Part two.

In addition to the "Whipple" procedure, the team at HUP did some other interim work and that helped me to feel a little better.

After the Whipple which took about 6 hours and required them to cut me open across my diaphragm, I was in a lot of pain and much discomfort. Since they had joggled my insides, my bowels were blocked up and I didn't go for a full week. When I did, it was painful and very uncomfortable. This feeling continued for almost a month afterwards.

Food tasted terrible and no matter what I ate, it felt horrible once inside me. This problem went on for the entire time of my recovery.

They told me they were sending me home and that I needed a caretaker, so I asked my daughter if she could find someone. She did, but when I went home, she told that that person had changed their mind and went on vacation instead.

On a side note, during the month before I went into the hospital, I had sold my home. I had lived there for 20 years and raised my kids, dogs and cats. This place really was home to me, but since my wife had died in 2010, it no longer felt right to be there. I listed it for sale 2 days before Christmas last year, and it sold to a young couple just starting out. I had done as much as I could to bring the place back into shape, including painting everything neutral colors, landscaping the yard, and other work inside the place. I left the kitchen and bathroom alone which would have cost me quite a bit to replace. I figured the new owners could do the work themselves to their liking.

I had been packing and getting rid of stuff since my wife got sick and it became obvious that she would never go home again. It was therapeutic for me as well as cathartic. It gave me a chance to go through everything in the house to relive memories both good and bad, as well as decide that I really didn't want to carry all that crap to my next destination.

One other thing is that I needed to make a clean break, so getting rid of the clutter allowed me to start over. It felt good and bad.

Back to the story:

Closing on the property was on the 30th, and my surgery had been on the 20th. I hadn't gotten out of the hospital by then, so I signed over power of attorney to my daughter so she could take care of any problems that occurred. None did, so she had an easy time of it.

I also asked her to move the rest of my stuff into a storage unit. I gave her a list of what I wanted to trash, but she pretty much ignored the list in favor of efficiency and getting the job done quickly. Many things unrelated were thrown into empty boxes, and they were all put into storage. 

I was offline while in the hospital, but had found a decent looking apartment that was close to my bus route before going in, so I asked her to secure it for me, which she did. I also had gotten a friend to help me move stuff around in the storage unit so that I was able to actually put my little red car in between and still close the door. It was amazing to know that all I had left after overfilling a 1200 square foot, 3 bedroom, 1 bath home with full garage....I could fit everything into a 15' by 15' storage unit and still have room for my car!

The hospital released me after holding me for an extra week. They held me because they knew that I had no one to take care of me. I had asked that they send me to a nursing home for recovery, but the insurance company refused to pay for that and I was left fending for myself.

The apartment was/is very nice, but I had gotten rid of all of my furniture. All I had left was a recliner/rocker, a few tables, and a twin mattress that I had bought after getting rid of my king size mattress. 

I had no food in the new place, and no energy to drive to a market to get it. I had little or no clothing. Not because I didn't have it, but because I couldn't take boxes apart to find it. The same went for dishes, silverware, and anything else that one needs to live. I was lucky to find toilet paper which I really needed badly because of my horrible situation.

I was able to go out to a restaurant and got eggs to eat, but was sick for hours afterwards. I bought some stuff at Wawa, but that didn't go down too well either.

My friend from Maryland called me the second day I was home, and heard me tell about how bad things were. He called me back after a few minutes and offered to take me in. His wife is a nurse and knows how to read the medical stuff. I have never felt good about doing something like that, but was desperate. So, after thinking about it for a few minutes, I called him back and we spoke about all the things I would need and how inconvenient it would be for him. I wanted to make sure he understood how bad things were for me. He agreed to help me anyway.

He offered to come and get me, but I wanted to make sure I had a vehicle when I got better to drive, so I told him I would try to drive myself. This was really a bad move on my part, but I was able to do it anyway. I traveled the entire 122 miles as carefully as I could. When I got there, I was unable to get out of the car without help. It took a few minutes for me to climb the stair into his house. I was able to recline on his over sized couch and that's where I stayed for an entire week. I didn't have the energy to climb the stairs to the bedroom. I didn't have my cpap machine downstairs, so I slept fitfully the entire week, but I slept. I hadn't gotten any decent sleep in the hospital because every two hours they wake you to do vitals or some other thing. This place was quiet and I was able to sleep whenever I needed.

