Wednesday, December 29, 2010

PEG/J

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 amazon.com 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....

Yes.
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

8-year-anniversary

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.

Acalculia

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!

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.

Saturday, October 30, 2010

A hospital funny

Yesterday morning I asked the student nurse if I could have some dish washing soap to rinse out my extension set.
After about five minutes the doc on duty walks into my room and questioned me why I needed dish washing soap. "To rinse out my extension set", I replied. What did she think I wanted to do with the dish washing soap....
Yes, and I did get my soap ...

Friday, October 29, 2010

Travelling experiences

I did not feel like blogging about it as long as I was still on vacation, but here my experiences as a travelling tube girl.

I had called Lufthansa ahead of time and was transferred to their medical operations officer. He assured me that I would be able to get 20 kg extra in medical luggage free of charge. This is something I needed desperately due to the amount of formula I had to bring for my stay.

I had checked in online for us the night before, and therefore we only needed to drop off our luggage at the baggage drop off counter. That's where I was told that the medical operations officer did note in my file that I had medical stuff in my suitcase, but failed to note that this would be free of charge.

I got soooo mad!!! That's why I had called Lufthansa ahead of time! Anyway the woman from ground crew told us that she can't do anything about it, and we had to pay 10 Euros a kilo for every kilo we were over our 40 kg (20 kg per person). Fortunately M is a very light traveller, so we were only three kilos over, but still I was not prepared to pay for that. We then started taking out as much clothes as possible and put it in our carry-on luggage and thankfully that worked out.

Once back home I wrote the medical operations officer I had dealt with an e-mail asking for an explanation and what I could do to prevent that from happening in the future. So far I have received no answer...

Thursday, October 28, 2010

All is good after a long day and a short night

M and I drove back to Lissabon yesterday morning, arrived there at 3 PM, got checked in and waited for another couple of hours until we were finally able to board our plane. We had flown down to Lissabon with TAP and it had been really, really narrow. What a difference it made being on a Lufthansa flight to Frankfurt yesterday. So much more space! We were behind schedule when we left Lissabon, and I really worried that we would have problems catching our connecting flight to Vienna. (That was one of my tube worries, that I would miss my flight, the next one would be in the morning and then I would be late for my tube change in Graz...) We did have to hurry through the terminal, but we ended up easily catching the flight. Back in Vienna we missed the cheaper S-train, had to wait 20 minutes for the fancy CAT (city airport train), then wait again for the subway and make our way home through the cold after having just flown back from summer....

The cats were well and really needy, and somehow we didn't end up sleeping until 1.30 AM. At 5.30 I stopped feeding, had the (not so) brilliant idea of letting the cats into the bedroom and therefore our sleep was very interrupted until we finally had to get up at 7 AM. Got everything ready for my tube adventure and set off for Graz at 8.45. M dropped me off at the clinic at just after 11, got myself checked in, had blood taken and was just getting myself settled in when my gi doc walked into the door. Usually I don't see him until I am down in the endoscopy unit. And the funny thing was that it turned out that he had been in Barcelona on a congress and had missed his connecting flight in Frankfurt to Graz and didn't return until this morning... :-).

The tube change itself was kind of horrible, as I woke up in the middle of it, and I apparently fought everyone very hard and needed more meds to stay asleep. With so many meds on board I needed a bed transport, and the really funny thing was that already in the endoscopy unit I only spoke English (remember - I am in a strictly German speaking hospital) to everyone. It kind of freaked out the nurses and they were happy that back upstairs my husband was waiting for me and able to translate for me. It took a while before I finally started to switch back into German. English, after all, is my "comfort language" - no wonder I only wanted to speak English after such a uncomfortable experience.

My gi doc is very happy that Dr. T. has agreed to change out my tubes in interventional radiology, as he said it was getting harder everytime to keep me under.

I have j-tube feeding since 3 PM now - 9 hours. I am up to 40 ml/h. So far everything is going well. I was even able to eat a bit on the orally, and I did not feel sick because I only had to eat really small portions!!!!

More tomorrow....

Tuesday, October 26, 2010

Having fun on vacation!

M and I are having so much fun! We have been to the beach every day - always exploring different beaches. We are enjoying the warm weather and the sunshine, hard to belive that it is snowing back home. Really does not make me want to fly home tomorrow. :-)


I will post more photos once I am back home, as I have a very slow internet connection here. I am down to two more sleeps before I will have my tube change, and it can't come a day sooner. I am not doing very well with oral foods and have had to reduce my tube feeds too, because I can't feed very fast during the night. I am feeling the lack of energy and am tired all the time, but hey, I am on vacation and I sure enjoy sleeping in with my husband :-).

Sunday, October 24, 2010

Friday, October 22, 2010

The tube is in and we are off :-)

I was called yesterday evening that the tube had arrived in Vienna and it will be delivered to me early this morning, just in time before we are off on our mini-honeymoon!

Our flight leaves at 11.20 from Vienna, first to Munich and then off to the ocean and warmer weather! I have booked us a car, and we will be able to drive around and explore the beaches and the ocean. We will return late Wednesday night, only to be off again early Thursday morning for my tube change in Graz.

I am really happy that we are going on vacation now, otherwise I'd be sitting at home and counting down the days and sleeps until my tube change.

Tuesday, October 19, 2010

My guardian angels are working overtime!

