Happy National Doctors Day!!

Today is National Doctors Day. In honor of this, I wanted to give an update of how things are going as well as a shout out to my Doctors.

Things are going just OK. Not as well as I would like them to be going but it is what it is. I have had the feeding tube out for 2 weeks and have lost 8 pounds. I however have not passed out once since the feeding tube was taken out, so that’s a bonus! I am also having a harder time eating again. My stomach feels like it is shrinking and I am eating less and less. I try to eat at least once an hour so I can get most of my calories in, but this is hard since I feel full all the time. Everything just sits in my stomach and I am so nauseated all day long. I have grown such a hatred for food! The eating aspect of all of this is unfortunately moving backwards, not forwards. I feel weaker and weaker each day and am so exhausted. If I sit somewhere in the same position for too long, I fall asleep. All of my vitamin numbers look OK so I don’t know where this level of exhaustion is coming from. The Linzess that Dr. Frech has me on seems to be doing the job but it is not helping the pain in my colon on my left side. The pain in my right side seems to be creeping back but seems different this time and is centered more in my back and radiates into in between my shoulder blades. I think the only positive thing that has happened in the last 2 weeks is the tube is gone and I haven’t passed out! I see Dr. Rasmussen in 2 more weeks and Dr. Frech in May. If things don’t start taking a turn, we may have to change the game plan.

Since it is National Doctors Day, I had to give a shout out to both of my amazing Doctors! Wow. Where do I begin and how do I explain it in words? I have never met two Doctors that show their patients as much compassion as mine have given to me (and I have seen a Dr. or two in my day). Dr. Rasmussen and Dr. Frech are 2 of the most kind and caring individuals I have had the pleasure of coming into contact with. To them, I am not a number. I am a human being with a real complicated problem. I can’t even begin to count how many times I have had a breakdown in front of these guys and they sit and so patiently listen to me and offer whatever comfort they can. So many times, we forget the simple power that can be found in human touch. Whether that is a tissue box, a shoulder to lean on, or a simple hug they willingly offer it. I am sure that I would be dead at this point if it weren't for the 2 of them. Not only did both of them take on my rare extreme case, but both of them believed that I was truly sick. They listen to me and are also honest with me, which is rare to find in a Doctor. I owe both of them so much and don’t even know how I can begin to repay them! So here is to the best 2 Doctors that I think exist in the state of Utah, Dr. Richard Rasmussen and Dr. Edward Frech!

So for now, I have stopped trying to find or see a reason to why this has happened or why I have had to suffer through this. I just have to believe that there is a reason and hopefully find comfort in that. I continue to lean on those that lend their strength to me because mine is running low. I just have to remember that each day is a new day. 

Feeding Tube Decision Day...Dr. Rasmusssen

I had my 2 week follow up with Dr. Rasmussen today. My weight was down 3 pounds. He asks how things are going and I tell him. Probably not the whole truth but this tube has got to come out. It has been 12 weeks of Hell and I don't want to participate in this game anymore. He asks if I think I can maintain my weight or if the tube needs to be in longer. I tell him that I want the tube out and he has to give me a shot at this. So...he agrees to take out the tube!! Yippee!

That was quite the experience. It was just as painful taking it out as putting it in. I felt it slither all the way from my throat to my intestines. I gagged more with it coming out then I did when it was put in. My intestines squirmed and made all sorts of lovely noises. I forgot they made noise! That tube was definitely nasty! Nothing like funky colored slime.

Dr. Rasmussen wants to see me again in a month to see how things are progressing. If I can't maintain a weight then I am sure I will be in trouble again! For now I just need to focus on eating and not losing much weight before then. Oh happy day!!

Dr. Frech 3 Month Follow-Up

I had my 3 month follow up with Dr. Frech this past week. I haven't seen him since December and a lot has happened since then. I was in the ER with peri-portal edema. I met with Dr. Smith in SLC for a second opinion. I have had a ton of blood work and a liver ultrasound. I had a feeding tube placed. I gained 20 pounds and finally had surgery.

Once I catch him up to speed on everything that has happened we go over each issue one by one. He was relieved to know that Dr. Rasmussen found a few issues during surgery that he was able to fix things and I am mostly pain free at the moment. He says he was very concerned at how things were going last time I saw him.

We go over all my labs and agrees to the Vitamin D. He also wants me to go off my iron supplement because my numbers were a little high and he thinks that the iron may be contributing to my constipation issue. He also wants me to go back on the Linzess and stop taking the Senokot and MiraLax. He also renews my pain medication that I take at night.

We go over the more pressing issue of me passing out in the mornings. He thinks it may be related to the WPW syndrome and not a nutritional issue. My blood sugar has been normal each time. He wants me to take my BP and heart rate the next time I have an episode to see what it is. He thinks it may be a good idea to go and see my Cardiologist. We'll see.

He wants to see me in 6 weeks. He also wants me to have the vitamin labs repeated every 2 months until things become a little more stable. He thinks that the feeding tube should be taken out to see if I can maintain my weight.

One Month Post-Op Surgery Round #5...Dr. Rasmussen

I have my one month follow up with Dr. Rasmussen. Things seem to be going well so far. I seem to finally be at a stable weight. I am having a few issues right now that are a little worrisome.

1. I have absolutely no energy. I fall asleep if I sit still for more than 15 minutes. I have to keep myself moving constantly to avoid this. I have never been a nap person before and I feel like I need a nap every day to survive
2. I am having what I like to call pass-out episodes. It is happening more frequently and always in the morning. I had these start happening when I had the original surgery and it was because of low potassium. Dr. Rasmussen had my potassium checked a week ago and it was normal.
3. I have this pain that stretches across my whole upper abdomen. It feels more like a tearing/stretching sensation, not necessarily “bad” pain. I can’t lay completely flat because of this sensation. This also has made sleeping interesting.

Dr. Rasmussen has a few solutions/options to these problems. They are as follows:

1. We are going to repeat all the bariatric post-op labs that were done 6 months ago. I should be on a yearly schedule of these labs but haven’t quite hit that point. I will have these done later this week.
2. Passing out could be related to a number of things. Since it happens first thing in the morning, Dr. Rasmussen thinks it may be related to my blood sugar. He wants me to test my blood sugar when I have another one of these episodes. He also said that hypoglycemia may happen after this type of surgery. He said it could also be related to low protein intake. I should be at 60g of daily protein intake. However, on a good day, I can get anywhere from 20-30g of protein in. He wants me to swap more of my veggies and fruits for more protein rich foods and try and hit this target.
3. Dr. Rasmussen thinks the pain/sensations of tearing are related to having the surgery. Pain like this normally resolves about a month after surgery and I am right at that point. So we are going to just watch it for a few more weeks to make sure that it goes away.

Now, about this lovely feeding tube... The feeding tube has been in for 9 weeks now.9 whole weeks. Which in the grand scheme of things, seems like nothing! But, it is the 4^th one and I am tired of it and tired of the routine of having it. However, both of us feel it may be premature in pulling it. I am maintaining my weight but that’s with 1200 calories of tube feed. He is worried about what will happen when we rapidly take away the 1200 calories. So we are going to decrease the tube feeds to only 800 calories. What worries me is the passing out issue. If I am getting all this nutrition throughout the night, and still feel awful in the mornings, I am scared to see what will happen if that is taken away prematurely. I don’t want the tube anymore but I also don’t want another one placed in a couple of months. So for now, I will suck it up for a few more weeks and deal with it.

Game plan for now: I will see him again in 2 ½ weeks and we will see where things are at. If things look OK and are progressing in a more positive direction, he will pull it. If not, he wants to leave it in for 2 more weeks after that.