Tuesday, May 7, 2013

Scar/Swelling Progression Pictures

I know a lot of people probably don't want to see this but I also know that before the surgery these type of pictures were what I actually looked for the most. Hopefully the title will deter those who don't care for this.

You can really see the swelling drop, especially in the first few days. My size still fluctuated on a daily basis for the first 2 months but I think it was mainly only noticeable to me based on the fit of my pants.

Day 3

1 week
2 Weeks
3 Weeks
3 months
(I just came from yoga so you'll have to ignore the lines my pants made. We also don't have a large mirror in our apartment so I couldn't take this one at the same angle as the others)
Not too bad, although I'd be real happy if it eventually becomes the same color as the scar you can barely see just to the right.

Panic and Peace

Since the surgery, especially the first few weeks, I had a lot of anxiety. Mainly around thoughts of "is this normal?"

My left foot is slightly swollen, could this be a blood clot?
Am I not walking enough?
Am I too tired?
Is my digestion supposed to take this long?
Why do I feel dizzy every time I stand up?
Am I drinking enough water?
Did I just move in a way that I shouldn't have?
Why is my blood pressure so low?
(I had the blood clot checked out at the ER and was fine. I didn't want to mess with that one! As far as feeling dizzy upon standing this was most likely a lack of electrolytes. I added in some coconut water and celtic sea salt and was fine)

Now after about 3 months the fears have changed but are still there.

I just slept all night on my left side and now it hurts, could I have hurt the healing internally?
Am I going to struggle with fatigue from now on?
What if I get sick?
Is my kidney functioning okay, and at a good percentage?
Am I eating food that will strain my kidney or aid kidney stones?
Is this enough water?
Why is my blood pressure still low?
Did I compromise a lifetime of health?
Am I stressing myself out?
Will I ever stop being afraid?

I know donors can struggle with anxiety afterwards and I didn't want to start down that slippery slope.

About three weeks ago I joined an amazing yoga studio and I try to attend a class everyday. It's amazing how calm and strong I feel afterwards. The fears are still there but I have more power over them. I can remind myself that I am still healing, pain and fatigue are normal. I'm also a healthy person with a healthy diet and will continue to be so. My body can compensate even if I'm not doing the 100% best recovery method (even if I knew what that was). Added bonus, I can now touch my toes :)

Yoga has given me a control that I had lost and I don't ever intend to go back.

Monday, April 15, 2013

Emotional Barriers

Today marks 2 1/2 months since the surgery and for weeks now it has often felt like nothing happened. I feel normal. So I think it's about time to start back tracking and going over what has happened since we were all discharged. 

As you might have gathered from the complaining tone in my last posts the time after surgery was difficult for me emotionally. Before surgery I read that often times donors go through a period of depression after donation for two reasons. One the surgery is highly emotional in itself and two your hormones have to rebalance. This was true for me. The 1-2 weeks marks were probably the worst but it honestly started the day after surgery to some extent. 

I had so much support from my family and friends but I still felt alone and isolated. I wanted to talk about my fears and stresses but felt guilty doing so around my family so I did so in small spurts and spent most nights in tears. I convinced myself that they didn't want to hear it and anything negative would be against my sister and the donation. I was really moody and had a short temper. It took me weeks after I was home to realize this was simply me projecting. I felt self centered. I wasn't the one who had to deal with dialysis and the many prescription and doctor visits that would continue through life. Eventually I learned to cut myself some slack. Sometimes people need to be self centered to work things out and that's okay. 

If I could do it again I would consider staying close to my family but make sure I had my own room to decompress (at points there were 9 of us crammed in a small 2 bedroom apartment). I would also have asked if the donor advocate was a part of the recovery as well as the application process. If as in my case they aren't, I would make sure that I had someone who was not in my family to be there for me. This is such an emotional time that I think being selfish is a little necessary at times. Having someone to talk to, not involved with the recipient, would be helpful. I think my family would have appreciated this as well. Close quarters with a bad tempered girl is not fun.

All in all things passed and I am back to my generally happy albeit stubborn, opinionated self :) 

Thursday, February 14, 2013

Day 4 - Discharged X2

Before the surgery had even started they told my sister that most recipients are in the hospital for 5-7 days. However, since she has Lupus they would most likely want to keep her a little longer to make sure everything was going okay. She was discharged on the morning of day 4!

She got her grocery bag of new medications and we all went back to the apartment. Our days are now spent walking around the parking lot of the complex. It's nice to be outside again.

Day 3 - Discharged and Pregnancy Pictures

Morning came and the doctors did their general drive by. All looked good so I was being discharged. Sweet!

I'll be honest these meetings often made me feel a little swept under the rug. I know they are busy but they still felt cold and left me feeling ignored. I only met my donor advocate and psychologist for 30 minutes that one day a few months ago. I think this is horrible. There are so many emotions after having this surgery and the hospital does nothing to address these or even prepare the donor for them. It's almost like once the surgeons get the kidney the hospital could care less about you... I know it isn't like this exactly but I think the hospital (at least ours) was severely lacking in this area.