After I found out yesterday that the tube change in X was not going to happen, I was very disappointed and frustrated and consequently had a very hard time sleeping. It certainly did not help that with M being away for the night I had allowed all three cats to sleep with me in the bedroom, something we never do. Laura, my senior, was the only one who did not interrupt my sleep, but the other two did not contribute to a good night's sleep.

Still, as always, things happen for a reason. Here a recap of the past weeks events:
  • 23rd of Sep - my dietician and I opt to try j-tube-feeding - my gi doc does not want to try
  • 29th of Sep - my obgyn asks me why my tube is in my stomach and consequently encourages me to not give up on j-tube-feeding
  • 7th of Oct - my dietician convinced my GI to place a j-tube
  • 8th of Oct - the hunt for the very cool low-profile Kimberly Clark jejunal tube begins, as it is not being sold in Austria
  • 13th of Oct - a friend of mine tries to get me in for a tube change in X (another European country)
  • 15th of Oct - I receive the confirmation from Nutricia that they will be able to get a low-profile j-tube for me
  • 15th of Oct - my friend in X tells me the tube switch is a go
  • 16th of Oct - Cathi's Dad (an interventional radiologist) agrees to perform all my future j-tube changes
  • 18th of Oct - my friend in X tells me that the tube switch can't happen, as the gi they had asked to do it is not in the country, I would have to change my flights and stay until Friday, M would travel back home alone
And here it comes:
My very busy GI doc here in Austria has agreed to change the tube next Thursday. The tube we ordered is supposed to arrive this Thursday or Friday. M and I are off on our mini-honeymoon on Friday, back late Wednesday night, will have to tube delivered personally early Thursday morning (the 28th), then drive to Graz to check into the hospital.

All along I have kind off felt uneasy that I had planned the tube switch to happen in X and not with my own GI. I always felt that I might not be wise to get it done somewhere else, as I still need him as my GI.

Now all I need to happen is the tube to arrive on time here in Vienna.

Monday, October 18, 2010

A j-tube hicc-up

I was informed today that the tube can't be changed out on the 25th or the 26th of October, possibly on the 28th instead. I don't want to go into details, but good friends had actually organized for me to get my new tube at a hospital in Europe that actually has experience with these types of tubes. My return flight is booked for the 27th. Changing the date for the tube exchange means changing my flights and this means having to pay extra.... The tube that was ordered for me has also not yet arrived. And I should really wait for the tube to be at the hospital before I change my flights, but the longer I wait, the more expensive it will get.

Sigh.

Friday, October 15, 2010

J-tube is a go!!!!

After (what felt like) a million e-mails to various people all over Europe, I have organized the following:
I will get my low-profile j-tube (through my existing gastrostoma) either on the 25th or 26th of October. I also have my friend's Dad on board now, who is an interventional radiologist - he will do my tube changes from now on. I still have to call him tomorrow and talk to him in person, but my friend already talked to him today.

I am so looking forward to the switch! And I really hope my jejunum will start to adapt to the feeds quickly.

I will be the only person in Austria that has this fancy Mic-key low-profile j-tube!

Wednesday, October 13, 2010

Malabsorption continues

I had my blood levels checked again on Monday. My iron and ferritin levels are good, but noticeably lower than only 7 weeks ago. I was told that I might not need iron infusions regularly, but if it continues to drop like this, I'll be requiring IV iron again in four to six months.

Additionally, my vitamin D level is below normal again. It was really good after supplementing with oral vitamin D, but I stopped supplementing after I had reached normal levels at the end of August. Actually, my levels were really good then. It is kind of scary to know that I am vitamin D deficient again only 7 weeks later. Especially when you think that statistically vitamin D levels are the highest in the fall due to all the sun exposure.

Obviously malabsorption continues to be a problem.

No news yet on the tube, still keeping my fingers crossed that I will get it soon.

Tuesday, October 12, 2010

A wonderful weekend

I really took a weekend off from the internet, from researching tube stuff, checking my e-mail account for possible replies regarding the tube stuff.

And it felt so good! I was able to relax, spend time with my family, spend time with M, do some shopping with a really good friend, and take much-needed mid-morning naps :-).

Turns out the our car is not damaged beyond repair, actually, according to the mechanic (now loosely related with me, so I guess I can trust him), it is still a really good car and just needs a bit of love and care (and some more repairs...). We therefore left it with my parents and it will be repaired in time for my parents to drive our car to my graduation ceremony next Monday.

Things have been more difficult with getting myself one of those fancy button j-tubes. I did finally find a place in the US where I can order it, will have to pay shipping, but hopefully no customs, as it is a medical product. Additionally, an opportunity has been opening up here in Europe, please keep your fingers crossed that this will work out, as this opportunity would actually mean having a j-button-tube-knowledgeable doc place the first tube. I hope to find out more over the next few days. We have also now determined that a j-button will be sufficient since I don't really need gastric decompression. This are a lot cheaper and therefore more justifiable to insurance. I will also be started on as needed zofran (finally)!

Friday, October 8, 2010

The latest GJ-tube news

After talking to my dietician this morning, there is still some confusion on our next steps. She had forwarded me my GI doc's e-mail, and he wrote that he can advance a J-tube through the existing gastrostoma, but it would have to be a balloon-type transgastric J-tube. Because this does not entail a new operation (in the sense of having to make a new stoma) this is ethically acceptable. Furthermore, he asked her if she could obtain a balloon-type transgastric J-tube.

