Showing posts with label Transplantiversary. Show all posts
Showing posts with label Transplantiversary. Show all posts

Tuesday, May 9, 2017

When the Scars Fade

I lay in bed the other night alone. The covers were off and the ceiling fan was whirling around. It was a pretty warm, inside the house and outside. And I lay there, watching the fan and not sleeping, because Ben was downstairs watching the NFL draft, and also I couldn't allow myself to fall asleep because I hadn't yet taken my immunosuppressants. 

I decided to run my hands over my skin.  My arms mostly and then my stomach. Sometimes I like to feel places on my abdomen where surgeons have cut me, and I smooth my fingers over each area,  pressing into the tissue. I like to see how deep the indents are, if there are any.  Just about all of the "gunshot wounds," as Ben calls them, are now are identified by raised lines of lighter than my normal skin--the kind of skin that forms when you cut yourself and the body tries to heal. This is called scar tissue, and it's what they say most of my kidneys were covered with by the time they both failed.  

Much lower on the right side of my abdomen, getting closer and closer to--yes--my pubic bone is the six-inch scar where my transplant surgeon cut me and inserted my dad's kidney. The strange thing is that I almost hesitate to call it a scar anymore. The line where the incision occurred is so thin, so light and so faded that it's pretty difficult to see it. I feel like someone would have to put their eyeballs really close to my stomach to see that there's a piece of skin that just isn't like the rest that's unbroken around it.  The other scars from other surgeries--my appendix, dialysis and the removal of my ovary--are pretty clear. This one though, my transplant scar...even I am surprised by how much it's changed over the past four years. Yep, four years ago, my surgeon sliced through my skin, muscle, fat and other tissue and put in a new kidney.  

I've been struggling lately to cope with my health lately and the fact that I HAD to have a kidney transplant to be OK. I couldn't be like everyone else and just avoid doing this and keep living a normal life. I had to have a transplant.  There wasn't really a way around it. The experience of kidney disease, kidney failure, the transplant and even some of the related events that followed (CMV, rejection, no immune system, miscarriage and so on and so forth), was so traumatizing. Emotional marks were made. But four years later the outward physical evidence of that period in my life is starting to disappear.  The area where the surgery actually took place is mostly healed. 

I've been wondering lately if it's time for the rest of me to become "mostly healed," too.  




Wednesday, May 4, 2016

Three

I read an excellent blog post about kidney transplants. I think the first paragraph describes how I feel about all of this, now that I’ve completed three years with a transplant and am entering my fourth:

Thursday, June 18, 2015

Kidney Update: Two Year Biopsy

The results are in!  Er...they were in about a month ago.   If you've been coming back to this blog over and over hoping to see an update on my kidney biopsy I had in April, here it is!  I didn't meant to keep you on edge.  And just so you know what you're in for, I'M O.K.


Wednesday, April 30, 2014

Transplantiversary-- What Happens When I Get Sick Post Transplant

The Transplant-iversary

Nobody said the journey would be easy.  But after being healthy for even just a few months and having people tell you how healthy you are, and how great you look, it’s not hard to let to the thought consume you that maybe you are out of the woods; that this challenge has been pretty easy.  


From May until December, the remainder of 2013,  I never fell ill, even after watching several coworkers, my dad and Ben latch onto colds and flu-like illnesses as the temperature dropped.  I felt like my dad’s kidney had not only given me more energy and better blood levels.  The kidney had also seemingly given me some kind of invisible force field that kept me from getting even the weakest sore-throat-inducing virus floating around in the air.  It was nice, for a while to imagine that I, the girl who technically had the most suppressed immune system among my friends and family, was actually insusceptible to congestion and mucus-filled coughing. Obviously, me having a kidney transplant meant that the antidote to every infirmity, disease, illness, sniffle was in my blood. YES! Superman status, achieved, I thought.

~

January 2014.  My perfect months of not really rigorously washing my hands like I was supposed to and only using hand sanitizer some of time seemed to come back and bite me.  One day I was fine, living the dream of being in perfect health. The next day, nasal congestion and mucus had arrived, jamming a flag into the middle of my sinus cavity and screaming "We're HERE! We HERE!"  It's not like I had never had colds before.  Perhaps me being overzealous about "doing things the natural" way actually made it worse. I stood in front of the stove with my head drenched in steam and my nostrils getting singed, imagining it was actually working.  I'm still not sure if it was working. I found out from my nurse coordinator that I could take sudafed it turned out.  So I drove out into the midst of a snow storm and bought a box of store-brand decongestant and slept for the first time in four days during that time.  Recovery:  one weekend of Sudafed, sleep and trash TV.


~

March 2014.  I blame Vegas.  I was touching all kinds of hand rails and drink glasses. As well as those little chips they give you when you actually win money while playing black jack.  I want to say that's how I contracted CMW aka the virus that everyone, except for me and like 10 people, has had at one point in their lives. At the start of my symptoms,  I'd woken up with a fever.  I rode the bus into DC to cover a conference for work...standing...hauling purse, lunch box, and laptop bag...half a mile uphill from Dupont Circle Metro...with a fever. The runs came soon after that.  Recovery:  8 weeks/ongoing sort of, Valcyte, and moving really slow.

