Hey gang! It seems that every time I see an ad or read something about a diet supplement to help to get rid of belly fat or insulin resistant fat, I ask my Transplant Coordinator if I can take it. They always say "no" immediately without checking with the physicians or Pharmacy. They always say 'no' to anything that is holistic or natural, except the things that THEY want you to take, including vitamins or supplements that are NOT FDA- approved (which is usually the reason they say no to other supplements and products that may interfere with the anti-rejection meds, such as probiotics and prebiotics) such as multivitamins, prenatal vitamins (suggested to me by a PA b/c of the collagen and biotin they contain to address my hair falling out after the transplant), biotin, allergy medications, digestive meds (like colace, etc.).I am writing to ask if anyone in this Transplant Group has been given permission to be on any weight loss supplement (maybe limited to FDA-approved), such as a tablet or some other oral supplement.
I'm interested in taking a medication instead of getting on something like Nutrisystem or Jenny Craig Meal Plans, etc, due to the cost.
If anybody has been given permission by their transplant hospital or nephrologist to take any sort of insulin-resistant medication for weight loss or belly fat loss, please let me know. After my transplant, I lost a little weight (171 to 157) b/c of not having much of an appetite. Then I started eating and I was still losing a little weight. Then, around the holidays, I found myself in a mentally depressive state (you know -- the Holidays, isolating, no real friends, no close family ties) and started eating candy (sugary stuff) and what seemed like constantly snacking. Now, I'm up to 200 lbs.
I went into the transplant at 171; about 6 months later I was down to 155; and now I've gained 45 lbs. in about 5 months and am at 200 lbs -- especially around the waist, belly, hip and thigh areas. My transplant was about 15 months ago.
If you are interested in reading about what I'm reading about for weight loss and liver health, it is called "Liver Renew." There is a video by a doctor I cannot remember his name and there is a website listing all the ingredients in it, such as Ginger, Dandelion, Beet Root and Artichoke, etc.
If you have something to share, I sure would appreciate the help.
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Do you have Type 2 diabetes? If you do, you may qualify for semaglutide injection, which is a 'GLP-1 receptor agonist' that not only improves diabetes but also lose weight.
Never had any diabetes, but have heard or read that post-transplant patients many times will be diagnosed with type 2 diabetes. I am concerned about that right now since sugar seems to be my go-to depression medication. I don't have an appointment with my outside nephrologist for a couple months to ask him. I'm going to cut down on the sugar though.Perhaps I should go see my nephrologist sooner before this gets too out of hand!
I think your primary care doctor is the one that is better at managing your weigh and endocrine health. Weigh control is important especially with a transplant so it is good that you are concenred. Another parallel approach is begin physical therapy to build your strength up so you can be strong enough to have regular physical activity like walking half a mile a day and build it up from there. Physical activity not only improves physical health it also boosts mood and helps combat depressive feelings.
Thanks for the advice about weigh (sic) (weight). My PCP is an internist and is new to me. He isn’t very knowledgeable about kidney transplants. I’m going to find an Endocrinologist to round out my Alphabet soup of Specials!
I know more physical exercise will be a benefit (just mowed my lawn yesterday). I’m single, so I do all the housework and maintain the house (I own a duplex, including cleaning leased apt when tenants move as well as interviewing perspective tenants, etc.).
I signed up for Silver Sneakers under Medicare b/c there is a gym (YouFit) across the street from my neighborhood (I haven’t been yet) and they even have virtual chair yoga and other strengthening classes and I still have committed to getting started yet!
I’m my neighborhood, young “teens” drive those souped-up cars with loud speakers and driving too fast, so I don’t like walking in my neighborhood.
Since I’ve been eating more sugar-based foods, some people say it can be a side effect of the prednisone, I have not had the energy I used to have. It’s a double-edge sword. If I don’t get more strength up, then I don’t have the energy. If I don’t have the energy, then I don’t feel the motivation to get more strength. It doesn’t make me feel like jumping up and getting a bunch of exercise. I’m really working hard to get my mind set on it though.
I don’t have the funds to pay for a physical therapist or a workout coach.
