I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Roxy on May 18, 2007, 06:09:56 PM
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Ok, so the transplant was last Monday the 7th. My mom and I had to be at the hospital at 5:30am. We had two separate rooms where they got our vitals and everything to get us ready. The IV nurse put the IV in my mom before they took her down around 7am. Then, my whole family got to wait with me until about 8 when they were going to take me down. My sister got to come with me to this prep area I guess you could call it. It's a big room where the anesthesiologist meets with everyone. Luckily, when he met with me he decided that (after talking to my surgeon of course) was not going to put in another central line to hook everything up to. YAY!!!!! They just used my chest catheter from dialysis for everything. I did have an IV line in my hand for medications that didn't mix well with all the stuff going through my chest cath. The only thing I remember after being wheeled into the OR is someone putting a mask over my nose and mouth and saying "breathe in". Later, I woke up in recovery with quite a few nurses surrounding me. I guess they already took my blood because they said my creatinine was 8. (I was really fuzzy still). I also had a catheter connected to my bladder so I could pee and it relieved some of the pressure on my bladder I guess. When they wheel me back to my room, I am hooked up to a machine that has my anti-rejection meds and whatever else they chose to give me. Every hour for the first 24 hours, a nurse comes in a checks on me. They either give meds, check vitals, or remove the pee from the bag connected to the catheter. What sucked was that I was a rare case where the catheter connected to my bladder, hurt like hell if anyone even moved it. Now, I can handle my fair share of pain, but it would make me scream and cry for anyone to even move it a centimeter. My mom also had a catheter connected to her bladder. Hers was removed at day 3 or 4, and mine was removed on day 5. THANK GOODNESS! I wanted it OUT! Also, my mom was pretty swollen. They used the Laparoscopic technique. So, because of this when they pumped her full of air or whatever they put in her, she stayed a little swollen for a couple days. My mom was discharged after 4 days. My days following the transplant were pretty repetitive. Instead of every hour, the nurses started coming every 2 hours, then 4, etc. Toward the end, I would only see them when it was time for medication. The first 24hrs, you are not allowed food. The second day, you can have a "clear liquid diet". Somehow lemon drops and gummie bears are on that diet, so hey I was happy. The third day you can start food. Well about the third day( it was also when they started on more pills and less meds through the lines) I noticed that when I took my pills it felt like they were not going down. Nobody wanted to listen to me. For a day and half I told every nurse and doctor that walked through my door how i felt. I got brushed off. Then by that second night, it got to the point where it felt like ANYTHING i swallowed ( even my own spit) was scraping my throat. That night, I screamed and cried at the nurse until she got an order to be able to give me pain meds through the IV. Since I was mostly on pills, she had to wait like an hour or so until someone could approve it because they were trying to keep me off the IV stuff. But, to shut me up, she gave me some benadryl to knock me out a little. I didn't care, as long as I couldn't feel it. FINALLY, the next morning the doctors decided to have an Endoscopy and look at what is in my throat. So they pretty much sent a little camera down my throat ( and yes i was knocked out). The doctor took a sample because GO FIGURE, there were lesions in my throat. The funniest thing is they did not get the results of the biopsy they took, until I had been out of the hospital. Luckily, it was nothing but a whole lot of throat irritation and acid-reflux that had given me the lesions. Regardless, it got me an extra day in the hospital because they had to put be back on IV medication instead of pills.
The day I got to walk and shower... My mom got to walk the day after the transplant and I had to wait until day 3. Either way, it felt good to get out of bed. They encouraged us to walk everyday and to walk at least three times a day. This, along with lots of fluids would help get the excess water weight off. We both had gained about 15 pounds from the saline they pumped in us. I have lost 10 of those pounds so far. I am on a non-steroid protocol. The only day they gave me prednisone was in the operating room. After that, my anti-rejection meds are cyclosporin and cellcept. We both got to shower about the third day. My mom had staples, which had been removed by then. I had begged my doctor for sutures because the idea of taking staples out freaks out me out. The sutures dissolve, so that's one less thing to worry about.