~
April 2014.  I stayed home from work after feeling horrible and waking up with a bit of a sore throat and a headache.  I took my temperature and I had a mild fever.  Nothing I didn't think I could sleep off. Then I vomited.  Twice.  My next course of action was to call my doctor, who suggested I go to the E.R. and once there he suggested I admit myself to the hospital where I had my transplant surgery for overnight observation. To my surprise, what the doctors observed via numerous vials of blood taken from my body was that I kind of had no immune system.  The medicine that I had been taking to resolve the March 2014 incident, combined with the medicine I was taking to suppress my immune system, had weakened my bone marrow production SOOOO MUCH...that basically it wasn't making white blood cells or red blood cells or much of anything else at the moment.  Meaning...I had no immune system.  Yeah.  That happened.  Recovery:  four days in the hospital, two blood transfusions, two IV sites, a lot of blood drawn, a lot of prayer, 90 seconds of crying, and one full length movie (Pacific Rim).  

~
Things were going well for for so long after my transplant!  I felt indestructable.  And then January happen, and since then I've been sick almost every month except for February.
BUT...I've also been HEALED and RE-HEALED in every month...except for February, I guess because I wasn't super sick then.
Every time I had a fever or felt a little off, sinceI hadn't felt that in a really long time, I just assumed my kidney under attack.  That it would be rejected soon. That I tried my best, and we all hoped for the best, but that it just wasn't going to work.

But I was healed and re-healed. 
I was healed and re-healed.  
I was HEALED and RE-HEALED!!!  
Superman status, achieved.


“Then my favor will shine on you like the morning sun, and your wounds will be quickly healed. I will always be with you to save you; my presence will protect you on every side."
Isaiah 58:8

Monday, April 28, 2014

Translantiversary--How to Stay Healthy Post-Transplant

The Transplant-iversary

The one-year anniversary of the day I received my kidney transplant is approaching.  Yesssss!  I'm excited about it.  Why?  Because it means I'll have accomplished what seemed like a daunting goal nearly 12 months ago. The goal-- to keep my kidney.

A lot of things could have happened between last year and this year.  I could have gotten really sick.  Or, I could have decided to not take my medicine for like a whole week.  Or, I could have just had bad luck and had the kidney fail.  

But we are SO CLOSE y'all!  So close to being able to truly breathe that sigh of relief knowing that I survived the first year of living with a kidney!!  Surviving the first year of marriage doesn't get here until June 15.  The jury's still out on that goal.  

If you have a transplant, I think it's important to accept that the new kidney does not have kidney disease.  It has taken me all year basically to get used to saying I don't have kidney disease anymore.  You spend so long having one thing be "your truth."  Once that thing is no longer the truth, it's not easy to completely switch into a new mindset, even if the new truth is so much better than the old one.  I had to really learn to walk in this new space of being healed and free from disease! But, it's just as important to recognize that we have some control over our health. And even though I'm OK now, I like to try to maintain some semblance of a healthy lifestyle, even with a suppressed immune system.  

Follow a healthy diet.  So the transplant fixed 98 percent of my health problems. But I knew that I couldn't just go all cray-cray and dive into a bowl of heavily salted cheese puffs just because I am walking around with a working kidney.  I was determined to maintain some piece of the diet that I've been trying to remain dedicated to for the previous 10 years prior to my transplant.  I absolutely love food.  I live to eat, for real.  And let me tell you one thing that I've learned:  that desire for food just grew stronger after receiving a kidney transplant.   No joke, at a recent surprise party I thought someone was going to have to burn the pizza boxes because I was CONVINCED that I needed to eat an entire pizza.  

Since the transplant, I've continued to follow the wonderful low-sodium diet.  It's the only diet you'll ever hear me advocate for on this blog.  I eat just about everything except for raw fish.  So I'm not the person who's gonna tell you to just eat kale.

The key to doing this low-sodium thing is to cook your own damn food.  That's the number one way to control how much salt you put into your body.  Too much salt = high blood pressure = possibly kidney disease, heart disease and other s*%t you probably don't want happening to you.

Attempting exercise.  This is definitely an area that I struggle in.  I wake up every morning to exercise, saying "I hate mornings. And I hate working out" without fail.  I'm just...not a gym rat. I like the feeling that I get after working out but during the exercising process, I'm less than thrilled.  However, I have to do it now that I'm "normal."  My post-transplant diet allows me to eat more foods and my cravings are stronger because my kidney is working correctly.  Which means...I can gain weight!! It's not uncommon for a transplant recipient to receive an organ and come back a year later with an extra 50 pounds on them.  I don't want to be that person.  So, I cry and curse and force myself to do lunges every morning until I forget what I'm doing and where I am.  

Taking temperatures and blood pressures.  This kind of saved my life a few times.  If I was ever having a day where I felt crappy I'd take my temperature to see that yes, I was indeed feeling crappy with a low-grade fever.  Before my last stint in the hospital, I'd taken my temperature every day and it was normal.  The day I went to the E.R. it had spiked to 100 degrees. I say this because, this isn't something regular people do--take their temperatures every day.  But it's something transplant patients should do frequently to make sure they don't have some kind of infection brewing underneath the surface.  Before this, I didn't know what it felt like when you have a temperature. But now I do, and that makes the difference between catching something that could destroy your kidney super early as opposed to finding out later, after you're back on the waiting list for a new organ.

Keeping a transplant healthy is not difficult at all when it comes to the things I can control. Its the other factors, the natural way our bodies are built to defend against a foreign presence and the effects of medicines that suppress our immune systems.  Those things, we can't control. But then I guess one of the best ways to keep yourself healthy post transplant involves building up a good attitude about your new situation.  Not worrying. Learning how too celebrate and be thankful for what you have in that moment. Understanding that even if you have CMV or forget a dose of meds, there's still a chance to fight to keep what we've been given. 



Throwback Bonus!
 A portrait of me, running around like a chicken with no head or wings, the week of my transplant last year.  Enjoy (again)!