With love and gratitude

[lou]

so so happy to read this thread paris   

[ChickenLittle56]

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. 

[jbeany]

I'm with Rerun - would sooooo not have wanted to see it! 

[paris]

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.       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!!)

[kellyt]

I don't know how I missed this thread.   Love you, Paris.  So glad you are home and doing well.  So happy for you!!!   

[Bajanne]

This is such good news.    I am so happy for you, our beloved Paris.  Keep on keeping on, girl!  Thanks for sharing all this with us.

[paris]

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. 

[Sunny]

Prayers for you Paris.

[okarol]

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!

[paris]

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!!!!     

[okarol]

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. 

[RichardMEL]

I am confident that this is a minor thing and not a sign of rejection or anything.

Best wishes!

 

[kellyt]

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.   

[charee]

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

[RichardMEL]

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 !!!  )

[kellyt]

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.       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!!   

[paris]

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??

[okarol]

  I love that story! Long live Sean Michael!!

[RichardMEL]

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? 

[paris]

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       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!!!!!!!!

[galvo]

Good to hear.

[okarol]

  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!

[Meinuk]

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

[paris]

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!       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.   

[Darthvadar]

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...