Another year of changes

Wow, it's been about 10 months since my last post. Where to start...let's see. We had a baby boy who is now 5 months old!!!

This is actually a birth picture, I'll upload more recent picture soon.

Health wise I could not be better! Everyday I remind myself this second lease on life was a gift, and I work hard to take it for granted.

Got a new position at work, much less stressful and it works around my daily life.

Coming up on my 2 year anniversary of my transplant. Ohh I'm only taking (2) pills daily of Rapamune, which is considered extremely low. The pills are a triangular and about the size of baby aspirin. I point this out because many other transplant recipients take a cocktail of meds throughout the day. Once again I am so fortunate to only take so little medication. My labs are great, in fact my creatine is hoovering around 1.5. That's a long way from my first diagnose of renal failure with a creatine of 14!!!

I will post again after my 2 year visit. Until then...

6 month kidney biopsy today

Well...well...the day has come to have my 6 month protocol biopsy to ensure continued good heath of my new kidney. Below is a picture of all the assorted tools/instruments to used during my procedure. Needless to say, I'm less then thrilled about having this foot long needle thrust into my lower abdomen. In addition to this procedure, I have also undergone an MRI with dye, which was of course injected into my arm. Just before being prepped for this biopsy I had 6-8 tubes of blood draw. And the big show is the biopsy.

So, had the biopsy, and it was nearly as terrible as I imagined. It began with two needs to humble the area, one shallow and the other deeper. Then came the foot log need gun (The gun actually extracts the tissue sample). Fortunately, I didn't actually feel the foot long 18 gauge needle, although I did feel the movements of the needle while inside me. 2-3 samples where taken, each requiring a new stick with the big needle. Afterward, I was consoled with a band-aid and instructed to lay flat with a 5 LB weight at the entry site for 3-4 hours.

Doing Great

Today, is 5 months and two since my life changing transplant. I wake up everyday thankful for my new lease on life. My energy is amazing; for instance we went dancing last weekend and Apyrl got tired before me!

Since the weather is breaking and the pollen count is normalized, I'm planning many outdoor activities. I can't say enough how blessed and fortunate I feel to be sitting here today without the aid of mechanical devices to filter toxins from my body.

That's it for now...

12 weeks since surgery

It's been about 12 weeks since the transplant and all is well. I've resumed normal activities, energy levels are on par with that of my early to mid 20's. I've begun working out, although I'm still restricted regarding heavy weights so it's basically cardio and lighter weights. My waist size has gone from 46/44 to 38/40 since the operation.

Once the weather breaks I anticipate more outdoor activities and enjoying the great weather of the south. This new kidney is simply amazing...my donor has provided me a new lease on life that will not be wasted.

Also, this research therapy is fantastic. I only take a 4 pills daily, verses the hand full of toxic medications taken by the typical kidney transplant patient. The only draw back is monthly injections/infusions, but it's well worth the time. The icing on the cake is that in less than three years I'll be phased off all the medications and infusions. The overall result of this new therapy is a chance of retaining this new organ for the reaminder of my lifespan.

What a true blessing.

7 Weeks....

Yesterday was 7 weeks, and all goes well. Since my last blog I had my stent removed...it was somewhat traumatic, but as painful as I first thought. Not to say I would like to go through it again anytime soon! 

Let me explain the process...first I was led into a type of mini operation room with a examination table located in the right corner surrounded by monitors and various equipment. Next a nurse asked me several routine medical type question, then she asked me to disrobe and handed me a hospital gown. After I got changed I was asked to get on the table, at this point the nurse began prepping ominous equipment on a table near me. I saw the nurse squirt generous amounts of KY jelly on two sections of the table, then she began to assemble the scope to be used during the removal. The scope consist of handle with controls, and a long black snake about 2 feet long. After the prep it was my turn...she took out a funnel type instrument and screwed a syringe full of lidocaine into the larger end. This where it began to get crazy...she grabbed the head of my penis and jammed the smaller end of the funnel into the tip of my penis! All the while she's telling me to relax and keep my legs open, while she pushes this lidocaine up my penis!

