Archive for June, 2008

Deal

When I was released:
– I could breathe normally,
– I felt ok, just a little bit weak (besides, I had lost 4 kg in 15 days).
– I had stitches in my nose (two) that would eventually be reabsorbed.
– My upper palate was still asleep.
– Sense of smell and taste were 90% back.

I had this report explaining in full detail everything that happened during my hospital stay. I went home very happy, I spent another week on sick leave and then went back to work.

I hadn’t told any of my workmates about my surgery. Actually they all thought I was back in Spain on holidays. You should have seen their faces when I explained the whole story. Well, not the whole story, I am embarrased to say I’ve been diagnosed with Acromegaly because it’s very uncommon and people usually associate it with dumb, dull giants. My acromegaly case is very rare because I had a GH and PRL producing macroadenoma and I don’t have any sympthoms easy to see (nobody but is looking in my knickers when I go to the toilet and see that my period is missing… again and breast-milk production -galactorrhoea- is not something people usually see), so I don’t need to explain.

The first month I still had headaches at least twice a week but then they disappeared. Gone. Nothing.

One month and a half after surgery:
Good: Sense of smell and taste back at 100%, stitches reabsorbed, galactorrhoea gone, period back (and -I am a vain magpie- those 4 kg aren’t back).
Bad: Upper palate still sleeping, small wound in my right nostril that doesn’t want to heal.

It looks like I made a good deal, doesn’t it?

June 25, 2008 at 1:20 pm 2 comments

Hospital stay and first results

This little magpie stayed at the hospital 16 days. Two before the surgery, and two weeks afterwards. This long stay was due to the fact that I had this local infection (bloody snots all the time) and there was a risk of it becoming a serious sinus infection (which noone wanted). So they didn’t release me from the hospital until I was fully ok.

There are two days I’ll never forget while at the hospital. The first was the “headache day”. The second was one week after surgery:

My GH and IGF-1 values were too high before surgery. I was told GH would quickly drop after the surgery and IGF-1 would take a little while, may be a couple of months.

Exactly one week after surgery I had blood work done. Surprisingly, IGF-1 was all right for my age, normal, healthy. GH wasn’t. It was 5 ng/ml. And would only drop to 4.7 ng/ml after glucose oral test.

Needless to say, this was really depressing. I expected the surgery to heal my GH levels. Everyone told me it would. They even said my case was an easy one and I didn’t need to worry! Moreover, how can they explain the drop of IGF-1 if GH is still too high?

Nobody was able to give me an explanation. Doctors only said that after the surgery, hormones are a bit messed up, it’s too soon… we’ll have to wait… Which is not what they said before. That didn’t reassure me at all!

Anyway, I am a very optimistic magpie. I thought: long time ago I had GH in 20 and IGF-1 normal, and everyone said I didn’t have to worry. Now I have GH in 5 and IGF-1 normal, so I’m better than ever!

That’s right, I’ve never had such a good GH level (since they started measuring it), so I can be glad. The important hormone is IGF-1, and that’s normal. I just have to wait and see what happens.

They release me from hospital, I have to return in three months. In the meantime, I’ll go back to my usual endo and she’ll have something to say… let’s see what!

June 17, 2008 at 8:38 am Leave a comment

Following

The following days were interesting. They removed the nose packing after one day but my nose was far from being a working nose. It was as if I had a very strong flu so breathing was mainly through the mouth or only one nostril. Anyway I improved a lot from one day to the following. During the first week I took painkillers four times a day that helped the headache to stay away… (actually, I got them three times a day and then I would wake up in the middle of the night, either sweating or freezing and with a strong headache, so I would call the nurse and take my fourth painkiller of the day). That was fine until saturday. That was 4 days after my surgery. I woke up fine, but I had a headache.

(via Deborah Weathering)

It didn’t go away, it became stronger every hour. So strong I had to remain in bed, eyes closed and hoping noone would enter my room making noise (such as walking)…

I got X ray done to see if I had a sinus infection (which I hadn’t), no sign of meningitis either, no painkiller would help me in any form whatsoever (tablet, drops, in blood). I had a very, very bad day, actually. The reasons for this were (at least) twofold.

1. Due to my position on the surgery coach, my neck was really, really stiff, my shoulders were as hard as diamond.

2. I had a bacteria infection in my nose. That’s why I keep bleeding through the nose and I can only breathe through one nostril.

Solution:

1. Yes! Massage daily, twice. IR light to keep my shoulders warm after the massage. Tablet to relax muscles.

2. Antibiotics.

Needless to say, this could only improve my condition! One week after the surgery I already felt good. No headaches in the middle of the night, neck still stiff but not aching anymore. I even go for little walks (I get tired very quickly) in the hospital, down to the cafeteria, out to the backyard… Days go by and I don’t get tired that quickly, so walks can be longer… I go step by step back to my old healthy me. This is a huge relief!

