I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: paris on September 07, 2010, 10:30:15 AM
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My dearest friends, I have so much to say. This post will be short, but you know I will have lots to say!! I feel amazing! Labs are good, little pain, and I am still in a little shock. We all knew this wasn't going to happen. A week ago today, when my co-ordinator called at 7:45am, I didn't even get excited. I was number 4 out of 4 hard to match listees to be called in for 1 kidney. The kidney was a great one with absolutely no markers against any antibodies. The team was amazed at this kidney. Even during the day, I kept thinking that this was a good practice run and at least I could say I have been called once. I told the team that it was great just knowing that someone was going home with a new kidney and I kept focusing on the donor's family all day. So many things kept running through my mind ---- why me? Why not the 27 yr old who was also called? In the end, I was the absolutely hardest to match and my blood liked the kidney. My co-ordinator was stunned and near tears when she told me that it was my kidney. Everyone around me was in tears-- I was speechless (no comments please!) Surgery was a breeze -- little problem with blood pressure, but they sorted it out. Being home is great. Not much discomfort at all. I get my labs done about 2 miles from here and then go to Clinic on Thursday. No time to rest -- too much to do!!! My family has been overwhelmed and amazed at all the support from IHD. They read me posts and facebook everyday. Your words made me know how fortunate I am. I was well prepared, informed and knew just what to expect. Thank you all for your words, your love and your prayers. What a week it has been. Nap time! More later. Love you all more than you will ever know. :grouphug; :grouphug; :grouphug; :grouphug;
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:flower; So happy to hear from you Paris. Nite/nite
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Great to see you back, Paris......
Onward and upward!!!!....
God bless...
Darth...
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:clap; It's great to "see" you!
It does seem surreal that last week you were pre-dialysis, and now you're a transplant patient.
Like Meinuk said, no doubt Goofynina had something to do with it, she was always in on everything!
I look forward to your updates, lab numbers and medication list (I love that stuff!)
Take care! :cheer:
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So good to see you back and know you are doing well. Miracles do happen!! Take care of yourself and that little kidney!!
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So wonderful to see a thread started by you Paris. It always was but this one is different and we all know what I mean. Sending you all my best thoughts. :grouphug;
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Ok enough of the mushy stuff... when you coming back to work?....... >:D...... you know Im kidding.
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So happy for you Paris. What a wonderful gift you have received. When you realize what happened, you are really gonna be happy. How great to never make it to dialysis is that!!!! :cuddle;
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Congratulations Paris.
You're our little miracle. High PRA's, failed IVIG treamtment, Hard to match kidney,yet a pre-emptive transplant. You got the miracle match.May you future continue to be as lucky.
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increadable!! It was ment to be :clap; Im so happy, it surly happened to the right person... Bless ya :-)
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Paris, I know you are still recovering from the surgery itself, but do you feel like you have a new kidney? I've heard people say that as soon as the new organ is in place, they feel better almost immediately and come to realize that they never knew just how awful they had been feeling. Do you feel a noticeable improvement? Do you physically feel that you have a new lease on life? I so curious and eager to know!
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Paris do you know how much HOPE this has given me, I am soooooooo HAPPY for you. I love you 2 pieces!!!! :grouphug; :grouphug; :grouphug;
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Truly Amazing News!
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Lola, I now know that Otto will get his kidney. I was pretty much at the end of the "hope road" and I think God wanted to remind me that all things are possible. I don't know why this happened, but I am grateful.
Moosemom, I do feel so much better. I was throwing up several times a week, not sleeping more than a couple of hours at a time (even with meds) and pretty much just wanted to stay in my house all the time. Now,I am sleeping like a baby! I get up to pee a couple of times a night (that is a really good thing!) and go right back to sleep. No tossing and turning. And I wake up around 7:30 alert. How novel is that! I think we get so use to feeling crummy we forget what good is suppose to be. I am still tired, but can easily walk the halls to get my labs done and walk around the house with little discomfort. I am looking forward to cooler days and walking in my neighborhood. Haven't done that in years. The mind fog is fading. I didn't know what to expect, so I am surprised and excited to feel better.
And did I already tell you?---- I got to see my kidney!! Right before they put me under, they asked if I wanted to see my new kidney. YES!! There it was in a stainless steel bowl with ice. Just sitting there ready to go to work in me. How cool is that???
I have so much to share -- more later!!
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Paris, Had to log on to give you a real hug and heartfelt congratulations, IHD style! :cuddle; :guitar: :flower; :cheer: :yahoo; :clap;
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Wow, Paris, that is just beyond wonderful! So glad you are back home and feeling so good!!! Congratulations, so happy for you! :yahoo;
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I love reading this good news. :2thumbsup;
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So glad you are feeling so wonderful. So when are you going to Paris? :rofl;
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Wow - meeting your new kidney. Have I missed it? Is there a name?
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Onya, Paris :bandance;
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Glad to hear things are going well for you. I can imagine the shock when you were told it's yours. How awesome.
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Liz you are our miracle lady. It makes my heart and brain so happy
to know you have a working kidney. I went to my neph today and my kidney numbers went up again from 27 to 30, I almost feel like a miracle myself. Enjoy yourself giirl you have every right to celebrate.
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Paris, I hope every day is better and better. I'm just incredibly happy whenever I think about you.
