, one working (sorta...) vascular accesses. The person at the helm of the meeting was really understanding about it all.
She told me that they recently worked with a young woman who needed to regain muscle after CF and a double lung transplant. Now she’s off doing other fun sports keeping in shape.
Lung transplants are hardcore so if they could help her along, I should be a piece of cake.
Here’s the problem. I guess my “need” to not feel like a body slob aligned with the timeline everyone needs personal training for warm vacations and New Years resolutions.
They can get me into a regular program IN MARCH!
And the warmer weather melted the majority of snow off the trails (damn it!) so XC is a no go... for now.
Any one have any sort of program ideas that work for them that are done at home? Something that can hold me over until March?
My husband offered to do training but he’s much too strict about it than I want to be. And I know when he works out he gets belligerent and insulting to others.
But he suggested medicine ball routines to build up the layers of inner core muscles... it’s all Greek to me... any experience post-tx with any of this?
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I have a vague recollection that when I was in a talk about kidney transplants, one person who had had one years before was moaning that it had made him put on weight. I think the doctor's reply was that it was the meds that caused this, and that there are now alternative medications that do not do this. All of this is "vaguely remembered stuff that I was only half listening to", so you will have to check my facts with a neph before taking them as Gospel, but it may be worth looking into.
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Maybe you can find a group that does resistance training. Or an indoor pool that offers classes. Pool classes for people with arthritis or fibromyalgia might help. I don't want to be giving empty advice but maybe groups that specialize in physical training for those with disabilities (and even on meds because of their disabilities) could help. When I was a young athlete I did most of my weight training during the winter indoors. Weather was often too crappy outdoors to not risk pulling muscles. I had to run and sprint inside a gym and run up/down bleachers and stairs. If I ran outdoors, I had to bundle up. Hated that. But pulled muscles are verrrry painful. And be careful about lifting, pushing and pulling. I once had some major surgery and the surgeon told me that it would take a good year for everything inside me to get back into place. A lot of muscle, tissue and organs are pushed, pulled and moved around during surgery, no doubt your own insides got a bit moved too for your transplants.
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I'll have to ask my tx doctors about the medication situation. Definitely know that Prednisone does this to some patients. And then, the ability to have a more open diet contributes to weight gain post-tx. I've gained only around 5 lbs post-tx but I have seen people gain a lot more, so it's definitely a valid point, Paul.
PT, you're absolutely right that "stuff" probably got pushed around during surgery. Since it was a major surgery, I had to wear one of those uncomfortable abdominal binders. Most definitely I want to be careful than cause any unneeded pain.
My husband still does a high intensity workout from a sporting background so he bundles up to run and then does crazy stuff in the gym. So when he offered his advice, I knew to turn it down because it would have been a ripped spleen... or something odd.. in me! My new kidney probably would cut itself out and run away.
Are pools okay for people with tx? I know not to swim in dirty lakes but I never paid attention to the pool lecture, if there ever was one. And now to look for resistance training....
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Hello Ukrainian Tracksuit,
Since reading your comments, I have been observing transplanted people at "my" transplant center and have noticed, that they all seem to have a bit of a belly, some smaller, some bigger and when I approached them very delicately about this and asked, I was told that the new kidney was placed just precisely there, but they don't mind at all, because this is the place of their new kidney, which they were lucky enough to receive and it is now an additional organ in their body and needs a bit of space. They also told me that the new kidney - in time - expands a little bit, because, the better it takes over all the work a kidney is supposed to do, the better it expands a little to do all the work, because after all, it is one healthy kidney taking over the work of two healthy kidneys. Having thought it all over, that may be the answer, what do you think ? By the way, I also happen to have a little bit of a little belly right now, despite the fact that before my transplant I never ever had one.
It should be interesting to know, if you find out more or a different explanation from the transplant-nephrologists ...
I send you my best wishes and also seasonal greetings from Kristina. :grouphug;
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This scares the crap out of me because my stomach is flat flat flat and I have this huge issue with body dismorphia, so I'm pretty sure that being able to see an organ bulging through my abdomen is going to freak me right the heck out....
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In my case, there is no organ bulging or poking out of anywhere. It's just where they cut me in that long incision that it lost muscle tone. And I am BLOATED. Seriously, I could have conversations with my pancreatic side of my bowels. I don't think kristina meant the organ stuck out but rather, bellies happen for some surgical related issues.
