I'll be ok.... soon

There are some days I frankly feel like giving up. Like I made the worst decision in my life, what the hell was I thinking? There are some times that I am so mad at myself for not being able to be normal or quite frankly just to be able to shower and get dressed and not so worn out that I need a nap before any other tasks.

Today is a day that I feel like this. I am fighting a cold, 3 days home from a week stay in the hospital for an additional infection from my surgery and walking around with a wound vac on that literally drains my soul. I am tired, I am weak and I just want this all to be over. I want my life back.

I ran across this picture and saying this morning and it describes my world to a tee.

I'll be ok... just not today

Deeper into hell

Not even a week into my recovery home from the hospital, to be exact it was 2 days... 2 days... and I find out that my incision is soaking through the bandages with discharge like crazy. The real issue was when I took the bandage off and it was just bright red blood. I immediately call the office and get an appointment to come in.

This is when the fun just begins... a small area of my incision right beside my belly button was trying to open and was pouring out discharge and pus. So in office my Dr had to reopen this small area. The nurse showed us how to pack this small hole with guaze twice a day.

I was also started on an antibiotic as well since the incision had become infected. We thought that was all the problem and it was solved now and the rest would be easy sailing.

Two days later as I'm taking a shower and using every last ounce of energy I had, I broke down. Looking down seeing my body in the state that it is in. Feeling how horrible I felt. Knowing this was not how it was supposed to be. I cried. And I cried. I hurt, every spot hurt. My incision was draining massively, the antibiotic made me sick. It was horrible.

So after some crying I texted my Dr. I told him what was going on and he agreed to see me the next day in office and would change my antibiotic.  All I had to do was make it through one more day.

I honestly had no idea what to expect. I knew he would have to open up my incision more but the way I felt I figured I would be in the hospital to do so. But no, let's just say I am glad that my Dr has good taste in picking out his residents cause anyone else couldn't have convinced me it was ok.

But here is this resident re opening my incision as I lay on the office bed. It was horrible.  It was painful, I about passed out twice. They had to lay the bed back and take my vitals and give me a break cause it was just horrible. Really there is no other way to describe it but horrible. I laid there while feeling him pull apart my skin, then pack it with guaze and cover it up. I left with a 12 inch long open incision on my belly. It felt like my insides were going to fall out.

I saw my Dr again a couple days later and he was definitely happy with his residents work on my belly. Although he was ultimately unhappy it happened to begin with. He said only 25% of the time do people get infections. I was just lucky I guess. He wanted my incision to be pretty and heal nicely so he had closed it with internal sutures and then glue on the outside. He said he could have used staples, and this wouldn't have happened but the incision wouldn't have been as pretty. I guess now it doesn't matter because it is definitely not pretty at this point. But he reassured me once it is healed he will fix it.
He also ordered home nursing to come out and evaluate my wound for a wound vac which would aide and speed up the healing process. So I spent the next week waiting on the home health nurse company to come see me. They finally showed up, went through all my intake questions, talked to me about a wound vac and supposedly placed an order for one. I say "supposedly" because after several calls and finally a letter in hand given to the nurse, I never saw the wound vac.

Luckily my mom came over twice a day to repack my incision, help me shower and take care of my kids and all the other daily activities. I still felt like my insides were falling out. It hurt to move, it hurt to walk, I slept on the couch cause I couldn't lay down. I had my drain tube still in which drained my kidneys and new bladder. I honestly felt like I had made the worst decision of my life and I knew it wasn't supposed to be like this. I broke down and cried too many times to count. It wasn't supposed to be this way.

That's all I could fatham. It wasn't supposed to be like this. I was supposed to be halfway through recovery. Feeling good, using my new bladder. Enjoying Christmas with my family. But I wasnt. I was confined to the couch in my living room. Only getting up to empty my drain bag. I had no energy, no will, no want to do anything else.

I was very depressed although I tried not to show it to my kids. But I missed them. I missed everything.

To be continued...

 

 

The journey to hell...

This is going to be my tale along this bumpy road of having my bladder removed due to Interstitial Cystitis. This is a long story, a lot of setbacks, a re-admission, and lots of pain. This will be multiple installments as it is a continuous journey.

It's my journey to hell...

But it's not a bad journey cause in the end I fight my way back.

So let's start... Dec 4th was my check in day at the hospital. All was good, I was calm.. almost in a surreal way. Like I knew I was about to face the most complex and scary thing of my life. I was undergoing a 10 hour surgery and would have a lengthy recovery.

But still, it was surreal.

I was taken to my room, I remember exactly 9th floor of the cancer center, room 935.
Honestly it was kinda a day of nothing when I got there. They didn't have orders for me yet so I really just hung out in my clothes watching tv for a couple of hours til things got started. First things of course, the overly sized green gown that could have housed 3 of me comfortably.  The IV that would come to be a pain in my ass when my veins blow every 12 hours. Fluids... hydrate hydrate hydrate
And then.... the dreaded clean out

Why.. because during this surgery, they remove a couple feet of your intestines and conform them into a new bladder or "Indiana pouch" that rests on the inside of your abdominal wall. So your intestines need to be clean. And this entails drinking a GALLON of golytely which is fancy for miralax.

Dec 5.

They took me down to surgery pre op at 6 am. It was quite busy with residents, anesthesiologists, and nurses. It all was kinda a blur. I talked to so many people and I signed my life away several times. I listened to all the what ifs and risks and knew that no matter what the chance of a pain free IC life outweighed all of that.

I kissed my loved ones and they walked away as the anesthesiologist began to do my epidural. After the meds I really don't remember much besides being wheeled to the operating room. I was completely calm.

I woke up in recovery, epidural lasting so not much pain, although they had me on a morphine pain pump and the epidural pump of lidocaine. The surgery lasted 10 long hours. I remember looking down though and seeing the bandages on my stomach. The 3 drains hanging from all sides and all the wires and cords hooked up to me. It wasn't long in recovery til I got to get back in my room.

They tell you from the start that you have to do three things to go home... eat, have a BM, and be on oral pain meds. And believe me they start pumping you full of colace and miralax as soon as you're out of surgery. I was doing good with 1 and 2 out of the list but pain was an issue when they switched the pain pumps to as needed IV meds.

I remember laying in the bed crying in pain. I can't lie, it was painful. I had an incision from just below my chest around my belly button down to pubic bone.
But honestly as soon as we got the pain under control I was ok. I actually went home 4 days after my surgery.

And seriously the ride home was torture! Every bump or crack in the road, I felt 10 times worse. I was drained and weak. I was ready to be home.

To be continued. ..