I hope that the healing keeps up this pace, and that you have all the energy that you need to plan and have an AMAZING Thanksgiving this year. By then you should be back to the exhausting pace (housekeeping, cooking etc) that you had when you were first diagnosed. :)
xxx
Anna
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So happy for your Paris. I would not have needed any anastheisa, I would have fainted seeing my kidney.
No spell check anymore.... sorry!
Rerun
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super kool. glad you're home and everything is going well. still so excited for you i can hardly stand it. :clap;
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so so happy to read this thread paris :grouphug; :flower;
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Paris I am glad that you received your new kidney and now on the road to recovery. I hope that you have many many years with your new kidney. :clap; :clap; :2thumbsup; :2thumbsup;
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I'm with Rerun - would sooooo not have wanted to see it!
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I log in and start catching up on everyone, then slowly get tired and rest. Then I think "shoot, I didn't post a think about me!!!". Not that everything has to be about me!
So, details for those who want numbers, etc. As of Thursday:
Medications -- Prograf 1mg 3 morning and evening , Cell cept 250 mg 3 morning and evening, Septra 400/80mg - M, W, F , Prilosec, Nephadipine 60mg (for BP), Lopressor 25mg (for BP), Zovirax 400mg daily, Lipitor - daily, Zyloprim - gout, daily, Hectoral 2.5 mcg (vit D) every other day, Ultram twice a day. And percocet when needed and I am lowering that quickly. The pain isn't that bad. I have not been over a 3 on a 1 to 10 scale since surgery. I was told I have a high pain threshold. Ha! A nd NO prednisone!!! Huge iv doses in hospital, chemo during surgery. But, no prednisone at home. :2thumbsup; This may change, but for now I am very happy.
Now, labs - Creatine is down to 2.3. BUN 29 Potassium 5.4 (we want that to come down) Est. GFR 21% Glucose 160 ( I am told it is due to the Prograf, so we are working hard on this number. I have never had high glucose, and they feel this will go down. HGB 10
Hmmm, what else? New kidney is on the left side. I know nothing about the donor except the kidney was very healthy. I think I saw the other recipient at the clinic. She was the only other patient with a mask on. Ok, it is getting late and I have labs first thing in the morning. Tomorrow, the story of naming my kidney. Thanks for all the support. It is the best medicine ( next to percocet!!)
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I don't know how I missed this thread. Love you, Paris. So glad you are home and doing well. So happy for you!!! :cuddle;
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This is such good news. :yahoo; :2thumbsup; I am so happy for you, our beloved Paris. Keep on keeping on, girl! Thanks for sharing all this with us.
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Co-ordinator just called. Creatinine is up - 2.6. Biopsy scheduled for Wednesday. Just a little disappointed, but she kept saying they just want to be on top of things and make things better before they get worse. So, a couple of prayers would be welcome.
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Prayers for you Paris.
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My 2 cents: Whenever they give you news like this, ask what the lab levels are for your immunos (Prograf, Cellcept or whatever they have you on.) If these levels are too high it can cause creatinine to go up. I would think they'd only consider a biopsy if these levels are in a good range, but we were needlessly frightened by a well-meaning nurse who said "creatinine is up - come in for biospy" before even checking the Prograf level. It was high, so changing the dosage and rechecking in a week solved the problem.
Sending prayers and good thoughts - and some HUGS too!
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It was the co-ordinator who called and we have been making tweeks with the Prograf dosage. My Prograf level is actually low. I like my post transplant co-ordinator much more than pre. She went over the labs for last week with the nurse practioner (who I also really like). They told me when I was in clinic last week that this could be a possibility if the numbers didn't change much. Keep talking me through this--- I need everyone's input. I am not too worried, but really want things to be ok.
Keep the prayers coming!!! Thanks Okarol--- your hugs have magic healing powers!!!! :cuddle;
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I meant to also add that if your Prograf is too low it will also cause the creatinine to go up. The first few weeks are a balancing act - hopefully that's all this is. :cuddle;
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I am confident that this is a minor thing and not a sign of rejection or anything.
Best wishes!
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Karol is right (as usual ;)) If you remember my creatinine started to creep up and by tweeking my prograf they got it back down, but then it started to rise again and that's when they found the lymphocele pressing on my ureter causing the kidney to not empty properly. You're in my prayers as always. :cuddle;
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And did I already tell you?---- I got to see my kidney!! Right before they put me under, they asked if I wanted to see my new kidney. YES!! There it was in a stainless steel bowl with ice. Just sitting there ready to go to work in me. How cool is that???
