Wednesday, December 29, 2010


I was taken down to endoscopy at 8 AM this morning. Unfortunately they only have 15 FR PEG tubes at the hospital, so they put in a 15 FR PEG tube into my 18 FR stoma. Looks kind of funny.
They then threaded down a j-tube through the PEG deep into my jejunum. Apparently, it has a pigtail at the end and that's supposed to make it stay down even better.

Of course, I am happy about my ability to feed into my intestines, but at the same time I am really sad that I had to give up my button and instead have this long and dangly tube.

I was given the option to go home or stay overnight in hospital, so I went home instead, and I have been crying on and off ever since I got home. I just really hit me that this is it for now.

I asked my GI doc today if he was willing to try again in a few months, and he replied that maybe I wouldn't need to tubefeed anymore in a few months. It's statements like these that make me really insecure - he hardly knows my case yet, and I have been living this for the past five years, and yet he still claims something like this?

Tuesday, December 28, 2010


It did not work.

Nothing else to say. Don't ask me how I felt waking up, realizing that I had no new tube. They called my husband right away, as I was so upset.

The possible plan is to put in a peg-tube and wire down a j-line through it, hoping and praying that it will stay down.

Ready, set, go....

It's 11:15 AM, I have just finished a glucose infusion, now I am waiting to get my IV antibiotics and then I am ready to go and get my new PEJ tube. If everything works well, I can start tubefeeding tonight!
My GI doc said during rounds that we could pull my g-button tomorrow, but I phoned my dietician afterwards, and she wants me to keep it a bit longer. She said she dreamt last night that I should keep it in - poor thing actually dreams about me :-).

Monday, December 27, 2010

Checked in already

I arrived bright and early at the hospital, am all checked in now, had an ultrasound of my abdomen, an ekg, blood taken, ran into my GI doc in the hallway and so he rounded on me there :-), then got a visit from the anasthesiologist, who totally cracked me up by the way - I love his humor - he asked me for example if I snored which of course I denied - then he said: "good, I don't like competition". :-))

Have a lovely older lady as a roommate, a former elementary school teacher, and I have been having really nice conversations. She is in for an upper and lower endoscopy, pour thing has to start drinking Golytely soon... - and I will dutifully stay away from our bathroom :-) so she can use it anytime.

I am in really good spirtis, everyone has been really kind to me, I saw the dietician too and have all my special food ordered for the next few days.

Sunday, December 26, 2010

Off to the hospital in 12 hours

M and I drove back to Vienna today, spent the day being very lazy (including a two-hour-nap on the couch), playing around with my Kindle, downloading new books, doing some reading and thouroughly loving the reading experience :-).

One more sleep and I'll be off to the hospital. Still have to pack my stuff - I will definitely bring my netbook and mobile internet - and of course my Kindle :-). I am a bit nervous, but I know I will be in good hands.

Saturday, December 25, 2010

Merry Christmas!

In Austria we celebrate Christmas on Christmas Eve. Therefore M and I drove home to Linz yesterday to celebrate with my parents and my grandparents.

This is our christmas tradition:
We first have dinner together, usually Fondue, but yesterday M and I brought our electric terriyaki barbecue grill. After dinner, we darken the room, light the candles on the christmas tree (yes, we always have a "real" tree with "real" candles). My Mum plays the guitar and we sing christmas songs. "Silent night" (which is by the way originally from Austria) is always the first song we sing. After a few songs my Grandfather always reads a christmas story, followed by more songs. M and my Stepdad are not very big on singing, but my Mum, Grandma, and Grandad certainly make up for it. Afterwards one of us sits down by the tree (that's usually me) and passes out the presents, and we each take turns opening our presents, so that we can all enjoy that person's surprise and gratefulness for the present.

We had a very lovely evening, and I was finally able to play around with my new Kindle. M ordered it from the US for me and it arrived at the beginning of december. I am very proud to say that I did not touch the parcel for the past three weeks, even though I would have loved to rip it open the moment it got delivered!

