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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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.

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!!!

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!!!

July 5th Bloodwork!

I had my blookwork drawn again on July 5th to recheck my levels since they adjusted my TPN this last time. My numbers still came back a little off, so they had to do some more adjusting and I go back on the 18th for some more bloodwork.

It had just dawned on me this week that I have now been on TPN for 5 months. The worse part about it is, that we are no closer now to getting things done to try and get me off of it. Such as running tests and trying procedures that work for some people.

Temple is still causing us frustrations. I have called 4 times now since finding out I was denied by my insurance for the one specific test they wanted. The test they wanted done first was denied, so I need to find out what the new plan is and what they want done next since we can't get that test done. I'm hoping they will say that we can just skip that test and do all the other things that Dr. Fisher wanted done.

I don't know what the deal is with them. They don't return my calls, and half of the time I have to leave a message because nobody answers the phone. I don't know if it's the staff or what the problem is. It seems like everyplace I go I somehow drop through the cracks and nothing happens. I will be calling them again this week plus probably sending some emails to see if we can get things moving in the right direction.

Taking it one day at a time!!!

GI Nutrition Appointment - 6/30/2011

I had my GI Nutrition appointment last Thursday. I really like the doctor I see for my nutrition appointment. He was a fellow but as of July 1st he was going to be an attending. I requested to keep seeing him and he agreed so that was good. I will be going back in another month.

I got my first B12 shot that day. They are going to start doing them every 3 months. I haven't noticed a difference since getting the shot though. I was hoping it would give me more energy or something, but I can't tell that anything is different.

I did have more bloodwork done today to recheck things since they changed my TPN formula the other week because my labs were messed up. So we will see how they are this week. They had it done today so they can change the fomula for tomorrows delivery if they need to.

I will be having some other bloodwork done around the 18th that my family doctor wants done. Other than that I will see GI nutrition again at the end of the month.

Taking it one day at a time!!!

Update Ramble!!!

Not too much new to report on lately. Temple is still not returning my phone calls. I will be putting in another call/email this week. I have a GI nutrition appointment on Thursday. My labs were off last week so they will be needing redrawn next week. They had to adjust my TPN so we will have to see how my labs look next week. Will keep you posted as/if anything happens!!

Taking it one day at a time!!!

6/17/2011

Still haven't heard back from Dr. Fisher, so I guess I will be calling back on Monday and seeing what is going on. I've noticed that Temple seems really bad with getting back to me after I've called them. I even spoke with a real person this last time and still haven't received my call back yet.

I also am having my blood work on Monday. I had them add a hepatic function panel to the labs because I've been noticing that my eyes are a little jaundiced. Liver failure can be an adverse effect of TPN, so I just want to make sure that everything is alright.

Other than that there is really nothing new happening. Just taking it one day at a time and trying to go with the flow!!!

Wednesday Wonderings

So, I've been doing a lot of thinking lately about the future and realistically how these problems are going to pan out in the long run. I just have different thoughts about if this or this happens, then what?

In regards to being on TPN with no idea when I could come off of it and not do it anymore. TPN has to be given through a central line. Well anytime you put a foreign object into the body it has a good change of becoming infection since it is foreign. It is the body's natural response to fight off things that are not supposed to be in it. So, I started off with a PICC through which the TPN was given. That became infected and I really had no other place for them to put another one, so they had to put in what's called a broviac. That line was placed in my subclavian (chest) area. So what's going to happen when that one becomes infected? Where will they put the new line? I figure I will eventually run out of places for them to put the lines for me to get the TPN. If I don't get the TPN, well then......(let's not even go there.)

In regards to treatment options and Temple. Things have gotten worse since I have been at Temple. My bowes have since gone bad. There was talk about the gastric stimulator. Well, if they are able to stimuate my stomach and I am able to eat, then it will just back my bowels up and cause more/different probem. It seems like it's a no win situation.

I've also gotten to the place that I have been dealing with this for so long with no improvements, that I have pretty well lost hope of ever getting better. By that I mean through medical and spiritual intervention. I know God is the Great Physician and can do miracles, but I feel like he can do that for everbody else but me. Then it seems like everytime the doctors refer me to great places that specialize in treating this, that I just fall through the cracks. I found out last week after 3 months that my insurance will not cover me to get the first test that I need done at Temple. So now I have a bunch of phone calls to make, but with no real hopes of getting anywhere which doesn't make me in a hurry to do them.

Now for something on the cute/funny side of things. I was talking to my nephew Taylor on the phone the other day and was asking him what he wanted for his birthday which was last month. Here is how the conversations went.

Taylor: " I want a gun that will shoot real bullets and when you pull the trigger the bullets come out and kill people."
Me (in shock): "Who do you want to kill?"
Taylor: "Drugs"
I was shocked because Taylor is the sweet one and it just surprised me that he would even say something like that. Then when he said drugs I realized what he was trying to get at since drugs are a big issue where they are at.

Hoping to be able to sleep good today and be well rested for work again tonight.

Taking it one day at a time!!!

Update 6/8/2011

Nothing too exciting has been happening lately. I've been keeping busy with work.

