Tuesday, November 30, 2010

No tube tomorrow

Even though my new tube will be delivered tomorrow, I won't get it placed. Talked to my Interventional Radiologist today - he is at home sick with pneumonia. And he wants to do the placement himself, as he thinks that he won't need to use contrast dye (now that he knows my anatomy :-) ). I reacted so badly to the contrast last time that I don't want to take any chances with another doc...

He thinks that he will be back at work on Thursday, and he promised to fit me into his schedule. I am really, really hoping the tube change will happen Thursday. I don't do well with gastric feeds, formula always comes up during the night which makes me wake up gagging.

Too tired to blog more today. But I will definitely have to blog about my work soon - I love being a psychologist!

Monday, November 29, 2010

Deja vu

I have really managed to slow down last week. I decided to take a break from the internet, e-mail, and blogging, in an attempt to "de-stress" my life. Just go to work, come home and enjoy the evening with my husband, let my gut heal from the effects of the contrast dye, don't chase my replacement tube - just relax and feel better.

I went to see a TCM doctor on Thursday, trying to add an alternative therapy method to my treatment plan - actually, as I am writing, I am sipping my very bitter and disgusting tasting Chinese medicine :-). Thank god my insurance company covers 80 % of the doctor's visits - I still have to pay for the medicine though.

M and I spent the weekend at home at my parents' house, had a really good counseling session with our family therapist, and felt very relaxed and calm when we arrived back home in Vienna yesterday at lunch time.

And then I ate lunch and started feeling sick. At 4 PM I had to hook up to my formula and after tube feeding for a short while, I started burping my formula. So yes, after only 13 days my tube has migrated back into my stomach.

I hardly slept last night, not knowing what our next steps were going to be. I talked to my dietician this morning, and we talked about a straight PEJ-tube. Unfortunately, my GI doc is refusing to place another tube, as he can't keep me sedated (apparently with the doses of propofol he was using, he would actually need an anesthetist to watch me.

I then called Dr. T (my Interventional Radiologist). He knows that my replacement tube (a  Mic-key j tube without gastric access) is 80 cm long and can be shortened individually, compared to the Mic-key gj-tube that comes in a length of 45 cm (for adults). A sample of this tube has already been ordered for me, but, unfortunately I can't get it before Wednesday morning. I am therefore trying to get through on oral foods and g-feeds until Wednesday.

Dr. T. told me that he thinks he can place the tube without using contrast dye (he knows of my problems). I really hope he can. I have tickets to go see a musical Wednesday night, can't have diarrhea that night.

Please, keep your fingers crossed that all will go smoothly on Wednesday, and that I won't require contrast dye.

And that that tube finally stays down.

Monday, November 22, 2010

Wow that contrast dye hit me hard...

It's been a week since my tube change now, and I have still not fully gotten over the effects of the contrast dye yet. I was told that yes this contrast can cause diarrhea, but only of a self-limiting short nature.

It seems that I have really upset my intestines, I tried some well-cooked vegetables Friday night, and I was in so much pain and bloated really badly over the weekend. Didn't do my diarrhea any good either.

But I think I am finally getting better. Today is the first day that I don't have cramps and pain. I really hope that I can introduce some veggies again soon, and maybe some deli chicken. Besides tube feeding, I have only been eating plain rice, pasta and white bread. Very boring.

Jejunal feeding is still going well. I did have to turn the rate down again a couple days ago, as I felt really sick. But I am already increasing my rate again. I am planning to slowly get myself up to 120 ml/h that way I might be able to get my feeding time down to 12-14 hours a day, and I would have more time off the pump!

Tuesday, November 16, 2010

My very sensitive GI tract and I

When I came home from work yesterday, I thought that it was only going to be a matter of hours until I had gotten rid of all the contrast and the diarrhea would subside. Even when I was going through a particular bad phase between 5 and 8 PM, I still thought that I could go back to work today. I even set my alarm clock to 6.15 AM (although M had already told me that there was no way I would be going to work). A bout of diarrhea at 4.15 AM in the morning was all I needed to realize that maybe he was right about not working today.

