12-28-2011 - Nutrition Appt.

I had my monthly nutrition appointment today. The doctor mentioned how he notices that I am always a little tachycardic (a little more so today), so he decided that I should start doing a liter of IV fluids every other day. So we will see how that goes over the next month until my next appointment. 

I have an appointment at Temple the middle of January. Also, the records have been sent to the University of Pennsylvania, so hopefully we can soon get an appointment scheduled there.

Taking it one day at a time...

Merry Christmas

This is my Christmas present from my Pap.

Let Me Vent - Frustration

I haven't posted in awhile because I received an email from my local GI doctor and was pretty frustrated about it for awhile. In my last post I informed you that we were starting the appeal process with the insurance to try and get the surgery covered. Well, long story short the insurance company is using my local GI doctor as a go between for me and my insurance. Anyways, they had him contact me to let me know that I need to get a 2nd (well, more like 3rd) opinion about whether or not I should have the surgery and if it would benefit me. , to see if they will cover it.

I'm just frustrated with all the run around from this doctor to another doctor and then fighting the insurance company too. So, I called to schedule my appointment with this new doctor and they won't even schedule me an appointment until they have all my paperwork. Hopefully I will get around to calling everybody to send them all my paperwork. When I get frustrated like this, I just want to give up and forget it all, so then I keep pushing off making the phone calls they want me to.

Another thing that bothers me is that I actually work for the hospital my insurance is through and they still don't want to cover things. I supposedly heard that they made the comment that "she is stable". Well yes I'm stable, because I'm on the TPN.....that's not the way I want to live the rest of my life and if my body would start rejecting it, I wouldn't be stable for long. Which is why I'm interested in the surgery, to see if it will help and then I can get off the TPN and lead a more normal life.

There's plenty more I could write about, but I will end it here. I don't like to complain, but sometime I just need to get it off my chest a little.

Taking it one day at a time!!!
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Appeal

I called Temple today to see what all I needed to do to start the appeal process. The secretary informed me that the one Doctor had already submitted my appeal. She said that the insurance usually denies the first time, but if the doctor submits a letter they usually will approve it then. Hoping and praying that is the case!!!

Taking it one day at a time!!!
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The Start of an Insurance Battle

I received a letter in the mail this week from Geisinger Health Plan, which is who my health insurance is through. Temple had submitted  the information for the Enterra Therapy surgery to get approval so we can get the ball rolling with getting the surgery. Well, this letter informed be that they denied the surgery and would not be covering it due to this surgery still being considered experimental. So know I'm going to have to start the appeal and grievance process to see if we can somehow get them to cover it.

Prayers would be appreciated as I make phone calls in the coming days to see what all I need to do and start the process to try and get it covered. For me, this is the last hope I really have of something that might be able to help. This surgery is basically the only thing left to try to see if it will help.

Taking it one day at a time!!!
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10/17 Temple Appointment Update

Around 4:00am Monday morning my mom and I left to travel to Philly for my appointment at 8:40 at Temple. We always leave early so we have plenty of time in case of traffic, accidents or anything that could delay us. It takes a long time to schedule an appointment so we wouldn't want to do anything on our part that would cause us to miss it.

I received the results of the testing I had done and it's official that I have diffuse gastroparesis. They did tests and it showed that my stomach has trouble moving both the liquids and solids from my stomach, and that my colon doesn't want to work correctly either. The rest of the testing turned out to be basically normal (which is kind of what we figured.) I'm just happy to actually hear a diagnosis that they can prove. It seems like there was always a question as to whether or not I had gastroparesis, but now that the test show it, maybe we can figure out how to procede. They did stress that there is not cure, but they may be able to better control the symptoms it causes.

The doctor is starting me on a medication I took a few years back with no success. He wants me to try it again for 3 months until my next follow up appointment. They did also give me a consent form and information on a surgery that I am a good candidate for that has helped some people. Originally, people called it the stomach pacemaker, they thought it worked basically like a heart pacemaker to stimulate the stomach to contract and move food along as it should. Since then, they found out that it doesn't work quite like that, but that it does relieve some of the symptoms associated with gastroparesis such as nausea and vomiting. I'm supposed to think over this surgery until my next appointment which is 3 months from now, and if I want to proceed we will start the ball rolling from that point. We did tell them that they could go ahead and submit the paperwork to the insurance company to see if they will even cover it.

