How does your new kidney feel.

[keefer51]

The first year of my new kidney was kind of funny. I mean here is this new kidney barely a year old and functioning great. Pardon this but i was enjoying seeing my pee! I noticed more though, the incision was numb for a long time when i touched it it felt funny like it was dead skin. but the best part was when i slept. I remember the first time i actually slept on my kidney. I turned over real slow waiting to feel a sharp pain or worse. But what i felt made me laugh. It felt like a sock or dryer sheet was under the bed sheet. I started putting my legs in a figure four which kind of brought my pelvis up. My left butt cheek was up in the air but the exwife was never in the mood so she didn't care. My left thigh was numb for about a year but slowly came back to normal. I took things slow. I was able to learn to ride horses again. Everynight i went to sleep i always said to my self "Thanks Greg".

[tweetykiss]

I am so glad you had a transplant and I am sorry it didn't last forever.......I can tell it was a great experience for you having a new kidney and not going to the center and sit for hours........I am sorry you are back at the center now...I pray you get another transplant...are you on the list yet?  If not, please do so......do you have any relatives who share the same blood type?  I would look further into it......now wouldn't your wife be overjoyed you had a new kidney?

[keefer51]

Tweetykiss, Yes i am on the list at the same hospital i had my last transplant. I have three brothers and two sisters only my brother came forward to give me his kidney. My other siblings have not. I don't ask any of them to donate. We are a family where illness is talked about the first time it is brought up. After that it isn't really talked about again. I know that they don't want to which is OK with me. I have been on the list now almost two years. I thought this thread would get a few stories i hope people like it and respond.

[bluedove57]

Hey Keefer51, I'm going for my first transplant on Sept 4th coming up real soon. I am nervous yet excited. My family didn't come forward either and I wasn't going to ask. My mom talked to them and my 2 brothers are matches in blood type but won't go get checked. My oldest daughter is my blood type and went to get checked but no match. Last fall my neighbor approached me and wanted to get tested. We got the news 2 weeks ago she is a perfect match and the transplant will go through. I believe God has His hand in this. I've been on the list for 6 years now and it's a donor I'm getting it from. I am highly sensitized because I had children. What are the odd of someone coming to you and they are a perfect match. I thank God every day for her and I believe it will be a success. I hope you get that chance again for a transplant. I can't imagine how you must feel losing your new kidney. You will be in my prayers as all other IHD patients are. Take care and God bless. I will keep everyone posted on my condition when it happens. 10 weeks to go.

[Falkenbach]

I loved your story about sleeping on the kidney for the first time, Keefer.

I'm approaching week 4 now, and I haven't really rolled onto it, yet. I did try to roll onto my stomach one day a week or two ago, but didn't really come in contact with the bed. It didn't feel right, I was nervous. But hey, I still have two sides and my back to sleep on, so I comfortably swap between those all night long! It was when I was in hospital stuck on my back only that it was driving me crazy.

My new kidney still feels painful, not in a huge way, just a bit of an ache that doesn't seem to go away very often. I have mentioned this a few times at clinic, and the doctors don't seem concerned, so it must be normal. It's beginning to frustrate me a little, but it's early days and I'm still so happy just to have the kidney that I can't see myself doing too much complaining about that. I haven't been on painkillers, other than panadol, since the first week. I couldn't tolerate the strong painkillers they were giving me in hospital, once I was disconnected from the push-button pain control after the first couple of days (that worked well whilst it was there) they were giving me Oxycodone, and I found it messed with both my head and my stomach! So I stopped taking it.

I was also surprised to see the kidney kind of sticking out front like that, I don't know why but I didn't expect that. It didn't occur to me that I would no longer have a nice, flat tummy. When I realised, as a young woman, I thought "oh I won't be able to wear some of my nice fitted pants anymore, including those brand new pairs I just bought and have never worn......" but I kind of giggled at the thought. Because it's a small price to pay. So I have this little pot belly now that I didn't have before, also because of all the FLUID I'm drinking making me a bit bloated. I'm sure that will settle with time.

I enjoy showing off my scar to anyone that wants to see it, too!

[Falkenbach]

Can I ask a question on this topic, actually.

I'm still finding the transplant site reasonably sore. The doctors don't seem to be concerned, as I have mentioned it at clinic a few times. It is coming up to the 4 week mark.

I know 4 weeks isn't long after major surgery, so it's probably normal. But it is beginning to frustrate me a little - not that I'm complaining, because I'm so glad to have the kidney in the first place. Anyway I thought I had already posted this question here, but it must have been on a different forum because I can't find it.

Anyone want to share their experiences?

Also Keefer, how long did your transplant last? I hadn't realised you lost your transplant, and am sorry to hear that.

[tweetykiss]

I never knew there is pain after a transplant cycobully......it is good to educate us on this and have us prepared....now did you have a living donor or cadaver or family member?

I also never knew there is weight gain after a transplant........I wouldn't worry about it unless the docs say you need to lose.....how are you doing on your new meds?

good luck......

[Falkenbach]

Hi Tweety

It's not bad pain, it's just kind of - there! Getting a bit annoying. It's kind of an aching, not a sharp or unbearable pain. I could probably take Panadol a lot more often than I do and that might help. I had a living donor (my dad).

