Frustrated by Kidney Transplant Evaluation - Kidney Disease

Kidney Disease

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Frustrated by Kidney Transplant Evaluation

vriggin24 profile image

My kidneys holding steady at stage 4 and renal function a little better. Getting AV fistula in my left upper arm next Monday. Started eval in November. US showed a suspicious mass in right kidney so just had an MRI last week and is a suspicious solid mass that could be renal cell carcinoma. Waiting to hear from Coordinator about seeing a urologist and then more testing I presume. I can't lose weight and am gaining although can't take the furosemide like they suggested, had a couple of accidents. Right now my BMI is getting close to the cut off for a Transplant anyway. I exercise almost every day. I got weights to use for my arms and two different elliptical machines, plus a treadmill, and an aerodynamic standing bike. I try to watch what I eat and am not usually hungry until night, when I would have been smoking while watching TV, but now sometimes eat, try to do fruits and low sodium stuff though. I guess part of my weight gain is metabolism changes from stopping the smoking in April and some fluid, and some just postmenopausal. My husband is on blood pressure pills and doesn't feel like having sex and partially doesn't find me attractive anymore but loves me and will be with me until the end. I don't really care about sex either but my husband is only 46 and I am 55. I came out and asked him if we weren't having sex because of my weight gain and he admitted that was part of it and the blood pressure pills and working so much was another part of it. I guess I should be happy he was honest with me. I am seeing a therapist every three weeks but damn, when will I get good news for a change? Sorry to run on so much but ranting helps!

12 Replies

Hello there vriggin24. I’m sorry to hear that you’re in so much distress. No need to apologize about ranting. I’ve certainly done my share of ranting, believe me. I’m not known for doing well during my low points either. My poor siblings have the lengthy texts from me on their phones to prove it! Lol!

I can relate to your story somewhat. I’m with you completely regarding the post menopausal fun. Much like yourself, I too have difficulty losing weight. I suppose all I can really do to offer you some sort of help is suggest a few diet and exercise ideas. But first, I just want to ask you, does your doctor know for sure that these other issues with the cysts on your kidney is not contributing to your current weight issues? If there are no other problems getting in your way with regard to weight loss, then hopefully, the tips I share with you may help.

Not sure if you are diabetic or have any other diet dependent health issues but, myself, being diabetic with gout, and CKD, I’m pretty restricted variety wise. The rules I try to follow which I have found to be successful (when I stick to them, that is), are:

1) Start your morning with some kidney-friendly fruit (apple, berries and such), accompanied by a plain egg white omelet or some other low phosphorus form of protein.

2) Eat mainly protein throughout the day (3 meals a day), steering clear of any breads, potato, rice and pasta (these type of carbs cause your body to require it’s insulin, and insulin creates bloating and fluid retention.) Also, include foods that have a natural diuretic effect like celery, lemon or lemon juice (in a salad perhaps), parsley, these will be helpful. Research online for other foods that have diuretic properties. They do help with urine output.

3) Exercise as much as an hour and a half or so each day. It does not have to be all at one time. Walking, is good as it utilizes your biggest muscles (thighs) which gives you good cardio, getting your heart pumping helps with fluid retention also. Regarding the weights you mentioned, be careful with weight lifting as I hear it can cause creatinine levels to go up. Ask your doctor about that before trying that type of exercise.

4) This will probably be the hardest one of all, try not to eat anything after 5 or 6 pm. I think (with myself anyway) going hungry helps to detoxify the system a little. Perhaps by giving our kidneys a chance to “catch up”. Lol!

5) Try to get proper rest. Sleep is very important for so many things regarding metabolism.

I have always found these points to be successful (again, only when I stick to them.) Also, if you’re taking furosemide (I do too), remember to drink a sufficient amount of water as it may not work properly if you don’t. Speak to your doctor about what the right amount is for you. With regard to the “accidents”, I hear ya! I’ve had to resort to wearing incontinence garments. Doesn’t do a whole lot for our pride, but it beats having to purchase new underpants every other day! Lol!

I wish I knew as much about marriage counselling as I do about dieting. I’m sorry I can’t offer you anything there except to advise that keeping the lines of communication open with your husband, which it sounds as though you already have an honest relationship already, is one of the most important elements in maintaining a healthy marriage. Perhaps some counselling sessions may be helpful. This is something that your PCP can also help you with.

I’ll keep you in my thoughts and prayers. Please take care and keep us posted on your progress. I apologize to you for such a lengthy post. All my best to you, dear. God bless. 🙂🙏

Thank you. I am waiting to see an Urologist and will ask him about he weight issues.

Hello. I'm still learning about kidney disease so I really can't give you advice but I do have some questions. Is it possible that you're not losing weight because of the kidney disease? Normally a cancer would cause you to lose weight. That's because s cancer takes an excessive amount of energy to multiply and grow. It's kind of like a parasite that feeds on you to help itself while not caring if you have enough energy. That's why weight loss is often the first thing people notice before they know they have cancer.

