I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: rookiegirl on March 19, 2009, 09:59:07 PM
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I'm currently in my hospital room. Been here since 2:30pm. They took lots and lots of blood. Finally, received news from the doctor at 12:00am that I'm compatible and I'm schedule for transplant surgery at 8:00am.
I'm so scared but I'm keeping positive.
~Rookiegirl
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OMG! That's incredible - please keep us posted - wishing you all the best in the world rookiegirl!
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:cheer: :cheer: :cheer:
Oh please let everything go smooth!!
:bestwishes;
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Thats fantastic :yahoo; Good luck x
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WOOHOO!! Another IHD transplant!!! Awesome news!! Wishing the best for the surgery!!! You go girl!!!
:grouphug; :grouphug; :grouphug; :grouphug;
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Great news!! Godspeed to you, praying all goes well :thumbup;
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Sending lots of love,prayers and positive thoughts. :cuddle;
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Great, I hope all goes well, all the best Yvonne :flower;
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:cheer: Wow that was quick!
I hope everything goes well. :cuddle;
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Great news! I hope everything goes smoothly! :clap;
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:bandance; :bandance; Congratulations! :beer1;
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:yahoo; Great news. I hope all goes well. :cuddle;
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Terrific news!!!!
May it all go smoothly for ya, with
a quick recovery! :2thumbsup;
Anne
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:yahoo; Rookiegirl. Thoughts and prayers are with you. Please let us know when you can and take care. :cuddle;
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So excited and happy for you!
Please keep us updated! :yahoo;
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Rookiegirl, I'm there with you in spirit and cheering you on all the way. Of course your room is pretty crowded with all of us IHDers who are also there with you.
Stay positive and I'm excited for you. :flower; :cuddle; :flower;
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You are in my thoughts and prayers , Congratulations.
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I am so excited! Our girl has a new kidney!! What a good day today is. Lots of prayers for you and for the family who gave this marvelous gift to you. We are all here for you. Love you!! :cuddle; :cheer:
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Great for you! Quick recovery! :grouphug; :grouphug;
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It was the cruise, girl!!!!!
Cruising must be key to getting a kidney! :rofl; :clap;
Take deep breaths and get comfortable. It will all be over before you know it and you'll be on your way to a quick recovery!
CONGRATULATIONS! :cheer:
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Congratulations Rookie!!!!... :yahoo;
May I wish you God's speed and a very quick recovery.... :bestwishes;
May God bless and protect you...
I'll be thinking of and praying for you...
Love... :grouphug;
Darth....
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Great news. Hope it all goes well and that you have a speedy recovery. I'll be thinking of you.
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Oh Lord...I just got home from D and see this great news. My prayers are with you and your family.
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cruise huh??? OK which IHD lady would like to come on a cruise with me???? I won't INSIST that you bring a small bikini....
:rofl;
Meantime hopking rookiegirl's transplant is working and she's working on that pee picture for us right now!!! :) :) :)
:bow; :bow; :bow;
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Wonderful news! Hope all goes well and the new kidney starts working immediately!!! :cheer:
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:bandance; :bandance; :bandance; Good luck xoxoxo
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:yahoo; Great News!!! :yahoo;
Congratulations!!! :beer1; I am looking forward to reading your transplant story. Happy birthday new kidney! :bandance;
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I hope all goes well! :yahoo;
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Waiting for news. We are all praying for you Rookiegirl!
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I'm waiting with Paris... :waiting;
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me too.... waiting... :waiting;
Rookiegirl :waving;
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Fantastic news. I wish you all the best.
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Rookiegirl, we are all waiting to hear some news from you. Keeping you in thoughts and prayers. :cuddle;
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Late again i am.
Praying all is well with you Rookiegirl.
:bestwishes; :cuddle;
P&K
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Hoping to hear soon rookiegirl - I pray you're doing fine!
:grouphug; :grouphug; :grouphug;
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Hope you are peeing up a storm! Best wishes!
:flower;
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We are sending you love and healing wishes and surrounding you with lots of hugs :grouphug;
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Just saw this post tonight. I hope everything went well rookiegirl and you are doing the pee :bandance;
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I just love you all so much. Thank you for all the wonderful thoughts and prayers. I really need them so.