Not everyone gains weight after transplant - usually there is an initial gain of about 5 (or up to 10) kilograms due to fluid, but that generally settles. Some people will then still put on weight, or retain the extra weight, due to the medications. I put on 10kg in the hospital, but most of it came back off, and I am now only about 2 kilograms heavier than I was pre-transplant. So, even though I have the pot belly, I don't really have any significant extra weight. I was a thing person before and still am.

The meds are okay, though they took their toll on me in the first week or two. I have hand tremors from the Cyclosporin, but that's no big deal. The prednisolone made me grow a black moustache  but I fixed that quick smart with waxing. The prednisolone also makes you extremely hungry, so you have to watch what you eat because you can put on weight very easily on this drug. I'm finding I'm craving a lot of sweet stuff - ice cream and such - that never interested me before. I'm feeding my face on chocolate chip cookies and so on, lol.

[keefer51]

My kidney lasted a little over 10 years. It may have lasted longer if i was able to get the insurance i needed. I lost the insurance around a year after my transplant. I was taking cyclosporin and prednosone. It was too expensive to bye out of pocket. So i went 4 years with out my meds. When i finally was able to get them again my kidney wasn't doing very well. But it did get better in time. When i first had my transplant the coordinator told me that i would feel funny about it. I would be afraid to touch it or sleep on it. She said try not to feel that way. That the kidney wasn't going to get hurt. I had discomfort for about the first year really. I started out sleeping on it a little at a time. I would put my hand on it and feel the blood rush through it too. I did a little bit at a time with everything about the kidney. Your scar may be numb for a long time. When i would sit in the sun in the summer i would hide the scar from getting sun burned. With a operation like a transplant it takes awhile to get over it. I know you will be frustrated but before you know it you will used to it. The bulge goes down. You will eat allot and may put on some unwanted weight. But don't fret it goes down. Your body is getting used to food you haven't been aloud to eat. Give yourself a good year and everything should get back to normal. I know the ache feeling you feel with your kidney that too will pass. As strange as this sounds i really enjoyed just touching it and feeling the rush. Don't worry about the pain you feel now it will go away it just takes time. You may also feel a numbness in the leg the transplant is on. That will last awhile but also goes away. Good luck and if i can help in any way just ask.

[Falkenbach]

Thanks for the info Keefer, much appreciated. It is so terrible some of the things that happen to those of us in wealthy countries - we shouldn't be suffering on the health front due to lack of insurance and the like, not in the US, UK, Australia and placed like that! Medications should be totally affordable, heaven knows we pay enough taxes!

If Australia ever does away with its PBS scheme (the government subsidises most major medicines) I will be in serious trouble.

[keefer51]

I hope they don't either. I know you will enjoy your new kidney. All the little problems that you may have will go away soon enough. There are always strange kind of pains at first but before long you will not have them anymore. Once you position your body in a comfortable position you will be able to sleep better. Good luck with everything. Keith.

[Falkenbach]

Aww thank you, you're so sweet. 

[BigSky]

My kidney lasted a little over 10 years. It may have lasted longer if i was able to get the insurance i needed. I lost the insurance around a year after my transplant. I was taking cyclosporin and prednosone. It was too expensive to bye out of pocket. So i went 4 years with out my meds. When i finally was able to get them again my kidney wasn't doing very well.

This is OT but something people should know is medicare pays for transplant drugs for 3 years post transplant, also if one cannot afford their medication the drug companies actually have programs where depending on income, you can get free transplant medication or reduced cost transplant medication.


Anyhow this is one area patients need to push more on their Congressmen to enact that transplant patients can get transplant drugs covered for the entire transplant through medicare.

[BigSky]

Can I ask a question on this topic, actually.

I'm still finding the transplant site reasonably sore. The doctors don't seem to be concerned, as I have mentioned it at clinic a few times. It is coming up to the 4 week mark.

Each person is different. 

Personally I never had any pain really with the site.

Your comment about the pot belly is funny.     After my transplant I was the same way despite actually losing some weight after the tx.

[Falkenbach]

Yeah, I've been giggling at my own pot belly. I don't know if it will ever go away, or if I'm stuck with it for good now! I can't tell how much of it is the kidney sticking out (the kidney side definitely sticks out further  ) and how much of it is just re-distributed fat rolls.

As I said, I was and am a thin person, but there was a layer of fat there which just seems to have been pushed up a bit during surgery, and now sticks out over the top of my jeans looking funny. I kind of have to buy a whole new wardrobe, because all my shirts are fitted and they look funny now.

[livecam]

I have a working transplant and am approaching the 6 year mark with it. 

The surgical area was a bit tender right after the transplant but that tenderness went away pretty fast as the area healed.  In the first year or two I was able to feel the area a bit while walking or lifting objects but it wasn't really a painful thing.

Much of the tenderness and sensation in that area is usually caused by internal adhesions which are a pretty normal part of surgery and not a problem with the kidney itself.

At this point there is no pain or tenderness in that area at all.  The sensation of touch and temperature are completely normal like they were before the surgery.  The scar itself is fairly small and barely visible even when I'm intentionally trying to find it.

I've really had no problems at all in that area.  Other than making sure I don't get kicked or banged there I don't give it much thought.