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Author Topic: Long time, no see!  (Read 564 times)
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Posts: 283

My son Roddy McSleepy at 6 months! sry pic sidewz

« on: October 04, 2019, 06:41:59 AM »

I was looking for old pictures from MySpace, and remembered that my MySpace and IHD names were the same. I actually remembered my password, too (how? It's been years??)!

I wanted to check in. I received a transplant on Jan 16th, 2013 from my then-husband. We just finished our divorce up last month...no, two months ago. Things are happy. My son is almost five, I've been with my boyfriend for three years...since about 7 months after my marriage unofficially ended. I never realized how long divorces take!
Everyone gets along.

I've gained a LOT of weight, have injured myself lots, and am tired a lot. Of course, I have a preschooler.

After my ex and I sold our home, I had a rough time moving and no energy. Started being super late, making mistakes a lot, and got pulled over and ticketed like, 4 times in a month.

Eventually, I couldn't stay awake. Luckily, my BF spent the night this particular day, bc I had my son with me, but couldn't stay awake, then started throwing up.

But DON'T WORRY, kidney was fine :)
It was Mono.

I never got back to my old energy. My Infectious Disease doc monitored my Epstein-Barr virus load (causes mono) regularly, and started seeing it spike. Did a CT scan, found 6 or 7 big-ish tumors in the smooth muscle tissue of my liver. Scary, but I feel okay.

Crazy, though...I took the call from hospital nurse during a tutoring appt bc I thought it might be important, got the news about tumors, and had to act like I hadn't just heard that.

It's been 2 yrs since then. I'm tired and don't...I think closest thing to say is, don't care enough. I used to be super anxious and care TOO much. I'm on Lexapro. Maybe that's the problem? But, basically, things don't bother me, though I think they should.

Cool news: there's an experimental treatment they use on ppl with PTLD (post-transplant lymphoproliferative? Disease) on my (extremely rare, inoperable) tumors. Unknown if they're cancerous, but they grow slowly.

I was 119 lbs on day of transplant. Now 190. In PT for back, working to get into healthier shape. In good spirits, but I get hospitalization sick if I work full time. Now freelancing and tutoring. Kinda poor :) Home with my son, who also has preschool.

Just checking in. Loving life. Want energy back. Hope you're all well. Do what your docs say! And label your water bottles....that's how I got mono :/

35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
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« Reply #1 on: October 04, 2019, 07:26:29 AM »

Thank you for the update, you were here long prior my time but its great to read your history.  I'm glad your transplant is still good!

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #2 on: October 04, 2019, 08:28:15 AM »

Hello and I am very sorry what you have gone through and at the same time I am happy for you that your kidney is alright!
If I may, could I please ask you a few questions?
Is your weight-gain connected to your anti-rejection-medication?
And are your injuries a result of your tiredness and difficulty to concentrate enough?
Have your doctors explained your energy-loss and could it be due to the kidney-transplant?
This Epstein-Barr virus, did you suffer from it already before your transplant or did it "come along" later and most of all : how did it come along?
And those 6 or 7, as you say, big-ish tumors in the smooth muscle tissue of your liver, do the doctors have an explanation for them and/or an idea what to do about them?
I have just been reading-up on PTLD and it really sounds very scary! I did not even know of its existence and I am very sorry that it “hit” you and I very much hope that your doctors find the right treatment for you! Fingers crossed!
What did you mean that we should label our water bottles and that is how you got mono?
I do hope I did not ask too many questions, but your story made me feel very sorry for you and it also made me wonder and because of this I hope you don't mind my asking, especially since I also feel very often extremely tired after my transplant (still in my first year), but the doctors have told me that my tiredness during my first year after my transplant is not something to worry about, since it does take some time for the body to find its own rhythm again.
I send you my kind greetings and many thanks for coming back and updating us, best wishes from Kristina. :grouphug;

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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