The thing is, officially, there are no balloon-type transgastric J-tubes available in Austria. I have already e-mailed two Kim-berly clark distributors in Europe a couple weeks ago, both never replied back. I have also asked the medtech firm that imports my AMT button to find out whether they can order a Mic-key J-tube for me. I have heard from them once 10 days ago that they were going to tell me last week....

My dietician is contacting Nutricia today (they distribute the Mic-key G-button in Austria), and I have e-mailed several Kimberly Clark digestive health partners within the European Union. Of course now the waiting game begins again. It is Friday noon, have not heard back from anyone, therefore assuming that this is it for the week.

If we are able to order a low-profile J-tube, we will still have to get approval from my insurance company....

The next obstacle is whether we really want my gi doc to place the j-tube. Yes, I would have needed him for the JET-PEG, but the way it sounds is that he wants to not place the j-tube endoscopically but do it blind-style??????? No fluoroscopy, no endoscopy, just pushing down that tube - that sounds lovely!!!

The thing is, one of my best friends' Dad is an interventional radiologist, and maybe I could get him to place the tube fluoroscopically? (and maybe with sedation???)

Sometimes I am still wondering if it's worth the fight. I mean I know it is, but shouldn't everything being going a whole lot differently for me?

I am leaving Vienna in a couple of hours to visit my parents, and I have decided to take a computer-free weekend, no researching for tube options, no checking my e-mails ....

Thursday, October 7, 2010

And then the e-mail came....

I just received an e-mail from my dietician.

She has convinced my GI doc to place a PEJ-tube!!!!!!!

Now I just have to find out the logistics of it!!!

Impatience, worries, thoughts....

My dietician told me yesterday that she is giving two courses today, and that I won't hear anything from her today.
Still, I am nervous, unsure, impatient etc.

In my ideal world, I would receive an e-mail from my GI doc today, telling me that he has reconsidered the GJ-tube topic.

In this Tubegirl's world - no e-mail has been delivered to my inbox so far, contributing to my impatience and worries. I am usually not a worrier, but when it comes to decisions or life-changing events like these, I can't help but think about it - a lot...

I am really scared. I know I am losing weight, hard to believe at 2.400 kcal a day... I don't like losing weight at all, I loved being at a higher weight, having lots of energy, being able to go running a few times a week. I am not running at the moment, knowing that I have no energy to spare.
I know things cannot go on like this. I am supposed to start my internship (full-time) in a few weeks, I am supposed to be functioning then.

Sometimes I am questioning myself if I am working hard enough to get my stomach going. And I am worried that things will continue to go down-hill. And I am having a hard time accepting the fact that I really might need a J-tube to make things easier on my digestive system.

I have not yet heard back from my Mum's TCM (traditional chinese medicine) doc. But knowing that TCM is definitely not a quick-fix, I still think that following other options at least for the now is appropriate.

I am also still trying to find out if I can get my hands on a Kimberly Clark Mic-key GJ-button-tube. The thought that I am having to go back to a traditional style peg-tube with a j-extension is playing on mind too.

M just left to visit his parents in Tyrol, and I am trying to keep myself occupied.
"Get up, dress up, and show up" - that's my motto for the week.

This said, I am going to switch off the computer, go out to run some much needed errands, clean the apartment, and maybe do some sewing and ironing in the evening!

Wednesday, October 6, 2010

J-(tube)-talking continues

After I got such a negative response from my GI doc on the j-tube question, I tried to not dwell on it and improve my situation in other ways. Of course, things continued to not be easy for me. When I saw my Ob-Gyn last week and she asked me why my tube is in my stomach, I could not let go of the j-tube that easily this time around. The past few days have been really difficult again emptyingwise. Not being able to eat enough orally, not being able to compensate with tube feeds.

I have now stopped all sports activity, so I won't need extra energy.
Yesterday, I decided to action again. My OB-Gyn wanted to have my latest blood test results via e-mail. So I asked her if she maybe could talk to my GI doc now - instead of waiting until next spring (that's when she wanted to talk to him in preparation for a pregnancy. I told her that my dietician is all in favor for it too. I sent this e-mail cc to my dietitian as well.

When I got up this morning, I already had a reply from my dietician in my inbox, telling me that it was not necessary to ask my OB-Gyn to talk to my GI doc, she could easily convince him too....
What???? She never told me that....

Anyway, I got to talk to her this afternoon. Until I find out how I can order one of those cool Mic-key GJ- or J-buttons, I will have to make due with a regular GJ-tube. This means at least two endoscopic procedures - one to place a regular PEG-tube and advance a J-tube through it - enabling me to have gastric and jejunal access (here in Austria we don't call it GJ-tube - we call it JET-PEG, and I rather like that name - sounds fun somehow...), and a second one to hopefully replace the JET-PEG with a GJ- or transgastric J-button.

My dietician thinks that my GI doc just is too busy to organize everything and therefore was hesitant to place it.

So she sent him an e-mail this time, asking to trial a GJ-tube with me and also told him that we would organize the necessary tubes....

Please, keep your fingers crossed that this will work out for me, and that my GI doc will come round on that issue.

Tuesday, October 5, 2010

A weekend away - full of adventure

M and I had planned a weekend at my grandparents' cabin in the alps with friends and their little son Theo weeks ago. Even though I wasn't feeling the greatest, I was still looking forward to going away.

