I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: BrandyChloe on January 01, 2010, 08:42:15 AM
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Hi all - Happy New Year! This is the first chance I've really felt up to posting so here is my transplant story -
As you know, my brother was able to donate one of his kidneys to me and the transplant was Tuesday. His surgery went well but took 6 hours instead of 4. My surgery took 2 hours so I was pretty quick but since I had still been creating urine while on dialysis, my surgeon decided to have a sonogram done while I was in recovery which turned out to be a good thing because the transplanted kidney wasn't working. They had to open me back up to try to determine what happened and it turned out my body had formed clots that clogged the artery so blood wasn't getting to the new kidney.
They unblocked the artery and closed me back up but the kidney was a little sleepy. My surgeon told me the kidney was already turning blue when she opened me back up but it had started to pinken back up by the time they re-closed me.
They havesince been watching me like a hawk (which I am told is normal here at Mayo). My second sonogram on Wednesday morning was much better and my creatnine has been steadily dropping. Yesterday it was at 3.8 and this morning it's at 3.3. My urine output is excellent. They said they know my kidneys wouldn't be having that much output so they know it's the new kidney working. They said I am probably 1 - 2 days behind a normal live transplant recovery schedule.
Now they are trying to determine if I have a clotting issue that we didn't know about. The doctors have no idea why this happened and it has never happened to them before so they are in uncharted waters with me. For now, they are going to keep me on blood thinners for at least 3 months unless they determine I have an issue and then it will end up being a "for life" kind if treatment.
They are pulling me off all my IVs and drips but instead of going home on Saturday, they will probably keep me until Monday or Tuesday to complete the switch from the liquid to the oral blood thinner.
I"m not in a lot of pain, which surprises me. I feel more like I've done 100 sit-ups too many. Haven't used much of my pain meds and they have taken me off the "button" and are moving me to orals but they usually make me sick so I probably won't take many of those.
My arms look like I'm a drug addict and I'm retaining about 12 pounds of fluid from all the liquid they are pumping into me but all in all I feel ok, all things considered.
Right now my biggest concern is that something will happen to this kidney and my brother will have gone through all of this for nothing. I know it wasn't my fault what happened (truly, it wasn't anyone's fault) but it sure makes me nervous. I think I will end up being extra paranoid during my recovery.
Anyway, wanted to give you an update. I'll write more later.
Effie
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Great news, Effie...
Congratulations on your new kidney!...
Great praise to your brother... :bow;
Hope it all works out for you!....
Happy New Year..
Darth...
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Hi Effie,
Thank you for the update. I appreciate your PM too.
Good thing they checked the kidney right away and were able to get it going again!
I hope each day is better and you can feel less worried. It sounds like they are taking good care of you. How is your brother doing?
Best wishes and Happy New Year to you both!
:cuddle;
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Wow how exciting - and scary at the same time. Sending positive thoughts your way.
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:pray; that you and your brother do well and improve.
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Effie,
Good to hear that things are improving! And I hope they continue on that course!
Your brother is an angel, but you already know that!
Congratulations. :cheer: :cheer:
Keep the good news coming! :bandance;
Aleta
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Congratulations on your transplant! Prayers that everything works out and you don't need the blood thinners forever.
I know it's hard, but don't think about your brother right now. Concentrate on your recovery. Now that I'm 1 year post transplant I think about my donor (sister-in-law) all the time in regards to what if something happens to the kidney and all this would have been for nothing. But in the beginning you must concentrate on you and your new kidney. He won't be thinking it's a waste if something happens. He'll be thinking how much he loved you enough to try. Everything will turn out fine! Rest and recuperate. :cuddle; And :beer1; to your brother, the Hero.
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That sounds like quite an ordeal, Effie, but you made it through. :cheer:
Best of luck with your ongoing recovery. :flower;
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WOW, I'm thankful they decided to do the sonogram to find the new kidney was plugged up. I'm sure you will do well from no on. I hope your brother has a speedy recovery. Nice guy!
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Congraats on transplant, but sorry to hear what you have gone through. Hope creat and bun get even lower when you read this.
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Hi all. Creatnine was 3.2 this morning which is down from 3.8 yesterday and I'm putting out a lot of urine so the docs are happy, all things considered. The cath is gone so I am peeing on my own and they have removed all IVs except the blood thinner. They are targeting me going home by Monday.
They said the kidney is a little sleepy from the ordeal it went through but since they know it's working and I'm not on dialysis, they are very positive all will be well. They said it will just take a little longer than anticipated but what do I have if I don't have time?
Today is my last day of prednisone and I'm so glad. I'm nervous enough as it is but the prednisone makes it worse. Mayo's policy is to only have you on the steriod for 5 days and then they take you off. I wasn't even aware of this but was so happy when I found out. The bruises on my arms are yucky and they said the prednisone makes it worse.
