Surgery Round 3

I meet with Dr. Rasmussen to talk about what the surgical options are. He agrees with Dr. Frech and decides to place the feeding tube directly into my stomach and through the abdominal wall. He briefly explains how this will happen and all the risks related with this surgery. Both Dr. Frech and Dr. Rasmussen are anticipating that the feeding tube will stay in place for approximately 3 months.  The plan will be to use it for 2 months and then for the third month see if I can maintain my weight and caloric intake. Once that has happened, Dr. R says the tube will become brittle and can either fall out or be pulled out (no surgery required). He also decides that doing an EGD while I am out to is the best option to see if there is some way to repair the intestine by the liver. He is hoping to feed the intestine over the scope and find the dilated portion of the intestine and fix it. He wants to try it this way before he goes over to that area and cuts. He is leaning more towards the idea of some hernia or narrowing in the intestine that is causing the distention rather than it has folded over and is kinked. He explains that he may need to do the surgery open as well just depending on how the anticipated scope repair goes.

I will be in the hospital for a minimum of two days. The newly placed feeding tube will not be used for the first 24 hours. Once the 24 hours have passed, they will start the tube feedings and monitor the tube to make sure nothing is leaking. Once the tube is working well and the pain is under control, I will be allowed to go home.

The surgery is scheduled. I feel really good about it this time. Dr. Rasmussen also seems more confident with this procedure which is helping me a lot. Third time is the charm, right?

MRI Results and Options

I have the MRI done at IMC on a Monday morning. The whole scan takes about 30 minutes. The tech informs me that the Dr.’s office will let me know the results.

I wait for a few days and get another phone call from Dr. Frech on Wednesday afternoon. I know personal phone calls from Dr.’s at this point mean no good news but at the same time I feel some sort of relief that maybe the scan showed something to explain my pain and that I wasn't turning into a lortab junkie. I was right.

He informs me that the scan showed that my liver and biliary ducts are all normal. There are no defects to be found, which officially rules out the Sphincter of Oddi dysfunction. He then tells me that where I had my stomach removed (the duodenum part over by my liver) is distended (swelling). He says it is behaving like a kinked hose and not allowing the bile to drain into my intestines. He then proceeds to tell me that my colon is full of stool. A lot of stool. This concerns him tremendously because of my previous bowel habits. He says it isn't normal to go from having diarrhea every day to having a colon full of stool and only having a bowel movement maybe once a week (sorry for those who don’t care to know this). He said that all these factors explain my pain. Vindication!

Options: He goes over a couple of things that we can do right now. He first refills my pain medicine (thankfully). There are only 2 options at this point. The first being they can go in with a scope and try to dilate the kink open. He doesn't think that this will work though because of how complex my newly arranged anatomy is. Also, the scope may not be long enough to get in there and actually do something. The second option is to have surgery again. Dr. Rasmussen will have to go in and revise that area (not too sure on how this will all work yet). Dr. Frech wants to first talk to Dr. R before proceeding with any treatment first. He says since Dr. R was the one who did the surgery, he should have a say in how it gets fixed. Unfortunately for me, Dr. R is out of town for Spring Break so I have to wait until next week before they talk and any decision can be made. Dr. Frech also doesn't want the feeding tube pulled yet. If we proceed with surgery (which sounds like Dr. Frech is leaning towards) the stomach feeding tube can be placed at the same time the revision is done. He also completely takes me off welchol and adds MiraLax to the mix.

I have an appointment with Dr. Rasmussen next week. I am hoping that both Dr.’s will have talked by then and a decision can be made. I want to proceed fairly rapidly at this point. I have a lot going on this summer and I am SO over the sick phase!! 

I am Human

I have spent the last 10 months with most everyone around me knowing that I am sick. The tube coming out of my nose doesn't really help that situation. Some common responses include,

• ·         “you are too young”
• ·         “you are so brave”
• ·          “you were given this trial because you are strong enough to deal with it”

The last statement for some reason has always stuck with me and as of late has started to really bother me. I don’t believe that God in Heaven is picking and choosing people who are going to be sick or have to battle sickness/illness in this life. I don’t believe that I am stronger or braver than the next person or that I am more suited or designed to deal with an illness.

I do believe in God and his ability to guide us through illness or whatever horrible situation some people find themselves in. I do believe that I am special but I also have only done what any other person would hopefully do in my situation. I have smiled through the pain and tears. I have scraped myself up off the floor and somehow each day, manages to put one foot in front of the other. I have found a way to keep moving but more importantly to keep living. These facts don’t make me special or stronger than anyone else, they make me human!

Life will find a way to knock each one of us down. For me, that is losing organs and continued pain and illness. But for others it may be something else or a combination of hardships. But we all keep going. You would keep living. And that’s what makes us all strong enough for whatever life decides to hand us.

Here are some quotes that have however helped me continue to move forward. 

This one always makes me laugh because it is so the truth!!

Dr. Frech and Liver Plans

I go to my follow up appointment with Dr. Frech. We decide that the best route at this point is to do the MRI/MRCP of my liver to make sure that the lab issues are just related to the weight loss and that there isn't something mechanically wrong. He is worried about my pain. The pain seems to be getting worse and I now take Lortab at night to just be able to sleep.