So that's about all that happened at Temple. In a future post I may discuss the surgery more in depth, but that's for now, that's all.

Next week I have 2 appointments, one with my local GI doctor and the other with my GI nutrition doctor for my monthy TPN visits.

Taking it one day at a time!!!
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Botox!!!

Well, I had my first injection of Botox!!! It better take away all the wrinkles and leave me looking and feeling good :)  Ok, so I did have a Botox injection, but probably not in the way you are thinking.

Thursday night we left for Temple again and stayed at a hotel again. We actually got to stay in the same room we had last week. I had to be at Temple for 9:30 in the morning and with traffic being crazy we decided to just head down on Thursday and stay. I'm glad we did because traffic was super bad because of the beaches being evacuated.

We actually didn't make too bad of time getting to Temple on Friday morning. We were a little early, but that was better than being late. They informed me at registration that I would need to give a urine sample before they would do the procedure to make sure I wasn't pregnant. I had to laugh because I don't go that frequently and I had just gotten up and went already. They ended up having to give me a bolus of fluid and wait a little while before I was able to give them a couple of drops.

While they were taking my history and asking all kinds of questions, the fellow asked if I had a gastric emptying test before that had shown delayed gastric emptying. I wasn't sure how to answer her because I've had four of them. One showed I did, the next was normal, then I got sick during the next one, and then I just had one the previous week which I didn't know the results too. So she left, and I thought that was the end of the conversation but about 5-10 minutes later she came back. So confirmed that the gastric emptying test I had the previous week showed that I did have delayed gastric emptying. (That is all I found out from the testing I had the previous week, and she didn't go into detail.) 

So since that test showed it they were going to go ahead and do the EGD with Botox. Everything went well with the procedure, I can't go into detail about it because I was out. What they do though, is a regular EGD and then they inject Botox all around the pyloric valve. The Botox paralyzes the valve so that it stays open and the goal is that it will help the stomach empty. 

Now it is a waiting game to see if it will work or not. They did inform me that it may not work, but they have to give it try before they do anything else. It can take 3 days - 2 weeks for me to start noticing if it's going to work. I'm hoping it does. 

I do have a follow up appointment in October with the actual doctor which I haven't seen since my original appointment in March. It's supposed to be a one month follow up, but October was the quickest they could get me in then. They did say I could call a certain person and she would probably be able to get me in sooner.

I'm heading back into work tonight, but thought I would give you all a little update.

Taking it one day at a time!!!

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CCRN

Monday I passed my CCRN test!!! I went with a coworker to take it and we both passed. I was so excited. It is a very hard test, some even say it's harder than the NCLEX.

Last Two Days at Temple!!!

Sorry for the delay in posting about the last two days of testing at Temple. I thought I would write just a little bit about the last two days, but I still don't want to go into detail.

Thursday and Friday of that week were the worst. I definitely don't want to have to go through any of that stuff again. It was NOT pleasant!!! If I were a doctor I wouldn't schedule those tests unless they were absolutely necessary. Nobody should have to go through that stuff just for the fun of it.

I just want to say that when you are in the medical field I think it makes some things worse. Especially when you know the resident isn't doing something right but they don't know that yet and you have to be the one to tell them :-/  Plus, it doesn't help your confidence level in them when they act like they don't have a clue what they are doing and have to ask the person in the room with you what to do before each step and if it's the right thing. The worst, is that the person they are asking is either a nurse or a radiologist. It is kind of funny though, when you keep a secret that you are a nurse and actually probably know more than they do, and then you can laugh on the inside about what they are doing wrong and how embarrassed they would feel if you told them you were a nurse.

We still haven't heard any official results of the tests or even spoke with the doctor yet. So I really don't know anything about any of the tests I had done.