Yep…. I know WHAT to do, but finding the motivation to walk, exercise, go to the gym, etc. is kicking my buttocks! I’m doing the best I can so soon after a transplant. It’s a bit foreign as well since I was always athletic (softball, tennis, street skating in Atlanta) and I never really HAD to watch food intake. I was even losing weight 10 months after transplant, then suddenly I was eating foods packed with sugar (the devil!).
I’ll make it! It might take longer now that I’ve aged and no longer the young whippersnapper I used to be! A Kidney Transplant at 66 yrs old takes a bit more to get my energy back!
I also agree with your transplant team that you should avoid all over the counter "weight loss supplements". Many of them contain unidentified substances, excessive caffeine to dehydrate you, and even diarrhea inducing compound. Consuming these ingredients will likely interact with your already many medications and easily become toxic to directly harm your transplant and other organs and health parameters. That is a very high risk behavior that you really do want avoid.
I have had the same problem! I was always thin til transplant. Now I can’t get rid of it. I asked and asked answer was always no to everything til finally I got ok for nutrisystem. They always say no to anything taken internally although I did finally get them to say ok to CBD for pain but 2 weeks before my lab so they could check since they don’t know how different things can affect. They just say no out of habit I think. I really wanted to try Golo. If you hear anything please post!
Bunkin:Thanks for the info on the nutrisystem. Their new commercials look pretty good as if the food is very tasty. I think the problem with those plans (Jenny Craig, etc.) is that those take forever to lose the weight and a lot of money to their companies! The GOLO commercials now say they spent about $200 to lose their weight! [That's another thing that gets my goat. These transplant hospitals keep changing medications, adding medications, etc., and do not take into consideration that many of us had to go on Medicare, on disability, quit our jobs or are now seniors, or on a fixed income, and just can't afford all of their "toys"! I just finished paying $7k for my co-pay of the transplant -- and I'm single!!]
When I watch the video and read the articles about that "Liver Renew" (which does help with weight, diabetes, blood pressure, cholesterol, etc.) claims to have been "FDA approved", so I thought I'd ask about that. GOLO does not make such claims.
My transplant hospital staff said (and WROTE a soft-covered book) saying "NO to CBD"! Georgia, I believe, just voted "yes" for legalizing pot shops and CBD. I didn't hear that coming around during the vote, which I do pay attention to. It may be just for people with prescriptions from doctors
Someone I met on here went to Massachusetts for a funeral, she lives in NC, and someone allowed her to use their CBD or marijuana-based lotion to put on her legs to relieve some of the pain caused by the lymphedema. It worked, but she can't get it in NC.
It just astounds me about the different answers from different facilities about CBD products and other things that could be such a relief to the transplant patients. [Sometimes I get the impression that some of the staff and the nephrologists think we should be GRATEFUL to be transplanted and to shut up! It is not their job to see that we are comfortable after we have a kidney!] WHAT ABOUT QUALITY OF LIFE if they say "NO" to everything we want to try to have a better quality of life!!!
Many post-transplant patients are suffering from pain as well as rejection medication side effects and it seems as tho the transplant medical community doesn't know or doesn't keep up with new products that could help us! It makes me very frustrated, but I'm too scared of hurting my kidney to try anything they don't approve. I'm signed up for a couple of virtual or in-person seminars about kidney patients in the next month or two and I intend to try to find out some answers!
CBD at doses of 2000-2900 mg per day (for seizure disorder) increased tacrolimus levels. Similarly, there was a study that use of cannabidiol at the doses recommended for seizure disorders (~5-20 mg/kg/dose twice daily) increased sirolimus levels. If you are on either of those meds, the transplant clinic needs to monitor your trough levels for your safety.
Thanks. I was mostly asking or inquiring abt CBD because of my acquaintance in NC. I don't talk to her much anymore but I still am curious why my transplant hospital emphatically just said 'no CBD'. Maybe it is too much of a hassle to keep track of all the labs, etc. BTW, I asked my transplant coordinator, a male BSN, CMSRN, how many patients he handled at one time. He said at the time he had 300 patients. That guy worked so hard!After my one-year anniversary post-transplant, I was reassigned to another transplant coordinator. I was sorry to switch as the new coordinator was not as proactive (or smart) as the male transplant coordinator was. The first TC was very well-liked and respected by staff and the doctors.