My biggest concern was what would life be for me after my surgery. I didn’t have any problem, I felt healthy, no growing of hands, nose, whatsoever… I only knew I had this illness because my blood work said so (allright, I didn’t have my period for 11 months, but that fixed itself spontaneously 3 months before the surgery!). I was concerned I would be sick after the surgery. I didn’t want my life to change at all!!

So, things are getting better. The only problem is my bleeding nose. I am wearing this gauze roll under my nose, attached to my ears:

which gives me a very funny look. I have to use a new one every couple of hours. I am not describing what does it look like after one night. Bloody snots. mmm! yummy, yummy.

Are antibiotics working? My stay at the hospital is planned to last 10 days after the surgery, which means one week (tuesday – tuesday) and three more days (friday). Let’s see what happens.

June 13, 2008 at 6:40 am 1 comment

Surgery. Day D

06:00 The nurse wakes me up. I’ve slept all night through thanks to the sleeping tablet. He hands me my surgery-gown, underwear (for what!? I have my own!), white stockings (to avoid blood clots forming due to all day lying).

06:10 I try to fit into those stockings. Oh my, they are thight!

06:20 Stockings on, gown on, underwear on (can somebody explain me why do I have to wear such horrible knickers?)

06:30 I take the sedative. I wait in bed. The nurse comes and wheels me on my bed to the operating room. I am calm. I look at the ceiling lights along the corridors, just like in films.

[later] I move from my bed to the surgery couch which is less comfy, actually. They take off my gown and cover me with a warm green towel. I get all kinds of padding under my knees, head, arms… so that I feel more comfortable. It’s not that bad after all. Anesthesia team comes and … nothing else.

(via spooninpants.com)

11:00 I wake up in ICU in my own bed again, with the hospital gown on and with the breathing tube in my mouth. That is fun. I can breathe through my mouth or sucking from the tube, which goes directly to my lungs. Nap. I feel groggy. I fall asleep all the time even if I try very hard to see what the room is like. Nap. I feel it’s terribly cold. Nap. Nurses come and tell me everything is over and I did very well. They ask me stuff, my name, how do I feel… I answer. Nap. I’m freezing, it’s so cold I am shivering. They lay warm towels on top of me and place a heating-fan inside the bed. That warm air is great, actually. I want such a fan for my winter nights, my boyfriend always complains my feet are always ice cold! Nap.

12:00 I wake up in my room. Nap. They’ve removed the tube but I am forced to breathe through the mouth because of the nose packing I am wearing. I feel very tired, but I’m fine. No pain. Nap. Nurses ask me about my vision and pull fingers in front of me: “miss magpie, how many fingers are there here?” and even though I know a normal hand only has 5 fingers, I see around 9. Far away, let’s see, the door of the room: I see one. But things placed close to me, I see them twofold. Nap.

13:30 I feel quite well so I start to tell my parents and bf (and hospital-roommate) about all I can remember, about the white stockings, the hospital knickers, about the wake-up room.. and suddendly I start to throw up. A lot. Apparently I bled a lot during the surgery (everyone bleeds, but I bled more) and there is a lot of dry blood everywhere inside me I have to get rid of. My body has decided the fastest and easiest way: get sick. This is quite tricky as I can’t bend and I have to do it sitting, which is quite anti natural. Anyway, after a while I feel better, I lay, I rest… and I am terribly thirsty!! Nap.

18:00 Did I say I am thirsty!!??!! Nap.

19:00 Hellooo… I have to breathe mouth open, which is tiring, and my mouth gets dry. Besides I am thirsty because I didn’t have anything to drink in the whole day… Nap.

20:00 Hello!! I am thirsty!! I am awake, I still see 9 fingers instead of 5, but I feel well. I don’t throw up anymore. The nurse brings me something like a lollypop but made out of cotton with a lemon flavour. I know it’s lemon because there is a lemon pictured on the box the lollypops live in, but I realise I don’t taste it. I also realise that I don’t feel anything in my palate (behind my upper teeth)… and the cotton lollypop is starting to set my teeth on edge.

(mmm, yummy, yummy!)

20:10 Sleep… Day D is over.

June 11, 2008 at 8:27 am Leave a comment

hospital, day 0

I went to the hospital on April 27th in the evening. It was a Sunday. Surgery was planned for Tuesday early in the morning but I needed to be at the hospital the whole Monday to get some things checked. So, I arrived there on sunday evening and hit my first milestone: I met my roommate.

She had had surgery, the same as I needed, one week earlier. She looked fine. Her voice was a little bit weird, apparently because of the breathing-tube during the surgery. She explained me plenty of interesting things such as how does the bed bend and where is the light, how does the tv work, what time do we wake up, etc. Our room is great (that was another milestone), very big, very big bathroom, huge window from where a forest could be seen… and very quiet.

Seeing my roommate so well helped me a lot. There is nothing to fear! And besides, she was such a nice person she’d always answer my questions and helped the worries stay away from me.

The following day, Monday, I had
– an oral glucose-tolerance test,
– a sight field (whatever you call it) because the adenoma is close to the optic chiasma and there is a risk it is damaged during the surgery,
– a chat with the anesthesia team and
– a chat with the neurosurgeon.

