ALL TESTS CONFIRM I AM CANCER-FREE!!!

ENDING THE LONG SILENCE…

I am sorry that it has been more than a month since my last posting. A lot has happened in that time.

All the post-operative testing confirms that I am completely cancer-free! I am excited but haven’t really been able to celebrate due to all the complications. I am getting stronger, but still feel very tired most of the time.

I did undergo the final hepatic resection operation on 03/26/08. We had a great deal of difficulty getting the pain management doctors to cooperate and reduce the amounts of pain meds they were giving me. One made me so weak that I could not stand. Another one gave me a palsy which made it impossible for me to feed myself. It was frightening and frustrating at the same time.

INCORRECTLY BALANCED BED

We discovered that there was a problem with the pitch of the hospital bed I was in. My liver is on the right side of my body. The epidural works with gravity, so to get both sides of my torso numb, the bed has to be completely level.

I began to have increasing pain in the incision and the area of the operation and additional doses of the epidural pain meds did not help. Finally, I noticed that when the mattress inflated, cycled, then deflated, the bed kept my right side at least 6” higher than my left. The pain management doctor came and confirmed that I was numb where I did not need to be and could feel in the areas where I needed to be numb.

Because no one knew how to operate the bed and change the pitch to make the mattress completely level, they stuffed pillows under the left side of my mattress. It worked, but not as fast as it would have if they had corrected the bed. The pillows made me uncomfortable in the bed. I could not win for losing!

ABRAHAM WAS A GREAT ADVOCATE!

Thank God Abraham was there with me. On many occasions he fought to keep them from giving me too much of those meds. He also ran the nurses aids out several times when they showed up to take my vital signs only moments after I had finally fallen asleep.

By 03/31/08, I had demanded that epidural pain meds be disconnected because of the adverse effects. As soon as those were out of my system, I was clear-headed, steady and able to stand and walk. I took only oral pain meds.

DISCHARGED!

Because I was off the epidural pain meds and able to get around, they finally released me 04/02/08 and scheduled an office post-op visit for Friday. I looked forward to going home Friday after the appointment.

Resting in the hotel, I was not able to keep my feet elevated enough, I guess. Also had problems keeping things “regular,” shall we say. There was so much pressure in my abdomen. If I ate, I felt bloated. By the time my appointment arrived Friday, I did not feel well at all. I had to have Abraham take me over in a wheel chair.

POST-OP APPOINTMENT

Dr. Abdalla and his staff were not happy to see my condition. The nurse said the incision did not look right. When Dr. A arrived, he had me recline on the exam table. Using a long Q-tip, he pressed in the center of the section of incision that did not look right. Pink fluid began to spurt from the newly opened hole. Immediately, I felt relief from the pressure.

The two fellows working with him began rushing to grab gauze to absorb the surprisingly large amount of fluid pouring from the incision. Dr. A opened pair of sterile scissors and clipped stitches continuing to open the incision and drain the fluid that had collected.

When it was over, he had drained more that one liter of fluid from the wound and reopened a gaping hole in my abdomen that was fully 9” long, 5” wide and 4” inches deep. I asked what his plan was.

THE WOUND VAC

He told me that he could not take a chance closing the wound again because the fluid would only build up again. He said that he wanted to use a wound vac to keep the fluid drained and pull the wound together so it could heal. The wound vac is a small, portable vacuum unit attached to a hose with a round disc at the end which has small openings with which to vacuum the fluid.

To use the vac, the nurse stuffed sterile foam mesh down into the entire wound, then taped that in place. Then she placed the disc on top of the foam and taped it into position. After everything was securely in place, she turned the unit on. It was pretty strong and actually was uncomfortable for a few minutes. It has to be worn no less than 22 hours daily. If it is off for more than two hours, the patient is supposed to remove the foam dressing and use regular sterile gauze and tape until the next appointment with the wound care nurse who would clean the wound, measure it, take photographs and place a new vac dressing.

BACK TO THE HOSPITAL

I still was ready to leave for Fort Worth. If I am going to be uncomfortable, I want to at least be at home. But, that was not Dr. A’s plan. Because the swelling was so bad, he wanted to admit me and treat with Lasix to drain off the excess fluid. At the same time, he wanted to watch the incision and treat with antibiotics to prevent infection. Also, my nutritional lab reports showed several of the key components were way off, so he wanted to administer supplements to get those number back in normal ranges. And there was the “regularity” issue that had to be addressed. So, back to the hospital I went.

I think it took two days of Lasix, but finally all the fluid was gone and everything was working like it was supposed to. Except for the lab results.

DISCHARGED…AGAIN!

Part of the discharge process was getting the portable wound vac, arranging for Dr. Rutledge to supervise the wound care, getting an appointment at the approved wound care facility and get some of the vac supplies to take home. Getting all that arranged was no small feat. I am glad the hospital assigned a nurse caseworker to take care of it!

Finally, 04/11/08, I was released to go home! It was late in the day, so we decided we would stay over night to rest. Saturday, we would get a good breakfast, pack and then leave. The discharge nurse was supposed to give me a stack of prescriptions to be filled. She filed them in the chart! It took 2 hours and intervention by Dr. Chang (Dr. A’s associate who had been following my progress) to get the prescriptions so we could take them to Walgreen’s. Unbelievable!

