Tuesday, October 26, 2010

Positive Changes

Next week is my 2 month anniversary from the transplant. Can you believe I am still discovering new benefits from no longer being diabetic?

Check it out:

I have switched from doing blood work at the IMC hospital in Murray, to having my blood drawn at Alta View hospital in Sandy, which is only a few minutes from my house. I am also seeing Dr. Cline again instead of the transplant team at IMC. They assured me they are always available if I have any questions for them and they will continue to monitor my blood work, but it’s good to see Dr. Cline in his office again. He’s been awesome through the entire process of my End Stage Renal (kidney) Disease. (ESRD.)

Along with the usual numbers they look at when they draw blood from a transplant recipient, Dr. Cline ordered a Vitamin D and a cholesterol draw. For the past 15+ years, I’ve been on pills for high cholesterol, mainly due to diabetes. But when I called the Alta View Hospital lab to see what my numbers were, I discovered that my cholesterol is the lowest it has been in years! It's practically normal! Dr. Cline explains this is partly due to my new pancreas; however the kidneys also have some control over a person’s cholesterol. Not only that, but my Vitamin D is higher than it was during my time on dialysis, also due to my new kidney.

Whoa! Is there anything the kidneys don’t do? :)

On top of that, I recently noticed that I am no longer aware that I am wearing contact lenses. When I was diabetic, throughout the day I would sort of feel the contacts against my eyes. It didn’t hurt or anything, but I would sometimes find myself adjusting them or putting in extra eye drops. After work, I’d take them out of my eyes to feel relief. But now… I don’t even notice them. And yesterday, for the first time since I started wearing lenses, I kept them in until I went to bed. D'oh! I completely forgot I was wearing them so I had to jump out of bed and take them out. No way!

Life as a normal person just keeps getting better and better.

I still have the nephrostomy tube in me, but I’m hoping to get that removed next week, or possibly the week after that.

It’s been great to meet so many people online who have followed my story and can relate to it in one way or another. Many diabetics who are reaching the first stage of ESRD have talked to me about their own worries and experiences with kidney failure and diabetes. I welcome these comments and questions with open arms. It’s easy to feel alone and discouraged when faced with kidney failure, but you should know that you are not alone. It is a growing epidemic in the U.S., mainly due to diabetes, high blood pressure, heavy ibuprofen use, and the consumption of foods high in sodium. You are NOT alone!

I have also been in contact with people who have gone through different medical surgeries and have experienced different diseases. I am humbled and amazed at how much positivity and energy some of these people have. I look at my procedure as a positive experience because I’ve benefited significantly from it, but I hear stories of people undergoing major surgery just so they don’t die. And afterwards, they are left in pain, without pieces of their organs, and somewhat defeated... However, like all human beings with a will to survive, they continue the fight to stay as healthy as they can to be here for the ones they love.

Life is not for the weak. There is plenty of bad as well as plenty of good that can happen to us every day. We have to recognize the good when it shows itself, and we need to remember the bad is not as powerful as it might seem.

And bad things, no matter how terrible they might be, shall pass.

Thursday, October 14, 2010

Nephrostomy Tube

The week following the nephrostomy tube insertion was fraught with discouragement and frustration. I tried to remain optimistic by telling myself, “At least it’s not a rejection! And hey, I am not diabetic anymore, so this is totally worth it!” But I was leaking urine from my tube day and night. It got all over my clothes, it smelled, and I carried around a ‘pee-bag’ attached to my leg that I had to unscrew and drain in the toilet every couple of hours. Also, the pain I felt during the procedure never went away. It was a horrible burning sensation in my stomach just underneath the insertion site.

I don’t mean to complain or sound negative. Looking back, I suppose would rather have some complications during recovery rather than during surgery. So while it really wasn’t that bad, it still took its toll on me mentally.

The breaking point was when I started leaking urine from the insertion site. I leaked A LOT of fluid. Imagine peeing from a weird hole in your stomach. You can’t stop it, it’s gushing down your clothes, and you just want to lay down and cry. I couldn’t do that, so I went to the Emergency Room, then back to the angiogram team. After 3 days of trial and error, and two different tube replacements, they finally stopped the leaking. The painful burning sensation, we all found out, was from the original tube not being inserted deep enough into my stomach. Apparently, I was feeling pee rush from a hole in the tube into my open flesh. (The hole is supposed to be there, but it’s supposed to absorb fluid from my kidney.) It burned. It burned really bad. But now it’s all gone.

On the brighter side, I returned to work on Monday to find my desk adorned with kidney and pancreas pictures. One co-worker went so far as to clip a ‘pee-bag’ to my wall. (She used pickle juice and a sandwich baggie.) It looked very authentic. Another co-worker brought in kidney-shaped rice crispy treats. Ha ha! Do I have a cool team, or what?