P.S. After many yrs working as a paralegal and research assistant for lawyers that practiced in the field of Medical Malpractice, there is a real fear and push in some of these hospitals not to just willy-nilly allow patients to do things that may come back on the hospital by way of a malpractice lawsuit. My transplant hospital may have allowed CBD in the past, and someone was killed or had a very bad reaction to it, so the hospital decided just to disallow CBD or marijuana-based products as a result.
Just thought I'd add that tidbit. Could answer a lot.
I have been informed that transplant patients cannot go without prednisone. However, I have read on HealthUnlocked a couple times that patients have stopped or reduced their dosage. I take 5 mg. I know a user on here I've talked privately with that said back in the '70s and '80s, the physicians used huge amounts of prednisone after transplant. She blames the high dosages of Prednisone on a lot of joint and bone pain, as well as her weight gain. I thought that prednisone was one of the medications that is necessary for the anti-rejection of the kidney?Now she has Lymphedema and is suffering even more. She was very young when diagnosed with kidney failure. She was transplanted early on and it was rejected within a couple years. Finally, she was transplanted with a kidney from her mother and has lived with her mother's kidney for 40 years? She is miserable.
Thanks for writing and for your suggestion. I'll ask about your suggestions of my nephrologist soon. Thank you.
I'm on my second kidney transplant, and the only time I've ever been on prednisone was the week after the transplants. I take Mycophenolate and Cellcept.
It's interesting how different hospitals have various medication protocols.
That's simply not true. I was on Prednisone for the first 6 months after my transplant and then the doc said I could go off. I'm on year 13 with no problems, but I am still on low doses of my 2 immunosuppressants.
And, BTW, my first week out of the hospital, my ankles, legs and feet were so swollen that I couldn't find SHOES to wear to appointments and they called in a prescription for Lasik. However, they only gave me five pills. I guess Lasik isn't one of the medications that they approve of taking either, so why would they approve of a diuretic? Diuretics are many times combined in heart and or blood pressure medication, so I'm sure that they would have to get my cardiologist, my nephrologist, nephrologists at the transplant facility and a whole bunch of doctors involved just to prescribe diuretics.In other words, the transplant coordinator would make me BEG to get a script for a diuretic!!
Diuretic is a standard BP medication and it reduces excessive fluids to regulate BP. If you have high blood pressure it can be prescribed by the transplant nephrologist. It is not intended to, nor would it be helpful to lose weight with though. If the excess weight truly comes from edema, then the kidney health is likely pretty serious already.
I don’t think my weight gain is edema or water-weight related. If it were, my ankles and other joints, etc., would be swelled.
Since I DO have a cardiologist who watches my heart and prescribes the BP/heart meds I take, I would seek his advice in addition to the Neph. That cardiologist treated me when I went to the RR with AFIB (caused by low electrolytes- I had constpation for a couple weeks and was vomiting. Did a Fleet Enema at home - first time ever - and experienced an Afib situation).
This is another one of those situation‘s where you get two pieces of advice. The nephrologist’s NP said to do take Fleet enema. The 24-hour nurse advisors at my insurance company said do not use fleey b/c of the high phosphorus it contains. I guess NP trumps RN!
If the Nephrologists at the Transplant Hospital won’t prescribe it to me, I can’t take it. I won’t go over a specialist’s head to get something they have rejected.
Prednisone is an anti-inflammatory, not an immuno-suppressant.
There have been studies that show that early withdrawal from prednisone is not detrimental to the patient. Unfortunately, there are no studies on later withdrawal.
There is some anecdotal evidence of people stopping prednisone without any harm.
Thanks for the clarification!! I've read postings that some patients got off Prednisone by themselves. Do you know their routine for cutting dosage? Would you cut your dosage with the doctor's assistance?Appreciate the input!!
I am sorry but prednisone is a steroid. Steroids are a type of medication called an immunosuppressant. They reduce the production of antibodies by 'damping down' the activity of the body's immune system. So prednisone is absolutely an immunosuppressant.