Something really funny happened though. I had asked my Mum for an gift card for buying books for my Kindle. I got a $ 30 gift card from her. All excited I got onto my Stepdad's computer and by accident credited the gift card to his account :-(. Now, we are waiting for amazon customer service to get back to us if the $ 30 can be transferred to my account.

Today we visited my Dad and his family (about an hour drive away), and had a really lovely time there - played Barbie and Lego with my little sister :-) and read her a book.

By the way - just got an e-mail from amazon's customer service - they unredeemed the gift card, and I was able to put it into my account. Now, I just have to know which books to get on my Kindle. I definitely need some good reading material for going into hospital on Monday.

I hope everyone is having a lovely christmas!

Thursday, December 23, 2010

Finally good news

My dietician got me in to see a new GI doc today. She knows him and has already told him the main points, we also sent him a detailled medical history yesterday.

Turns out he is one of the only GIs in Austria that know how to place direct PEJs and he teaches the technique all over Europe. I immediately liked him and this is the plan we came up with: I will be admitted to the hospital coming Monday, I will get lab tests done and an abdominal ultrasound. On Tuesday he will place the tube, and he wants to have an anesthesiologist there just in case (I am really happy about that decision). If all goes well, I will be able to start tube feeding a couple hours after surgery and go home the next day.

What  a christmas present!!!!

Monday, December 20, 2010

I guess I have to start looking for a new GI doc

My GI doc finally mailed and basically my case is too complex for him. Lots of conflicting information going on from his side. He basically said to me today that he has no experience with PEJs or PEG/Js. A PEG/J is the standard GJ-tube in Austria. What he placed in October (the Mic-key GJ) is usually not available in Austria. With a PEG/J all he has to do is place a PEG (which he can do) and thread down the J-part (which he already did with the Mic-key). The J-part of the PEG has a bengmark memory spiral (like a pigtail) making it more likely to stay down in the jejunum. There is no way that I believe him that he has never placed a PEG/J.

My dietician is trying to get me in to see someone else for a PEJ or PEG/J placement as soon as possible. I guess it's a good thing he is telling us now that he can't deal with my case any longer, as I need a really good GI doc for when I will get pregnant. Makes me sad though.

I am feeling the effects of less energy and protein, and I pray that a solution will be found soon!

Saturday, December 18, 2010

Still no news

My GI doc did not get back to us by Friday. I did not want to bug my dietician again and decided to not call/e-mail her until Monday. She ended up calling me Friday afternoon anyway, and we talked for quite a while. She is a bit confused why my GI doc did not at least write us if he was going to do something about my situation. She wants to give him until Monday, if he doesn't e-mail either of us, she will call him. We definitely need a response, otherwise she will try to find me a different GI doc to put in a PEJ.

I am getting really exhausted and tired from not getting in enough calories. It's not like I can rest and conserve my energy, I still have to work a 40-hour-job. To top it off, I am the only psychologist on staff at the neurology ward for the next three weeks. I really need my energy. That's why I am resting this weekend. In fact, once I have completed this post I will cuddle up with a cat or two - and M of course - on our couch and watch a movie.

I am so looking forward to being able to post good news and don't have to keep on whining about the same stuff over and over. It's been 9 days of waiting to find out what the plan is and when I will be able to go back to j-tube-feeding and it has really started to affect my mood.

Still, I try to not let it affect me when I am working, as it wouldn't be fair to my patients if I couldn't give them the attention that they need.

Wednesday, December 15, 2010

At last a word from my GI doc

Not a definitive word yet - but he e-mailed my dietician to say that he had been on vacation and will get back to us hopefully over the next few days.

I also e-mailed with my OB-GYN, and she will prepare a written statement for my GI doc as well in regards to the importance of jejunal access for a future pregnancy. Maybe that will be an incentive for him to fore-go a JET-PEG trial (PEG tube with j-line) and give me a straight PEJ right away.