My husband plays recreational league ice hockey so he pulled some strings and I got to talk to some "high performance" athlete coach. Well, as soon as I showed him my problem, he just KNEW the muscles were sliced. As he pointed out, above, it's firm and fine, below? They just let loose....
But there is no bulging organ. OMG, if my big honking new pancreas bulged out, even I would be freaked out! :o Some people say they can feel their new kidney..but I'm not one of them. I won't speak on what I don't know.
I hear you on the body dysmorphia; I guess if I didn't "care" so much, it wouldn't be an issue.
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I worry a lot about bloating... why are you bloated? What's causing it? Is there a solution? That has to be awful uncomfortable. I can't stand it when I'm bloated from my cycle, and I only get a tad bloated from that. What can be done about it? And I know it's an extreme measure, but are the muscles in your stomach too badly damaged where any kind of reconstructive surgery can be done to repair them? Do they not try and repair the stomach muscles while you are in surgery? One time I saw this episode of... gosh, I think it was Embarrassing Bodies, where a woman kind of had the same problem. She came in to the doctors because no matter how hard she worked out or how much she dieted, her tummy wouldn't go away. Kind of looked like she had half a cantaloupe tucked in her pants, but the rest of her was very slim. Turns out her stomach muscles had been damaged from having kids. I don't remember the episode all that clearly, but I believe she had surgery to repair the damaged muscles. Have you talked to any of your surgeons about this? Or the bloating, for that matter? I'll see if I can find that vidya on the YouTubes if you're curious. (I mean.... now I'm curious about it again...)
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Hello KeenString (as in: I play the guitar ?)
About bloating, my doctor told me to keep strictly to my liquid-restriction during the time/years needing dialysis-treatments, because if we drink more than we are allowed (and the precise liquid restriction doctors have worked out for each of us), our body could get easily bloated because from one dialysis-treatment to the next, the body may now be unable to "get rid" of this added water and so it can go nowhere and bloats our body and that can be dangerous, as water may also collect around the heart/lungs and may perhaps cause a heart-attack etc... My own liquid restriction during the dialysis years was 500 ml every day and I made absolutely sure to "stick" to it.
After the transplant, perhaps a big tummy depends on where the transplant-team "put" the kidney? My transplanted kidney has been "put" very much on my right side and it does not show except for the scar, but at first I had a little swelling where the new kidney had been "put", but now it has very much subsided and hopefully it stays like that. I see many people at the transplant clinic with a prominent tummy. I agree with UT, that the organ is perhaps not "bulging out" and perhaps the doctors need to find a space in the body for the new added organ and perhaps sometimes it works better than at other times ?
Good luck wishes from Kristina. :grouphug;
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My surgeon explained that because my bowels got, for lack of a better term, played around with and there's a new pancreas dumping its excretions in a new place, bloating is to be expected. But, he reiterated that it should go away after awhile. Well, it is almost a year, and my disturbed bowel area likes to talk! So, they suggested dietary changes, as in addition of even more fibre, which causes bloating at first, but will settle down.
The other point is that my gut flora are probably off after regular antibiotic use. There are probiotics for that but I forget to take them because they have to be like 2 hours post-antibiotic use. Whatever...
As for the stomach muscles, time will take care of it. They will heal but vertical scars take more time. So, it was suggested to focus on core strength to give them a bump. It's funny how you explained the lady's belly looking like half a cantaloupe in her pants! Yes! That's how I described my belly earlier in this thread. I said in J Brand leather skinnies, it looks like half a cantaloupe covered in saran wrap! :rofl;
In regard to reconstructive surgery, my tx team doesn't think it is a good idea right now. I asked about some other cosmetic procedures (yes, I am one of THOSE...) and they said healing/infection is a real concern. Since we are immune suppressed, we don't heal as well and we're awesome candidates for infection. So, for stomach muscle repair, they are concerned about an internal infection happening (as I had one with my original incision and I am colonized with MRSA; colonized like moon!) and spreading to the kidney/pancreas area.
So, I just have to persevere. Oh, I asked about Coolsculpting also, in case my belly gets floopy with lack of muscle down for the time being, and I need clearance from my transplant surgeon for that too! It has been done on transplant patients but it gets tricky with those organs involved in abdominal surgery.
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Kristina- Thanks!! KeenString is actually the name of a pretty neat song by a musical artist who goes by the name of Opiuo, but I actually am learning to play guitar. My father was an extremely talented guitarist, but he hasn't been able to play due to a stroke that left his left side compromised. He still manages to be a great teacher, though! I'm on a fluid restriction as well because I'm on PD, but often I find that my normal is under the restriction they gave me, so unless I know I've eaten a lot of salt, I don't really watch how much I drink. I know it wouldn't be the actual organ sticking out, but knowing that it's the organ that's making the tummy would still freak me out. Body Dismorphia is a strange, strange thing. I'm also diabetic and when I get knots from doing an insulin shot in the same place too many times, it freaks me right the heck out!
