 This is written as a diary with the latest news at the end | ||
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November, 1998 December, 1998 |
January, 1999 April, 1999 |
May, 1999 June, 1999
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November 10th, 1998 There are two methods that I know of that may be successful. One is to put in a "stent" (like a rounded net, tube or cork that keeps the scars in place while they heal) in the airway above my vocal cords. That can be done either by putting the "stent" in from the mouth and sewing it into place, or if its tricky to get it in place to cut open the throat and insert the "stent" that way. The other method is more complex and will take a whole day to perform, and there is no guarantee that the voice will be saved. They have to cut open the whole larynx area lengthways and widen it with material from my ribs, ear or nose. If they have to cut the whole larynx area, they also risk severe bleeding and other problems with new scars healing the wrong way. They will need to have an operating team standing by 24 hours a day for a whole week, so it requires a great deal of planning before they just go ahead and do it. I'm told I should expect to stay in Göteborg for 1-3 weeks after that operation, depending on which method they choose. For those of you who have no idea of the places that I'm talking about in relation to others: its 1,400 kilometers between Luleå and Göteborg, 40 kilometers from Luleå to Boden and 970 kilometers from Luleå to Stockholm. This means that I'm far away from friends and family in Luleå for a long time. After they have performed the examination tomorrow morning I will know what method they will chose, and I will hopefully have a date set for the major operation so I can start to prepare myself. I will not stay in Göteborg until the new operation since it takes time for them to plan a project like this. There are a lot of people involved and they have to book the operating theatre for a whole day just for me.
November 11th, 1998 The doctor also explained that parts of my vocal cords have grown together and that this is one of the reasons why I haven't been breathing properly. So he is going to split the scars between the vocal cords and tie them up with lines or threads to keep them apart so they don't grow back together. He was actually very optimistic about saving my vocal cords with this method since he has performed a couple of hundred of these procedures and has always had good results. He actually joked and asked me if I was prepared to get a better voice than I've had in many, many years. The doctor has given the operation a 50/50 chance of success. I hope he is just being cautious and that the chances will be higher. I'll probably stay in Göteborg for about a week after the operation and then I can go home to either be nursed in Boden, or if its been a real success, to be at home the rest of the time. After six weeks I will go back to have the "stent" removed, and then go home again and wait. It will take at least six months to determine whether or not the operation has been successful. If the scar tissue stays in place I'm out of the woods, and at least I won't have to go through another 120-130 operations again and develop more scars. I'm going to have this operation as soon as possible. I was given the choice to either do it before or after Christmas. I've decided that I don't care if it's done AT Christmas, I just want it done as soon as the doctor has time. The doctor gave me a preliminary time in three weeks, December 2nd, but I will know for sure later this week or next.
Things went even better than expected. The doctor, Hans Ejnell, split the scar tissue on my vocal cords and tied them up as he had explained earlier. So now the vocal cords are totally open and can't be closed. They are tied up on each side with 3 strings to keep them apart during the whole healing process. He also cut up, or split as he said, the scaring above the vocal cords. Thanks to the tied up vocal cords he didn't see any reason to actually put in the "stent" (or the cork as I would explain it) to keep the scars from growing back and blocking the airway. The opened-up vocal cords almost did the job in itself by opening up the airway. Dr. Ejnell even managed to insert an intubation tube with a 10 millimeter radius with no problem. That means that he managed to open up the airway from five millimeters to ten millimeters by only fixing the vocal cords. That was when everything was swollen too, so the opening may eventually get even bigger. Since he didn't have to plug the airtube with the stent, it means I can actually whisper a bit, but of course not talk since the vocal cords are tied up in three places. I'm also able to swallow food and drink, but am unable to drink any clear fluids since they can easily go in the wrong way (airtube instead of the esophagus). So no tube feeding over Christmas!! :) The doctor said it will be possible for me to go home at the end of this week, they just have to make sure that there are no signs of infection and that I feel strong enough to travel. I can go directly home and won't have to get further treatment in Boden hospital. I'm going to go back to Gothenburg to remove the strings that hold the vocal cords apart in the second part of January, that's in about 6-7 weeks. Right now I'm in much pain and feel nauseous. The pain is both in the throat and from the outside since they cut it open to tie the strings up. My head is dizzy from all the painkillers but I'm mostly happy that it went so much better than I expected. The doctor said that he didn't see any reason to put in the stent, since it seemed to work well this way. The stent would also cause constant nausea for 5-6 weeks and that's nothing you would really wish upon anyone, not even your enemies.