The sixth day was Mother's Day and the local TV station had contacted us to do a story about my mom giving me a gift that week. If you want to see it, go to King5.com and search in the videos for kidney transplant. I am not one for crying alot, but boy did I cry that week and on TV! I think I am still grasping the wonderful gift my mother has given me. She has given me life twice now. I think being as young as I am, I realize that most people my age take their parents for granted. Almost as if bringing a life into this world is nothing. I realized the real importance of it. When I moved away from my family I appreciated them more. Now that I have moved back I realize how important they were in who I am today. My mom is such a wonderful person, I don't know where I would be without her.....oh wait, yes i do...not alive!
As of today, we are both at home and doing well. My creatinine was at 1.5 when I left the hospital and now it is 1.8 so they told me to drink more water and come in tomorrow for more blood work to be on the safe side. I hope that story gives enough detail...if I left something out or if you have a question let me know! But it's time for my 6 O'Clock meds. Oh ya, medication! I am on about 15 medications and a total of 27 pills a day. They split my pills up between 9am, 1pm,6pm,and 9pm. I have about an hour cushion with those times to take my pills but I don't like to risk it. I'd rather just take them all on time. It's still a little difficult to swallow all of them, but I am getting there! ok, now i really do have to go take them...I will be back on later...Hope this helps!!!
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Wow! What an amazing story. So glad everything went so beautifully for the both of you. Thanks so much for sharing. Just one question...Has your mom lost her 15 lbs yet? I'm curious because I'm hoping to donate soon and I'd like to know what to expect. Thanks... and take care of your new baby! I'm gonna go watch you bask in your 15 minutes of fame!
:beer1;
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WOW, what a great story, I'm glad you two are both doing well :grouphug;
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My mom has started to lose some of her weight as well. Her first couple days home were a little uncomfortable still, but she also tries to do too much instead of resting. Her biggest issue has been having a bit of an upset stomach when she eats sometimes.
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Thank you so much for sharing! I am so happy for you!!! That is a great video, and I must say you and your mom look mah-velous!! All the best for your recovery and keep us updated! :yahoo;
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Thanks for sharing. It's great to hear about these stories. Glad you and your Mom are doing well. :thumbup;
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I just watched the footage on King 5. Cried through the whole thing. What a beautiful gift from a beautiful woman! Give your mom a hug for me, please! :grouphug;
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Yeah, I still cry everytime I watch it. I will definitely give my mom a hug for you!
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I found it, i finally found it, Thank you so much for sharing that footage Roxy :2thumbsup; Girrrrrl, you look good for just having a transplant, keep on keepin' on and yes, please do give your mom a great big hug for ALL of us ;) :grouphug;
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Thank you for the compliments about the news footage. I was not very comfortable doing it, but hey if it helps make one more person sign their darn donor card; then it's worth it.
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Thanks so much for telling your story! I loved the video too.
Here's the link to it: Seattle mom donates kidney to her daughter
http://www.king5.com/sharedcontent/VideoPlayer/showVideo.php?vidId=143528
I hope you and your mom recover quickly!
Karol
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Great story! Glad you both are doing well :thumbup;
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:cuddle; Great story so far. Wishing you both a speedy recovery. :bandance;
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The video was beautiful to watch !
Congratulations, to you and your mum !
:cuddle;
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wow what an amazing story Roxy. you and your mother look great so soon after the operation.
I'm Glad your doing so well. :cuddle;
Amanda
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I couldn't believe how good both of you look and apparently feel. This is the kind of success story we want to see more often. Good luck with your new kidney Nika. Here is a corrected link to the story.
http://www.king5.com/sharedcontent/VideoPlayer/videoPlayer.php?s=y&vidId=143528&catId=81
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Congrats and Hooray!