Saturday morning came, we fed the cats, packed up the car, and left Vienna for our weekend away at 9 AM. I got all comfortable in the car and fell asleep just out of Vienna (I am an accomplished car sleeper). I woke up to M driving on the emergency lane, telling me to get out the cell phone, so he could call my stepdad (he is the handyman in our family). Turns out that our cooling unit had a problem and the temperature had risen to 130 °C. My stepdad advised us to call the OEAMTC (our auto club) immediately and they sent out a mechanic to come and have a look. I had to call Julia to tell her that we would be late and they should not leave Linz yet, in case we needed to catch a ride with them.

The OEAMTC mechanic came, had a look, sighed and told us that we should not drive that car a single meter or otherwise our engine might break down. Luckily our car broke down just outside of Linz, the mechanic towed us to my parents' house, we parked the car there and were able to continue our journey with my Mum's car.


We all had lunch at the cabin...


... and Theo enjoyed running around in the yard and playing with his Dad...


... while Julia and I rested on the patio.


My Dad just moved to a village a few kilometers away, and I decided to surprise him and my sister and come for a visit. I left the cabin at 7 PM, it had just started raining, and it was slowly getting dark out. I entered the address into my navigation device, but could only enter the village's name, not the address. Well, I thought, no big deal, I will be able to find it. Half an hour later I was getting desperate, there were no street names, just numbers on the houses and I couldn't even see those half the time. I called my stepmother who was away on a course, but she didn't answer. Then I called my uncle, who didn't answer either. Lastly, I decided to blow the surprise and call my Dad, but I couldn't get a hold of him either. I had the car parked in a field, with the lights turned off while trying to reach some part of my family, when I noticed someone approaching with a flashlight. I opened the car door, got out and almost gave the poor woman a heart attack. I guess it is a bit frightening, if you are walking in the dark all by yourself and someone suddenly jumps out of a dark, parked car :-). Anyhow, this woman did not know the address, but when I started telling her that my Dad is a lawyer who just had moved there and it was a really big house, she told me that it could really only be that one big country house. But she told me that it was really difficult to give me directions to get there with me not being from there. So I asked her if she was all right if she got in the car with me and showed me the way. Luckily, she was. (Thank god I am not a man, as she would not have gotten into the car with a man :-) ).

It was the right house, and no, I would have never found the way myself! My uncle's car was parked in front of the house too, therefore it was no surprise to me, when I rang the door bell and my uncle opened the door. He was so surprised that he did not say a single word when he first saw me, and when I motioned him to not say that it was me he told my Dad, who was just coming down the stairs, that it was a neighbour. You should have seen the look on my Dad's face when it turned out to be me!!!

My sister was so cute too. She had just started with school (grade 1), and she showed my every single work sheet that they had worked on in those two weeks of school! I talked to my Dad and uncle for a bit, was given three bottles of really old wine to share with my friends and M, and then drove back to the cabin.

At the cabin M, as always, had put more wood into the fireplace, forgetting, as always, that this fireplace really conserves heat very well and they had 27 °C when I came back!

Theo was already asleep and we chatted for a long time, enjoying each others company before I suddenly realized that the spare mattress M and I needed was located underneath Theo's bed. We had decided that Julia and Michael should sleep in the bedroom with Theo in the king size bed, and we were supposed to sleep in the living room/ kitchen with one of us sleeping on the couch and the other one sleeping on the spare mattress.
Of course there was no way that we would wake up Theo to get to our mattress, so M and I decided to share the couch for the night.

God, what a night. First, it was still really warm due to M adding more wood. Second, we only had a big winter duvet to sleep with - goose feathers - very, very warm. Third, the couch really is not meant for two people. Fourth, a giant spider landed on my neck at some point during the night, with me screeching AFTER I had turned on the light and realizing what it was. Fifth, at some point I decided to move to the floor (wooden with a carpet on it), not a good idea, moved back. Sixth,Theo was up chatting away by 7 AM, meaning that all of us were awake by then too...

After breakfast we got everything ready for a nice hike/walk and took the car to the Wurzeralm,
took the funicular uphill to 1400 m above sea level, and went for a really nice walk/hike up there.











On our way back, Michael overlooked a 50 km traffic sign, and we were held up by the police going 31 km/h above the speed limit. Sigh. We really didn't see it. Michael was supposed to pay 30 Euros, but neither he nor Julia had any money on them. In fact, I was the only one who had money - 20 Euros. Thank god, the police officer was kind enough to drop 10 Euros off the ticket....

On our way home we dropped off my Mum's car in Linz, and Micheal and Julia were kind enough to give us a ride to the train station. We arrived at 6.10 PM, and the train (the really fast one) was supposed to leave at 6.10 PM, but thank god one can always count on the OEBB (our Austrian train company) and the train was 15 minutes late giving us enough time to buy our tickets and something to eat for M.
Unfortunately the train was packed with students, and we could not find two adjoining seats, and so we had to ride separately :-(.

Even though our weekend did not go smoothly, it was so much fun to spend time with our friends and get out of Vienna for the weekend.

GP friendly smoothie

I just came up with a really good GP friendly smoothie recipe:

100 ml vanilla oat milk
150 g lactose free low-fat yoghurt
50 g mango (cooked)
a sprinkle of cinnamon sugar
Blend all the ingredients!

Makes a really liquid smoothie thanks to the oat milk!

Wednesday, September 29, 2010

Why is your tube in your stomach?