I'm not feeling too well these days as this is understandable since my kidney transplant last Friday. I went through surgery with no complications. Woke up in ICU very much in pain, tired and out of mind. I stayed in ICU overnight before they rolled me to a private room. The good news is that I'm producing lots and lots of urine. But unfortunately, I came out of surgery with higher creatinine of 8.0 from 7.0 The doctors said it sometimes takes the kidney a little time to kick into gear and start to work. They pumped me with all kinds of IV fluids with anti-rejection meds galore. Taking so many meds makes me sick to my stomach so they have to give me nausea meds in order for me to take more meds. I really hope I can get use to it because I know I need them if I want to sustain my life. They placed the kidney to the right bottom side of my abdomen. I can't believe how big the incision was. The area is so tender and just exposed. Nothing covering it but staples. I did have a drain tube on the side which they removed before they released me from the hospital on Wednesday. I was so happy to go home to get some sleep and really rest. Hospital just don't let you sleep at all. They always want to poke you every hour on the hour. I know this is necessary.
Today,(Friday 3/27/09) I had to return to day hospital at 8am-6pm. They did another IV anti-rejection treatment. I did receive good news today that my creatinine went down from 8.0 to 5.8. This is a good sign the kidney is working. Thank you Jesus! I was so excited to hear the news I couldn't help but cry. The pain was starting to get to me and wonder if this was all worth it. I have another follow appointment next Monday to check my numbers again. If my creatinine continues to decline, they may go ahead and schedule to remove my Tenchoff catheter (PD).
There are many appointments, meds, follow-ups, pain to come. But, I hope and pray all goes well and that God continues to look over me and my family.
Again, thank you for all your wonderful wishes, prayers and thoughts. Until my next update.
~Rookiegirl
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That is good news rookiegirl. I hope the pain gets better for you, and that kidney keeeps working.And I think all the pain is worth it,lsoon you will be enjoy a new life. God Bless you and we pray for a speedy recovery.
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WoW! I am so happy for you! I just saw this thread - I hope you start feeling a lot better, real soon!
:flower; :cheer: :cheer: :flower; :bandance;
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:waving; Rookiegirl I am so happy to hear you are home! I kept wondering if you were ok. Thank God you're doing better - sounds like things will stableize over the next few weeks.
The meds make a lot of people queasy - they gave Jenna something and she still is taking it (Prilosec) but hasn't had any problems.
How often will you get the IVIG?
Best wishes and HUGS - take care and catch up on your sleep!
:cuddle; :cuddle;
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Yea Rookiegirl! I'm so glad to hear you're home and that your creatinine is slowly, but surely, coming down. Once the pain starts to go away (and it will), you will regret that statement about wondering if it was all worth it! It is so worth it in my opinion. I had no problems with the meds. I do, however, take Pepcid, but don't know if that is what is keeping me from having problems. ???
Anyway, my kidney is on the left side and yes the incision is large. But my surgeon did a fabulous job and it looks great. Although, I can only see it in the mirror as my stomach is still big! I'll reiterate how much I hate Prednisone!!!
So happy for you!!! Keep us posted on your recovery! Lots of love to you!!! :clap;
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:cuddle; It will be soooo worth it Rookiegirl. I hope you continue to feel better and stronger each day. :grouphug;
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rookiegirl :cuddle; Take time to rest and heal. You will have lots of appointments and lab work. Don't forget your mask and wash your hands often. The pain will go away. Please take care and drink, drink, drink. :grouphug;
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WOW! Congratulations! :bestwishes; :cheer: :bandance; :yahoo;
I can't believe that I am just seeing this thread. RG, I am so, so, so happy for you.
Take it easy and let everything heal and then you are going to feel terrific.
This is the greatest news.
:flower;
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I'm glad you are home and on your way to feeling great, good to hear the gold is flowing. Take care, enjoy your rest and your family. :cheer: :cheer: :bandance;
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I'm so glad you're finally home RG and the pain will get less and less as your incision heals. Don't hesitate though to take the pain meds if you need to. Also great to hear that your kidney is starting to pull down the creatinine level as that means it's starting to do it's job.
I've been wondering how you were getting along and I was thrilled to read your post. Hang tough Rookiegirl.