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Congratulations. What a loving gift from mother to daughter.
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It is great you are doing so well!
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Roxy,
What a beautiful story. I am so happy for you. :)
kelli
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Thanks everyone for all your comments. My mom is doing well and I'm doing ok. My creatinine is going up, it's at 1.9 and they want to do a biopsy this week. Any advice???
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Drink lots of water, that really makes a difference in the creatinine, as does frequent bladder emptying. They did a biopsy on Jenna at week 4 (that's was out center's standard baseline biopsy) and again at about 9 weeks as her creatinine was up slightly. They numbed her a little prior to the biopsy. The biopsy needle the surgeon used was really thin (it's in a gun type thing that is in and out almost simultaneously). The first time was easy, second time she had some bleeding, but it turned out fine. They had her lie flat for 2 hours afterward. I hope it goes ok for you. I would let them do one for checking for rejection, but Jenna and my husband and I agree that we won't do any more of the protocol biopsies. What immunosuppressants are you on? Are they using steroids at all? So glad to hear your mom is doing well too!
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Okarol, thanks for the info! I am on a non-steroid protocol, so I am on Cyclosporin (Gengraf) and Cellcept. I am really skeptical about the biopsy because of a few reasons. 1) They first told me they would do an ultrasound because it could be the stent they put inside me causing pressure on my kidney. 2) I know I need to drink more fluid. After being restricted for a while, it takes some time to drink what they want me to without feeling sick. 3) It's not like it is consistently only going up, it is fluctuating between up and down. 4) I am wondering if the lowest creatinine that I had at the hospital was inaccurate because of all the saline that was in my system, so of course it was going to be way lower..i had pounds of saline in me. 5) They already know they are not giving me enough immunosuppressant medication because my blood work shows it. And if I'm correct all they do if they find a problem in the biopsy is increase the meds. However, if they already know that the meds need to be increased, why do the biopsy? 6) Everything else in my labs are fine and getting better, except the BUN goes up as the creatinine goes up because they kinda go hand in hand but that also just shows that I need more fluid. 7) My mom's kidney is small, but since I also have a small frame they figure it's going to be fine. My surgeon thinks that since the kidney is small, that my baseline creatinine might just be a little bit higher. I am just getting frustrated because I feel like they have such a knee-jerk reaction and they are so quick to jump the gun on something without doing further tests. I would rather be in there everyday doing bloodwork and doing an ultrasound first than jump to a biopsy. I don't know it just seems like I have more reasons not to do one than they can give me for doing one.
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:yahoo; and good luck!!!!!
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I know how you feel. We were very reluctant to get the biopsy. Luckily our surgeon is very practical. He made adjustments to the meds and did labs 3 times a week to see how the Prograf and Cellcept were doing. He said if he changes the meds and there's no decrease, then he'd do the biopsy. It's been a little over 4 months and her creatinine fluctuates between .9 and 1.2. I forgot to mention that they removed Jenna's stent at 3 months. Two days before they did the second biopsy they did an ultrasound to be sure there was no blockage or scarring that would restrict the flow from the ureter to the bladder. They told us the reason they wanted to do a biopsy so early, even though her creatinine was only 1.2 - is because they can do a lot to jump on early rejection using IVIG, and it can make a huge difference.
I am not a doctor, so what I say is only my opinion, but you seem like you are very knowledgeable and really have a good grasp of the situation. If I were you I would discuss the risks and benefits of the biopsy. I would ask about waiting a week while really making a huge effort to drink 3 or 4 liters of water everyday, with lots of urinating, to see if it makes a change. It's only been two weeks since the transplant? They really need to tune in your meds - as I said - it's just my opinion - but a biopsy seems to be premature at this point. If they try making too many changes at once, how will they know what worked?
If your mom's kidney was small then the growth it will make over the next year is going to make a difference too.