Saw my ob-gyn today for my womanly check-up and to tell her about what has been going on, so she can be prepared for when the time finally comes to talk about starting a family (sometime next fall).

We talked a bit, and I gave her my GI doc's last letter that pretty much sums up everything to read while I got undressed. Then she walked into the examination room, looked at me (and my feeding tube) and asked: "Where does your feeding tube go?"
Now she had no idea that this has been the hot topic of the week/months.
"To my stomach.", I said.
"If you have gastroparesis, why does your feeding tube go to your stomach and not into your jejunum?"
"Well," I said "that's what I am asking myself too."

Turns out that she is very worried with the current set-up and our pregnancy plans. She says that with my high energy needs she does not want me to go into a pregnancy without knowing if I will be able to feed myself enough through my stomach. She definitely favors a gj-tube, so we always have the possibility to feed into my jejunum.

I am with her, of course, I have such a hard time meeting my energy needs at the moment :-(, I have no idea how I'll do once I am pregnant.

She does want to talk to my GI doc in the spring time (well before we will start getting pregnant), so everything is all worked out and really ready to go for that adventure.

Why is my GI doc being so stubborn about it?

Tuesday, September 28, 2010

How to make your wife happy

With all the usual GI mess going on, I have not gotten around to share a really cute "M"-story:

Last Wednesday I had gone to bed really late (at around 1 AM), as I spent the evening researching on j-button-solutions available in Austria.

When I finally went to bed, M was deep asleep. Just after I had switched off my night light, M started talking in his sleep.

"Yes, yes, she is my wife."

And then he paused for a second.

"Julia ......" and he proceeded to say my name with my new (his) last name....

It was sooo cute and sure made me feel good.

Monday, September 27, 2010

Grieving

For some reason last week's events have hit me hard. Finding out that my GI doc does not think that a j-tube is such a good option, hit me really hard. At the same time it made me realize how bad things have gotten that we were really starting to consider a j-tube. I know that j-tube feeding comes with a whole set of problems itself, but do I really have less problems feeding through my g-tube?

I spent the weekend being really sad. What made me sad?
  • the thought of tubefeeding maybe for the rest of my life
  • the thought of maybe never being able to eat non-pureed chicken again
  • the thought of having to fight to maintain my weight
  • the thought that things might even get worse
I am usually a very positive and upbeat person, but I allowed myself to grieve this weekend. And to be honest I am still not done grieving.

Friday, September 24, 2010

Using scissors to cut mats out of your cat's fur - not a good idea :-(

I have to admit.

I did it again.

I am a repeat offender.

Three and a half years ago our cat Aimee had "kitty crap" stuck to her butt hair (oh the joys of long-haired cats) and in my attempt to cut away the soiled and dried in fur I managed to cut away a tiny piece of skin just above her anus. Unfortunately this tiny piece of skin managed to open up to a one-euro-coin big hole. And of course little Aimee needed to be sedated and a couple stitches.

I was told to not ever use scissors on my cat again.

Well, as it happens, Aimee is my cat with a vet trauma (that's a story for a kitty blog post on some other day). And my cat who hates to be brushed (unless of course she can sit in the bath tub). And my cat whose fur is so frizzy that she gets mats easily.

And of course I have been using scissors on her.
Repeatedly.

And then it happened again. She had some really big mats on her hips and I honestly thought that I needed to take her to the vets for a clipping if I could not get the mats out myself. Just the thought of Aimee at the vets and her post-vet spitting and hissing that usually lasts a week, made me grab the scissors.

And yes I cut her again. Bad, bad catmother. To top it off, I didn't see it right away. No, I did not notice it until yesterday. Of course we took her to the vet immediately. Poor little Aimee had to be sedated, the edges of the wound had to be recut and now my little girl has five stitches!

She was groggy all night and hissing at me all day long. Although I did get a couple cheek bites and kisses after all.

This is my little girl sleeping off her sedation:


And here a close-up of my "work" - not for the faint of heart:

Tuesday, September 14, 2010

Re-vamping my blog

I have started to remodel my blog page. The picture on top of the page was taken years ago in Victoria (Canada - Vancouver island). It resembles peace and calm to me.

I am also going to start adding pages on tube stuff. I just finished my first page on stoma care - if you want to have a look.

I am really excited to add more pages, although I would have never thought that it would take soooo much time :-).

Thursday, September 9, 2010

Tuesday, September 7, 2010

More wedding stories

Someone commented on how I had written about it raining in the morning hours and then the sky seamed to even be a bit blue when we walked out of the church :-).

That's exactly how it was. It was still a bit overcast when the ceremony began. The ceremony was coming to an end when someone from the church had already opened the church doors, and the priest actually said Petrus had given us a very special wedding present, as the sun was now shining. And it really was! It still wasn't too warm though which actually made me really happy - now that you have seen my wedding dress you can imagine how very hot it was underneath all that fabric!

After a million hugs and congratulations and kisses from everyone we sent most of the guests through the park to the hotel to have an appetizer while we went to have group photos done with our families and some very special guests.... - and then of course we had some photos of just the two of us.

At about 6.15 PM we asked everyone into the restaurant of the hotel - very beautiful with big sliding glass doors overlooking the lovely, very wild park of the hotel. M and I held a speech and then the buffet was opened!