I went back to work right away as soon as I was done with IV antibiotics. Work really takes a lot out of me, but my main problem is that I can't sleep. I usually don't get to sleep until 10:30-11:00 and then for some reason I am up by 2:00-3:00 and then I'm done sleeping. I sometimes will try and take a nap again before I have to come back in, but most times I think it makes it worse. I don't know whats with my body. It seems weird to me because at home I can't sleep, but when I was in the hospital it seemed like all I wanted to do was sleep.

I had a doctor appointment yesterday with the family doctor for a follow up from my hospital admission. I scared the PA a little because at first she thought I had a fever, but when checked via a different route the reading was better. She did mention she would like me to keep track of my vitals to make sure I'm not spiking any fevers or anything like that.

My next appointment is not until the end of the month and that is with GI nutrition to see if my TPN needs adjusted or anything.

Taking it one day at a time!!!

When It Rains, It Pours!!!

When it rains, it pours.

Wednesday I found out that my insurance will not cover me at Temple. I wasn't happy with the news, but what bothered me the most was that they waited 3 months to figure that out and tell me. We are in the process of trying to figure out how to approach this and what we should do next. There are a couple options we can look into, but it still doesn't look too promising.

Then on Thursday morning after work when I went home to hook up my TPN my PICC site was all red and nasty. I know it had been hurting at work that night, but it occasionally had done that in the past so I wasn't too concerned. So I had to drive all the way back to Geisinger and they said it was bad and it had to come out. (which means no TPN and no nutrition) Then they scheduled me for surgery the next day to have a tunneled cather placed (also known as a Broviac or Hickman catheter).

After coming home again my arm then started with a nice red streak going up it. After phone calls to the GI clinic and a visit with a home health nurse I had to come back to Geisinger and go to the ER. They gave me a dose of IV antibiotics and had me come back first thing in the morning to see if they would still do the procedure or not because of the infection.

So Friday I came to Geisinger for 7 am. They did decide to go ahead with the procedure. After the procedure was over and they were getting ready to discharge me when I stood up my heart rate jumped into the 150-170's. So they had me sit a rest awhile and they decided to give me a bolus of normal saline to see if that would help any, but it didn't. Then it was decided that they thought my mediport catheter was tickling my heart, so they decided that they would go in on the other side and pull out the mediport and clip the catheter and then put it back in. So I spent all day at Interventional Radiology then waiting for them to do this second procedure.


I had a little bit of a rough time during that procedure, but after it was over my heart was still acting up. After a few phone calls and discussion, they figured my heart was beating so fast because of dehydration from not being able to do my TPN for a couple of days. So they decided to admit me. They wanted to watch my heart, give me TPN, and give me IV antibiotics.

So I still sit here in the hospital, hoping to soon get out. I need to get back to work....

Taking it one day at a time!!!

Appointment update for 5/19/11

I had an appointment Thursday morning with my primary GI doctor at Geisinger. Overall, it went fairly well. I think I figured out part of why I have trouble with him. It is how he comes into the room and greets me and his attitude. He immediately gets me on the defensive, so then I feel like I have to fight to just try and tell him how things are going. He does it the same way everytime too. I was able to get past that and then things seemed to go alright then.

 

They are increasing my TPN. They were letting me do every other day, but now that I am back to work I must be burning more calories so I had lost some weight. Plus, I wasn't able to get the full 14 hours in on the days I did work. So now I will be doing the TPN 5 days a week with 2 free days, but they also lowered the time and the volume. Instead of doing 2,000mls over 14 hours, I will be doing 1,500mls over 10 hours. I shouldn't have any trouble getting the full 10 hours in since I am only working 8 hours shifts. So I guess we will see how that goes.

 

He also changed my G-tube at the appointment. It had last been changed in December and it recently started draining quite a bit more than normal and it had a foul smelling odor to it. Well, he informed me today that the tubes needed changed every 3 months. I would think they would be keeping track of that and have me schedule appointments to be getting my tubes changed, but I guess not. My J-tube should have been done also, but he didn't even mention that. That should have been changed in April.

 

He did ask how things are going with Temple. So I explained that nothing has been scheduled or done yet. At the end then he said to contact him and he would try giving them a call if we REALLY needed him too. I would think that he should be already since it's been 3 months, but he did not seem to be in a hurry or volunteer to do it now. I guess he thinks we should give them a little more time on there own.

 

We did receive another email from Temple and it looks like we are getting closer to getting the first test/procedure scheduled. I'm hoping (not going to hold my breath though)!!!

 

I'm on a long stretch at work right now, I'm on day 4/5. So only 1 more night and I will have 2 days off.

 

Hoping to maybe get out on Saturday and go fishing with my dad. It's has been a long time since I have been fishing. I used to love to go fishing and would do it quite frequently, but with going to college and than working nights I haven't done it much. Maybe I will try and take a camera along and see if I can get any nice pictures.

 

It has been really dreary here lately, in weather and in spirit at times. Hoping that the sun soon breaks through and warms and cheers things up.

 

Taking it one day at a time!!!

No Phone Calls (yet)!!!

Hope you haven't been holding your breath hoping I would get that phone call. Temple has not called yet. So they will be getting another email from us....

I have a doctor appointment in the morning tomorrow. Hopefully I will be able to update tomorrow with how that appointment went.

I'm just a tad nervous because its with the doctor that always seems to get me quite frustrated. Hopefully that won't be the case tomorrow.

Taking it one day at a time!!!