IT FELT SO GOOD TO BE OUT OF THE HOSPITAL!

Seventeen days in the hospital is entirely too long! I was so glad to be in the hotel. I slept in four or five hour stretches. It was wonderful to sleep without having someone wake me up to poke me and give me a sleeping pill! I think that was the best thing!

Saturday, we packed and had a late breakfast before getting on the road. We had to stop a couple of times so I could stretch, so it took a while for us to get home. Once we arrived, Abraham unloaded the van while I unpacked the necessities we needed for the night.

It was difficult to get comfortable in the bed, but once I did, I was out! My legs began to swell on the trip, so I slept with my feet elevated as much as possible. Sunday and Monday, I kept my feet elevated and ate grapefruit as a diuretic. By Monday night, the swelling was gone.

WOUND CARE

The following Tuesday was the first appointment with the wound care nurse. Friday 04/18/08 was my next appointment. I noticed that my face was swelling like it did when I was young and having an allergic reaction to different kinds of pollen. The nurse mentioned it. I told her about my childhood history and she dismissed it. I started taking Benedryl and seemed okay.

The next week, I went to my next appointments on Monday and Wednesday. The swelling was worsening. I had begun to have trouble breathing and was having to sleep sitting almost straight up. I also had a rash that was itching badly. I was so swollen from my chest up, My arms felt so heavy, my face looked like a moon. My neck was so thick it looked like a tree stump! I couldn’t imagine why I was having such a hard time. The weather man didn’t indicate that the pollen counts were unusually elevated.

ALLERGIC REACTION

On the morning of Thursday, 04/24/08, I needed to call the company which was leasing the wound vac to me, so I had to look in the instruction manual for the number. While looking for the number, I came across the allergy warning:

“Allergic reactions are possible in people who may be allergic to certain kinds of glue. If you develop a rash, itching, swelling or trouble breathing, please call 911.”

Wasn’t that special? None of the professionals working with the vac had any knowledge of potential allergic reactions; so consequently, they could not warn me. It is a good thing that I happened upon the warning or things could have gone really wrong.

I disconnected myself, placed a regular sterile dressing on the wound and began making my phone calls. Leigh Samp, Dr. A’s Physician’s Assistant. Kathy Parker, his nurse. Dr. Xiong and his nurse. The wound care nurses.

I was able to see Dr. Xiong’s nurse practitioner who gave me steroids to help me breathe.

Even though I had been eating the grapefruit trying to clear the fluid, I was still very, very swollen Monday, 02/28/08. Dr. X’s office worked me in Tuesday morning. While he was glad to see me, he was distressed by my condition. He gave me Lasix to get rid of the fluid and scheduled me for an Ultrasound/Doppler study looking for blood clots. He said with the amount and location of the swelling, he thought there might be a blood clot somewhere.

Since I wasn’t using the vac, I only had to see the would care nurse once each week, so we left Dr. X’s and went to the wound care facility and had the dressing changed and the wound measured, photographed, etc.

TESTING FOR BLOOD CLOTS

On Monday, 05/05/08, I had the ultrasound/Doppler study performed. They got the results to Dr. X early enough that he called to make an appointment for me Tuesday. He informed me that there is at least one blood clot. He put me back on the clot-buster therapy I was on last May when I had a clot in the port-o-cath. I am giving myself two injections each day.

Around this time, I spoke to Leigh Samp, Dr. Abdalla’s Physician’s Assistant. She informed me that he wanted me to return to Houston so that he could debride the wound. “Debride” (pronounced “dee-breed) means to remove dead tissue or matter that would slow the healing of the wound. It only takes about 15 minutes. I told Leigh I would have to call her back with an answer.

Traveling to Houston right now would be a tremendous financial burden for us. We used that last of our resources for the extra 8 days in the hospital April 4-11. However, I found a solution that will achieve everyone's goals.

OUTPATIENT SURGERY PERFORMED 05/15/08

I contacted my local thoracic surgeon, Dr. David Rutledge, and explained the situation to him. He saw me here in his office yesterday to debride the wound. After examining the wound, he recommended an outpatient procedure.

The mesh at the bottom of the wound is holding dead tissue behind it preventing the wound from healing from the bottom up the way it is supposed to heal. The sides of the wound are coming together on top of the mesh and gunk.

Dr. Rutledge cut out the mesh and stitches which were visible through the opening to expose fresh, healthy tissue. Then he trimmed the scar tissue from the sides to expose fresh tissue. He said he could have done it in the office but he wanted to be safe. He wanted to be in OR in case he found something other than healthy tissue behind the mesh. If he had found another hernia, he wanted to be in OR where he could deal with it instead of being in the office and not be able to address it right away.

He did not close the wound, so I will continue to change the dressings and see the wound care nurses.

When he removed the scar tissue, Dr. R exposed some nerve endings that are not happy when I move. Consequently, it has been hard to sleep. The slightest move can feel like a stabbing pain that will wake me from sleep.

So, now you are up to date! I will keep you informed.