Tuesday, December 14, 2010

Trying to focus on work

Yesterday, I was waiting all day to hear either from my GI doc or my dietician, checking my phone and my e-mails multiple times throughout the day. As a consequence I was not able to focus on work as much as I should, and I was impatient with clients when I should not have.

Today, I am going to put some make-up on - figuratively and literally - put on my happy face, make myself feel pretty and try to forget about all my tube problems while I am at work.

Sunday, December 12, 2010

If anyone has time to send some good thoughts ...

My dietician e-mailed my GI doc early Friday morning, and so far we have not heard from him yet, and usually he does get back to e-mails quite quickly.

I was thinking of writing him an e-mail to with some more details in regards to my current situation and also what j-tube feeding meant for me - an increase in quality of life. I also wanted to let him know that my ob-gyn is very hesitant in letting me get pregnant without a jejunal access of some sort.

After mulling it over all day, I finally wrote the e-mail tonight and sent it to him, basically asking him to help me get a more permanent, more secure jejunal access and therefore help me to have a better quality of life.

Please send some thoughts, say a few prayers that he will respond positively to it.

Thursday, December 9, 2010

Here we go - here we go again....

That's right.
As of yesterday afternoon, my tube is back up in my stomach again. And I feel sick and nauseated - no wonder when you think that about 60 cm of an 18 FR tube are coiled up in my stomach.

This time they placed a longer tube thinking that this would make it stay down. To no avail, this time the tube retroflexed after only 6 days. I didn't even bother calling Dr. T (my interventional radiologist) - there is no sense in him putting the tube down again. I did talk to my dietician, and she is trying to organize a PEJ placement. She is actually on vacation this week, but will help me nevertheless.

I have also asked her if I can pull the gj-tube out tonight and replace it with a regular g-button. It's not like I will be needing it for another re-wiring.... and I really want to get rid of the long tubing in my stomach.

Please, keep your fingers crossed for me (and maybe say a few prayers) that my GI doc will agree to place a PEJ-tube and that he will have time before christmas!

Wednesday, December 8, 2010


Today, eight years ago, M and I went on our very first "real date" and by the end of a very cold winter evening we were a couple :-).

I am so happy we both found each other. Before I met him, I never knew that I could love someone so much. The past 8 years have not always been easy - it's never easy when one partner is sick, but we have learned so much from it and our love for each other has only grown deeper and more intense.

For hearing my thoughts,
understanding my dreams,
and being my best friend,
for filling my life with joy and laughter,
for loving me without end,
I do.

Tuesday, December 7, 2010

What a wonderful experience

Today I had a truly wonderful experience at work. This morning I was at the neurology ward trying to find a patient that I was supposed to examine. But this patient had just been picked up for his MRI, and I was on my way upstairs to our office again, when the physiotherapist and occupational therapist stopped me asking me if I wanted to join them with Mr. A., a 30-year-old patient from India. Mr. A. has been on the ward for almost a year now, when he came he was in a vegetative state following mengingitis and emergency brain surgery. Now, he is slowly starting to wake up more and more, he is starting to be responsive to touch and sound and is able to follow simple instructions. Mr. A has only been in Austria for 5 years, he has no relatives here and for the longest time our physiotherapists and occupational therapists have only spoken German with him, when one of them decided to try out speaking English to which he responded a lot better. Unfortunately their English is limited, especially when it comes to giving directions needed for their therapeutic work. Riding up in the elevator with Mr. A and the occupational therapist I told her that I speak English really well, and if she wanted I could help her with it - something that she really appreciated.

What really touched me was seeing Mr. A's eyes light up and his face slowly being drawn into a smile when I started chatting with him in English. I told him about the cold weather and the snow, I translated all the instructions given by the occupational therapist, and seeing him smile and giggle simply made my day.


My current rehab patient Mr. P. had a stroke during bypass surgery following a heart attack. The stroke affected him in the following way: he has agraphia making it difficult for him to write, alexia which is affecting his reading and acalculia.

