Where do I go from here?

It has been a really long time since my last post and I apologize for that. Things have been really crazy here and it just felt like so much to say that I couldn’t type it all out. I will try now.

So anybody that reads my blog pretty much knows that I spinal muscular atrophy type 1, which deteriorates your muscles. I am very tiny, probably the size of about an 8-year-old. I knew I had lost a little weight, but had no idea how much until my nurse came in to change my pressure point bandages, after not seeing me for a week, told me I looked like I had lost some weight. So dad weighed me and we were shocked that I was 46 lbs.

Now let me put this into perspective. My highest weight EVER in my life was maybe 75 lbs. You must keep in mind my body size and condition. At that weight I looked very well. I would guess though that the majority of adolescence and early adulthood was more like 60-65 lbs. Even at this weight, while I was thin, I still looked pretty good. In 2007 I got really sick with pneumonia and ended up in ICU for 2 weeks. After that point I went down to the upper 40s in weight. Once I got out, I regained some, but not all. I think I maybe got to about 55 lbs. This was getting too thin, but we were not SUPER concerned about it. I started noticing my arms looking skinnier back in January of this year (2010) and started drinking Ensure daily. It was a double-edged sword though because it would make me so incredibly full that I was skipping a meal altogether. When I started those drinks I was 51 lbs. in January. I did this for about 3 months, but didn’t see any results and I felt like I wasn’t being able to eat enough so they cancelled each other out. I am not sure why I am losing weight per se because nothing really has changed in my diet. But, I have been through a lot of crap this year and that may play some sort of a role.

My timeline for events goes a little something like this (and may not be in correct order):

• The loss of Nellie in December of 2009
• Bladder problems which resulted in a cystoscopy procedure that went horribly wrong and had to spend a day in the ER passing a kidney stone.
• Bowel problems that went on for 4 months for an antibiotic I was given in January for a suspected urinary tract infection.
• A ulcerated sore on my ear, condition called chondrodermatitis nodularis helica. (In laymen’s terms: A pressure sore.) That I suffered with for 4 months.
• A severe chemical burn in my throat from an antibiotic I was given to treat my ear! It was so bad my throat swelled up and couldn’t talk.
• An excision surgery for the ulcerated sore (with biopsy) and had to let that heal for 6 weeks.
• Sometime during all of this I broke my big toe—let me add. Went out dancing with friends and someone drunk ran directly into me and bent my big toe backwards.
• My ear surgery didn’t heal as well as planned because the doctor left a very prominent are of cartilage protruding, also there is some speculation on a suture being left in (I personally pulled out one myself, and had another one in for weeks that they said was absorbable and I eventually broke it off. I didn’t pull out per se, just broke off.
• Now I have another ear sore that has started on that prominent area that the doc does not want to admit that is because his lack of filing down or suture. So had to have that part injected with steroids, and then he cauterized the entire area, removed all the granulated tissue, put me on oral steroids, and an antibiotic. He did mention sutures being left in that could have caused it, but “I didn’t find any in there”

Soooooo… MAYBE that is why I have lost some weight? Stress maybe?

I have noticed my appetite has suffered some and I can’t seem to take in very much without feeling STUFFED. I have tried forcing milkshakes of high calories at night before I go to be to try and gain some and sleep on the calories. That just made me sick.

My internist did a lot of blood work and my results did come back as “poor” for nutrition and also a little dehydration. He checked for hyperthyroidism to rule that out also. Then he sent me to a GI doctor.

It took 3 weeks to get in to see him. In the meantime my internist put me on TwoCal HN supplement that has 475 calories and TONS of vitamins. I had to drink 2 oz. 4x a day to equal an 8 oz. can. This went ok for a couple of days, but then it is like my stomach rejected and it was making me so nauseous all day. I was miserable! Plus, when you are sick to your stomach, you obviously are not hungry. I am all about doing whatever it takes to get well, but I am not going to do something that ruins my quality of life, and cancels out my goal of consuming more food.

I DO LOVE TO EAT!

I had come to terms (early on) that I needed a feeding tube. A G-tube. I wrapped myself in research, found out about what types there are, Bard button, Mic-Key button, Mini Button. These are not traditional tubes with tubes hanging out everywhere. They are like a “port” that you can close and open, keep hidden, and remain comfortable. My goal was to get this, gain weight, and then just use it as a supplement device. I really began almost borderline excited about how it may enhance my life. I would look better, feel better and have more energy, it may cure some of pressure point sores I have on my body from sitting all day, I would sleep better because I have some padding on my body, it would be there incase of an emergency, I could stay hydrated better because it could be injected with water, I could also administer my medications through it.

Finally saw Dr. Z (GI doc) a week ago.

He was concerned with my anatomy and the placement of a G-Tube. His thoughts were that my stomach may be under my rib cage. I was thinking, “no way” it is just much further down than he expects.

See you have to keep in mind, I have an adult size rib cage with scoliosis, adult sized organs, but in child size body.

So he ordered a CAT scan with barium swallow… YUCK! and IV contrast… great! more fun getting a vein. Oh yeah, forgot to say that the docs ruled out celiac disease.

Well I got the results of the CAT on Monday of this week. I was devastated to hear that my stomach IS underneath my rib cage. Dr. Z feels that placing a G-tube is WAY too risky to attempt, also if he did, it would have to be placed between ribs. He said my only option may be an “intestinal tube,” which I am assuming he means a J-tube. I can’t find near as much information on J-tubes as Gs.

Now, the next step is that he has me scheduled with a surgeon that he wants to do a physical exam on me and look at my CAT scan to see what his suggestions may be. So it looks like I may be in limbo for a while. My appointment for him is this Monday.

Look I know every patient is different and that not all cases are the same. I appreciate also a doctor being leery for my safety. But I cannot quite understand how they cannot do it all because of this situation. While I was typing this I actually found a VERY interesting article: http://radiology.rsna.org/content/233/2/392.full

This is specifically a procedure called RIG (radiologic-inserted gastrostomy) that was done in patients with ALS (a neuromuscular disease similar to mine) and specifically talks about using this technique to place a G-tube when the stomach is under the rib cage. They essentially pull a portion of it down below and suture it to your abdomen. I will be sure to bring this up to the surgeon on Monday.

Sigh… with all of this I did finish my summer semester with all A’s and I cannot believe it is already almost over! I don’t know what I am going to do about next semester if I have to have surgery. I don’t want to drop the class because it is my final one, and my externship! I will just take it day-by-day and see how it goes I guess.