Thank you so much for your advice and encouragement. I know you are all right when you say my brother wouldn't see this as a waste. He's a good person and I'm so grateful for his gift. He is recovering well at home which makes me very happy. Can't wait to see him again!
TTYL
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You lucky dog, getting to come off the Prednisone so soon! I'm jealous! I'm currently at 4 mg and we're starting (again) the decline to get off the Prednisone 100%. I would have been off a long time ago, but I had this stupid lymphocele problem. I can't wait to get off of it completely.
Take care!! Keep us posted of your progress.
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Sound good. Yahoo.
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Hi Effie, congratulations on receiving a new kidney from your brother. I wish you and your brother a very speedy recovery.
Denise
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:cheer:
I was on holiday so let me just say :bandance; :cheer:
I am so glad both you and your brother are doing well. May you have a fantastic 2010!
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:yahoo; and :2thumbsup; Glad you are both doing well and I hope you both will continue to do so. Let us know. :waving;
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Gee Effie what a start for your kidney. Lucky they picked up the clot. I hope it's smooth sailing from here on for you.
Thats great to hear you're getting off the prednisone so soon.
:bestwishes; to you and your brother.
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What wonderful news!!!! Congrats, and keep on P ing!!!
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Hi all. Thanks for all the encouragement! Sorry I don't write more but it's amazing how tiring it is trying to heal.
Creatnine dropped to 2.7 four days ago but hasn't budged since. They made me come in today for a sonogram to make sure the kidney was ok. They said they didn't see anything out of the ordinary. I have a day off from traveling to Mayo tomorrow and don't have to go back until Friday morning for more blood work. Hopefully my creatnine will go down some more.
One of the anti-rejection meds is giving me gastro issues. Hopefully my body will adjust soon because this sucks. They are pushing me to eat but it's not fun when your stomach is nauseated most of the time.
I had forgotten I can now eat dairy again so I had a yogurt today and that seemed to help.
Anyway, I'll let you know how the labs look on Friday.
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Are you on CellCept? If so, did they prescribe pepcid,ranitidine (Zantac) (higher dose and quantity than on the shel) to help with te effects?
Hope your creat goes down Friday. :bandance;
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I'm happy things are going well for you and your new transplant now. Mayo sounds like they are taking good care of you. I hope your donor is doing well.
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Are you on CellCept? If so, did they prescribe pepcid,ranitidine (Zantac) (higher dose and quantity than on the shel) to help with te effects?
Hope your creat goes down Friday. :bandance;
Yep, on Cellcept, Prograf and Prilosec. Had to break down and get a pill for the nausea today. Creatnine is up to 3 but they think it's because my Cellcept dose is too high so they dropped it from 5 mg twice a day to 4 mg twice a day. My level was 10.5 and they want it to be around 7. Hopefully this will help the creatnine go down. More blood work on Monday.
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Sounds like you are talking Prograf dosage there and level. I forgot to mention the nausea med, but hope the doctors warned you about prolong use of that med.
The dosage change should work, that is a normal thing they do and it works.
Good Luck on next labs. :2thumbsup;
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I am sure they have you drinking tons of water, and that will help you avoid dehydration, which can cause toxicity of the meds. Prograf is usually the one that gives you a spike in creatinine, as I recall.
Hope it gets better!
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I drink as much water as I can but also drink hot tea (I'm so cold all the time) and cranberry juice watered down with seltzer water. My doctor did tell me it's the Prograf causing the stomach issues so hopefully lowering the dosage will make some of that crappy feeling go away. He told me it could take up to a month for the creatnine to be where they want it so I just need to learn to be patient.
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I was cold too after surgery but an electric blanket worked quite nicely.
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Sorry haven't updated in forever. The first 7 weeks were a little rough with recovery. Spent quite a bit of time traveling back and forth to Mayo for labs, sonograms, draining of fluid accumulation, removal of stent, etc.
A biopsy had been planned but the head of transplant called it off when my creatinine started going down. He didn't want to do anything to stress the kidney if it wasn't necessary.
I have been released to my nephrologist so he has my primary care now but he works closely with Mayo. From what Mayo tells me, they will never really totally release me; I am their patient for the rest of my life!
Creatinine is down to 1.9, Prograf level seems to be settling down and my labs are down to once a week. After 9 weeks, I am going back to work on Monday. As I get stronger and feel better, I'm not having the issues with being cold all the time which is good.
I'm a little nervous about going back to work because I haven't been exposed to that many people for any length of time. I am also going back to Mass tomorrow. My church has a chapel off the main altar so I'm going to sit in that section. No sign of peace or hand holding during the Our Father. I just can't not go to Mass anymore!
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BrandyChloe, it's sounding good.
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:cheer: Thanks for the update - I hope things get better every day!