:yahoo; :flower; :yahoo;
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I am so thrilled for you rookiegirl. I know the first 2 weeks are hard. Don't worry... its normal. You are just getting adjusted to the meds. It WILL get better!!!! Keep positive girl!!! :flower;
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Just found this thread and am so happy for you! I send you best wishes for your recovery and congrats on your new kidney!!! :cuddle;
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I am glad to hear that your creatinine is down. GO NEW KIDNEY!!! You'll feel better soon. Yeah! No more dialysis!!! :clap;
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:waving; Rookiegirl I am so happy to hear you are home! I kept wondering if you were ok. Thank God you're doing better - sounds like things will stableize over the next few weeks.
The meds make a lot of people queasy - they gave Jenna something and she still is taking it (Prilosec) but hasn't had any problems.
How often will you get the IVIG?
Best wishes and HUGS - take care and catch up on your sleep!
:cuddle; :cuddle;
Hi Okarol. Thank you for the PM.
I'm also taking Prilosec (purple looking capsule). It's been really hard trying to get the meds down, but I take my time. Normally takes me between 30-45 minutes. I'm not sure how often I will get the IVIG. I had my first dose last Friday and I have another appointment Monday. I guess all is still new to me and don't know what questions to ask. They keep throwing these words at me which makes no sense. Even if I ask, I can't seem to remember anything. It's like my mind isn't focus yet. Hopefully, once I start to feel like myself, I will be more alert and well educated.
I do remember the day they called me. The transplant coordinator told me my PRA was 81%. I guess PRA has something to do with antibodies? Words like BUN, what is that?
Last night I didn't sleep. I tried and I just couldn't sleep. Could it be the Prednisone? If so, I take 4 pills in the morning. Should I tell my doctor if I can take my Ambien that was previously prescribed?
Sorry for all the questions. I sure can use some advice on the hereafters of transplant.
Thanks,
RG
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rookiegirl :cuddle; Take time to rest and heal. You will have lots of appointments and lab work. Don't forget your mask and wash your hands often. The pain will go away. Please take care and drink, drink, drink. :grouphug;
Should I always wear mask when I'm out and about? Especially, going to my appointments? I asked this question while I was in the hospital and the nurse told me it wasn't necessary. I don't understand why it's not necessary when my immune system is being severely suppressed.
I wash my hands so much they are drying out.
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I guess all is still new to me and don't know what questions to ask. They keep throwing these words at me which makes no sense. Even if I ask, I can't seem to remember anything.
We had a notebook and I wrote everything down, because we couldn't remember much by the time we got home. It's would be easier for you if someone could go with you and takes the notes. Can your husband do that?
Words like BUN, what is that?
The labtestsonline.com site is really helpful for explaining the tests. Just type "labtestsonline.com" and whatever test you want to know more about into the google search bar and the right page should come up.
Last night I didn't sleep. I tried and I just couldn't sleep. Could it be the Prednisone? If so, I take 4 pills in the morning. Should I tell my doctor if I can take my Ambien that was previously prescribed?
My husband had trouble sleeping after his transplant, but now months later he is over that. It must relate to the drugs. You should be able to take Ambien.
Should I always wear mask when I'm out and about? Especially, going to my appointments? I asked this question while I was in the hospital and the nurse told me it wasn't necessary. I don't understand why it's not necessary when my immune system is being severely suppressed.
I wash my hands so much they are drying out.
My husband wore a mask for the first month or so. After the transplant, the physicians assistant in the hospital told us that the most recent thinking is that the masks don't really do much in terms of protecting us from germs. On the other hand, I don't think it can hurt and maybe it will help. My husband still wears a mask when he flies. I think washing hands is a completely different issue and doing so is very important. Keep some hand lotion by the sink and use it whenever you wash your hands. That will help.
Hopefully you are going to be feeling a little better every day and then before you know it you'll be feeling great!
:cuddle;
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:thumbup; What pelagia said. :cuddle;
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rookiegirl!! :yahoo; So glad you are home. You have been in my thoughts and prayers all week. I hope you keep improving every day. Rest, take you meds and know we all love you!! :grouphug;
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WOW a PRA of 84% and you still got a match. I'm impressed. Mine is 96% so have decided not to even be listed.
Glad you are home and doing well.
:yahoo;
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Yaaay! Glad things went well. I hope things get better and better soon for you.
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WOW a PRA of 84% and you still got a match. I'm impressed. Mine is 96% so have decided not to even be listed.