That is SO Cool Paris, and its so good to read how good you are going :cuddle;
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OMG! I think I'd freak out if they offered to show it to me! I don't know why but I'm just so squeemish about all that stuff. Whenever I see stuff about transplants on TV I don't watch the actual surgery type stuff. I know it's happening. I understand what it is. I just don't want to know!!! If I ever get that call and it happens I honestly just want to be put under and wake up in pain with my little bean miracle. Some man, huh?! Paris you're more gutsy than I am (I almost wrote 'you're more of a man than I' but thought better of it !!! :rofl;)
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We had asked if they would take photos of my surgery (and Etta's) if we provided a camera or two. They had to get authorization first and on the afternoon of admission we were going to stop and get two disposable cameras on our way in, but opted not to because we hadn't received an answer yet. After they wheeled me in the nurse came out looking for Charles to get the cameras, but he was apparently in a different waiting room and she couldn't find him. We didn't even know they had approved our request. :banghead; I'm so mad we weren't able get photos. They had students in the surigical theater that day and my coordinator was also in there because this was her first living donation since becoming a coordinator. I would have loved to see it all!! ;D
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Today the story of "Sean Michael". Right after surgery, my BP was 270/110. They kept me in recovery for longer than expected, so my family was worried. That is why they sent me to ICU instead of a step down room. I was there for about about 17 hours. My nurse was Mike and he was incredible. Once I was "with it" we had a great time. He couldn't believe how well I was doing and how willing I was to do anything. Get out of bed? No problem! Sit in the chair? No problem! It didn't hurt that he was gorgeous!! When it was time for him to go off duty, I overheard him in the hall telling the new nurse how special I was. He said I knew more than any patient he had ever had, that my attitude was amazing, and that I was a sweetheart. Everyday, he talked to one of my family to see how I was. He made my first day a great experience. Then there is Sean. He is a med student that I met in the ER along with the "team" who would follow me. There is a certain way the enter a room-- Surgeon, Fellow, Resident, Intern and then the lowly med student. I knew some of the others by name, but Sean was always in the back of the room and always quiet. I finally asked him his name and his face lit up! From then on, I was his patient. He came back on his own time and would spend over an hour each time explaining things and reassuring all of us. I was his first kidney transplant, he put the stables in the incision and he felt very close to me and my kidney. When I was in clinic last Thursday, talking with the co-ordinator and PA, there was a knock on the door. It was Sean!! He saw my name on the appt schedule and wanted to see me! What a sweet kid he is. The co-ordinator said she had never seen anyone from the team just stop by during clinic. You should have heard the rest of the team when they heard the kidney was named for Sean. He was smiling ear to ear and they were all complaining that they never had anyone name an organ after them. We will always remember each other. Two very kind people just when I needed them the most. Sean Michael---a good Irish name, right Darth??
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:2thumbsup; I love that story! Long live Sean Michael!! :)
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Well dear Paris it's not just us who know how special you are - your magic has spread! Lovely story and what an hono(u)r to name your little bean for Sean!!!
Now when it's my turn can I have his sister work on me? pretty please???? >:D
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Today was spent at the hospital having a kidney biopsy. My creatinine was going up over the past week, even with tweeking the meds. After a long day of worry and discomfort, we were told the good news that there are no signs of rejection. The kidney just is a little sleep and doesn't want to be fully awake yet. The neph said it could take a couple of months. I was glad to hear that. I will just be patient. I am just thrilled that it looks good and I am not still in the hospital :2thumbsup; Thankfully, because of IHD, again I was prepared and nothing came as a huge surprise. I am already in my pj's and almost ready for bed. Bed, in my own home, not in the hospital-----Yeah!!!!!!!!
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Good to hear.
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:flower; Good news! Hope you have a relaxing sleep tonight - it's great to have the biopsy behind you! Sean Michael is just taking his time!
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GREAT news, and sorry I have been so behind in my reading about your adventures with Sean Michael! BTW those two men just learned something about you that we have known for years: You are very special, and easy to love. Paris, just add their names to the ever growing list!
:)
Anna
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Meinuk, you are such a sweetheart! And one of my main guiding lights!
The nephrologist that did the biopsy was also part of the original team with the 2 cadaver kidneys. He remembered my name and said I was extremely fortunate. I was number 4 on the list of 4 for 1 kidney. He couldn't believe I actually got one. He thought it would never be a match. I continue to be reminded that I am a miracle and it is very humbling. Tired today and my silly knee/leg is swelling again. The aches and pains before transplant stay with you! :rofl; But nothing about the surgery or biopsy hurts or is sore. I have never been past a "3" on "1-10" scale this whole time. They told me yesterday I must have a high pain threshold. No, it just takes too much energy to whine and cry! Oh, I will let you know if it hurts! I am not a martyr!!! (where is spell check??) Plus, I have a lot of people behind me, encouraging me. Love to all of you and many thanks for being there when I needed you. :grouphug;
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Great news all round, Liz.... Delighted to hear that all's going so well....
Yes, I approve of the Irish name for the little bean...
Told you that the shamrock would bring you the luck of the Irish!...
Keep it going!!!!...
Darth...
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Darth, I have told everyone about the shamrock! I think you are my own personal good luck charm!! :2thumbsup;
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Hee Hee!!!!!..... Delighted to be able to oblige!!!....
Love....
Darth.....
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Will anyone volunteer to be my good luck charm? hello? anyone?
I can hear the sound of crickets......
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:2thumbsup; I love that story! Long live Sean Michael!! :)
I agree - long live Sean Michael!!
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Will anyone volunteer to be my good luck charm? hello? anyone?
:waving; ME :waving; ME :waving; ME :waving; ME ME ME ME ME .................... :waving;
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:waving; Hi Paris,
Please add your donor to our Honor Roll: http://ihatedialysis.com/forum/index.php?topic=18641.0
:yahoo;
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It's not cricket season just yet, Richard.
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It's not cricket season just yet, Richard.
lol what's that got to do with it?!! Given the result last night I wish I could hibernate through the next six months!!!
thank you, Marina!!! :)
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Will anyone volunteer to be my good luck charm? hello? anyone?
I can hear the sound of crickets......