January 15th, 1999 Unfortunately the doctor wasn't very happy with the result. He had hoped that the scars above the vocal cords would have been less severe because the threads that keep the vocal cords apart would also open up the airway above them. He couldn't say anything for sure, but I probably have to have surgery at least once more to open up the airways. Nor could he say what method he will use, since he needs to examine me under anesthesia. He wants to see how it looks on and above the vocal cords. He will of course try to save my vocal cords in the next major operation, but can't promise that a stent will do the trick. If worse comes to worst it means that he has to cut open the whole larynx area and perform an implant with bones from my ribs to keep the airway open. That also means that I'll lose most of my voice for the rest of my life. I might be able to whisper, but that's all. Right now I'm very sad and I'm terrified of what the doctor will find out on Monday morning, when he removes the threads and performs the examination. It's not fun to look forward to yet another operation in the near future, it feels like it will never end! I have to stay in Göteborg over the weekend so I cannot be comforted by my boyfriend who has to stay in Luleå to attend work. Hopefully my uncle, who lives in the neighborhood of Göteborg, can come to visit me to cheer me up. I really need all the cheering up I can get right now!
Operation day, January 18th, 1999 The doctor is now going to confer with some of his international colleagues since my condition is very complex. He must decide whether to cut the larynx area vertically both in the front and the back, since the scars block too much of the airway. Right now I have about 5-6 millimeters of open passage, while the goal is to get 10-11 millimeters so that I can breathe freely without the tracheostomy tube. There was some disappointment that this last operation wasn't as successful as we had all hoped for. Last time the doctor removed the scars above the vocal cords, and after the vocal cords had been tied, the opening was over 10 millimeters. Therefore we had all hoped that the scaring wouldn't grow as much as it actually did during these six weeks. There is now no other alternative other than cutting the larynx area open vertically, and inserting some cartilage to widen it. The cartilage will probably be taken from behind my ear, but could also be taken from my nose or ribs. The cartilage then will be implanted in the gap where the larynx area has been cut open. The doctor has done about 20 operations like this, but as every case is unique he has to think things through carefully. There are no second chances, so he will not be able to repeat the operation if it is not a success. There are other complications involved with an operation like this. If I get an infection in the area, it could be disastrous, and I could end up in an even worse state than I'm already in. Instead of a free airway and life without a trachea tube, I might have to live with the tube for the rest of my life and my voice would be ruined. If there is an infection, or if the cartilage starts moving, the scaring could start growing again . Even if the operation is a complete success and I have a free air passage so I don't have to breath through the tracheostomy tube, my voice will always be ruined. I won't lose my voice completely, but wont have a clear, strong voice since the vocal cords will not be able to close completely when I speak. Normally when you speak the vocal cords close completely to make the right vibration for the sounds of the voice. Due to the larynx area being widened by the operation there will always be a gap between them and they will not close. The doctor is going to call me in about two weeks and inform me of his decision on how to perform it, and he says it'll take place in the middle or at the end of March. I'll have to stay in hospital for at least ten days after the operation, since they have to monitor me closely in case there are complications, such as an infection or even rejection of the implant. I feel pretty good, so I'm flying home tomorrow after lunch, so I can be with my boyfriend and sleep in my bed again... yippie!!!