Prednisone has no immunouppressant value at all. It is a steriod and used for numerous other diagnosis besides organ transplant. It absolutely will not protect a transplant patient from rejection and only helps in inflammation when NSAID's like Advil or Alleve cannot be used.
I just celebrated 48 years since my transplant. I have been on 5 mg of Prednisone for many years and I've had a weight issue, especially belly fat, since my transplant. I did ask my primary doctor who is an internist but with a background in Nephrology if I could get off the Prednisone completely. The answer is no. The reason is that everyone's body produces some Prednisone and since My body has been getting it orally for so long it will likely not start to produce it's own again. This will lead to a host of other problems. At this point I will deal with the problems, like weight, that I already know about. This may be for people on long term Prednisone use but not those on it for a shorter amount of time.
By The Way, I have been on Jenny Craig recently and was able to very very slowly lose some weight. However, I just heard Jenny is thinking of filing bankruptcy unless they can find a buyer for the company. They have closed all the in-person consultation offices. They supposedly will have face time consults but They let all the counselors go! You can order your food on line and it will be delivered to your address. Of course now you are on your own to weigh yourself each week. A good scale like they had in their office that could show a small loss of like a tenth of a pound is probably not in everyone's home. Too bad.😪
In honor to April’s National Live Kidney Donor Month, was yours a Live donation?
Thx for info on Prednisone. At 14 mos post-transplant, I don’t like that I cannot continue to talk to the nephrologists at the transplant hospital. Who knows better than they do because they’ve done so many of these? I have a nephrologist. I tried to call him about a couple easy questions (blood test Order and whether I could continue on L-Carnitine, a vitamin/supplement he had me on pre-transplant, and he has not returned my call in four weeks. He could give his receptionist the answers, but he hasn’t.
My Nephrologist is a sole practitioner; I like him; and I think he is very smart; but it is it is impossible to get him to call. He does not have a nurse, only a receptionist. He’s the same age as I am (67 - both born 1955) and I see him with the look of “retirement” in his eyes. I don’t know how to proceed! [When Covid hit in 2020, he was the only nephrologist over the clinic that I visited while on PD for monthly bi-monthly examinations, etc. When one of the Hemo patients passed away, and I realize they are allowed to bring a family member plus 2 EMS drivers with them, I decided to move to a clinic, about a mile away, that is for Home Patients only. I never saw another patient at the clinic at the same time I was there. It felt safer, but I lost the original Nephrologist I had (hey, I didn’t make the rules!!)
I wrote my original Neph a nice card when I transferred, but I can feel a little difference in our interaction. My only alternative is to find another Neph. A trip to see him is 35 miles round trip, and I know there are others closer to my home.
Anyway, congrats on your long-term donated kidney life! My weight gain is like a spare tire just below the belly button - under-crease included. I have NEVER weighed this much in my entire life and find it tiring and depressing!
Watch out for a reduction in prices in the Jenny Craig foods if they announce Bankruptcy!!
Yes, My live transplant is from my brother. He always says it is "good stuff" and "younger than the rest of me". He was the first one to come to me when he had just turned 20, to offer his kidney. I was 23. But our mom was nervous about both of us being under the knife at the same time so she offered and was a good match. I got her kidney in 1974 but it never started to work and I spent 3 months in the hospital where they ended up taking it out. My brother offered his again and this time we went through with it 4/2/75. It's a whole lifetime that he has given me. I consider myself very lucky to have such a wonderful amazing family.
I'm also lucky that I live on Long Island, NY. Even back in the 70's there were several hospitals doing transplants around NYC. I got mine at Downstate in Brooklyn, NY. My kidney was doing so well that I just followed with my primary who has a background in Nephrology and even did his residency under my transplant surgeon. However he is still primarily an internist. My kidney is still doing well but not quite as good as before so I asked him to set me up with a Nephrologist connected to a transplant center on Long Island, just in case. So now I follow with both of them. My primary knows my history so well and the Nephrologist is up on all the latest info for transplant patients. It's expensive to live here but I have so many treatment options!