Everyone was overjoyed to see me and treated me like a celebrity. It is good to be around the beautiful smiling faces I’ve missed over the past 5 weeks. When people ask how I feel, I tell them mentally I feel better than I have in my entire life, but physically I am still catching up. My surgery scar is nearly 100% healed, the nephrostomy tube will remain in my stomach for another 4 ½ weeks, but it is no longer painful, and it no longer leaks, and I am no longer connected to a 'pee-bag' so I am urinating normally.

By the way, I recently discovered where the ureter is located. For some reason, I thought it was some sort of muscle near my prostate, but no. It is the tube that connects the kidney to the bladder. A-ha! So now I understand how the tube is helping to keep the ureter open.
Some minor annoyances have been when friends try to give me health advice. I know it comes from a good place, so I try to take it in stride, but what they don’t understand is that I have an entire team of medical professionals telling me exactly what I can and can’t do, what I can and can’t eat or drink, and what precise steps I need to take to ensure my health. It’s not just one doctor. It’s not just one person at the transplant clinic. It’s a team of surgeons, nephrologists, doctors, and pharmacists who deal EXCLUSIVELY WITH TRANSPLANT PATIENTS. Most people understand this, but there are always a few who think they know better.

Those rascally scamps!

Anyway, the entries into this blog will probably come less frequently, but they will continue until I am completely healed and functioning normally. I may even post a few entries after that, just to reflect on my life as a new person. I still need to write a letter to the donor family. It will be hard to write, but I know I need to do it. I’m just not sure how to express my gratitude…

Thank you for following this adventure. It has been an awesome roller coaster ride and I’m glad everything is turning out for the best. Your kind thoughts and well wishes have not gone unnoticed and I’m glad you’ve been here with me. Your encouragement has really helped.

Rock N Roll!!

Friday, October 1, 2010

Kidney Rejection Speed Bumps

The afternoon following my stent removal, I went to my last scheduled clinic visit at the IMC Transplant Center. Everyone was impressed with my rate of recovery. They said my numbers were great, everything was looking good, and this is probably the last time I'll see anyone from the transplant center.

They wished me good health and bid me adieu.

That night, I celebrated by enjoying a few alcoholic beverages. It felt good to get buzzed and enjoy a night of happy intoxication- something I've haven't done in the past month. But the next morning when my alarm went off at 7:00am, I felt all sorts of crummy. I didn't want to get out of bed, and I got a crazy idea in my head that I felt sick.

Wait a minute, I don't get sick, I told myself. But I didn't drink enough last night to trigger a hangover... did I? I didn't, but I decided it probably was a hangover because I had not consumed mixed beverages in quite awhile. So I went to the IMC hospital and did some blood work, then I went back home and crawled back into bed.

Three hours later, as I lay in a heavy sleep completely oblivious to the world, my cell phone went crazy. Stephanie from the Transplant center was calling, and Chris was calling from work. Finally, I woke up and looked at my phone. I called Chris first. She said Stephanie called her trying to get a hold of me. My numbers from the morning's blood draw were way off and they wanted me to go back to the IMC immediately. I told Chris I would call Stephanie to get more details, and I would let Chris know what is up.

When I called Steph, she said it looked like one of two things. 1.) Either my body was not absorbing enough of the anti-rejection meds, or 2.) my body was rejecting the new kidney. She asked me to go to the IMC as soon as possible so they could run an ultrasound, and possibly do a kidney biopsy. (Fun stuff!) I explained that I had some alcohol the night before, however Stephanie said that probably would not affect my blood work, but she would ask Dr. Stinson to be sure.

I drove to the IMC. As soon as I got there, Steph said I looked like I was still asleep. I told her when I first woke up this morning I thought I had a hangover, but now I realize I just feel like crap, so something is definitely not right. Upon hearing me say the word 'hangover,' Stephanie remembered asking Dr. Stinson about alcohol consumption. She told me the following:

STEPHANIE: "I told Dr. Stinson that you mentioned drinking last night. He said you could go on a wild crazy drinking binge and it would have no effect on your new organs or on your blood work numbers whatsoever."

Upon hearing this, a light bulb went on in my head and I almost heard an audible 'click' somewhere in the top of my brain. It was like I had been given the key to my very own brew pub. I vowed then and there, that as soon as I am fully recovered, I am going out with a group of friends on a wild crazy drinking rampage!! (Several people are already with me. Care to join us?)

Then I saw Dr. Stinson. He asked the general questions and when it came to the question about Am I urinating, I explained that since having the stent removed, I have not been able to urinate as much as I should. It comes out a lot slower, but not only that, the volume has decreased significantly.

This information caused the doc to pause. "That might be what's causing the spike in your numbers," he said. "You may have some blockage."