MEEEEEEEEEEEEEEEEEEEEEEEEE :-*
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I hope you know how much HOPE you have given to many of us out there in pra HELL land. xoxoxoxox
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I hope you know how much HOPE you have given to many of us out there in pra HELL land. xoxoxoxox
That is what Barry and I said when we were waiting that day. We thought there was no chance that day, but at least it put hope back in our vocabulary. I have a sign in my garden "HOPE". Around June, I started to give up on hope. I was going through my 5th year of evaluations, and finally asked what the cut off age was; when would I age out. She told me we would talk when I was 80! So, if I do nothing else in my life, I pray that my kidney can give people hope -- I never believed this could happen. The team didn't think it would happen. But it did, and I need to share the hope I found with everyone waiting. It is really time for Otto's hope to come true. :cuddle;
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:cheer: You have such a great outlook paris!
I hope you don't mind me sharing Otto's page here so other's can subscribe to updates and share it on their facebook pages too! http://www.facebook.com/home.php?#!/pages/Help-find-Ottos-HERO/111480325536939 (http://www.facebook.com/home.php?#!/pages/Help-find-Ottos-HERO/111480325536939)
:thx;
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Okarol, I am glad you posted Otto's page here. Remember sitting in Vegas knowing Otto was having surgery? We were all so excited for him and then things went wrong and we all hurt for him and Lola so much.
I have been tired the past couple of days. Thank you, Kelly, for reminding me that I should be tired! I need to always remember that I don't have anything else to do but take care of me and "Sean" right now. I got my first 3 month order of prescriptions (most of them). Thank goodness for insurance! And for life saving drugs! And for no prednisone. I am having tremors now, which was really funny last night when I was helping Beth cut out fabric. She finally took the scissors away from me "before you hurt yourself!!!". Clinic is on Thursday. :thumbup; And when I have labs (M-W-F), I have the same tech. I like that because he knows my arms now and is good with the needle. Funny what makes us happy now. lol
Thanks to all for your wonder support. I don't know how people go through this alone. It feels good to have such a great community to lean on. :grouphug;
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Paris, can you tell us a bit about how you've been handling things like the hygene aspects - like do you use a lot of hand sanitiser and stuff like that? What about going out in public, eating etc? What guidelines are you using there?
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Omigod holy cow! Paris has a new kidney! What excellent news! Omigod!!!
:thumbup; :thumbup; :thumbup;
Take it easy now dear girl and rest yourself...
w00t!!!!
:clap; :clap; :2thumbsup; :2thumbsup; :cuddle; :bandance; :bandance; :cheer: :cheer:
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Natnnnat----Thank you! I am still flying high!!
Richard, Good question! My daughter, Melissa, hired a team to come in and scrub everything down-- counters, floors, bathrooms, etc. Then my daughter-in-law (the nurse) bought a case of paper towels, hand sanitizers for every room and hand washing instructions that she posted on the front door, in the bathrooms and kitchen. You should hear the grandkids sing "happy birthday" two times while they wash their hands!! I was told not to eat out for a while. No salad bars, no buffets, etc. No fast food, because you don't know how long it has been sitting there. If you have to eat out, order a steak (not rare), a baked potato, but ask them not to open it. Wash all fresh produce, even the ready to eat bagged salads. Only eat fruit that can be peeled. (can you peel strawberries or blackberries??). I were a mask at all labs and clinic visits. Also to the store - I've only gone twice! We put anti-bacterial wipes in both cars. I just think it is good to be careful and respect this gift. Why take any unnecessary chances? It helps that I have always been a rule-follower (surprise!) LOL -- so if they tell me to do something, I will until they tell me different. Thanks for asking, Richard! :cuddle;
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Forgot to say that Thursday was clinic. Creatinine was 2.4. They keep telling not to worry, it could just take awhile. Potassium was down. Tremors are still going strong, but it helps to know that they should settle down after awhile. I am healing so well, that part of the skin has grown over some of staples. They took out about 30 - about 3 inches of the 8 inches. My surgeon is known for the amount of staples he uses! Labs are now down to twice a week. So, I feel like I am making progress. :2thumbsup;
Our newest grandchild will arrive Tuesday. #10! A baby girl. It has been the month of great events for us.
On Friday, 14 of the orginal 16, will head for the week vacation in Disney World. The main event is the Mickey's not so scary Halloween Party and everyone is in costume. Barry and I were going as original Mouseketeers. Fortunately, we booked everything through Disney and they refunded everything. Beth and Hatem are Jasmine and Alladin. The kids and grandkids are sad to go without us, but they all think I have a great reason for not going! I told them they have to email pictures everyday. My son, Todd, says there is next year and everyone else wants to go again, too. And "Sean" will be in full form by then! :thumbup;
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Did you get my phone message the other day, Paris? I would have loved to talk to you. Tell me when a good time to call you would be.
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Boy am I lay to this party!
Just saw this post on new topics that wasn't there before.
Glad things are improving Paris.
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What Chris, AB isn't keeping you up to date via texts? What shall we do with that girl?!?! :rofl;
Paris, wow that's a lot of precautions you're taking - NOT that I blame you. I guess I'm selfishly asking because hopefully someday that will be me. I know my own care team will give me lots of instructions, but I think I want to try and prepare myself emotionally/mentally as much as anything. I've already done a few small preparations, like got a box of disposable gloves to use when dealing with the cat's litter tray(of course for the first X months I know I can get my sister to do that job!!) and I have some of the hand sanitiser that doesn't require water. Obviously I will need so much more.