They went shopping for me and bought me food that they though I would need, and I ate what I could, but a lot of stuff went to waste because what I ate one day, didn't always work the next.

I ate a lot of saltines. I ate waffles with peanut butter too. I could tolerate that almost all the time.

My bathroom breaks were timed when no one else was around because the disease made everything so foul that no one needed to be around it.

I hadn't shaved while I was in the hospital, but my hair had slowed down, so it wasn't so bad. I didn't have the energy or concentration to shave, or even shower. But, I had stopped sweating, so if you didn't get too close...

I managed to take a shower one day while my caretakers were out, and I shaved and that wiped me out for the rest of the day. Towards the end of the first week, they asked me if I needed help going upstairs, and I said I would try to make it myself carefully. They moved my stuff upstairs, and I managed to make the climb. The bed was heaven! I hooked up the CPAP machine, and lay down and was out!

I slept like a baby. I came downstairs after that in order to eat or watch TV. They put a chair out on the porch and once the weather got warmer, I was able to go and sit in the sun. That was heaven too. They are on the bay, so watching the different birds, seeing and hearing the boats, was great.

One day, I got directions to a Subway, I went and got a sub. It was terrible, but at least I went out.

I made progress, but it was very slow and I am not patient. I was frustrated, but I had to take what I had been given. 

These folks should be nominated for sainthood! They saved my life. I really believe I would have died if not for them.

I was able to connect to their network and got back online. I made contact with some friends who were closer to my home area, and they offered to take me in. I accepted their offer, and was able to make the drive to their home that Saturday. I thanked my friends for taking me in, and since I had learned what I needed from the first couple, was able to streamline things with the second, making it a bit easier for them.

They were able to travel with me back and forth to the storage unit where we moved some of the stuff to the new apartment, little by little. We also re-arranged some of the stuff, making it easier for me to find stuff.

The lady rode with me one day, and we went through boxes and arranged my new kitchen so I could find stuff. She also took stuff off the very top shelf, and lowed them down so I could reach them.

One day, she went with me to Wal*Mart so that I could do some food shopping. I was able to make it halfway through the food aisle before I got too tired and had to go back home. She came back with me the next day and we finished shopping.

My male friend traveled with me to Philly for my follow up appointment, and spent most of the time sitting in a waiting room. What a trooper!

Their home is log, which is absolutely beautiful. It sits at the top of a very steep driveway, and is very far out in the country. I spent hours just sitting at the window looking out. I didn't watch much TV, and the internet was not available to me, so I spent much time thinking and calming down.

We were also able to spend time every night saying prayers.

I lost track of time there, so I'm not sure how long I stayed, but I was able to decide that it was time to try to live on my own, and I got up one morning and did just that. 

We will talk about the present in my next post.

Long break! Part One.

Facebook has allowed me to stay in touch with almost everyone, but I still like to write things down in a longer form, so I am going to add at least this one more post.

Since I've been gone, the blog designers have decided to complicate the writing process in an effort to "improve" things. They need to leave it alone, but of course they won't ever do that.

The purpose of the blog is to write things down for myself and others to read. If I wanted to illustrate a book, I'd do that. All I want to do is write, not draw, paint, or design!

OK, the last time I wrote something here, I was a bit confused. I had started to lose weight, but I wasn't dieting anymore. My bowel movements had started to change and were causing me concern.

I was tired, and my dietician told me I needed to increase my iron intake. So, I started taking iron pills daily, and then up to 3 times a day. This didn't slow my weight loss or my fatigue and to top it off, I started to itch. 

I have read many things over the years about medical conditions, but had never run across a set of symptoms like this. I had recently changed family doctors, and wasn't really happy with the new guy. He had no concept of the bariatric obstacles I had to deal with. So, everytime he tried to prescribe something, and I asked him what the coating was on the pill, he wasn't a happy camper.