Glad you are home and doing well.
:yahoo;
ReRun maybe rookiegirl's experience shows you that all hope is not lost and maybe you could get one too???
though I got the impression the PRA test was post transplant - which would kind of make sense I guess?
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This morning I had my first transplant clinic visit. My creatinine is down from 5.8 to 3.8 since last Friday. New kidney is showing great signs. They have me schedule next Monday to have my Tenchoff (PD catheter) surgery remove. They also scheduled to do a biopsy of the new kidney 2 weeks after that.
Right now, they have me going to the transplant clinic twice a week (Mondays/Thursdays). I'm still feeling lots of soreness and sleepless nights, all thanks to steroids.
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Delighted all's going well, Rookie...
Fantastic news!...
Darth...
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:bandance; :bandance;
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Such great news. Thanks for letting us know how you are doing. We all worry!! :grouphug;
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Great news! That seems very quick to cut hospital visits down to what.. 2 a week? I was led to believe you had at least a month of daily rounds of bloods and clinic visits before they gave you a breather!
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Going back to the hospital Monday to have my PD catheter removed on Tuesday. Last Thursday clinic visit creatinine went from 3.8 to 3.4
Now the doctors are concern about my Liver and Gall Bladder. They think it could be the medications. So when I go into the hospital on Monday, they want to do an ultrasound of my liver and gall bladder. They discontinue one of my meds that could potentially be the cause. Anyone out there having problems like mine? I really hate for them to fix one issue and destroy the other organs in the process.
Still feeling lots of pain and soreness. My pelvic and groan area feels numb still. Just feels like its asleep, but once in awhile I can feel little prickly sensation. Doctors said it could be the nerves trying to reattach, whatever that means. I read a thread about permanent nerve damage after transplant. Anyone out there have the same issue?
I pray for no complication of the removal of my catheter. Another abdominal pain to endure.
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:grouphug;
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My PD catheter was removed Tuesday morning and I was discharged around 8pm. The surgery went well except for some soreness in the incision area. When I arrived in the hospital Monday afternoon, my creatinine was down from 3.4 to 2.8. This morning I went to the transplant clinic and my creatinine increased back to 3.4. Now they want to move my kidney biopsy to Monday instead of 4/20/09 as planned. I don't know if the Sodium bicarbonate had anything to do with my creatinine going up. They dosed me up with this in the hospital. I've noticed I also gained weight since I left the hospital about 5lbs more. I also noticed I'm more swollen. I'm going back again Monday for a clinic visit and if my creatinine is not down they will go ahead and do the biopsy that day.
I'm so scared. I've had 2 biopsies in the past before dialysis and they were both painful. My first one I had complications where I was in the hospital for 5 days. They hit some blood vessels. I'm scared because I still have soreness and pain in the tranplant area.
I just wish I can recover soon from all of this. It's been so crazy and I feel like I'm being tugged left and right and don't know whether I'm coming or going.
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Poor Rookie....
As if you haven't been through enough...
Please God this will turn out to be a minor blip on the road to complete recovery...
May God bless and protect you...
God bless...
Darth.....
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Hi Rookiegirl,
I have heard of a few patients having toxicity from their anti-rejection meds, and as soon as they were reduced, the creatinine went down again too. Hopefully it's something simple like that. Jenna had a little lidocaine injection before her biopsies - never felt a thing. The first one had no bleeding but the 2nd one bled a lot (freaked us out to see her urine look like red wine) but after pressure and resting quietly for 2 hours she was fine. I hope it goes well for you. As far as the numbness, my sister had that after her cesarean, it never did get better, but she got used to it. Best wishes and HUG coming your way - we will be with you in spirit on Monday!
:grouphug; :grouphug; :grouphug;
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prayers and well wishes RookieGirl.
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RookieGirl, I hope things settle down soon. Your body has been through major changes and hopefully, it will all start to get better. Let us know how the biopsy goes. I am sorry you have to go through all of this. We are surrounding you with love and prayers :grouphug;
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I can understand why you're scared. I would be, too. But let your body heal and stay calm (that's really the only advice I have and I know it's not good advice - sorry :()
What anti-rejections meds are you on? Prograf and CellCept?