Living on my own I do wonder about the deep cleaning and all that (and about how I can deal with my kitty). All things to ponder...
re food sounds like I might have to lean on my sister a lot in that dept (I am terrible in the kitchen... need a good woman to help :rofl;). I do agree that with a lot of food out you just don't know how long stuff has been out. I have kept it in mind quite a lot when I have been out just watching what they do and stuff. Some places, for example, make burgers fresh, but then zap them in a microwave (?!) but then you have the issue if they stick salad bits - lettuce, tomato, cheese in how long has THAT been sitting in the preparation area (same with subway, which would have to be a big no no). Another place I like to go to that does these awesome chicken schnitzel burgers I noticed they have the schnitzels sitting under heat lamps - again goodness knows how long for - so that place would be out. d'oh! A few of the higher end places make stuff fresh to order, so the meat I wouldn't be too worried about (cooked there and then) but the salad stuff, bzzt.
I guess these are some of the tradeoff's for the wonderful gift.
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For Jenna the food restrictions were especially important in the first 90 days. After that you can eat more normally, although in the case of spoiled or questionable food, it's better to just err on the side of caution.
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Okarol's right, it does get better as time goes on.
Richard, I was so glad they said my cat was ok to be around. I would have had a tough time without her! You do have to be careful with the litter. The one thing that was a surprise to me was black pepper. They said to avoid it because it is a plant and can have spores in it. After all this time, and I hadn't read anything about that. And it does seem like each center has different rules.
Numbers update: Creatinine is 2.2 (best it has been). They told me that my kidney "buddy" is doing the same thing-- slowly waking up and we are pretty much on the same path. My white count is low, so a change of the cellcept dosage. Hemoglobin is 10 - I am happy with that, they want it a little higher. Things are going along great. Today was a mulitple nap day. The past two days, I helped Beth sew. So, two energy days = one day of rest!
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:2thumbsup;
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Great news paris!!!!
Glad to hear your kidney is waking up!!!!
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Sounding good, Paris.
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Paris,I am so happy for you and your new kidney.Make sure you get lots of rest.
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I do hope, things go well for you in the future.
Just imagine, I did not even know you had a transplant!
Best wishes from Kristina :waving;
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Things continue to stay on an even keel. Clinic is this week and I hope they take the rest of the staples out. I don't especially like getting up early, but I do like going to clinic so they can assure me that everything is going well. I think my husband is a little concerned because he thinks I am too tired and not doing enough. He doesn't say it in those words, but he mentions how much I am sleeping a lot. I remind him that I am many years older than I was when this all started and I am not going to go back to where I was then. I'm older and earned some rest! I am going to continue to listen to my body and do things when I feel like it and rest or nap when the body says to stop. How were some of you doing at 5 weeks post?
Fourteen of the family members are all at Disney World on our wonderful family vacation that we had planned for the past year. They are having a great time. Sunday was the "Not So Scary Halloween Party" at the Magic Kingdom and all their costumes looked great. They are having a magical time!! ( I miss them!)
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Things continue to stay on an even keel. Clinic is this week and I hope they take the rest of the staples out. I don't especially like getting up early, but I do like going to clinic so they can assure me that everything is going well. I think my husband is a little concerned because he thinks I am too tired and not doing enough. He doesn't say it in those words, but he mentions how much I am sleeping a lot. I remind him that I am many years older than I was when this all started and I am not going to go back to where I was then. I'm older and earned some rest! I am going to continue to listen to my body and do things when I feel like it and rest or nap when the body says to stop. How were some of you doing at 5 weeks post?
Fourteen of the family members are all at Disney World on our wonderful family vacation that we had planned for the past year. They are having a great time. Sunday was the "Not So Scary Halloween Party" at the Magic Kingdom and all their costumes looked great. They are having a magical time!! ( I miss them!)
There will be plenty of vacation in the future. (the photos on FB looked like a great party)
It takes a concerted effort to get back to yourself after a period of bed rest. I think I have heard a week for each day in bed so you'll have some work to get back to where you were.
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Paris I was about like you at about 5 weeks I started baking something every day. Something I could sit dawn and rest when i needed to. I gave away so much food, some to neighbors and I took some to the food pantry, and the hospice house for visitors I even got out my old bread machine and made lots of different kinds. It was great therapy for me. I felt like I was being useful again.
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Both my mom and my sister needed regular naps post transplant (and sister's donation to mom), so I think you are doing GREAT! You had major surgery and need to give your body time to heal. You need your rest. Your energy will come back soon enough. Just concentrate on you and getting you to feel more like yourself. My mom was so happy to hear you got a transplant. I've told her about your PRA. She said you give all high PRA people hope! :grouphug; :grouphug; :grouphug;
Beth
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With a hemoglobin of 10, you would nap anyhow. Add in transplant surgery, new meds to adjust to, etc....it's going to take a while to get up to speed!
I'm glad they don't make you get rid of kitties, too. Although I do sometimes wonder what my neighbors must think I'm doing when I take the used litter to the dumpster - dressed in gloves and a face mask!
Disney will be even better next year when you have energy to (almost!) keep up with the kiddies!
:grouphug;
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:2thumbsup; good to hear things are going so well
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Hopping things continue to improve Paris. I'm not a morning person either unless I didn't sleep.