Either way the nurse came in and told me I could put on my real clothes and wait around until my discharge papers came through. Great! I had bought some comfy pants a size up just for this day. When I tried them on, however they were too small! And not by a little. Awesome.... I looked in the mirror the first time being able to see all of me and not just a baggy hospital gown. I looked pregnant. I should have bought some maternity pants. Luckily I also had some stretchy yoga pants and those seemed to fit okay.

My digestion still wasn't up to par so my stomach was a bit distended. As in it was rock hard if you touched it. It has to go back to normal eventually. Right?

How many weeks would you guess? From this side you can't see any incisions so I really do look pregnant! These are the pants I bought up a size that won't even go over my hips and were also giving me  serious wedgie :) 
Yoga pants are SO much better!
Since the surgery was in Florida and I lived in Kansas being discharged didn't mean going home, or even my parent's house for that matter. The transplant center is a ways from my home town so my parents rented a 2 bedroom apartment where we were all staying. It was a nice place though, and the only real struggle I had here was trying to sleep. Sleeping flat is not an option. I made a sort of sloping contraption out of three pillows and snuggled on those. It seemed to be mildly effective. I think it is still too soon after surgery to expect much more.

Day 2 - Swelling

At some point during the night I was switched from a normal bag of fluids to one with Potassium Chloride. I am not sure if this was something particular to me or if this is common but this stuff was painful at the IV site and by the next morning I noticed some odd swelling. I was only swollen on my left side. Only my left side. It was explained to me that as the fluids came in my body was processing them and taking a little bit to normalize but with a constant supply entering my left blood stream it couldn't process it fast enough and was swollen a bit. It was really weird but it didn't seem to effect much.

The doctors came and went. Bowel sounds?  Not much. Using the Incentive Spirometer? A lot. Incisions? Looking good. Any questions? Just the swelling. Alright, you're doing great.

I had forgotten to mention it in my previous posts, but during surgery they also shut down your lungs and put a tube down your throat to breathe for you. Pneumonia is a main concern afterwards so they give you a device that you inhale through trying to keep a little button in the smiley face as long as possible. They recommended 6-10 times an hour when awake. If this doesn't work well enough they want you to cough. I'm not sure how often I used it but it was a lot. A cough felt like someone poured hot acid on my diaphragm where the muscles had been cut. That little smiley face was my best friend for a few days.

Right after they left the nurse came in and said since I wasn't using my pain pump so they were going to take it away. I could just request a shot if I needed it. I guess it's a use it or lose it type of thing and they keep a pretty close watch on it. Although, I was happy to see it go. Besides the other side effects I was having, the narcotics slow down digestion so it really wasn't worth me using.

So the day basically passed the same as before; pee, walk, sleep, repeat.

In the afternoon, my hand had become really red in addition to the swelling. They had wanted to move the IV to the other hand but I had accidentally gotten that hand caught on the bed and ripped it out the night before. They were going to put a new one in and put me on oxygen and had me watch the TV to avoid what happened last time but she said it wasn't quite working and gave me a break from the IV instead and clamped it off. It was really weird to walk the halls without the IV pole to lean on. You get so used it and it becomes a comfort almost. A few hours later though and I was back on the IV.

It had also been decided at some point that my lack of bowel sounds needed to be addressed. My sister on the other side of the hall had a bunch! Curse her. It was quick, unpleasant, and it worked. I don't think any other details really need to be given than that... I could also eat real food now too.

So back to the normal routine.

Sometime in the middle of the night one of the nurses had come in to check my vital signs and saw my IV hand and called in the other nurse. She also suggested moving the IV to the other hand but this time I was hooked up to the vitals machine. At the mention of another needle my pulse shot up and set off the alarm on the machine. The nurse pleaded with me to calm down. She said there was an order put in to disconnect my IV once this one finished and I would be done. So I opted to leave my other hand alone and just wait it out. My hand was killing me at this point but I was still terrified of the not breathing episode and wasn't keen on trying it again. The other nurse said he would record my pulse from before the IV was mentioned :)

I tried to sleep the rest of the night to pass the time quickly and it was removed about 4 hours later. Oh happy freaking day! It's crazy how they can cut through muscles and tissue and the pain is bearable but my hand has a reaction to something and it's horrible.

She also let me know that I would most likely be discharged the next day!
My niece loved playing with the hospital beds. 

My Parents, brother, sisters, 2 nieces, and me. 

Monday, February 11, 2013

Day 1 Incision Pictures

These are three of the four holes used for the instruments. The fourth is on my left side about the bottom of the rib cage. You can kind of see in the middle one some of the writing that the surgeon wrote during pre-op to mark the kidney they were taking. There is also a weird indent on the middle incision. I'm not sure if that came across in the picture too well. Along the bottom is an old scar from a boating accident about 10 years ago.

 You can see the bottom incisions here where they pulled the kidney out of and the top incision is still covered by the hospital gown. You can also tell all of the swelling/bloating here too as you can't even really see my hip bone.