I understand your frustration about the weight loss. I found that no matter what weight I was at my stomach was always about 2 sizes bigger than the rest of me. Now I have the Prednisone, hypothyroidism and was just diagnosed with diabetes. All three things making losing weight extremely difficult. I'm also short. At 73 I have shrunk 3 inches ( probably from all my meds and the 2 years I was on dialysis before my transplant.) which doesn't help either.
Keep on looking at the glass as being half full. We're both lucky to still be here albeit with some issues. There are many other people worse off than us. My dad died in 1955 from kidney failure as there was no dialysis or transplants yet. He was 31 years old.
Wow! Great story! I was born in 1955 (so was my Nephrologist and many other people I've met recently.There was NO kidney disease in my family, so I used to beat myself up a bit for the "over socializing" in my 20's, then I gave that up because there's no need to blame myself for anyone, especially if I don't even know.
! He was there for you twice. I recently talked to a woman in my support group with my transplant hospital, via virtual meetings once a month by Zoom, whose kidney took almost 2 months to start working (after the deceased donor kidney transplant) to its full extent. She's older than me, in her seventies, but I'm sure that your mother was probably in her 40s and felt bad that her experience with donating was not the great success she hoped for you. A 20 year old kidney -- GREAT! How is your brother today? I hope he was blessed by God for the gift he gave his brother and has lived a blessed life!
There are only three transplant hospitals in the entire state of Georgia. I had the option of two hospitals, Piedmont Hospital and Emory Hospital, in Atlanta and then one in Charleston, SC. There is another on the coast of GA (I believe it is another Emory facility).
I like my nephrologist a lot, but I think he's thinking about travel and birdwatching with his wife and is slowing down.
Thanks for the 411 on the weight. I'm going to talk to my nephew about lowering the Prednisone. I haven't seen a PTH result in several months, so I need to ask my current neph to have one of those don't. I was out back on Sensipar about 4-6 months after the transplant, so the PTH may have been high.
Ouch .....31 years old your father died. You must have been young too when he passed. Sorry for your loss.
I hope you get another transplant if you need one. You sound so youthful for 73 yrs old!!
I scared of getting the Type 2! I never had diabetes, but it is not uncommon for kidney transplant patients to develop it.
My brother is doing just fine.! He is an exceptional man. He is blessed and in fact does a special message for all ages at our church every week. The congregation loves him as do I. I often kid him that as his older sister I used to tease him a lot as kids and I don't know why he ever wanted to give me his kidney. Yes, we were very young when our dad died. I was 5 and my brother was 2. Again being lucky, our mom remarried 2 years later and our stepdad adopted us and was a great father! Although my kidney is not working quite as well as before, it's still fine, so no need for another transplant at this time. My Nephrologist says it's a little tired as all kidneys get as we age.
My A1C was in the pre-diabetic range for years but my doctor was not too concerned as the Prednisone can cause that. But when it hit the diabetic range he decided to put me on Jardiance. I've only been on it about 1-2 weeks , so we will see.
Well bless your brother's heart. He sounds like such an angel. My brother, on the other hand, having been in the military (air force) for 28 years has turned him into some kind of yelling, grumpy, unfriendly person most of the times (no, he wasn't a drill sergeant!). Since our parents died, I rarely talk to him now (he lives a couple States away from me). He says that when we were growing up, his sisters - there were no other boys - really teased him a lot. He still has resentments about this. Imagine, he's now 66 years old and still has resentments about being teased! I'm glad you don't need to immediately get on the transplant track again but recently my transplant hospital social worker sent me an email about an upcoming event, virtual, to listen in while the panels reviews tips and tricks for seeking a living kidney . Just think if you get another live kidney that is really good, you could live to be 100!
In case the ways to try to find a live donor have changed since your brother donated to you, here's the details of the webinar on May 17, 2023 at 6:00 p.m. It doesn't say so, but I would assume that is EDT.You can email pattie.draper@giftdonor.org (the email I received from Social Worker had a big REGISTER button, so you'll have to email pattie and get registered for the Zoom codes). The event is called "Transplant Talks: Seeking a Living Donor".
Do you go to a transplant center in the USA? Most transplant center have staff dietitian on site who will see you at the time when you see your transplant nephrologist. You may have to arrange it in advance of your visit.