He also says that it would be a bad idea to take the feeding tube out any time soon. My weight has sort of stabilized but I have also only gained a pound after being on the tube feeds for 4 weeks. The nasal feeding tubes are only designed to stay in for about 30 days. That being said, he suggests that we remove the nasal feeding tube and surgically insert the feeding tube directly into my stomach. These are designed for more long term use. He also wants this done by a trauma surgeon at IMC. I disagree. At this point, the only surgeon who will operate on me again is Dr. Rasmussen. It makes more sense to have someone who has already arranged my insides to do it.

Next plan: MRI/MRCP is scheduled. Dr. Frech will contact me with the results. I have an appointment scheduled with Dr. Rasmussen to go over the feeding tube placement. I guess we will go from here.

Lab Work, Insurance Fighting, and Dr. Rasmussen Follow Up

I go get my lab work done at UVRMC to re-check the liver labs (3/10). I get an email from Dr. Frech a few days later that states that my liver labs are still elevated but some of the numbers are coming down. He wants to re-check them again in 2 weeks.  He is hoping that after more time on the feeding tube, the numbers will continue to come down and stabilize.

I am also informed that my insurance company does not want to pay for my feeding tube. They won’t pay for the tube unless the order is written that 70% of my daily calories come from the feeding tube, not the 50% that the order is written for. Dr. Frech says not to worry that they will find a way for the insurance company to pay for it. The nutritionist goes through my diet again and changes the order to 70%. I have lost 3 more pounds since being on the tube so they are going to increase the feeding rate and volume. Now we are waiting on the pre-authorization to go through the insurance company again to see if things can get paid for.

I also have the labs done for Dr. Rasmussen on 3/21. I get the results from him at my next appointment. The only number that is low is my vitamin D. We go over how things are going. The feeding tube is going well but now this pain in my side may be the death of me. He suggests a few different things like going on Neurontin. He begins to read the list of side effects and we both veto that idea. I don’t want to take any more pills. Something should explain my pain; I don’t want to mask it with pills. I want it fixed. Period.  He is also hoping that the feeding tube will help stabilize my symptoms. At this point, Dr. Rasmussen wants to follow Dr. Frech’s lead. I am to see Dr. Rasmussen again in a month.

I also get liver labs re-drawn again on 3/24. I will get these results at my next appointment with Dr. Frech in a week. I am also now taking Lortab. I feel like my insides might explode, or I am having a gallbladder attack (I already lost that organ). I see Dr. Frech in a week and am really hoping that I can hold out. 

Nutritionist Appointment and Feeding Tube Placement

I meet with the Nutritionist at IMC before I get the feeding tube placed. We go over my diet and what I typically eat in a day and how many calories. Based off of this information, she decides the formulation of enteral feeding and how many calories I need to consume by mouth vs. the feeding tube. She gets the game plan together and then I am off to have the feeding tube placed.

I check in to Radiology at IMC in Murray and get taken back to the exam room. The PA comes in and the real fun begins. They inject a whole syringe of lidocaine into my nose to “numb” the nasal passage and help the tube slide in easier. It tastes disgusting. The tube goes in relatively easy and only requires a few pull outs. He shows me the x-rays of my stomach; it is such a little guy!! When they tell you your stomach is the size of your thumb, you think it’s small. But to actually see how little it is, is a different story!!

The feeding tube is placed. By the time I leave the hospital, Home Health has already called to schedule the delivery of the supplies that will be needed.

I have an appointment to see Dr. Frech in 3 weeks and to have more liver labs drawn in a few days. I also have to get lab work done for Dr. Rasmussen to check my vitamin levels, calcium, and iron (all the labs that were low when I had surgery done in December).

I also have to see Dr. Frech for an emergency visit. My feeding tube is pulling so tight it has my nostril stretched out. I could pull it out myself, but Dr. Frech doesn't like the idea of that. I go to see him and he pulls it loose.

Liver Lab Results and New Game Plan

After I saw Dr. Frech, I had some new liver labs drawn at the hospital at his request due to my pain in my upper right side. He said his office would get back with me and let me know the results if there was something to be concerned about.

Dr. Frech called me to let me know that things aren't really OK anymore. He said my liver enzymes are elevated, which could be an indication of liver failure/disease/damage. But he also said they could be elevated due to the massive amount of weight loss I have experienced in such a short amount of time. He stated that he is very concerned and can no longer sit back and just hope that things get better. He says we are no longer moving forward with my case, which I absolutely agree with. He also doesn't want me to think that my liver is failing or this is some massive problem YET! He has come up with a new plan.

• I am to have weekly labs drawn to check the elevated liver enzymes. He wants to make sure that the numbers don't get any worse.
• I have to meet with his nutritionist and then he is ordering the re-inserting of the feeding tube. He said the only way to stabilize the elevated liver enzymes is to stabilize my weight (if they are elevated due to weight loss). It is not that I don't or can't eat now, the issue is I cannot physically consume the amount of calories I need in a day to stop losing weight. 
• Also, based off the results of the repeated liver labs from this week, he will decide on whether to order an MRI and/or liver biopsy to see the extent of the damage. 
• I am to see him in 3-4 weeks after the feeding tube is placed. 

Even with all this going on, I am so grateful for the many amazing friends and family members I have that offer so many words of encouragement. There are days where all I feel I do is cry but there is always someone there to tell me that it is going to be OK. I wouldn't be able to handle all of this if it weren't for these people!

Next step..FEEDING TUBE HELL!!