So I was sent down to radiology to do an ultrasound of the new kidney. BINGO! They immediately found  some wicked blood clots in my bladder which were obstructing the normal flow of urine. This was probably a result from the stent being removed.

They had already prepped me for a biopsy (which is when they stick a needle down to my kidney and clip a tiny piece of it off to examine under a microscope for signs of rejection), but now the plan changed. They said my new kidney was swollen with fluid and needed to be drained ASAP! So they sent me to the angiogram department where I underwent an hour long procedure of having a tube inserted through my kidney, down into my bladder, and out my ureter. This created a new stent in the ureter, and also allowed fluid to pour out of me, through the tube, directly from my kidney.

I was awake for the entire process, and though I didn't feel anything inside of my kidney (the doc explained while there are nerves inside of the new organs, they are not attached to my body, so I will never feel pain from them), I felt plenty of pain in my tender and sore stomach muscles- muscles I have not used in weeks, muscles that are still recovering from major surgery. OUCH!! It really f*&^#$n' hurt.

Afterward, they had me recover for a couple of hours in a nearby room where my kidney was drained of blood-red urine into a medium-sized bladder bag. They said my pee would look red for a few days because of the blood from the angiogram and they weren't kidding. It looks like kool-aid.

Every few hours, the bag fills up and has to be drained by one of the aides. They measure the outpour each time and document the volume into the computer. I was already admitted to the hospital and the doc called up to say it was merely for observation and safety that I stay overnight, to make sure I wasn't having anymore signs of rejection. Just to be safe. I guess that's the thing with transplant patients, they like to be extra careful when doing any type of medical procedure.

Early on, I noticed the tube was leaking. I was sitting in bed and I pulled the covers out from my leg to reveal a massive amount of wetness all over the left side of my thigh. It was like I peed myself without even trying!

The nurse tried tightening the connection, but it was already secure. There appeared to be leakage from beneath a little rubber thing in place over the tube. So she called down to the angiogram team and they said the only cause would be a defective tube, which they had never heard of before. So they made plans for me to go back to the angiogram department the next day and have the tube replaced.

MORE PAIN!! I really did not want to do it, but if I had to, I had to... ::sigh::

This morning, I woke up and checked for leakage. There wasn't any. In fact, it seemed that the tube had miraculously fixed itself. When Dr. Stinson came in, he examined me and said if I wasn't leaking there really was no reason to replace the tube. (YES!!) He also said they were sending me home, though I would probably keep the tube-stent in for another six weeks. They will check up on it every so often and see how it's going. I was advised to pay close attention at the insertion site for any signs of infection or swollen tissue.

I left the hospital and drove to work so I could post for a job. It was roughly a 15-minute car ride and when I got out of my car I noticed a wet sensation near my left pocket. I glanced down and it seriously looked like I peed myself all over my shorts. Oh no... I'll have to call Stephanie after I post for the job and see if I need to go back to the hospital. Dammit!

Being back at work was really cool. Everybody came up to me and was surprised and shocked to see me so soon. They all said I looked great, and they even pretended not to notice the pee smell coming from my shorts. (I explained to them about the leakage and how I would probably have to go back to the hospital.) It was nice to be around my co-workers again. Most of them are really nice people and they honestly feel like my second family. I've missed them, and it was good to see their beautiful smiling faces.

After posting for the job, I walked back to my car and called Stephanie. I explained that I'm not sure if the tube was kinked while I was driving so she advised me to keep an eye on it for the next two hours and see if it still leaks. I drove home and took a shower. I also noticed that the tube was not leaking as much- still a little bit but nothing major.

I called Steph back with a theory. "It leaked really bad last night when I was sitting up in bed, and it leaked really bad today when I was sitting up in my car, but it didn't leak when I was laying down last night. So I think it leaks when the bag it at such an angle that gravity forces the fluid back down the tube instead of into the bag."

She said that is how the tubes are designed, so I need to keep it flowing downward at all times. I said I'd try it. She told me to call her back if the major leaking continues, or if I noticed swelling around the site, or major pain, or sickness, or anything else out of the ordinary.

Will do, Steph. So now I am back home, I have one more clinic appointment scheduled for Wednesday, and I plan to go back to work the following Monday, unless any other obstacles pop up during my recovery.

I was talking with a friend about this the other day, and it's really true. Each day has a set of speed bumps that we have to overcome. Not anything too big, but just little crap that we all have to deal with all the time. It never stops. The trick is to deal with each speed bump as it comes along and not let it get you down. How you handle speed bumps is what defines you as a person. Do you let speed bumps ruin your day, or do you slowly work over them to continue onward in your journey? It's a tough question, but think about it the next time a speed bump shows it's ugly face in the middle of your day.

What are you going to do?