I leave today to head back down for more tests tomorrow. Hoping it all goes well tomorrow. Also, hoping I get to see the doctor and maybe hear a little bit about the tests I had last week.

Philadelphia Zoo

Wednesday

Today we headed in to Temple for around 11am to get my scans for the day done and out of the way. I was able to see a little bit of the screen and I could still see the radioactive stuff still in there. I just don't know how far along it is supposed to be then compared to how far along it actually is on me. Hopefully I will hear the results of some of my tests before I head home. I'm not so sure I will though, because I don't have any appointments actually scheduled with the actual doctor. My GI doctor at home wants me to get copies of all my tests results, or just really pay attention to what they say, haha!!!

After I was done with the scans for today, we decided to go to the Philadelphia Zoo. It was a nice sunny/hot day. I enjoyed taking pictures of all the animals, so I may be posting some pictures from the zoo in the days to come.

Not looking forward to the tests scheduled for the next two days. I will be posting more updates tomorrow.

Taking it one day at a time!!!

Tuesday - August 16, 2011 - Temple Day 1

Today I started a 4 day emptying test around 8:00. It started out by having to eat an egg sandwich with 2 eggs and a glass of water. They had a radioactive substance in both the egg and the water. Then for the next 6hrs they watched to see how far it gets through with periodic scanning. At first they the scans every half hour and then they do it only once every hour. It makes for one long day, and it gets pretty boring. Fortunately you are able to walk around some in between the hour scans. Over the course of the next 3 days they just scan you once a day, for 8 minutes at a time and then you are done for the rest of the day.

I was able to get most of the sandwich down, but didn't feel very well after eating it for a couple of hours. So hopefully they are able to see what they want to see and maybe be able to learn a little more about what is going on with me.

I had to stop all stool softeners/laxative and any motility medications because it would interfere with what is actually going on in the GI system. The way my body works, I would think they should still be seeing it one the last day, because I probably won't have a BM with not being able to take any medication to help things move along. So it will probably be in there, somewhere!

After the 6 hours of scanning, my mom and I decided to go do a little shopping. It was fun, but by that time I was pretty tired so didn't get to really enjoy it as much as I would have like to.

Tomorrow, I just have to go in sometime after 11am and before 3:30pm to get my scans done for that day. We are thinking that since tomorrow will be the day with the least tests, we may try and go to the Philadelphia Zoo.

Taking it one day at a time!!!

Beginning of a BIG Week!!!

This week has been a long time coming. I have been waiting and dealing with Temple since March to finally get tests/procedures scheduled. Now, the time has arrived and now I am quite nervous and almost wishing this week wasn't here.

Monday evening, after my mother gets off work, we will travel to a hotel we rented in New Jersey (which isn't too far away from Temple). Then we will leave bright and early for Temple on Tuesday where I/we (not sure what mom will do yet) will be at the hospital all day have testing. I think the first day is a test that takes 6hours. As of now, I'm not totally sure how the rest of the week will play out, probably just depends a lot on how things go. If things go well, my mom and I might be able to do a couple fun things like going shopping or maybe to the zoo. We'll see!!! I may be pretty miserable some of the days though. I will do my best to tough them out though because I want to have some fun too, and not be miserable the whole time.

Will be posting more about my tests later, but I am too embarrased to post about some of them right now. Maybe after they are done I won't be as embarrased to share, but for now I can't. Hopefully I will be able to laugh about it later.

Prayers would be appreciated this week. I want the Lord's will done, but I would like to get some answers and help if available.

Snippets and Snapshots - Memories For a Lifetime

I just added a page on Facebook where I will be posting my pictures from the shoots that I do. The page is called "Snippets and Snapshots - Memories For a Lifetime." Feel free to "like" this page on FB.

Snippets and Snapshots was a name I thought of because some of the pictures that turn out the best are actually snapshots and each picture is just a snippet in that persons life. Memories For a Lifetime came about when I lost someone really close to me and I could only find 1 picture of that person that I had taken. That is when my interest in photography slowly started. I regretted that I didn't have pictures of that person to carry with me for the rest of my life. So I started out taking pictures of my nephews and it kind of just went from there. Soon, I was enjoying taking pictures of scenery, landscapes, animals, and other children and family. People soon started asking me to take of their children and families after seeing the pictures that I had done of my nephews.

