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!!

Dr. Frech, My Daily Hell, and a Breakdown

I think that it is time that I do an update. I was holding off mainly for the hope that I could say I am feeling better and things are going great but I unfortunately cannot say that. Not much has happened since the end of January. I feel like things are going bad again and I feel sick all of time. I eat and have to instantly use the bathroom. I throw up a lot of the time and the pain has come back in my right upper quadrant. I am so dizzy every time I stand up. I am so frustrated.

I also want to mention that I met a girl at a boutique that has a gastric stimulator for gastroparesis. Her symptoms and mine are exactly the same. She found a Dr. back in Boston who was able to help her. She suggested that I send him my medical records and see what he thinks about my case. I will wait to see what Dr. Frech decides to do before I go in that direction.

I see Dr. Frech a few days after I see Dr. Rasmussen. I talk to him about everything that Dr. Rasmussen suggested and he shoots down every idea that Dr. Rasmussen suggested. He doesn't believe in the Sphincter of Oddi Dysfunciton so he doesn't think that’s the problem. He also believes that removing dairy from my diet is not a good idea. He actually wants me to increase my protein shakes to 3 times a day to try and get some weight on me.  He is leaning more towards the small bacterial overgrowth and decides that this might be the next route. He also decides to repeat my liver labs to see what is going on with my liver, since most of my pain is centered in that region. Depending on the results of the lab work, he may possibly order an MRI of the liver (already had a normal one done in February of 2013). He doesn't want to do any more invasive testing unless there is a very clear reason to do so. I am OK with this, but I also want answers. Nobody should have to go through what I have gone through to only continually feel miserable on a daily basis.

At this point, I finally hit my shutting down point for this first time in 9 months. I don’t remember much more of what was discussed at this appointment. I can’t even look at Dr. Frech because my eyes are filled with tears and I don’t want to look like a wuss. I feel like I have been so brave up to this point and have always tried to face what I am facing with a smile. I can’t. Not anymore. The tears flow rapidly and Dr. Frech seems lost as to what to even say to me. For the first time since all of this began, I feel completely and utterly hopeless and I think both of my Docs feel this way too. I don’t want to live the rest of my life like this and after how things went today, this may be the long dark road I have to walk. I spend the drive home mostly in tears questioning everything. I can’t even think about my health without emotionally losing it. I don’t go back to work for fear of someone asking how my appointment went and losing it all over again. I am an emotional wreck and can’t seem to pull myself together. I am afraid that I am going to slip into dark depression and stop eating again. I am afraid of everything again.

I get my lab work done and feel like maybe I should contact the Dr. in Boston. At this point, I have absolutely nothing to lose. I spend the rest of the day gathering my medical record, which includes a second trip to Salt Lake and $40.00 later. I contact Dr. Yood’s office in Boston and they want to see my medical record. They will contact me once the Dr. goes through everything to see if there are any solutions he can offer me. I am not in any way shape or form unhappy with my Docs. I am grateful every day for them. I just don’t know where to go or what do at this point.

So currently, I am sending my records to the Dr. in Boston. I am waiting to hear from Dr. Frech’s office about my liver labs and if there will be any more testing ordered. I am always trying to eat more and keep it on the inside not the outside of my body. I see Dr. Rasmussen in a month and I don’t currently have an appointment scheduled with Dr. Frech.

Heaven help me, and fast!!

3 Months Post-Op

I first see Dr. Rasmussen at my 3 week follow up. This week also marks my 3 month post op mark. I have lost another 7 pounds.  We talk extensively about what might be going on and what the next options could be. Dr. Rasmussen suspects either a Sphincter of Oddi Dysfunction or a clogged bile duct to explain the pain in my right upper quadrant. He is suspicious mainly because the pain gets worse after eating. But he says because of my newly formed anatomy I cannot have the test done to prove this is what I have. He wants me to address the issue with Dr. Frech since he would be more of an expert and see what he thinks. We also talk that my stomach just may not have any function and that removing the rest of the stomach and connecting the small intestine straight to the esophagus might be an option. He doesn’t want to go there and neither do I. The next thing that we talk about is that I may have food allergies. He wants me to avoid all milk products for a month and see if this helps. I am not too keen on this idea for several reasons. Number one I saw a food allergist for years and he never helped me. He was the one who actually suggest I see a gastro Dr. because I had a bigger problem than he could help me with. Number two, I am already having a hard time maintaining my weight let alone gaining any weight. Cutting out milk products means cutting out my protein shakes and bars, and I feel that’s the only thing keeping my going at this point. So his plan is to cut out my dairy and see him a month. He will also repeat labs at my next appointment to see if all my low numbers have come up at all.

Dr. Rasmussen and Scope Results

I see Dr. Rasmussen and he goes over the results of the scope. He wants to put me on Carafate for 3 weeks until I see him again. He says the pictures illustrate that there is some inflammation in the stomach and that the Carafate will help with this. He doesn’t want to change much more but agrees to up the protein shakes. He is very excited that so far the surgical anastomosis has stayed wide open and the surgery appears to be a success!

I am to continue taking the Welchol and add the Carafate. He says the next step might be to add in a probiotic if some of the symptoms don’t get any better. For now, just work on eating more to try and gain some weight and take the new medicines. I am to see him in three weeks for another follow up.

Dr. Frech and Scope Day

I see Dr. Frech on January 27^th and am feeling all over the place at this point. I have good days and I have bad days but don’t feel awful all of the time. The only thing is that my body can’t seem to decide if the surgical anastomosis is too small or too big at this point.  I sometimes get sick when I eat and sometimes I don’t. At this point, I don’t know if it is the food choices I am making or if something is up with the connection again.  Dr. Frech and I decide to do another scope since one hasn’t been done since the middle of October. I want Dr. Frech to do it before I see Dr. Rasmussen again at the end of the week. We get it all scheduled and you know how scopes go from this point.

My little sister takes me this time. We go to IMC and get all checked in. It only takes 3 pokes to get an IV started. I go back the procedure room and talk to Dr. Frech for a minute and when things are ready to go, I am given the medicine and the world goes black. I wake up and the first thing I do is look at the clock. I can always tell by how long the procedure took on what they found. It was about 10 minutes from the last time I looked at the clock before I was knocked out to when I wake up. This is a perfectly normal scope time. Nothing wrong. Good!

Dr. Frech comes and goes over the results and everything looks great he says. The anastomosis is about 3 cm and is wide open with no inflammation. Great! It seems that the idea of the surgery worked and hopefully things will look up from here. Dr. Frech puts me back on Welchol to help with some symptoms and also wants me to increase my protein shakes to at least 2 a day to stabilize my weight loss. He wants to see me in a month. I am supposed to see Dr. Rasmussen the next day.