Once the nurse completed her prep, it was show time. The doctor suddenly appeared and without hesitation approached me, had me sign off on the routine legal matters and promptly began! This guy took the snake device and began feeding it up my penis, while trying to hold a conversion with me. Imagine being rapped while rapist ask you how your day is going, maybe about the weather, etc. So at some point the doctor ask me to look at the monitor to my left so I can see the live video from within my bladder. He shoes me the stent, remarks it's 14 french on size before grabbing it and pulling it out of my bladder/kidney/penis.

Oh yeah, at some point he mentioned something about passing water. At the time I was per-occupied with that 2 foot snake hanging out of my penis to ask questions. Afterwards I noticed everything below my waist felt wet...the nurse didn't seem like she wanted to answer questions about whether or not I pissed on the table. I can only speculate I pissed on the table!

So, there you have it...stent removal 101. 

Ohhh I forgot to say Happy New Year to those who still follow this blog.

Until next time...here a few pictures...take care!

Lil over three weeks

I'm doing great, nearly full range of motion with little to no pain. I still feel pain when doing certain things, but in general I feel improvement from day to day.

I drove myself to barbershop today...felt like I ran a marathon when I returned home. I just it takes time to regain stamina after laying around for three weeks.

Another side benefit is weight loss. MD's say it's excess water weight being stripped off by the new kidney. Not complaining in the least, I needed to loss a few pounds...I should be beach ready by summer!

I want to thank everyone who has supported me through this journey. This ordeal has changed my outlook on life and my understanding of the nature of good people. I hope to be able to pass on good deeds in the future.

I'll post some pictures from the hospital once I locate my transfer cable for the camera.

Two weeks out

It's been just over two weeks now since the transplant. Revocery seems to get better from week to week. Currently, I'm schuduled to visit the transplant clininc twice a week for the next month to check my progress and recieve my Belatecep infusion. Some days are hard to get out of bed, but I've been managing. All in all things are going well, just wish I could fast forward to the easier days.

Nexr major event is to have this stent removed from my bladder...not looking forward to that one!

Post Transplant Day 2

OMG I've got a great freaking new kidney! I feel like a million bucks and my mind is clear and unburden with my future. It's positivly amazing how miraculous the change in health over a period of 24 hours.

Aside from the usual pain of recent surgery my body feels amazing. I looks forward to resuming lost hobbies and being active with my family, espeically my daughter.

More to come!

Here we go...

It's the day before the transplant and I'm understandablity a little nervous, but excited about regaining my good health. Today, I plan to relax and get things in order for my next few days in the hospital.

Pre Op

Just got call from hospital to come in 11/11 @ noon for pre-op and consult with surgeons. The operation has been confirmed for 11/19.

Transplant Date nearing

Looks like I've got two possible dates for surgery. The dates are 11/17 and 11/19, which will be confirmed sometime early this week. It feels somewhat surreal now that the time is drawing near. Apryl has told me a few horror stories, but I'm still feeling good about the operation. I'm fortunate since I'm otherwise healthy and should not expect any complications.

Let's see, I'm being presented with a couple options regarding the surgery. First is the traditional transplant and the other is research based. The traditional relieves on 5-7 meds per day which can be harsh on the body and new organ, which could lead to shorter organ lifespan. The other is research based which uses new medications that are less harsh, which might man longer organ lifespan. Problem is research has only been done for a short number of years, whereas traditional has been monitored for the last 30+ years.

I hope to gain additional information on the positive and negatives of each within the next few days.

And, I believe that's it for now...

Best News Yet!

Just got word from my donor, all his renal evaluation test have been completed and it goes to the surgical board on September 2nd at 1PM. One step closer to good health!

I'm not the most sensative guy, but this news brought a tear to my eye. The fact this ordeal is nearly over, and that someone out there is generious enough to share the gift of life.

Donor Update

Brian, my donor continues to keep my updated on the evaluation process. He just got contacted yesterday indicating all test are good and things are proceeding. We can only hope this process is coming to an end soon and we can got on with the show!

Anyway, had yet another doctor appointment today. Sounds like this form of dialysis is failing. MD wants to perform more test next month and recommend changes. Pretty upsetting news for me since I'm only focused on transplant, not hemo as option. So, it's a race to see which happens first. Although, I've vowed not go the hemo route...no matter what!

Ohhh, wanted to say thanks to Charlene and Tracy for supporting my on here! I really appreciate the words of encouragement!