M and I had come up with most of the foods that were being served at the buffet, and I must say we did a very good job. I was able to eat some of the foods too, and it felt very nice to be able to eat at least some parts of what everone else was eating and to not stand out that much. My corsage was so tight though that I was not able to eat lots and started to have GP symptoms right away. Had to ask my Mum to loosen my corsage afterwards so I wouldn't feel as sick.

M and I deserted our table very soon and just walked around and talked with everyone and had a really good time. People were actually commenting on how relaxed I seemed. Not only did I seem that way, I really was relaxed! For some reason I didn't worry about any of my guests (if they had fun, felt comfortable, liked the food etc.) - no - all I wanted to have was a good time myself and that's what I did. I danced for hours - knowing that I could dance anyway I wanted because I was the bride :-).

There was this little girl - a three-year-old - who, as I was told later on, still believed in princesses, and she thought I was a princess and therefore came running up to me all the time, wanting to dance with me and wanted to be held.

The girl in the red dress is Emilie who believed I was a princess
and I am listening to her father telling me all about it.
The little girl in the white dress is Maria - she is my half sister.


Sunday, September 5, 2010

A recap of the past week - Saturday 28th of August - WEDDING DAY!

The big day!!!

I hardly slept from Friday until Saturday with all the excitement going on. When I got up to have breakfast I felt very disorganized, not knowing where to start with everything. Don't ask me how many lists I wrote trying not to forget everything I was going to need. Packed my suitcase for M to take to the hotel with him - we had planned to stay the night there after the reception. Washed my hair again and blow-dried it really curly. Sent M off with his best man - with my suitcase, the box for the church (with the wedding candle etc.), 72 (wedding) muffins (homemade), and a heart-shaped wedding cake I baked with ingredients I could eat too. Even though I wasn't hungry at all I made myself eat some cream of rice with a banana (my favorite GP-friendly meal) for lunch and forced it down, knowing that I would really need the energy.

In the morning hours it had still rained, and I was having a bit of a hard time trying not to worry about the weather. I called my Stepdad who was going to pick me up, if I had a giant umbrella for me. He said: "I don't have an umbrella, but I have something even better. I have ordered the rain to be switched off in the afternoon." :-) That made me laugh and actually relax about the weather.

At 1 PM the stylist came to do my make-up and put the veil into my hair and transform me into a bride! Afterwards Arish and Nora helped me get dressed - what an adventure with a crinoline and a corsage :-), while at the same time they tried to get ready as well. My Stepdad came at 3 PM, telling me that he had just been stuck in the worst traffic jam ever on the highway, and we had to drive through town, which would take us longer. We left immediately with Arish, Nora, and James driving behind us in my car. We had really heavy traffic through town as well, but we still managed to arrive in time. Actually, my Stepdad and I didn't drive to the church right away, as I wanted to wait for everyone to be seated, before I made my big entrance!

And then my brother called telling us that he was stuck in traffic too. Therefore, when the best man called me to tell me that everyone was seated, and my Stepdad could drive me to the church, I actually had to tell him that two people were still missing - my brother and his girlfriend!
M told me later that the suspense at the church was quite high - everyone thought that they were waiting for the bride to arrive, when in fact the bride was just around the corner waiting for her brother to finally get there.

The ceremony itself was simply magical. My Stepdad handed me over to my Dad, who in turn walked me down the aisle and handed me over to M. I already started to cry when I walked down the aisle - seeing all my friends and loved ones looking at me and silently cheering me on, made me very emotional and made me remember once again how far I have come and how much I have overcome to get to where I am now.

Pictures really do say more than words - so here is a link to an online photo album of our wedding ceremony on PICASA - I am sure you will be able to see the magic that we felt!

Just click on the album to open it - and then you can select slideshow in the left hand corner of the menu bar.

Wedding!
 



Saturday, September 4, 2010

A recap of the past week - Friday 27th of August

And then it was Friday.

Here in Austria we have to be legally married before being able to get married in church. Therefore, on Friday at 11 AM we had our appointment at the registrar's office for our civil service wedding.

On Friday it was only going to be our immediate families and our witnesses to the ceremony. I left at 8 AM to get my first manicure ever, sent Nora, James, and Arish off to the Schönbrunn Zoo, started to get ready at 9.45, was starting to blow dry my hair, when Mum, my Stepdad, my stepbrother, and his girlfriend arrived at our place to drop off my wedding dress for Saturday, have a few glasses of water and relax a bit. That kind of threw me off though :-) - I am not used to other people being around me, except M of course, when I am trying to get my make-up and hair done.

So I felt a bit disorganized, running around in my bathrobe, trying to get ready. But I did manage to get ready in time, did forget my bouquet at home though - thankfully M took it with him (he took the subway, while I got to ride with my Mum and Stepdad).

The civil wedding was very short, I did have a couple tears in my eyes, but not too bad :-). It only took 10 minutes, the registrar basically just asked us if I wanted to marry M, and if M wanted to marry me and then she pronounced us husband and wife - that was it. I was really happy afterwards that this was not my "real wedding" because it didn't feel like it at all. We also took our rings off again afterwards.

Here are a few impressions of the civil service wedding:


M's Mum making me laugh :-)



Signing the marriage certificate

M had to sign too :-)
Legally wed!

Both our families - minus my Dad :-)


Afterwards we all went for lunch to an Italian restaurant. I had some pasta that I fought with quite a bit. I guess my stomach didn't agree with all the excitement!