Good luck - and start guzzling the water! We marked numbers on 4 bottles a day for Jenna so she can see how much she drinks. It was hard for her to take in so much liquid!
Take care! {{{HUG}}}
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Thank you! You just made me feel a whole lot better. I'm a fairly logical person and I will do the biopsy if I think the benefits outweigh the risks. However, at this point I just do not believe that they do. I want to wait at least this week, because yes it has only been two weeks post transplant. I will definitely be chugging water. The one day I made 100% sure to drink more than 2500cc of fluid my creatinine went down. That's another reason that I think the fluid is the only issue. Thank you sooooooooo much for sharing Jenna's experience. It gave me peice of mind that I am being as logical as I think I am about the whole thing.
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So here is a quick update. I moved back to California a couple months ago since things were going well and the doctors said I'm good to go. I am 5mths post transplant and my creatinine has been steady between 1.6 and 2.0 . They expected this since my mom's kidney was really small . The doctors figured that in about a year the creatinine should go down. But it went down this week!!!! My creatinine is finally down to 1.2! :bandance; I know it might go back up again, but I'm just soooo excited, because the idea of it staying around 1.7 was bothering me even though they completely expected it. Besides that, I'm going back to work next week and feeling great. We are still adjusting my medications every week, but it looks like it is starting to stabilize. :yahoo;
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I would take that as a very good sign! :2thumbsup;
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Some lucky patients are able to leave the hospital with a kidney transplant that gives them a creatinine value in the normal range, between .7 and 1.2, but many do not. Since the lifespan of the kidney is a function of the creatinine value at the beginning, given that the creatinine level tends to creep up from the baseline each year until finally it is in the dialysis range again, you have a better prognosis with a lower starting value. One curious fact that has been recently discovered is that the baseline creatinine level of the new kidney tends to be determined by the creatinine level during dialysis, which raises the interesting question of how the new kidney 'knows' what your pre-transplant level was! While rejection is a well-known and usually easily treated cause of decline of function in a transplanted kidney, most kidneys today are lost to gradual decline, known as 'chronic allograft nephropathy,' and no one knows what causes this or how to treat it.
When there are high creatinine levels right after the transplant and these are starting to rise, a biopsy is indicated to rule out acute rejection or surgical error as a cause of the problem. Biopsies themselves do some damage to the kidney, but they are performed when the diagnostic value of the procedure outweighs the slight damage they do to the organ.
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Stauffenberg, the transplant team expects my function to get better within the first year as it has this week. There was much debate upon whether we were going to use my mom's kidney or not since it was a very small kidney. However, since both my mother and I are petite women, it was agreed to use it. Therefore, they expected higher creatinine levels when I came out of the transplant. Then are expecting the creatinine levels to lower. We never did a biopsy for this exact reason. That was debated as well, however since my transplant surgeon knew what the "expected" range for my creatinine was going to be ( between 1.6 - 2.0 ) and it has stayed that way, there has never been a need for a biopsy. As long as my creatinine stays below 2.0 they are leaving well enough alone.
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So here is a quick update. I moved back to California a couple months ago since things were going well and the doctors said I'm good to go. I am 5mths post transplant and my creatinine has been steady between 1.6 and 2.0 . They expected this since my mom's kidney was really small . The doctors figured that in about a year the creatinine should go down. But it went down this week!!!! My creatinine is finally down to 1.2! :bandance; I know it might go back up again, but I'm just soooo excited, because the idea of it staying around 1.7 was bothering me even though they completely expected it. Besides that, I'm going back to work next week and feeling great. We are still adjusting my medications every week, but it looks like it is starting to stabilize. :yahoo;
Congratulations Roxy. It must be a major relief to be down in the good zone. I would be concerned if I was at 1.6 or higher but even with those numbers the transplant beats dialysis hands down. Best of luck to you and I hope those numbers fall even further.
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Congratulations Roxy :grouphug; :cuddle; :clap; :cuddle; :grouphug;