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I know it's hard not to worry, but try to give yourself a break from that as much as you can. :flower;
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Hopefully this will pass soon and you will be on the road of recovery. Try not to worry, ( easy for someone else to say huh.) but really RG what ever is going to happen tomorrow will happen and all the worry will not change it, it will only stress your situation more. I will pray for the best. :grouphug;
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I can understand why you're scared. I would be, too. But let your body heal and stay calm (that's really the only advice I have and I know it's not good advice - sorry :()
What anti-rejections meds are you on? Prograf and CellCept?
I'm on Prograf and Myfortic. They keep changing my Prograf from 4 to 3 to 2 twice a day. In the hospital they started me on CellCept and change it to Myfortic. I'm not sure why though.
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RG, I really hope they figure out what's going on and get it under control. The changes in the Prograf is because they measure the levels of it in your blood and then adjust the amount you're taking so that the blood level falls within the correct range for anti-rejection without toxicity. It's yet another of the many tightropes we must travel on. I hope the biopsy is smooth sailing and helps to figure out the next step.
:grouphug;
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I'm concern and hope someone can answer some of my questions. After I left the hospital last Tuesday, I've gained over 5lbs of weight. I can really feel the weight gain. I don't think it's because I'm eating too much. I think it was the sodium bicarbonate fluid they gave at the hospital. Yesterday I peed over 4,000 ml of fluids. I would think this would get rid of the excess weight, but unfortunately I'm still carrying the 5lbs. I don't understand what happened after the hospital visit that would cause me to gain weight?
Next question, I'm now down to 3 pills of Prednisone twice a day. My face is still pretty round like a beach ball. Should I expect to gain lots of weight do to steroids? If so, how much? What can I do to make sure I don't gain to much weight where it will damage the new kidney or increase my blood pressure?
Speaking of blood pressure. My BP prior to transplant was excellent. Post transplant, my BP is higher than what I'm use too. Could this BP also damage my new kidney? I keep asking the doctors about this and they don't seem too concern about my BP.
Also, I'm not a diabetic but I noticed since the transplant, my sugar levels are higher than normal. Before the transplant my sugar level was 80. While I was in the hospital after the transplant it increase to 130 to 150 where they kept giving me insulin shots? Does this mean I'm now going to be a diabetic? Now that I'm home, they are not concern about me checking my sugar levels. I remember in the hospital they pricked my fingers so much that fingers where black and blue.
Is this normal for people that gets a transplant?
Sorry for all the questions. I'm just concern.
Thanks,
Rookiegirl
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Hi Rookiegirl I'm 5 months post transplant and had much the same things happening as you , after my transplant i was 10 kilos over my weight before the transplant it was all the extra fluid they pump into you but most people loose theres pretty quick not me i held on to it and had to take laxis a drug to help get rid of the fluid my Dr's told me prednisone can cause some people to keep the fluid on. 5 months on and i still have about 2 kilos extra on its probably not fluid now but weight i have had to really watch what i eat and once i could i had to get back into walking every day its a battle but i think I'm slowly winning it . I'm still on 10mg of prednisone aday and have a moon face.
Some of the drugs we on can cause us to become diabetics i was told 1 in 3 will develop it after a transplant , i had a glucose tolerance test last month and i am in the danger zone so its looking like i might be that 1 in 3 to get it . was told to loose weight and keep up the walking to try and stop it happening.
My blood pressure was low after transplant but it became quite high so i ended up on a blood pressure med but after a ultrasound of the kidney it was discovered the artery from the kidney was narrow at one end so that was reason for the high blood pressure so i had ballooned wider a few weeks ago not sure how successful it was as my blood pressure is still bit high
hope this helps you a little take care :cuddle;
charee
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Rookie...
Steroids cause both fluid retention and weight gain. Fluid retention can cause higher BP. Steroids also cause blood sugar to rise. I just had steroid infusions and my sugar got as high as 485...and I hadn't eaten anything! I freaked!....but 12 hours later it was down to about 145.
As you taper off the steroids many of these issues will resolve. My transplant surgeon said that the average transplant patient gains 20 lbs ofter transplant because they feel better and have less food restriction. But then she asked...."Who wants to be average?"
Keep up the walking, watch what you eat, your body is going through horrendous adjustments....take care of yourself.
A biopsy on a transplanted kidney is NOTHING near as bad as a biopsy on a native kidney pain wise....wasn't for me anyway. I little tenderness at the entry site for a day or two....thats it.