Everything was fine but for the chat with the neurosurgeon. He was a little bit too straightforward (in my oppinion). I was kind of afraid of him…I didn’t want him to think I was asking too much so I didn’t ask for all the details of the surgery such as how, what instrument are used, will they use X-Rays, what about the bone structures on the way…. Now I regret. A couple of things remain still unclear for me, minor details, but I would love to know the answer. This was the only thing I can complain about. My family is with me, they agree he could have been a somewhat nicer, closer, but I am not there to be his friend, I am there to be his patient, and he is the best neurosurgeon in Europe, which is what I want him to be.

Instructions from the anesthesia-team for monday night and early tuesday (day D) are two little pills. One for monday night, so that I can sleep through the night in case I feel I am too nervous (which I am) and a mild sedative for tuesday morning (my surgery is scheduled at 7 am) which I must take in order to remain calm and because less amount of anesthesia is needed if I take it.

So, it’s monday evening, I took the sleeping pill and I felt tired and relaxed… good night!

June 9, 2008 at 7:36 am Leave a comment

pre surgery

My surgery was planned for April 29th. I must say I was rather calm. I wasn’t feeling nervous at all. I knew I was in good hands, the surgeon was the best one in Europe, what should I fear?

Nevertheless, deep inside me, I was very concerned about what would happen after the surgery. My last MRI before surgery showed a 1.5 cm big adenoma, so now it was considered a macroadenoma. I had read everywhere in the internet (internet can be so bad sometimes…) that macroadenomas are more difficult to remove, the number of patients healed descends…

So, on the one hand the magpie is happy, she’s calm, she’s buying furniture for her new nest, so that keeps her busy at home. On the other hand she’s not that happy when she’s at work, and she spends a certain amount of time looking for answers on the web. What would happen after the surgery? from “what if I don’t wake up” until “will my hormone levels return to normal” questions show up all the time. Obviously, the amount of time spent looking for acromegaly, acromegalic, adenoma, pituitary adenoma, surgery hypophysis, etc. in all possible languages increased.

I took the decision not to tell anyone. Only my closest friends in Spain, my boyfriend, my parents and sister knew. No one of my friends in Germany had any idea, I had to tell my boss, sure, but I just said I needed surgery and I would be on sick leave for a while. No further explanation. Why did I make this decision? I don’t know. I guess I was scared of the outcome of the surgery. Not knowing what would happen afterwards was very scary. I couldn’t tell “I need surgery, but don’t worry, everything will be fine” because I didn’t know. I didn’t even know all possible results of the surgery! Anyway, even if it was not the first purpose, not telling most of my people helped to create around me a feeling of “normal life”. Nothing is happening, I behaved as happily as always, I’ve always been a cheerful magpie… If I’d told my circle of friends in Germany, I am sure they would have given me this concerned look whenever I had a headache. And I didn’t need that At All!!

And then the day D came.

June 5, 2008 at 7:36 am Leave a comment

and then it happened:

GH 22, IGF-1 512

That was december 2007. I flew back to Spain for Christmas feeling very depressed because I didn’t have my period. I didn’t care about growth hormone or insuline-like growth factor. I just wanted my period back.

My parents asked me what I wanted for Christmas and I just wanted my period back. Something (unluckily) out of their reach. And then it happened. On the 6th of January the Three Wise Men bring presents to spanish children… and, believe it or not, they brought me my period back! Just 11 months later than the previous one, but I swear it was the most amazing thing ever happened to me. I couldn’t believe my luck! I was so happy… 11 months waiting for the period can drive any magpie crazy.

I flew back to Germany to have my glucose tolerance test done and I wasn’t worried anymore, I had my period, nothing worse could happen!

BUT

I had another test in january. My IGF-1 was higher than 600 and my GH didn’t sink after the tons of sugar (GTT), just dropped to 17 after 1 hour, I believe. To be honest, I was calm. I had heard plenty of times my spanish endo saying that my GH behaviour was kind of weird but I didn’t need to worry. My german endo drove my attention to IGF-1. It had been normal while I was in Spain and it was way too high now.

– So, little magpie, (doctor says) you need surgery.

I protested, my hands are normal size, I wear the same rings as I wore in college, my shoe size has been constant since I was 18, my nose.. ok, my nose is not very small, but so is my dad’s and so it has been since I was 5 (magpie has frantically checked all her pictures to search for any changes).

– But, miss magpie (the doctor insists), you don’t want to wait until your limbs grow like a monster’s, do you? You don’t want to have your tongue so big that it doesn’t fit in your mouth anymore, do you?

That was convincing enough, I needed surgery.

I went home with a nice yellow piece of paper for a new MRI with “acromegaly” written on it and a brochure about acromegaly with a picture of Andre the Giant on the cover. The Princess Bride was my favourite film as a child but … Is that made to cheer me up? In no way I look like him! So I get depressed again.

Don’t get the impression that I get depressed all the time! I am a very optimistic magpie!

June 3, 2008 at 7:39 am Leave a comment

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