M and I took the subway home from the restaurant. It was so much fun to see the looks on people's faces, as we obviously were newly-weds!

That Friday night we had a very special dinner with some very special friends who are so dear to my heart and I got to wear my dress again and be a bride once more.

Friday, September 3, 2010

A recap of the past week - Thursday 26th of August

On Thursday we all had breakfast together and talked and laughed some more. Afterwards I was off to get my eye brows done for the wedding, then we did some grocery shopping, took Arish to get her nails done, had lunch together again (I have not had so many meals actually sitting at the dining room table in a long time). The more I watched James eating his food, the more I understood how important a feeding chair is when it comes to feeding a one-year-old.

In the afternoon I took the girls and little James downtown for some sightseeing.

Nora and I (had to hook up my feedings)

Had dinner together again - it seems all I write about is us eating :-) - and some really nice conversations with Nora. God, how much I missed being able to talk to her.

It felt so normal to me to have everyone over at our place and share so little space. I guess with them having been my careworkers and spend so much time with me doing day-to-day stuff like cooking, eating, cleaning,.... it really felt like old times.

A recap of the past week - Wednesday 25th of August

On Wednesday Arish, M, and I all had breakfast together and then set off for downtown to do some serious sightseeing. The weather was really lovely, and we walked for two hours in the morning, came back home for some lunch and walked for three more hours in the afternoon.
The only slightly stressful thing was that I had obviously had hurt my foot the Friday before during our private dance lesson (for the wedding), and the walking aggrevated it and in fact my foot was really swollen and very painful, and I started to get worried about being in pain for my wedding on Saturday.
Arish and I had some very good conversations and it felt as if no time had passed since the last time we had seen each other. 

Nora and James were supposed to arrive at 6.35 PM, and I got M to drive me to the airport. I arrived in time, but of course had to wait for them to get through security as well. It was planned that Nora, James, and I took the train and subway back to our place from the airport, as I had no car-seat for little James. Nora and I had never even talked about a car seat. We did talk about me being able to borrow a traveling crib and a feeding chair from our upstairs neighbour.

Anyway, long story short, here I was again at the airport, feeling a bit of a deja-vu with just having been there 22 hours earlier, with the same nervous excitement in my stomach and pounding of my heart :-). I was so excited to see Nora and James finally walk through security :-). And I couldn't believe my eyes when I realized she had brought her car seat all the way from Kingston. So here we were - with a suitcase, a backpack, a car-seat, a tired baby in a stroller - there was no way I wanted to make us go home on the train now, especially knowing that with the car we would be home so much quicker. So I called M - he had just arrived back home from the airport - and of course M being the amazing man that he is hopped into the car again and drove back to pick us up at the airport. Well, if you remember, we have a tiny car, a very tiny car actually and after we had put the stroller in the trunk, James plus car seat and the suitcase in the back, Nora in the passenger seat it was determined there was no way that both of us would fit in the car. And yes, my amazing husband, let me drive Nora and James back home and he took the train back!

It was so nice to have dinner with Nora, James, Arish, and M. And of course I ended up going to bed really late again - so much to chat about with Nora!

Thursday, September 2, 2010

A recap of the past week - Tuesday 24th of August

After spending my the past couple days all day in class (I finally started my clinical psychology course on Wednesday - first 16 hours of 170 hours done ...), I finally have time to blog about everything that has been going on.

So this is the past week in a recap:

Tuesday - 24th of August:
In the morning I went to the outpatient clinic at our university hospital to get my albumine, ferritin, and vitamin D levels checked. It was exactly a month after I had started the semi-elemental formula in an attempt to reverse my hypoalbuminemia  and I had already received all my prescribed iron infusions.
After I had my blood taken, I originally wanted to do some shopping and get myself a new backpack to make a new tube feeding backpack, as it had been decided that I should start daytime tube feedings too, and I hated my ugly big yellow tube feeding backpack. For some reason I felt really dizzy after I had my blood taken, something that usually doesn't happen to me, and so I called my brother who lives downtown Vienna if I could come by his place (he is studying for an exam right now) and have a little lie-down. So that's what I did, relaxed on his couch, had some green tea, and was up to do some shopping an hour later.
Tuesday was the day that Arish was going to fly in to Vienna, and I was really looking forward to keeping myself distracted by adapting my new feeding backpack all afternoon. I picked out a really fancy new backpack, and I think it looks really good. I sewed for four hours, and this is the result:

You can hardly see the tubing - can you detect it? :-)

At five PM my dietician called to tell me that she had had a peak at my blood tests and that she had a very special wedding present for me. My albumin levels had gone up and were in fact low normal now. This means that the semi-elemental tube feed is working really well for me and this is what I have to stick with from now on. My hands and feet are looking a lot better too - less edema :-) - came with the low albumin levels....
We talked about how this means that I had to stay on the semi-elemental tube feeding formula, and we also talked about how this means that I will have to start tube-feeding during the day, as I can't tolerate that much volume during the night and was also lacking energy during the day. We talked about my insecurities when it comes to tube-feeding in public. I mean I was used to doing it when I was on continuous tube feeds last year, but back then I had my NG-tube so it was really obvious for everyone anyways. We talked about how tube feeding for me is the most normal thing in the world and how I should just treat it as if it was the most normal thing in the world. 
So that's what I have been doing - every day since last Tuesday. Arish's plane was very late - in fact - it was two hours late and didn't arrive until 10 PM that night. I was so very excited to see her and was so happy when the time finally came for me to drive out to the airport. I took my fancy new tube feeding backpack with me and hooked up at the airport in front of EVERYONE!!! I didn't even go to the bathroom (was so afraid to miss Arish walking out through security). My biggest worry was that I wouldn't recognize her. I am really bad with faces and even though I had seen her pics on facebook and she hasn't really changed all that much, I was really worried. So there I was waiting for her with my heart pounding and a little breathless and of course I recognized her right away when she walked through that security gate!!!! I cannot put in words how happy I felt that very moment. M and I had made some dinner for her (as she was supposed to arrive way earlier), so I got her checked into her hotel and then took her back to our place for some dinner, a tea, and lots of chatting. I ended up giving her the wrong directions to her hotel for her walk back, felt very bad about that the next morning, but she found her way anyway :-). I didn't go to bed until 1 AM and had lots of wild dreams with Arish mixed in....