It's now early in the afternoon and my GI tract is still very upset. I am still having large amounts of diarrhea and consequently have a hard time keeping myself hydrated. I am contemplating on seeing my family physician, but she has no appointments left for today, meaning that I will wait a couple of hours before getting in. Sitting in a waiting room and having diarrhea is not one of my favorite pastimes. Still that bottle of IV fluids that she could potentially give me might be an incentive to go and see her.

Monday, November 15, 2010

A Tube Girl's tube adventure

I arrived at the hospital bright and early this morning for my tube repositioning. Dr. T. and his assitants were very kind to me, but unfortunately it took a lot longer to reposition the tube than he expected before. He originally had said to me that it will only take 5-10 minutes.

Well, it took almost 90 minutes.

I was not sedated for the procedure. On the upside I was able to watch everything on the screen, on the downside I could feel them proding around in my stomach and intestines.
At points, it was quite uncomfortable. Dr. T. had the same problem as my GI-doc with his wire and catheter always looping in my stomach and those loops put lots of pressure on my stomach making me feel nauseous. It took them a while to figure out which wire to use in order to not have to deal with coiling.

Then they had a real problem getting the catheter and wire past my pylorus, as it was simply not opening up for them. They had me think of my favourite food, trying to trick it into opening. I thought off my favourite ice cream (not that I can still eat it).

Once the right wire and catheter were down in the jejunum the actual positioning of the tube only took a matter of minutes and did not hurt at all.

I felt very shaky afterwards, but still made my way over to yet another hospital, this time to work. My boss was very kind, asking me if I wanted to take the day off, but I told him I'd rather stay.

That's when the probably contrast induced diarrhea started :-(. So yes, I am back home now. Once I have finished this post I am planning on a nice long nap with a bean bag and a cat (my old feline Laura is the best "nurse kitty" one can imagine).

Saturday, November 13, 2010

Dislocated tube

I started burping my formula yesterday, feeling full, not being able to eat on top of my j-feeds. I tried not to put any thought into it. This morning I decided to check my stomach contents and was very disappointed to be able to syringe tube feeding formula out of my stomach.

I have just come home from a radiological placement check.
Unfortunately my tube has migrated back into my stomach, and is now pointing towards my esophagus. No wonder I'm burping my feeds.

When the radiologist proceeded to tell me that she would not be able to re-wire my current tube, I broke out into tears. I don't have a replacement tube yet, I don't even know how quickly I will be able to get one. She then called my friend's Dad (who has agreed to change my tubes fluoroscopically) and after talking to him, passed on the phone to me. He told me that they don't have the staff available to do it tonight, but he will come in early on Monday morning and will re-wire the tube.

36 more hours and I have my j-tube back!
Hopefully!!!!

Tuesday, November 9, 2010

Another worry dealt with

With starting to work at the hospital I also got assigned to a different insurance company again. This insurance company is known to be really restricted in what they are paying for. It already was a good sign that they improved my zofran odt without needing further prompting from one of my docs.

But I was still really worried about my Mic-key extension sets. This insurance company only pays for pumps, formula, and feeding bags from one enteral food company, Fresenius Kabi. Luckily, I already use the right pump, food and bags. And they usually only pay for the button extension sets of Fresenius' own button. They might still be compatible with the Mic-key button, but unfortunately their quality is supposed to be poor. This would mean that I would have to pay 90 Euros a month to buy my own Mic-key extension sets.

I sent an e-mail to the woman responsible for enteral nutrition at my new insurance company telling her that I only needed one pack with five extension sets a month. I had heard that they were willing to pay for 30 Fresenius extension sets. For some reason I could not imagine that five Mic-key extension sets would really be that much more expensive. And I was right!
I talked to her on the phone today, and they are willing to pay for my extension sets if I only need one pack a month!

This made me soooo happy! I used to be able to get three weeks out of one Mic-key extension set, but the formula I am on now makes them go stiff really quickly. One week usually is my limit before I have to replace the extension set. 5 pieces a month will make life very easy for me!