Disiney won't go anywhere, hurricanes haven't moved it yet so it will be there nextyear or when you plan next family vacation.
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Clinic day. Everything is going just the way it should :2thumbsup; I got to talk to another patient who got her kidney a week before me and it helped to hear how she felt, energy, appetite, etc. I feel like I am on track. It is reassuring to have them tell me things look good. Although, my husband is still concerned about my level of activity. He said today he worried my brain wasn't being "worked" enough. LOL Bless his heart!
Last night, the gang was at Whispering Canyon's for dinner at D W. They all were wearing buttons that said "we are celebrating our Mom's (Nana's, mother-in-laws, etc) new kidney. The waiter wanted to know about the buttons. Beth called me during dinner and suddenly, the waiter was on the phone! He asked for everyone's attention in the restaurant and proceeded to tell them that my family was there, but I couldn't be because I just got a new kidney. He asked everyone there to wish me well and good luck! So the whole restaurant is yelling good wishes to me!! Made me teary. Then he got back on the phone and said he would be waiting for me when I could come. Wasn't that special? Then I talked to 4 of the grandkids. Eliza(10) lost it. She was sobbing and telling me how much she misses me. My son, Todd, said she was having a hard time without me and just wanted me there. Now that really made be teary!! But, I know how fortunate I am and how much they all love me. My cup runneth over.
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Made me teary too!
I know you have many more wonderful times ahead of you!
:cuddle;
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Thanks for sharing the wealth! :-*
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Co-ordinator just called. They think I have a UTI, but I have no symptoms. They are going to grow the culture over the weekend and get a definate answer. But, you all know the routine, if I run a fever or have pain, call immediately. I think it is fine (thinking positively). Now I am going to go drink a ton of water. :rofl;
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Paris, try some cranberry juice, too!
:-*
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Good idea Zach :2thumbsup; I had forgotten about cranberry juice!
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Long day at the transplant clinic tomorrow. 1st appointment is at and 9 second at 3. Finally get all the staples out! My surgeon leaves them in longer than any of the others. I wondered why. He uses a higher cauterization during surgery, so it takes a little longer for the incision to heal. Not my skin! It heals very quick and grows over the staples. Fun.
Then I go to have the stent removed in the afternoon. Bassman, I am thinking of you! Think some good thoughts for me--- a camera and 5 inches!!!! :rofl; This is the only thing in the whole transplant process that I am not looking forward to! But, it will be over
tomorrow :2thumbsup;
Overall, things are great. Still need the creatinine to go down *crossing fingers*. Patience. That is what kidney disease has taught me - patience. I have not felt like taking a nap for 5 days now! Muscle strength needs work and stamina, but I'm doing more now and feel good about it. Week by week, I see a difference. :thumbup;
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REMEMBER, if they say you can watch on the screen DO NOT look until the camera is in! Learn from my mistake... :puke;
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:2thumbsup;
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It's really not that bad, I didn't mean to frighten you. I watched the whole thing on the monitor. Kind of cool really everything was nice and pink on the inside.
Take slow deep breaths as they guide the scope in and it is a lot easier. Let us know how it goes!
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Thanks Kelly, Okarol, and Bassman! The funny thing is, I never look too far ahead or worry before hand. And I tolerate pain very well. (I think it is pointless to scream and cry). But this just kind of creeps me out! 5 inches of anything inside of me that shouldn't be there is a little gross. I didn't flinch at the biopsy and I love watching them do sonograms or echocardiograms. So maybe the monitor will keep me very entertained!!! Or I will go to my happy place and swim with the sea turtles! (Like Kelly and her dolphins!) Note to self, do not look until the camera is in!!!!
I'll tell you all about it tomorrow night! :rofl;
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All foreign objects are gone from my body!! I had such a great doctor doing the stent removal. I told her I needed to know everything that was going on, so she was great at explaining what was going to happen. I loved watching the monitor. They showed me where the native kidneys were attached to the bladder and then up at the top, where the new kidney is attached. Fascinating! And to see that pretty pink kidney was amazing. Bassman, you would have been proud of me! One of the easiest procedures I have had. :2thumbsup;
Best news of the day-----creatinine is 1.8!!!!!!!!!!!!!!!!!!!!!!!!! Sean the kidney is still waking up and doing good. It hasn't been that low in years. They added magnesium to my pill intake. 3 times a day. That may explain muscle weakness. Anyone else take magnesium? I would like to know more about it.
Good day, good labs. Who could ask for more?
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:bandance; :clap; :yahoo; Yay for that FABULOUS number paris!!!
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Great creatinine level, Paris! I'm super duper happy for you and Sean!!! I didn't have to take magnesium. What are you taking it for?
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I think Gregory takes magnesium Paris... I must ask him why tonight. Will report back.
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Paris, I checked with Gregory about taking magnesium. He does take it , but it wasn't prescribed by his kidney doctor. He was seeing a psychologist for a little while, who suggested he take magnesium, B complex and Zinc, for depression. He did so, stopped seeing the psych, and appears happy with that. And his skin seemed to be clearer too.
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My magnesium level showed very low in labs and it causes muscle pains, weakness and can cause fibromyalgia to be more painful. I have never known my magnesium levels - didn't even know it was ever checked. I am amazed at how detailed the team is at looking at every single level.
So, I am hoping it will help some of these symptoms.