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I'm sure I'm just reiterating what other's have said, but I'll say it anyway. Gaining weight is normal and expected on high doses of Prednisone, but you can minimize the gain if you're careful. I wasn't and now I'm paying the price. Steroids redistribute the weight gain in weird places (neck, face, back, etc.) Exercise (walking) and try to eat as good as you can (fruits, veggies, sugar free, etc.). I was told it's best just to follow a diabetic's diet.
Also, the Prednisone can cause your BP to be a little higher, as well. Watch it, but don't get excited about it because it will more than likely start to come down as your Prednisone comes down. My transplant nephrologist changed my BP medication after transplant and I don't like it. I told my regular neph on Thursday that I wanted him to change me back to Lotensin, because my BP's were excellent on that medication. He said he wanted to wait to see if it comes down as my Prednisone drops. It's not scary high, but a little high. He's not worried.
Monrein is right about the Prograf. That will change depending on the level. I started at 4 and 4 (a.m. and p.m.), then I went to 4 and 3 and now I'm at 3 and 3. My levels are at 8.1 pretty consistently, so I'll stay there until they notice some change in the level.
Also remember that the Prednisone will cause "roid rage". Very emotional! That will go away, as well. Prednisone is a nasty little drug. Miracle drug, but nasty.
:)
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Went to the transplant clinic this morning. My numbers look good and I lost 5lbs since last Thursday. Creatinine went from 3.4 to 2.3. So, they postponed the biopsy until next Monday as scheduled. Last week's numbers was not good due to my Prograf and they lowered it from 3 to 2 and the sodium bicarbonate they gave me at the hospital also contributed to my fluid gain. I'm not a doctor and I already knew all this last Thursday which I mentioned to them.
I just don't want them to freak out each time this happens and want to do biopsy each time the numbers goes wrong. You would think they would consider the possibilities.
I do have a question. In my transplant clinic, I see only the Neph doctors. Shouldn't there be a transplant surgeon there? When I went to the hospital to have my catheter removed, I spoke to the transplant surgeon about some of my clinic visits and the doctor mentioned something about the Neph is really not the right person to answer some of my questions related to the transplant. Who do you see at your transplant clinic?
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I only see my nephs now. I only saw the surgeon for the first couple of weeks and then again when the stent was removed. Surgical issues are usually at the beginning and then it's the neph you want to follow meds and blood work results.
I would always want to know what changes in treatment will follow from any info gained through a biopsy. If there is a clear change of direction that would occur, depending on what they find, then OK, but if it is just to KNOW what's going on but nothing would change then I see it as unnecessary risk.
So glad to hear your creatinine is dropping and that you've dodged the biopsy this time around.
:grouphug;
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At my regular clinic visits I see a Nurse Practitioner, every time. If labs show anything abnormal...they bring in the neph or transplant surgeon or both.
I adore my NP...she is on top of everything and remembers details very well. I feel that she is on top of things...and she drags those docs around by their ears when they play the power game. :rofl;
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Since our transplant hospital is 2 hours away, we see our local neph every couple of months. We have a standing order for labs which are done once a month - the results sent to the transplant hospital and the local neph, with a copy also faxed to us. Right after Jenna's transplant we were handed over from Organ Transplant to nephrology at their hospital. The neph immediately wanted to start Jenna on prednisone, even though she was on a new steroid-free protocol. The transplant surgeon had a bit of a tussle with the nephs and we decided to stop seeing their neph, continued follow-ups with the surgeon in the Organ Transplant team, and that has worked fine for the last 2 years.
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This was my experience.
I had one follow-up visit with my surgeon about 2 weeks post-op and that was the last time I saw him. Right after discharge (Nov. 10th) I went to the transplant clinic every week for labs and every other week I stayed to see the post-transplant nephrologist. Starting in March I went only once a month, had labs and saw the nephrologist. This month (last Tues) I went for my labs but requested not to see the post-transplant nephrologist, as I had an appointment to see my regular neph. two days later for the first time since transplant. They were totally fine with that. They faxed over my recent labs to my nephrologist that day, along with other pertinent information and I was told I would come back to the transplant clinic once a year for labs and a visit, but otherwise would follow-up with my regular neph. Now, originally my regular neph said he would see me about every 6 months, but now he wants to see me monthly while my Prednisone is reducing so that he can watch my BP, Prograf levels, etc.
