With love and gratitude

[paris]

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?   

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!!!
          

[paris]

2 months today       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.

[okarol]

  Beautiful.

[Joe Paul]

Glad to read this Paris, and congratulations!! I hope everything continues to go well for you 

[Sunny]

I'm so happy for you. I hope your kidney lasts years and years.

[RichardMEL]

You are LIVING THE DREAM Paris!! Long may it last!

[paris]

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        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.   

[Wattle]

   The donor only had 3 antigens -- he had two of three different antigens.  So a perfect match with him would be 3/6. 

    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!

[paris]

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.   

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? 

[Rerun]

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.

[okarol]

  Steady as she goes paris, sometimes you just need to watch and give instructions! 

[Desert Dancer]

Paris, I just found this thread but just wanted to tell you anyway how happy I am for you! 

[paris]

Dear Desert Dancer,  I can't hear that phrase too many times!   Thank you for your post.     

[RichardMEL]

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!" 

[phyl1215]

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.

[paris]

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.      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!   

[natnnnat]

 
Good to hear all this good news Paris!

[RichardMEL]

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!

[okarol]

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! 

[galvo]

Good on the pair of ya!

[Sunny]

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.

[paris]

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.   

[paris]

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.       

[Darthvadar]

Glad it went okay(ish!), Liz....

Keep it going!....

Love....

Darth...

[okarol]

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!