Thanks Natnnat, for asking Gregory. I didn't know anything about magnesium until now. What would I do without IHD? :cuddle;
I was very surprised when they told me 1.8 yesterday. The past week, I have been very anxious, watching every little thing and worrying (which isn't like me). So that number made me take a big breath and relax. And then to see that pretty pink kidney on the monitor gave me even more peace of mind. I really do like clinic days. It is like getting an "A" on a major test. The team did say to Barry that they are so impressed with how educated with the disease and transplantation I am. Guess who I thank for all that knowledge? All of you!!! The IHD Encyclopedia!!!
:cuddle; :cuddle; :cuddle;
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2 months today :2thumbsup; There are still days that it feels like a dream. I am so thankful to the family who chose to donate their loved one's organs so many could live well again. The lady who got the second kidney is also doing well. I am filled with gratitude.
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:flower; Beautiful.
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Glad to read this Paris, and congratulations!! I hope everything continues to go well for you :thumbup;
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I'm so happy for you. I hope your kidney lasts years and years.
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You are LIVING THE DREAM Paris!! Long may it last!
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Every time I go to the clinic, I find out a little bit more about my kidney. The donor only had 3 antigens -- he had two of three different antigens. So a perfect match with him would be 3/6. That is why they only called in hard to match patients and why I ended up with it. They said they don't see if often and for everything to line up for me to receive it was as close to a miracle as possible. Any transplant is a miracle :2thumbsup; I am very fortunate. If it weren't for this one person with only three antigens, my miracle may have never happened.
Thanks to everyone who is willing to donate their organs. :cuddle;
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The donor only had 3 antigens -- he had two of three different antigens. So a perfect match with him would be 3/6.
:flower; Wow Paris that is a miracle. It's not something they would have know when considering donating either. Being a hard to match girl myself, I understand the difficulty in getting a transplant. I truly believe someone was looking out for us and found our special angels, giving us the second chance we needed.
My sister has just had two donors turned down as she also has a high PRA. She is now looking at starting dialysis. The news of a 3x2 antigen mix is music to my ears!
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Creatinnine is holding at 1.7 the past 3 weeks, but not going up. Things seem to be a-ok! I have been tired this week, but think I may be trying to keep up with everyone else too much. My husband starting painting the porch and I can't sit when someone else is working. Plus, I am the best edger in the world! (not so much now with tremors!!) The project is growing and I realized today, maybe I can't keep up yet. :rofl;
My sister in law asked yesterday if my body had accepted the kidney now. It still amazes me how uninformed the family can be. I should have just said "sure has. I am cured!"
And I spent over an hour arguing with the pharmacy company my insurance uses. That was fun. I found out that the more upset you get, the worse the tremors are!! Is it bedtime yet?
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A transplant is tons better than dialysis, but you are on a lot of drugs to keep it and you won't be normal again. But you will be close.
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:clap; Steady as she goes paris, sometimes you just need to watch and give instructions! :rofl;
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Paris, I just found this thread but just wanted to tell you anyway how happy I am for you! :cheer:
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Dear Desert Dancer, I can't hear that phrase too many times! Thank you for your post. :cuddle;
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My sister in law asked yesterday if my body had accepted the kidney now. It still amazes me how uninformed the family can be. I should have just said "sure has. I am cured!"
Only if you add the gospel choir with generous lashings of "Glory Be!" :rofl; :rofl; :rofl;
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Paris, I also just found this thread....So very happy for you. I have 98% PRA and will start IVIG next month. I went through months of B cell, Velcade treatments last fall that did hardly anything. My daughter is going to be tested right before Thanksgiving as she is a perfect match except for one antibody. The hospital wants her totally tested and ready for a quick surgery. I am hopeful but know from last year that these treatments don't work on everyone. I was so excited to see you finally got a kidney.....you are blessed my dear. Take good care.
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I think that the 3 month mark was a great turning point. All of a sudden, I realized I bought groceries and made it through the whole store and could still put them in my car. Sounds like a small accomplishment, but it felt as close to "normal" as I have been for years. Even Beth said she could tell a difference in everything about me. Sleeping is wonderful, no naps needed through out the day. :2thumbsup; Appetite is still small but I eat better than I have in years, as far as healthy wise. Also lost 25 pounds --- can you tell I am not on prednisone?? Creatinine finally went down to 1.4 two weeks ago! Lowest it has been. They had just told me that I might stay at 1.8 forever and 10 minutes later the nurse danced into the room with that morning labs and it was 1.4. She was more excited than me! Magnisium is still very low despite taking 2400mg a day. Everything else is doing good. My "emotional" part is getting better. I think once the holidays are over, it will be much better. Labs again in the morning. My now, good friend Robert, always does the draws and he is good at it. Off to bed. Thanks for always being here and for listening. I tell you guys more than I tell anyone else! :cuddle;
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:cuddle;
Good to hear all this good news Paris!
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That's so wonderful Paris. I too have sort of unofficially set myself the 3 month anniversary as a kind of milestone; I just passed the first month and already I am walking to the supermarket and doing shopping (not huge amoiunts, as I don't want to be carrying too much.. so smaller trips every other day). Doing general walking for exercise, interacting with people more and more and feeling more comfortable about where I am going. Yes, I have a few bumps with the creat, Hb still low and other stuff, but in general I *know* I am getting there.. and it's amazing that generally I wake up say 7am and I am right for the day. I am motivated (and have the energy!) to get up, eat breakfast (I never really used to because I'd rather sleep in!), have my meds, and get on with stuff - OK yes that stuff usually has been over to pathology for bloods, then off to the clinic or doc, but I've had a few days off so far and being able to be u8p that early with the energy and motivation to do stuff... it's a wonderful feeling and I think "Imagine how good it will be when things are more stable, my prednisolone dose is down more, and I am in a regular cycle of working and stuff!"