Also, my stent was removed by a urologist not associated with my transplant at all. They arranged it, but I'd never seen him before and will probably never see him again.
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I HATE PREDNISONE!!!! I feel like I just want to eat all the time. It seems I just can't get full. What should I do to not over eat? I'm afraid if I keep this up I will gain weight and cause other problems with my health. So far, I've maintained my weight but for how long?Anyone experience this?
I'm currently taking 3 pills per day. This Friday, I go down to 2 pills per day.
Yesterday on my clinic visit, I mentioned to the doctor and he really didn't give any suggestions except he said it's the steroids. No dah! The other bad news is that I will probably be on Prednisone forever because of my 81% PRA. I can't wait to see my regular Neph in May so I can ask him for alternatives. The funny thing is that the Nephs at the clinic works for my regular Neph.
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Your appetite is going to be stimulated with prednisone, so If you need to eat more try walking more - if you can walk an hour every morning it would help.
:grouphug; :grouphug; :grouphug;
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Your appetite is going to be stimulated with prednisone, so If you need to eat more try walking more - if you can walk an hour every morning it would help.
:grouphug; :grouphug; :grouphug;
it's been 3 weeks since my transplant and I'm still having difficulty walking because I still have a lot of soreness and tenderness. I try to walk around the house as much as I can tolerate, but the more I over do it, the more pain I get around my groan and drain site. I guess I'm healing and recovering slower than others. I limit going outside because of all the pollen. I have allergy issues.
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Your appetite is going to be stimulated with prednisone, so If you need to eat more try walking more - if you can walk an hour every morning it would help.
:grouphug; :grouphug; :grouphug;
it's been 3 weeks since my transplant and I'm still having difficulty walking because I still have a lot of soreness and tenderness. I try to walk around the house as much as I can tolerate, but the more I over do it, the more pain I get around my groan and drain site. I guess I'm healing and recovering slower than others. I limit going outside because of all the pollen. I have allergy issues.
Sorry rookiegirl, I hope you heal soon. It's only been 3 weeks! I was thinking it had been a little longer. Give yourself time. :cuddle;
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Rookiegirl....it's only been three weeks. They will taper down the Pred and your appetite will come around. And as you feel better you will move more....I know I did. But I do feel your pain....I was on 7.5 mg of prednisone a day was eating well, exercising regularly and had actually started to lose some weight...then problems arose and they pumped me with 500 mgs of prednisone a day for a few days....welllll..let me tell ya...I could just take a couple of big ole slices of bread...slather on an inch of butter....wrap it all around the refrigerator and have me an everything sammich!! It will come around! God Bless.
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Don't rush things. It will all get better when they can reduce your prednisone. For now, just try to learn to deal with what you've been handed. I remember when I was on very high doses of prednisone my stomache puffed out immensely. I complained to my neph about this and her response was, "Well do some sit-ups." Such a BS sort of response because all the sit-ups in the world won't get rid of bloating caused by prednisone. It's not your fault your gaining weight, it's the prednisone. Just wait it out, things will get better.
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This past Saturday & Sunday was a wonderful weekend for me. I was actually out and about to see my youngest daughter perform at her high school talent show. She played her piano. Sunday, we attend my oldest daughter's UNC-Chapel Hill end of semester symphony concert. What a beautiful warm weather. I thank God for allowing me to attend this precious moment with my kids and my husband. Even though at the end of the day I was very sore and tired, it was all worth it. Below are pics of my girls and me.
Just wanted to share.
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Rookiegirl, Your daughters are beautiful and it sounds like they are very talented. I am so glad you had a great day. I hope you got a lot of rest on Sunday. And, thank you for sharing :cuddle;
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:2thumbsup; Beautiful photos!
Take care!
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Dont overdo.....but it sounds like a wonderful time. Thanks for sharing!
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I have a QUESTION???
I'm having to take Sodium Bicarbonate 1 tablets 2x/day and Magnesium 1 tablets 2x/day due to my electrolytes. I'm not sure what this really mean. I tried to read about it more. I'm not sure why this is a problem after post transplant. Could it be my medications? I hate having to take more pills. What can I do naturally to make get my electrolytes back to normal? I have never had this issue before.
NEED HELP!
RG