UkranianTracksuit - So, within time, do you think the tummy will go away? Or the muscles will heal enough where you can, say, do crunches again to tighten all the muscles up? I was told not to do ANY kind of exercise that works out the abdominal muscles while I'm on PD due to the possibility that it might displace the catheter. God, I can't TELL you how much I miss doing crunches. And I think I got the cantaloupe thing from you, cause I did read this entire thread before I posted on here hahaha. Don't worry, I'm one of 'those' as well. Call me vain, but I think if looking good is important to you and it improves your quality of life, then it's just as important as being physically healthy, as well. (I mean, within reasonable limits. Don't compromise your life for having bigger lips, or something like that.) I have on my list to talk to the surgeons about piercings after I get the tx, because I get a new piercing or switch old ones out for new ones every few months!
I did find this article online. The last part lists some specific exercises you can do to start rebuilding your muscles. Obviously I would check with a doctor to make sure you're ok to do them. Heck, you seem athletically savvy, so I'm guessing you probably already tried these. It talks about how these exercises build an 'abdominal girdle."
https://www.livestrong.com/article/530612-how-to-rebuild-muscles-after-an-abdominal-surgery/
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Sorry for getting back to you late. I have a deadline approaching for a work project and I'm going crayzeeee... :urcrazy;
Thanks for the link! Looks so far helpful! And it links to other further good stuff!
So, yes, the muscles should heal but it is going to be a long drawn out process. Improvement will happen slowly and sadly, I'm not patient. It is going to take dedicated work to rebuild the muscles and to be honest, I get much too frustrated. I went from flat tummy to this disaster?! Yeah, I mean, don't get me wrong, transplant is a million times better than dialysis or taking insulin shots, but you know....
The point is to keep up with core building exercises but I've haven't found a regiment that I'm happy with yet. STILL waiting for the personal trainer to get back to me ---- not until MARCH. My husband started me on a basic work-out and I hated it. He's had a six pack for most of his life so he just doesn't get what it's like to come from "having your muscles severed and a need to rebuild." So, he nags if I don't keep up my work-outs or points out what is looking lumpy! "You'd have no problem if it wasn't for that.. ", "Once you work on that..." like it is all just lah de dah, fast abs! Man, I should stop before I get into a rant. Anyway, you can regain what was there prior BUT it won't be exactly the same. I'm just peeved because Valentine's Day is coming up and no lingerie companies have "Bride of Frankenstein" collections...
It's true that you have to avoid abdominal exercises for a few months post-tx. It was impressed upon me to really avoid deep bends for awhile. The same applies to a kidney transplant but they REALLY drilled it in with a pancreatic transplant. After awhile, you'll be able to do crunches and all that no problem. The really weird thing is that if I move a certain way, like a twist, I can feel in my new pancreatic zone, kind of like umm, something there? I noticed it a few times working out. Weird but not weird enough to get creeped out.
Good luck discussing the piercings. Let us know what the tx team advises. I'd be interested to hear just because it is one of those questions I'm sure youth/the younger transplant demographic would like to know! :)
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So, here is what I did, and you might be able to do this too, being that you've had the transplant and your stomach muscles are still recovering. I spoke with my PCP and my Nephro about physical therapy, and both agreed that it would be great for me. (I'm actually probably in worse shape than you, because I'm quite weak due to the coma fiasco and then going on dialysis took a whole lot out of me, so I can't make my way out of a wet paper bag.) Rather than get a personal trainer, they're hooking me up with a PT trainer that is going to customize my workouts based on what my body can do (apparently not a whole lot of abdominal things due to the PD catheter) but at the same time, they're going to try and help me build my abdominal muscles in preparation for the surgery, so that I don't like... completely have zero strength when I begin recovery. Out of curiosity, I mentioned that I knew someone that had a transplant (you) and they were trying to rebuild their abdominal muscles. They said that you might be able to ask your PCP if they'd write you a scrip for PT, considering you did have abdominal surgery and any kind of abdominal training should be done under a watchful eye when you are recovering from it. Not sure if that's something you'd want to do, but hey, it might get you in with a personal trainer that can specifically help with the problem before freaking March!