This is our very special new lease on life. This is what the gift is all about.. and THIS is what I want to savour, enjoy and have for as long as possible!
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The thing I am most pleased with is that you are sleeping! I recall seeing you many nights on here in the wee hours, just never getting a good night in. I am thrilled you're doing so well! :cuddle;
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Good on the pair of ya!
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Good news Paris. Being able to get the grocery shopping done and carry bags is a major milestone. Watch out for the heavy ones! You don't want to strain the abdomen.
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Okarol, I agree that sleeping is one of the best things ever! I get up once during the night and fall right back to sleep.
Richard, I am up around 7:30 and am awake! I don't stumble through the morning. It is amazing to feel like this. I forgot what it was like to not live in a fog all the time.
God bless donors. The truest life savers ever. :2thumbsup;
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Had clinic appt today. I saw the nephrologist that did my biopsy. He wanted to talk about it more today-- 3 months later. Anyway, the biopsy showed signs of FSGS. I am not going to worry. I had slow progressing FSGS before, so even if it does effect this new kidney, I am sure it will also be slow progressing. And those of us with FSGS know this is a possibility with a transplant. So far, there is no protein in the urine. The doc says we will stay on top of it, keep having labs often and not worry until he worries! I love his attitude. The lab was backed up, so I didn't get my results today. If they don't call, it means everything is in the normal range. Again, not going to worry. I think I have turned a good corner because I can truly feel the difference now. And I am dealing much better with the whole emotional part of transplant. Thanks to so many of you. :cuddle;
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Glad it went okay(ish!), Liz....
Keep it going!....
Love....
Darth...
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I think you have realistic attitude - the FSGS is not an immediate concern, as you say, it took many years to cause damage. And I am so happy you're feeling better. Good things are worth waiting for!
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I think month 3 was the turning point, month 4 I could feel such a difference and month 5 is great. Creatinine is back up a little: 1.68. It went to 1.4 for one lab test but seems to like to hang out at around 1.6 to 1.7. Magnesium low, but my hemoglobin is 11!! I think I forgot it could be at that level! Hasn't been near that number for as long as I can remember. What a difference that makes. I feel fortunate not to be on predisone. I think it has made things easier for me. But instead of the munchies, I don't feel like eating and protein is just something I don't want to eat. But, 2 weeks ago, I went shopping and to lunch with my 2 daughters and we spent the whole day out and about. By 5pm, I realized I still felt good. Haven't been able to do that with my girls for years. My cup runneth over.
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Great to hear.
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:cheer: Yay paris - so glad you're doing well! :cheer:
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:yahoo; :2thumbsup; :clap; 6 months today!!!!!! Thank you for all your support. Life is good!!!!!! :clap; :2thumbsup; :2thumbsup;
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Hooray, hooray.... and many more kidney-versaries to come!
Aleta
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Wow! Six months - what a fabulous miracle!! :clap;
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Fabulous! :yahoo;
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Labs in the morning. My team still wants labs every two weeks. I know they are being careful and I do what he tells me. From the first day we are diagnosed, we live by our labs. I never have been particularly afraid of the numbers. They are just my guide to tell me what to do next. Maybe the magnesium has finally gone up. They lowered the dose because it was causing not so nice side effects and my body wasn't absorbing it. The thought is, lower the dose and see if I absorb more if I can keep it in my system. We shalll see. Hope my favorite tech, Robert, is there tomorrow. :2thumbsup;
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What does low magnesium do to you?
You must still think this is all a dream. What a miracle! What a miracle!!
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Magnesium is important for your heart, muscles and kidney.
My favorite tech wasn't there today. :thumbdown; The new tech gets the standing order and I give her the envelope from the transplant center tube in it. She puts the tube on the counter, pulls out 2 more tubes and gets ready to draw blood. I say "that isn't the right number of tubes" She said "yes it is, the order shows three tubes" I could not convince her that the orders do not include the seperate tube from UNC. I explained I was in there every two weeks and I know what tubes are used. She said" Really, I've never seen you before". Like that was the point I wanted her to understand?! This is at a hospital. Why is it so hard to follow orders? So, now the worry is if they will send a purple top tube to UNC or will they beable to run all the necessary tests with one less tube? I've emailed my co-ordinator, so she will be aware there may be a problem. You always have to be on your toes. It feels like a full time job some days! ( a really good full time job!!)
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:rofl; Hahahaha she's never seen you before. Tell her you used to be a man, now does she recognize you? :rofl;
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Creatine is back up to 1.8. None of us are concerned, but I want it back at 1.4. I need to keep drinking more and more. I am surrounding myself with water bottles. Everything else is ok - some numbers too low, but nothing we can't handle. The hospital I get my labs done, now has online lab results, so a few days after getting them done, I can read them online. I really like that. The transplant center calls me that afternoon, if there is a problem. But now I can read all of them. I like having that little bit of control!
Okarol, you are bad!! :rofl; :rofl;
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How's your prograf? Any changes in Jenna's trough level and her creatinine goes up.