There is an obsession with doctors today to try to get people to lower their cholesterol to ridiculous levels. I have always had a negative reaction to statin type drugs. They give me joint pain, and flu like symptoms. I am firmly convinced that I wouldn't have gained my weight if I hadn't been taking statins. I couldn't climb stairs. I felt like an old man when taking those pills. So, I wasn't going to even "try" the new statins that just came out. The doctor didn't like that.

Now, I've tried many other treatments for lowering cholesterol, but decided not to bother anymore and again, doctors don't like that.

So, when I started to have these crazy symptoms, I held off as long as I could before going to this guy. I figured he would send me over for endless tests and just tell me I had a virus and give me more pills.

Well, after he interviewed me, he did send me over to the hospital for tests. I decided to try the new hospital since my bariatric surgeon had transferred over. I had no idea what was about to happen.

I have never been treated so poorly in all my life. I was in fear of losing my life there. I was submitted to tests after being checked in, and doctors came and told me I had liver disease and needed a transplant. But, they couldn't tell me where the disease came from, what caused it, or what to expect.

The people who took my blood for tests couldn't get a "stick" when they went for an IV or taking tubes of blood, and in all the years I've been around, I've always been an easy stick. 
There were two times while I was in their hospital where I wasn't fed for two days, and I wasn't given liquids, or even an IV to rehydrate me. 

I did have a visit from the bariatric surgeon who told me I probably needed to have my gall bladder out, but when I told the head doctor that, he just brushed it off.

Then, without any notice, after a week, they sent me home with orders to contact the doctor in about two weeks for a follow up. No mention of the liver failing, or anything else.

I went home feeling totally drained. I was still sick and still had no idea what was wrong. I thought that needing a liver transplant would be a fairly serious thing. But, they just sent me home.

After thinking about my options, I decided I needed help, and another opinion. I spoke with my bariatric surgeon and begged him to find me a doctor that could help me find out what was wrong and fix it. He got back to me and set me up for an appointment the next day with a local surgeon from the "other" hospital.

That surgeon referred me to another doctor who had more experience with diagnosis. 

That doctor reviewed my chart and gave me 3 options:

1. I could go to Hershey where they have more experience with liver disease and transplants.
2. I could go to University of Penn in Philadelphia where they have even more experience.
3. I could go to Baltimore's John's Hopkins where they have similar experience to Philly.

I chose Philadelphia because it is closer to my original home. This doctor took out his cell phone and called a doctor at the hospital and scheduled an appointment for me.

I had to have help getting to Philly because I wasn't in good shape and it was a long drive. I had a friend pick me up who was familiar with the area and he drove me.

After seeing me, the doctor decided I needed to be tested again right away. She arranged for me to enter the hospital, where there was no delay. I don't think I spent more than a few minutes in my room before they took me down for tests. They poked and prodded me. They asked me more questions than I can remember.

The hospital was old, but the team there was amazing.

My medical numbers were so far off what was considered normal as to be surreal.

Cholesterol was 650. I am usually around 250-300.

My blood sugar was so far off that they started giving me insulin and taught me how to inject myself. I thought I would have to be on insulin for the rest of my life. The numbers were so far off.

I was still itching and they told me I had jaundice, which was causing the itching.

After a week, they too sent me home, but this time, I had a diagnosis. It wasn't good, and it scared me to death.

I had a tumor on my pancreas. I had never even heard of a pancreas, but when I looked it up, things got much worse. This was one of the worst diseases I could ever have, according to the websites I saw. I had less than a 5% chance of surviving 5 years.

My doctors told me that if I didn't have the operation they were recommending, I wouldn't live to the end of the year.

So, after losing all that weight from my gastric bypass, losing my wife to cancer, and all the other things that happened to me over the past few years, I was given a death sentence.

To say I was angry was an understatement. I had no one to be angry with. There was nothing I had done to contract this disease. You don't get it by smoking, and I didn't smoke anyway. I also don't drink. So, where did it come from?

So now, you will have to wait until I have the energy to write some more because this entry is finished for now. Stay tuned.