I'm kind of surprised you're on the htz (Hydroclorathiozide). It's one of the meds they took me off first. Have you asked you dr what he thinks is causing the weight gain? Are your feet and legs swollen? I'm wondering if your weight gain is due to the kidney disease. Since they aren't functioning well you're not pulling the fluid out of your body. Think of your questions and write them down. My mind goes blank as soon as the doctor walks into the room. Hang in there and stay in touch. I'll be thinking of you and sending you strength.

vriggin24 profile image
vriggin24 in reply to Sassysmom

I am on Lasix(Furosemide), but can only tolerate 20 mg twice a day. Saw my nephrologist Tuesday and he said my legs were swelling but it was in the morning and I hadn't been on my feet a while yet. I may do a liquid fast and see if I can lose some weight.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hu Vriggin,

I spent the day thinking about this post. I am only giving you my opinion, so factor that in with what I am saying. The fact that your husband even commented on his lack of desire for you because of your weight is the most shallow thing he could have said to you. Put it on him, not on you. If your shape totally defines why he is attracted to you, well that's HIS problem, not yours. Please, stop letting his fat shaming get to you. I am sure in the years he has changed too.

Second, you said your stage 4 was steady and in some cases improved. Make sure you don't rush into dialysis or let anyone push you into it. There are many of us who are doing quite well at stage four.

And lastly, there are places that will do a transplant for people with higher BMIs. Don't give up hope on that. Ask your doctor if the hospital they are connected with will put you on the list NOW. You are very young and a transplant might be the best direction once they figure out what is going on with the mass.

Last but not least, fat shamming by anyone is not acceptable, whether it is a doctor or family member. You are perseverating on your weight and not your over all well being. I highly recommend you look in to this web site. Our bodies do not define who we are. Remember that. You have a lot going on with everything. Be strong. Do what you can, which sounds like what you are doing, and stop punishing yourself.

We are here for you.

Thank you. I am lazy and my husband doesn't want me to just sit in the recliner and give up. He encourages me to be more active and is proud of me for now exercising some daily and for having the strength to give up smoking. I asked him about my body, he didn't just come out and say it. I like that he is honest with me as I have to be honest with myself. As far as dialysis is concerned, this site helped me to learn that I could be at Stage IV for years without having to get dialysis but I am getting the fistula in my arm which takes months to heal and will be ready when and if I ever get dialysis.

Mr_Kidney profile image
Mr_Kidney in reply to vriggin24

I don't want to get too deep in the weeds here but let me say that sex shouldn't be the end of intimacy. Holding your partner, a caress, a kiss and often just a touch with a kind word can be enough. At least it should be.

What would things be like if the positions were reversed?

Hang in there!

vriggin24 profile image
vriggin24 in reply to Mr_Kidney

Yes intimacy is enough without the sex. Having a partner you can talk to about anything and feel safe with, and loved by is a lucky thing to have. Thank you for your reponse Mr_Kidney.

Hello again vriggin24. Just want to say that I think I somewhat understand that your husband may have been trying what is called, “tough love” in sparking some motivation in you. But believe me, as someone who has lived with body related criticism basically her whole life long, that method of creating incentive in a person who is already feeling down on herself, can actually have the opposite effect. It didn’t work for me, certainly.

I’m glad to hear that you’re exercising. I would reconsider the liquid fast, though. Again, I have plenty of experience in this area, and trust me, they don’t work. It can cause bingeing, it can cause your metabolism to slow down and hold on to the weight you have, it can throw your body off kilter which then causes your organs to suffer even further.

A sensible diet is what will work best. Ask your doctor to refer you to a dietician. Being familiar with your renal issues, they can draw up a plan that will work for you. All my best to you. God bless. 😊👍

I will, thank you.

Yay, Bassetmommer!!! I tried to push the like icon twice for your post but it kept unliking so I could only press it once. I would’ve pressed it 1000 times if it would allow. You said it! Fat shaming is completely despicable and unacceptable. Take it from someone who definitely knows! God bless. 😊👍👍

Hi every one im Dave was on dialyses for 8 yrs was blessed 22 months ago with transplant 🙏 i didnt know much about kidney health when all this started 10 yrs ago i educated my self as i went and had to deal with the emotional aspects as well alone. it was Really hard .i kept trying to improve my self every day especially with diet im am so grateful i felt the need to give back to the kidney community so i became a mentor and opened a support group on face book its called kidney advocate 2019 while i was going through all this i didnt know what social media was ? Now that ive found it i find it an amazing form of support to be Abel to talk to others with same or similar issues is so much help🙏 So None of us are alone we can beat this terrible Disease 💪🙏😛

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