Monday, November 8, 2010

Tube feeding in public is just a question of practice

It's been 12 days of continuous tube feedings, and on 10 of those days I have been tube feeding in public to some extent.

I have come to the following decision - it's all a question of practice. I leave hooked up for work in the morning and leave work hooked up to my pump in the afternoon, having to take the subway and tram each way and therefore getting lots of practice in tube feeding in public. After 10 days I have managed to forget that I am hooked up and feel surprised when I see someone staring at me, until I remember that I have a tube running from my backpack to my belly.

But mostly people don't stare, as there is no reason to stare. If I feel strong and secure in what I am doing and "wear" my tube proudly, it won't be less obvious to everyone else.


I asked one of my clinical psychology instructors what to reply if one of the doctors or nurses at the hospital I work at see me with my tube and ask me, if I had a feeding tube. He told me to reply: "Yes, don't you?".
And that's the point - our tubes are our way of eating and getting nutrition - that's our normal. Just because other people don't need tubes to eat and keep themselves nourished does not make us any less normal.

So don't be hesitant to feed in public. This is your normal and you have a right to your normal!

Friday, November 5, 2010

J-tube-feeding update

J-tube-feeding has been a a real solution to my problems. I am up to 95 ml/h over 16 hours. I do eat some orally, but not a whole lot. My dietician emphasized that the focus should be on tubefeeding at the moment and not on eating orally.

With the current set-up, I have not been nauseated in four days. I have honestly forgotten how it feels to not be nauseated to different degrees all day long.

I am so grateful for finally being able to bypass my stomach and feed into my jejunum. My jejunum rocks!!!

Thursday, November 4, 2010

Insurance woes

I have private insurance on top of my regular health insurance. Last week's tube change was done at the private hospital where my gi doc works at. Yesterday, I received a letter from my insurance company telling me that they would not pay for my stay there, as this hospital stay was required due to a metabolic disorder.

I almost couldn't believe it when I read it. Since when is gastroparesis considered to be a metabolic disorder? I called my caseworker at the insurance company this morning, and she was not very friendly, but she said she would give my case to the insurance doc again and have it reviewed.

I know they will have to pay, and my Dad is a lawyer and will help me out, but still it mad me really angry and frustrated.

Being a j-tube feeding dancing tubegirl

I have posted about this on inspire already, but nevertheless I wanted to post it here again too. At the moment I am feeding 16 hours a day. My 8 hours off the pump are spent working at the hospital as an (almost) incognito tubegirl. Almost, because I show up and leave hooked up to my pump and backpack.

On Tuesday, M and I had our weekly ballroom dancing class. I did not want to not hook up for those two hours, as I can't really afford to not tubefeed for two hours during my tubefeeding time at the moment. I therefore decided that I can dance and be hooked up at the same time.

Yes, the other couples did look at me and probably wondered what I was doing with a backpack on the dance floor. And yes, our ballroom dancing instructor (while using his microphone so everyone could hear him) looked at me and said "Today with a backpack?", but when I silently pointed to the tube sticking out from the backpack and going up my shirt, he quickly apologized.

And then we just had fun and danced and danced and danced!!! 

Monday, November 1, 2010

Starting into a new part of my life

Tomorrow at 6 AM my alarm clock will ring, and I will get up into a new part of my life.

Tomorrow at 7.45 AM I will arrive at H, the hospital I will work at for the next six months.

Tomorrow at 8.00 AM I will sit in on the doctor's morning meeting, and I will hear, see, and breathe neurology....

I am really excited to start working tomorrow. I have worked there before, I know what will be expected of me, but this time I am not a student anymore, this time I will have more responsibilities. My boss doesn't know that I am a tube feeder. There was no need to tell him back in January, but this time it's different. My dietician and I are still aiming to have 8 hours off the pump and backpack, so I don't have to work hooked up. Still, I will have to let him know anyway, as I will probably come and go hooked up, and he will see me with my backpack and tubing. I just want to avoid stares and odd questions by telling him up front.