Transplant bound

Not sure if anyone still reads this stuff, but I wanted to give an update on the transplant process. my donor has moved to next phase of testing, which is a test of his kidney function. I'm told the next phase is clinical consult, then the clinical board meet to determine final transplant eligibility. Once this last step is complete, the surgery is scheduled.

Things are looking good....

Let's see...this past weekend we had my donor over to the house for Sunday diner. It was great having him join my family for diner and spend time talking.

So far so good, Brian has done everything required by Emory to complete donor evaluation to this point. At this point we're waiting for Emory to contact him for phase 2 testing. Once he passes the pre-eval testing then he will be brought back in for a two day evaluation. Barring any medical issues the next step is setting a date for transplant. Keeping my fingers crossed.

I will keep posting as the process continues...right up to the day of the transplant!

Angel named Ancel

Well, I suppose it's true...good things come to those who wait. Last week, I was in need of someone to move a heavy TV from the first floor to the second. After some thought, I turned to Craigslist where I posted an ad. Several people responded with various offers, from the insanely high to just desperate replies. As I reviewed the many offers, one caught my attention. An arrangement was made with "Brian" from Ancel Delivers.

It's always feels risky inviting strangers into your home, but I felt instantly comfortable with Brian when he arrived. I could tell right away I made the right choice in movers.

After the move was done, I proceed to write a check for payment. Brian offered his drivers license and business card to complete the check. I noticed Brian was listed as an organ donor. Just making conversation I mentioned that I was in need of a kidney transplant. Brian seemed interested in learning about the process so I explained in some detail. Still impressed and happy with the TV moves, we parted ways.

Later that afternoon, I received a text message from Brian indicating he was the same blood type and willing to donate. After reading the message three or four times to confirm what I was reading was correct, and collecting my thoughts I replied. We went back and forth exchanging information and my gratitude for this most charitable gift.

True to his word, Brian contacted my transplant coordinators and began the process. Once again it's out of hands at this point, although I feel extremely hopeful this was meant to be.

It never fails to amaze me how giving some people are in the world. Words can not express how blessed and fortunate I feel to have this man make this beautiful, life giving gift.

I look forward to updating this blog with more good news soon.

Been a little while so here goes...

Ok, my friend was tested but was unable to donate to due his own issues with blood pressure. I have however gained my full clearance (both financial and medical) for the transplant. I was listed as status 7 until recently. My kidney doctor pulled some strings to have my surgical BMI number increased a bit, along with my own weight loss cleared the way.

So here I sit cleared for take off without a good donor...

Otherwise, my health has been decent and dialysis is moving along without issues. The biggest draw back to this condition is fatigue. I look forward to the day when I can run all day long without getting tired.

Let's see what else...ohh we got a puppy recently. He's 12 weeks old at this point, black lab mixed with something else..not sure. Puppies name is "Othello". He is very mild mannered, good with kids, and seems to be quickly adjusting to our family. I think Othello is good for my blood pressure..at least when he not doing something he's not suppose to be doing.

O+ DONOR FOUND !!!

Happy days...a close friend has offered to donate a kidney. He will conduct the phone screen tomorrow and hopefully move forward with the actual physical exams. With any luck maybe have the transplant before March.

This gift has made me reflect on this whole ordeal...made me stronger and cherish life more than ever before.

I will post again once I know more.

Distrubing news....

Went for my monthly routine nephrologist appointment, which went fine as usual. The difference was a comment made while looking over my records. The comment was that due to my body mass PD is not a sustainable method of dialysis once my native kidney function decreases. Best guess is 6 months to 1 year for this occur.

So this means I either obtain a transplant, or face hemo dialysis. I recall having this conversation prior to PD placement, but now it seems even more urgent.

Death...

My mother died last week. She died waiting for a liver transplant. Without getting into much detail, I strongly feel she's in a better place. My mother suffered greatly, especially in later years from various sickness including cancer. Although, I miss her deeply and wish I had more time with her...I know she's free of pain and hopefully looking down on me in happiness. We had our struggles, but I hope she knew I loved her deeply despite our past issues.

Jane K. Lewis
9/24/50- 11/30/08

Mom, we miss you greatly. No words can express the empty void of a lost mother...it pains me think you are gone.

Love,

Your only son...