One Year: June 26, 2014

Here is a recap of what has happened over the past year!

Counts:

4 major surgeries (June, December, and 2 in April)

5 Hospitalizations (June, July, August, December, and April)

3 Emergency Room Visits

7 weeks of IV Therapy (including potassium, magnesium, and fluids)

5 Scopes (EGD)

4 CT Scans

1 MRI

6 Abdominal x-rays

2 Nasal Feeding Tubes (12 weeks total)

1 (still current) feeding jejunostomy tube (8 weeks and counting)

Home Health deliveries and nursing visits

21 labs drawn

Countless needle sticks

Countless Doctor Appointments with both the Surgeon and Gastroenterologist

Weight:

Previous weight: 222lbs and BMI of 34.77

Lowest Weight: 117lbs and BMI of 18.32

Current weight: 127lbs and BMI of 19.89

Goal Weight: 140lbs and BMI of 22

Things I have learned:

• My family cares more for me than anyone in this life. They have never left my side and have been there for me through all of this. Including spending days (and nights) on end in the hospital. Their unwavering support and love keeps me going every single day! I can always count on them to pick me up when I feel like I have been kicked to the ground.
• I have the 2 most caring, supportive, patient, knowledgeable, and loving Doctors around! They have never given up on me and get just as frustrated as I do when I am not doing well. They listen to me and my concerns and don’t make me feel like I am crazy! They are more than just Doctors to me; I would call them my friends. Without the 2 of them, I am sure I would still be super sick…or dead!
• I have a fabulous support system of current co-workers, previous co-workers, and friends who will always stand behind me.
• I am stronger and have more courage than ever before! I know I can do anything and survive anything that is thrown at me! I am a survivor!
• I have learned to just laugh. Life is too hard. I try to take each day in stride and do my very best.
• 
  
  

At this point, I would say going through all of this was worth it. There are still days I might not agree to this statement but overall I do feel better. I can eat and not be sick and I don’t live in the bathroom anymore! I feel like I do have some form of normalcy and a semi pain-free life! I feel very blessed! It’s crazy to think of how much has changed in one year’s time. Not just all the physical changes, but emotional and mental changes also.  I am a better person today than I was a year ago! 

Lab Reuslts

I get an email from Dr. Frech that all the liver and kidney labs came back and everything is normal! My liver labs have greatly improved since the last surgery and everything else looks great!

Positive, upbeat news!

CT Scan Day

I check into UVRMC Outpatient Radiology at 3:00 in the afternoon. I have been fasting for 4 hours. I am also terrified because I know that I am going to have to drink the contrast and I know what it tastes like. The tech comes to get me in the lobby and we briefly go over my history and the reason for doing the test. When she finds out that I have a feeding j-tube, she asks if I just want to inject the contrast into the tube or drink it. Of course, I opt for the option of using the tube. I don't know why anyone would prefer to drink that awful stuff. (At IMC they make it into a lemonade flavor which makes it tolerable but not at Utah Valley!) She then wants to double check with the radiologist if that will be OK. She comes back a few minutes later and says we are good to go! For the first time since this feeding tube has been placed, I am excited I have it!

 This is the oral contrast mixed with water. Funny that they think all this liquid will fit into my "stomach".

Using the tube to inject the contrast!

I spend the next hour and a half injecting all of this liquid into my tube. They come to get me at 4:40 to do the scan. I get changed into a gown and lay down on the table. The tech starts an IV as well to inject the IV contrast. The scan takes all of 10 minutes. When I am finished the tech takes out the IV and I am free to change and then go. 

Now the waiting part begins. I will wait to hear from Dr. Frech for the results. I know the routine. An email letter if all is well, a phone call if something is wrong. 