I really enjoy photography, but as of now it is only a hobby and am not too busy with it. I would like to be able to do more shoots and get more experience. I think it's kind of funny because I didn't know I was interested in photography while I was in school and before I started college. So I went to college and became a nurse, and then realized that I loved photography. So I am in the best of both worlds. I love nursing and I love photography and I really wouldn't want to give either of them up.

With everything that is going on physically, I would like to get more photography business and maybe eventually cut back on nursing maybe to part-time, and do photography part-time. Those are just dreams right now though. Especially since I am in school to further my education in the medical field.

Beautiful Evening!!!

Last night was my last night off before I leave for Temple. So, my boyfriend and I spent it together at a lake. I had been hoping for a beautiful sunset to take pictures of, and it just so happened that I got my wish!!! It turned out to be a beautiful, breathtaking evening....it's amazing how the sky kept changing. The first few photos were at the beginning of the sunset and the last were at the end.

Potassium Levels

I had blood work done today to check my electrolyte levels. I had been having to only get my blood drawn once a month, but my levels have been off a little lately so I have been having it drawn more frequently.
I received a message after getting my blood drawn letting me know that my potassium level is still low, but that I am already at the max dose they can add to my TPN. So they called in a prescription and want me to try to take some potassium pills also. So we will see how that goes, because potassium is hard on the stomach and causes nausea on a good day for normal people.

I haven't heard yet when they want my blood work drawn next.

A week from today I start my testing at Temple. I'm starting to get nervous about that already.

Taking it one day at a time!!!

Colors of Summer!!!

Lucky - August 2011

We were doing some corn from our garden and Lucky decided she wanted to try some. So I thought it would be a great time to grab the camera and take some pictures of her.

So Beautiful!!!!

This tastes so good!!!!

Finally After 5 Months of Waiting - Things are Getting Scheduled!!

After 5 months of waiting and dealing with Temple, things are finally on the move. After them letting me know that they had lost my chart, things miraculously starting moving forward. Funny, isn't it? They lose the chart and then things start happening.

I received 2 calls from the actual doctor himself (I think one was even from his cell phone!!!) The first call from him was just throwing ideas around of what he wanted to do and the second was that he had found my chart and had come up with a more definitive plan of what he wanted to do. So we agreed on what we would do and he said somebody would be calling the following week to schedule when I would come down.

I got a call the following week and I am now scheduled to go to Temple. I will be down there the week of the 15th for testing that whole week and then go back the following week on the 26th for a hopefully "simple" procedure with no complications and won't have to miss work anymore than necessary. I will be going into more detail briefly in future posts of some of the things that will be done while I am down there.

I just glad things are finally looking like we are going in the right direction. I will probably be posting more frequently now, since things maybe actually be starting to happen. I hadn't been posting because nothing new was going on, and it was just the same old thing.

Taking it one day at a time!!!

Temple Update!!

I spoke with my doctors secretary last Friday and she told me that they had lost my chart and that was why nothing was being done. She said they were going to have to go through all of the doctors patient charts to see if they could fine mine, maybe it had gotten filed wrong or something. An hour later the doctor called and said which tests he wanted to do and that somebody would be calling me on Monday to schedule the appointment.

I wasn't going to hold my breath on waiting to hear from them yesterday and when 4:30 rolled around with no phone call I wasn't too surprised. Even though I was still hoping, I didn't really expect them to follow through since I've been dealing with them for the past 4 months.

Last evening around 9:00, I was on a date with my boyfriend and a call comes through with a number that I don't recognize. I let the call go to voicemail. When I listened to the message it was my doctor from Temple, so I called him right back. He said that they had found my chart and that he wanted me to come down to Temple for 4 days to have testing/procedures done. So now I am just waiting for a call to get that scheduled and hopefully I will soon be heading to Temple for a little while.

Will keep you updated.

Taking it one day at a time!!!