I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Meinuk on April 18, 2009, 08:47:57 PM
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Time flies right? In two weeks, I'll be marking 6 months with my new boy kidney. What a trip it has been. Physically, I have nothing to report. Everything has been great, creatinine holding at 1.2 (knock wood). I am down to:
2,000 mg cellcept (1,000 am, 1,000 pm)
12 mg prograf (6 am, 6pm)
5 mg prednisone (am)
For those of you keeping count here is my new monthly cost breakdown for my transplant drugs
Prices from Drugstore.com
500 mg Cellcept $ 945.16
1 mg Prograf 242.50
5 mg Prograf 702.00
5 mg Prednisone 3.59
Month Total $1,893.25(I am so relieved that I have insurance)
I was back at work full time earlier than I care to write publicly (my team reads IHD). After reading what so many have been going though, I realize that I am one of the lucky ones. And after meeting so many people at my clinic, I count my blessings there as well.
Emotionally, this transplant has been challenging. All of a sudden, I have been faced with time, and an uncertain future - I am free to do what I want (within reason) but I will always have the immuno$urpre$$ive financial anchor holding me. And, I will always know that transplant is not a cure. This kidney will eventually fail. I still have CKD5. But for the time being, I am getting internal dialysis 24/7 and I plan on making the best of it, because the clock is ticking again - I am living on time borrowed from a very generous dead man.
I look at it this way:
As a person with 2nd generation PKD, I grew up knowing that my kidneys would fail. So it was a race to get a lot of living done in a compressed amount of time. "Live fast" was my motto.
When I started incenter dialysis - my time was filled with trying to make my situation better. Trying to stay positive, stay healthy and stay up on medical advancements in dialysis. IHD was priceless in that battle. The people and the posts - AMAZING.
When I switched to solo home hemo - my time was filled with learning and dialyzing. Again, props to IHD and my Rockstar. I could not have done it so easily without all of your help and support. EPOMAN made this forum open for everyone, what a gift and what a legacy. Thanks to him and our admin team, the whole journey is right there at our fingertips - the good, the bad, the tragic. All there to make our lives a little less lonely, and our disease a little less overwhelming.
Like I have always said, the medical part is easy for me - it is the emotional journey of CKD that caught me by surprise. It is just as true with a transplant as it is with dialysis. We need to tend to our emotional well being just as well as we tend to our physical well being (and in some cases -better! CAREGIVERS, THIS MEANS YOU TOO!)
I'm not posting as much anymore - I found that I was living my life on-line, and that is habit forming (and can be very depressing). I didn't quit cold turkey, but I have gotten more involved with CKD advocacy on a person to person level. We forget that the internet is a fishbowl, and the majority of people aren't as lucky as us. The don't have computers or don't have the internet or worse only use the internet for e-mail, Facebook or games.
When I meet people like the last group I mentioned, I try to gently point them to IHD. A lot of people find IHD when they are at their wit's end, in desperation - they type in the words "Hate dialysis" and google throws them a digital life preserver, a link to a special corner of the web where people will share, commiserate and welcome you with open arms (and then use flame throwers in the political threads) just like any family, anywhere, it is universal and all of it should be cherished, the camaraderie and the conflict. (that is diversity in action)
So, that is my six month update. I wonder what the next six months will bring???
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Meinuk, What a beautiful post. And you are doing exactly what one should do after a transplant---living! Your words are full of wisdom. Thank you for sharing your thoughts, experiences, and your friendship. :cuddle;
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I found this site a year after my transplant. I can relate to alot of your thoughts. The slap in the face is still being considered CKD5. The effects of the drugs long term can be surprising. The blank look from doctors I get when I am dealing with other medicals issues that have come up can be frustrating.
I once read something a woman that had a transplant wrote. She said that she was constantly improving. I agree with her 100%. As the months have gone by I can not believe how much better I am. I think you will feel that way too.
On behalf the people you are helping with your advocacy work, "thank you". For devoting your time and effort supporting others with the challenges of Kidney disease. :clap;
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Meinuk
I've missed reading your posts and thank you for this wonderful one. I hope your "kidney" keeps working for a long long time.
:bow;
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:waving; Wow a year has passed already!
It is wonderful to read you are doing so well. I too hope your little internal dialysis bean continues to pump away for years and years to come.
Take care Anna and "Live Fast" (ok maybe a little slower) once again. xox :cuddle;
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I LOVE YOUR WRITING!!!!
:beer1; my friend, live your life,, I am so proud of you!
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That is great but it would be nice to spread your wisdom and view points in the IHD forum a little more. I'm not asking you to get addicted, just share your wisdom occasionally. :-* Good for you!
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So wonderful that things are going well for you Anna. You know what a fan club you have here at IHD and I hope you get many many years from that kidney.
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Thank you for your 6mos. update.
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:2thumbsup;
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Congratulations on the first six months! Looking forward to many more positive up-dates! :cuddle;
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:yahoo; Congrats on 6 montrhs , ( mine is 6 months next week its feels great doesn't it)
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Meinuk, congrats on 6 nerve wracking months. The wondering.. the waiting for lab results. After the first year you will relax. There will always be the little rain cloud that follows you concerning "when with this quit on me" but you just think of that little rain cloud as a motivator to keep going and running from it.
Keep taking the drugs and keep active and you will do well.
I miss your posts, but I'm with you.... don't live your life online... go out and make it happen!
Best of luck! :cuddle;
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A great post. Thanks for sharing your thoughts. I read it to my husband. He's not much for talking about his transplant experience, but he said he could relate.
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Congrats Meinuk! I hope that "eventually" means many decades in the future.
Your posts have been inspirational (and they're all still here so you CONTINUE and WILL CONTINUE to be inspirational). So that means: GO LIVE LIFE!!! Enjoy, and stop by and report when you can.
Alene