2 Month Post Op with Dr. Frech

I am officially 7 weeks post op since the second feeding tube was placed. I am scheduled to see Dr. Frech at his new office in Cottonwood Heights. I check in and am taken back to a room. My official weight at this appointment is 127 lbs. I have now gained 7 pounds since we have started counting! Holy Hannah! Now I only have to gain 13 more pounds and maintain it. It is really hard to watch the scale continue to go up, but I do know this is what needs to happen. Dr. Frech is very excited that up until 2 weeks ago I have been pretty much pain free! (I have pain in my right side again but it is so minimal I leave this info out). He still wants me to work on my oral calorie intake as I am only eating about 1,000 calories a day. He is still not too excited that a lot of foods make me sick  (like chicken breast and bread) but I think that’s just the way my body handles that type of food now.

However the latest and greatest is a new pain in my abdomen on my left side. It is an awful pain that is aggravated by breathing or changing any elevation. So if I am sitting down and then stand up the pain is so intense I feel like I could fall to the ground in agony. Walking up the stairs is a huge task which I try to avoid as much as possible. My pain is always worse as the day goes on. I feel it in the morning but it is not as bad. Dr. Frech is very concerned about this and after listening to my lungs and feeling my abdomen he decides to order another CT scan. He thinks it may either be scar tissue or a hernia pushing on something and causing the pain. He does not feel that the pain is related to the tube being there since the area around the tube is not tender. I am also to lay off taking narcotics and he writes a prescription for Tramadol to take during the day so that I can still function. The liver labs and kidney labs are also ordered to be repeated.

My next scheduled appointment will be after I see Dr. Rasmussen in August. He will contact me with the results of the CT scan and lab work if there is anything to be concerned about.

Feeding Tube Blowouts

 I get to experience what I like to now call my first feeding tube blowout. I wake up in the middle of the night soaking wet. I panic at first thinking that the tube has completely come out. I turn the light on and find out that the feeding tube has not come out of my stomach but has disconnected from the tubing that is connected to the machine that pumps the food. So in this process of becoming disconnected, the tube feeds have continued to run all over my bed and my actual tube has leaked intestinal contents all over me as well. Talk about disgusting.

So I have to get all re-connected and change all my bedding in the middle of the night. Not a pleasant experience. Not only does this happen once, but a few nights later it happens again! Same exact sequence of events. Now I use tape every night to secure the connection so it doesn’t happen again…hopefully!

Dr. Rasmussen 5 Week Follow Up

I see Dr. Rasmussen for my next follow up approximately 5 weeks since the second surgery. Things are overall going well. Here some of the positive from this visit:

• ·         I have officially gained 5 pounds…only 15 more to go!! Yahoo!!
• ·         I have “graduated” to 2 month follow up appointments instead of one month follow ups.
• ·         I have no more physical restrictions or weight lifting restrictions; I am to just ease back into doing things again.
• ·         I can go swimming and rides the rides at an amusement park now (Yes, the small things make me happy!)

We are now watching for the tube to either lose function or fall out. It’s not a matter of if but when. Dr. Rasmussen says that the tube will either clog and we won’t be able to unclog it, or completely fall out. If the tube completely falls out I am to shove it back into the hole to keep it open until they can get me into Radiology to have the tube replaced. This will have to happen in less than 24 hours because the hole will try and close itself off which can open up a whole new can of worms. When they replace the tube, this can just be done in Radiology. It will be a different tube that has a balloon on the end that will keep it in place inside the intestines and not require stitches like the current one I have. This hopefully will be easy when this happens.

Dr. Rasmussen seems really bummed that my pain is back (as am I). However, it is still tolerable on a day to day basis. Right now we are just going with the notion that it will stay this way and not get any worse. I can live with a little bit of pain every day.

At this point, I know that I will never function at 100% again at that’s something I have to learn to accept and learn how to best deal with it. Each day is a new day and brings its own challenges but I also try and learn new things about me every day. I learn my limitations very quickly and am just trying to learn and adjust to what my “new normal” will be.

My next appointment with Dr. Rasmussen will be in 2 ½ months. I see Dr. Frech in two weeks.