They have special program for weight management designed for transplant patients and is free of charge.
Although I understand physical activity and dietary intervention take longer to lose the extra lb, they are truely the healthiest approach in the long run, not just for your transplant but also for cardiometabolic and general health. Learning healthy weight management skills will also ensure that weigh gain doesn't happen easily again in the future.
I’m Ameican, and was transplanted Jan 2022 at the top Private hospital in Atlanta, GA. Is that good?
I talked to the dietician. I think since Covid (and actually before) some of the pre- and post-transplant staff have different levels of intellect and abilities regarding their position (and MANY of the post-transplant staff were still working from home).
My Transplant Coordinator, a male, studied hard and got certified as a CMSRN, BSN (he is certified to help during transplant surgeries and has a Bachelors in Nursing). He is smart, responsive and handled 300 post-transplant patients when I was assigned to him. Unfortunately, I just heard he has moved to Florida.
The dietician, on the other hand, at the Transplant Hospital (I called her once) will tell me the most basic things I can read in a book or what I learned from the Dieticians I talked to for 7 years on PD at home (I called or had to go to the clinic once a month for workups).
I read and research a lot. I’ve talked to NPs or Nephrologists at routine follow-up appts about diet and weight gain. The last NP appt I had (at my one year appt) said it is very common for post-transplant patients to gain weight.
Just had my transplant 2.6.23. Was on prednisone for a week. My treatment now is a monthly infusion of belatacept & daily everolimus. Going great & glad not to be on prednisone!
That’s why they call CKD (and other diseases) the “silent killers.” I didn’t get to a specialist until in Stage 4 (that’s because the Emory University-educated Internist didn’t even NOTICE the eGFR on my blood results (my knowledgeable Neph says that is very common. He said when he went to Med School, they learned the functionality of the kidneys for about 1/2 a day (so lacking in education!) and the Internist let me go 6 add’l months without letting me know I “MAY” have kidney disease (she wasn’t sure of stage). I inquired about how many stages there are. She did not know. And all these yrs living in Atlanta, I thought Emory University and Hospital were “the premium”!
My workplace has offered a weight loss program for employees. I’ve just talksd with my transplant center about it. They have said it would be fine for me to participate in that program. The program was retitled about a year ago, I think. It’s now called Wondr Health. It has an app you can access to learn more about it. With this program you eat the foods you eat regularly. About half way through you learn to rethink how much sugar and so forth you eat daily. A dietician and chef give you options. The options include using herbs rather than sodium, etc.
I participated in this program while stage V non-dialysis. It would have worked with dialysus too. It will work with post transplant recipients as long as your doctor approves. I’m going to sign up for the refresher course when it’s available. In the meantime I’ve downloaded the app. BTW the program includes info about exercising sleeping, and stress management. It’s based on eating as you do naturally and wholistic noting the effect of emotions, sleep, and exercise on our overall health as well as weight management. I share as this coukd be another option for peopleIF your doctors approve it.
My transplant info recommended straightaway to not keep crackers, cookies, chips, or any of the junk foods in your house or you will be unable to resist eating them…& in excess. Instagram has tons of vegan cooking sites that you can learn all kinds of great recipes that do not use processed sugar or saturated fats. . It may take a while but I would recommend getting completely off of processed sugar so you do not end up a diabetic. I incorporate green salads with beans, shredded carrots, and beets, and even fruit/green smoothies into my diet each day with hemp seeds, and Chia seeds for protein and extra nutrients. It gets to be real fun for me learning all the new recipes & learning to cook healthy. Quinoa, brown rice, gluten-free oats… hummus with sliced cucumber slices & sliced roasted beets, soups, & yummy salads have been my go to. Your transplant will only get more difficult as the years go by, if you cannot get your diet under control and get and keep your way down. Weight-bearing exercise is also super important… Hiking hills, playing tennis or basketball are great options. 40 minutes 3 x a week consistently. This helps to avoid eventual hip & lower back pain from the transplant medication’s. All the best to you.
Unfortunately, I need to work on my discipline first! It is a little difficult living your whole life being able to eat whatever you want and not gain weight. I am now 67 and have to change my habits. Getting old isn’t for sissies!
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