Tuesday, August 31, 2010

Pics soon

After a whirlwind of a week everything is starting to calm down now. Arish left on Sunday and I dropped off Nora and James at the airport today. We really had a full house for the past week, with Arish also being over all the time. We had some really lovely breakfasts, lunches, and dinners with everyone actually sitting at the dining room table. M and I quite often have breakfast while working on the computer - or should I say - surfing the internet :-).

I received all the pics from the photographer today and as soon as I have more time I will post some.
I am starting my clinical psychology course tomorrow, but it's only two days this week. All in all, I only have six times three days I think over the next 10 months. My internship doesn't start until November 1st, but I am still working for my husband's (now, how does that sound....) organization in September.

I will blog a bit more about the wedding and the past week too in the next few days - it was a very magical week and an even more magical wedding!

Saturday, August 28, 2010

Wedding day!!!

This is it!!!
I don't really have time to blog - still have so much to do and get everything ready.

I have been having a blast - spending so much time with my dear friends and of course having my civil service wedding yesterday. So, yes, legally I am married - but today is my "real" wedding.
I am so glad am having a church wedding too. The civil service wedding was very formal and over in 10 minutes....

Pictures will follow soon!

Sunday, August 22, 2010

A non-wedding update

Besides all the wedding stuff that has been going on, I have still been trying to come to terms with my new tube feeding formula. I realized more and more that it's not the formula that I am having problems with, but more the fact that it is a 1.0 kcal formula (as opposed to the 1.5 that I had before), and I have to tube feed so much more volume and therefore longer as well. Besides those few months last year when I was on tube feeds only, I have always been a night time feeder. I was used to being able to eat some foods orally and top up my calorie intake during the night. Unfortunately over the past six months my GP has gotten worse, and I have been able to eat less orally. Thanks to the 1.5 formula I was still able to feed enough calories during the night, but I have started to feel worse during the day now, simply because I lack energy. Yes, I am getting enough calories and yes, my weight stays stable, but I was getting most of my calories during the night with the effect that I felt like I had no energy during the day.

So I have come to the decision that it is high time that I add day-time feedings to my schedule. I've tried all summer to up my oral intake - no luck there. I guess after almost two months I have to accept the fact that I just can't go by with being a sole night-time feeder any longer.

I started my day-time feedings this past Wednesday and so far they have been going very well. I am feeding in the afternoon now for a couple of hours. That way I am still able to have a liquid (oral) dinner, before I hook back up again before going to sleep. I am now back to feeding my regular amount ml-wise at night, I am able to sleep better again, as I don't constantly have to use the bathroom now, I am usually done feeding by 4.30 AM, and I get a few hours of sleep without tube-feeding. That's something I really enjoy - having a few hours without pumping food into me during the night.

And yes, I feel so much better now with day-time tube-feeds. Of course I feel so much fuller, because after all I am feeding into my somewhat dysfunctional stomach, but I have been trying to go for runs after I hook up in the afternoon and before I have dinner. Exercise always helps my stomach to get moving!

I guess it all still has to do with acceptance. I had no idea that I would have such a hard time to accept the fact that just doing night-time feedings wouldn't cut it any longer for me. I have been hooking up my afternoon feeds to my IV pole, but realized today that I have to bring out my backpack for those feeds. I hate being tied to the pole during the day.

I also have to try to get used to "outing" myself as a tubegirl, when I am out and about with my backpack. Without the NG-tube in my face, I have gotten used to being "incognito".

Thursday, August 19, 2010

I am starting to get nervous!

Today is Thursday, a week from tomorrow my two-day-wedding adventure begins. On Friday we have our civil service wedding with only both our immediate families present (parents, siblings and their partners), Manu's best man plus wife - if she can get over her morning (all day long) sickness by then and my maid of honor plus boyfriend and the twins.

My mind is buzzing with things I still have to prepare, buy, not forget.... It's definitely time to dig out the valerian root capsules that I had used in the weeks before my diploma exam.

At the moment I am sitting at the hairdresser's getting my hair cut and colored in preparation for my big day. Tomorrow we have a private dance lesson with our dance instructor to touch up our dancing skills. Manu's stag night is on Saturday, and I am really hoping he won't be completely drunk when he comes home. I on the other hand will spend the weekend cleaning the apartment in preparation of the arrival of my Canadian friends. And of course getting everything finished for the reception. I still have to finish the menues, get some more deco for the table ready....

I really hope I won't forget anything. And yes, I have thousand lists already, but still I worry....