Acalculia is the loss of the ability to perform mathematical operations (even simple ones). When I first started working with Mr. P. he could not count from 1 to 20 (forwards and backwards) without making several mistakes, he could not write numbers, he could not calculate at all. Additionally, his attention span was really low, and he had memory problems.

After three weeks of neuro rehab geared towards his acalculia and memory problems, Mr. P. is now able to do additions and subtractions up to 100. He can also do simple multiplications. He is able to write numbers and has a better grasp of them too. His memory has gotten better and he's able to focus on therapy.

Imagine being 70 years old, and having to learn something that you learnt in elementary school all over again, working hard to do calculations that your grandchildren can do without even having to think about it.

Nevertheless, he has worked really, really hard in therapy, and I am so proud of him.

Monday, December 6, 2010

Plan B

I have a really hard time not worrying about my j-tube retroflexing back up into my stomach.
After I had it replaced the first time, I was really able to let go of my fear of having it migrate.
And then it happened again, and now I can't stop worrying. I worry because I don't know if and when it will happen again, and if I will have to wait for a few days or more without being able to feed into my jejunum.

I worry because I don't have a replacement tube, and if it happens again, I will either have to have the current tube re-placed again or already have a plan B in place.

I worry because I know that having it migrate again means that I am not a good candidate for a "through the stomach" j-tube.

And now I am trying to have a plan B put in place, something to fall back onto if this doesn't work.

Plan B is a direct PEJ (percutaneous endoscopic jejunostomy). And actually when you take into account that I want to get pregnant sometime next year, a PEJ is a really good plan. I asked Dr. T. last week about getting my tubes changed in interventional radiology while during pregnancy. He told me during the first 14 weeks tubes can't be changed in interventional radiology. At the same time my GI-doc told me he can't change my tubes during pregnancy either, as there is no way he can give that much propofol to a pregnant woman. In my opinion a gj-tube therefore is not a good option, you never know how pregnancy and an expanding uterus will have an effect on a tube retroflexing into the stomach.

Friday, December 3, 2010

Sick :-(

Well, the tube is in. It took almost an hour again to get it placed, as Dr. T. didn't have the right wire and catheter available, but he told me today that he will order some special wires and catheters for me to be able to place the tube more smoothly in the future.

He was kind enough to stay on after being on night shift to replace my tube. I am very grateful for having him on my team. All in all it took until 11.30, by that time I had only had a few sips of water and was feeling very shaky. It didn't help that what I thought yesterday was only a minor cold has grown into a really, really bad cold. And since Dr. T. did have to use contrast dye again (but only very, very little), I decided not to go to work (for only two hours anyway), but instead get myself on the couch with a couple cats (or more) and a bean bag.

Austria is experiencing a lot of snow right now, and I would have loved to take a romantic walk in the snow with M on the weekend, but I will have to stay in bed instead, trying to get healthy enough to go back to work on Monday. There is one positive thing to it though, M will do the weekly shopping and cleaning :-).

Thursday, December 2, 2010

Neuro rehab

I work at a neurology department covering two neurology wards and the neurology outpatient clinic. I mostly deal with neuro psych testing, but I also take care of rehab patients. For the past four weeks I was in charge of Mr. F's neuro rehab, a 72 year old patient post-stroke. When he first started seeing me, he had a really low attention span, difficulty naming objects, virtually no memory for names, short and long term memory problems, and a visual field defect.

Mr. F. has been the model rehab patient, very optimistic and motivated in his neuro rehab sessions. Today I had my final session with him, as he is being discharged tomorrow. Now, after four weeks he still has memory deficits, but he has made so much progress!

He was so sweet when he thanked me today for helping him get to the place where he is now, I almost got a bit teary.

Tube change day tomorrow

I am finally getting my tube changed tomorrow and repositioned in my jejunum. Hopefully this time it's going to stay down!
Please keep your fingers crossed that Dr. T. won't need to use contrast dye!