Tusday, april 13th
While I was writing this the doctor interrupted me. He wanted to see how my throat looked after the operation. All the blood tests have been terrific, no sign of either inflammation or infection. The first thing Dr Ejnell said when he looked down my throat was "Wonderful!" (yes he did say it in English) and said that the stent hasn't moved a bit from where he put it in on Thursday. He is very pleased with how things look and, even though I had to throw up a few times, everything was in the right place. Of course Dr Ejnell can't promise that everything is going to go well this first time, but he said that about 2/3 of this kind of operation is successful the first time, and that its possible to do it a few more times so the success rate becomes even higher. He told me about a patient he had that was worse off than me who had the operation twice and is now free from his trachea tube. I have positive feelings about this. For the first time I don't fear that it might not work. Dr Ejnell doesn't promise me any rate of success, but he radiates such hope that I think I will be able to remove the trachea tube sometime around summer. Scars be gone! I've also been a good girl and been able to drink over 1 liter of fluids myself (including a VERY tasty soup for lunch) so I'm going to get rid of this annoying feeding tube today. YIPPIE!!!! I will also try to eat mashed food instead of fluids, so I hope the feeding tube will give more room for that than it has before. I took a pill this morning that wasn't bigger than 1/4 of a Tylenol and it got stuck and I had to throw up. NOT FUNNY. But there have to be ways around that.... I wonder if they can mash pizza?
Wednesday, april 14th I was a bit sad today, Ben had to go home to attend work. He was supposed to leave on Monday, but I was feeling terrible so he decided to cancel his flight and took the train today instead. Poor thing, 17 hours by train! He's the best boyfriend a girl can have since he sacrifices so much for my sake. I'm very greatful to have him in my life.
Thursday april 15th
Nan had bought a Dutch children's book with her describing how her IRC name, nijntje (a fluffy little rabbit), was born. While I was reading the book I found a picture that is a spitting image of my Guardian Angel!
In the afternoon there was big party! My little sister, Anja, who lives in Stockholm for the moment, had a dance show here in Göteborg, so she came to see me for a couple of hours. It was great fun and we laughed and teased our father who has never in 25 years visited me in hospital. Anja thought it was interesting to see what hospital life was like. She has only heard reports on how things were going for me, so she wanted to see for herself how I was doing.
Both pictures you see here were taken with my QuickCam which Peter, Anja and I had very much fun with. I'm going to spare you all the goofy pictures we took!
Saturday april 17th
Sunday april 18th Cisse and Mom had really interesting discussions about everything from swedish economy to astrology and astronomy. I almost fell asleep and couldn't wait to get my hands on that comic book... sorry mom! ;)
Monday april 19th In the afternoon my uncle, Åke, came to visit. It's always great to see him and last time I was down in Göteborg he was too busy get his house ready. Åke has one big passion and that's to restore and repair old houses, so he was in a bit of a hurry in january since he only had 2 weeks before the rest of the family was moving in.
Tuesday april 20th I also had some blood coming out of the stent today, that did worry me a great deal! But the doctor did check it out and I was calmed by the fact that it's normal coagulated blood losens up after a week to 10 days after an operation.
Wednesday april 21st The plane ride up to Luleå was long since we had to make 2 stops. One in Stockholm to pick up 2 patients that were heading north aswell as me. We dropped off one of the patients in Örnsköldsvik and the other patient and me continued further up north, to Luleå. We landed on Luleå airport at 2.30 pm. Finally at home! Now I'm going to take a break on my daily report since I usually only write this as my hospital diary. Next time, in 2 weeks I'll continue my story, so stay tuned! :)) My fiance, Ben, wants me to add to this diary "how come you never write about your cracy canuck boyfriend that makes you keep forgetting your pain because of his goofy behaviour?" What is there to say? If I write about him, then he might be taken away by some men that will dress him in one of those nice white shirts with very long sleves that buttons up in the back. And I don't want him to be taken away since he after all is the vitamin injection in my life and I need him by my side as often as he can.
May 5th, 1999 I did get a heartfelt welcome, as usual, by the staff. And I was examined twice, one by the doctor that admits all patients to the ward and the second time by the assistant doctor that was assisting my doctor, Ejnell, at the major surgery I had 4 weeks before. The admitting doctor was too funny, since I still had the stent in my throat it was impossible to see down my throat, but yet he told me to say Ah! When I looked at him as if he was totally nuts, he laughed and said he did it by old habit. Åke Gerterud, who assisted, could see that the stent had moved upwards even more since 2 weeks before and was amazed that I didn't had felt more sick since it must have irritated the gag reflexes. But I guess you get used to everything, and also getting used to a green "cork".
Operation day, May 6th, 1999 When I woke up in the recovery room I was very drowsy and didn't really understand what was said to me. Somehow I had mixed things up and thought that the doctor had decided to let the stent stay another 4 weeks and he had just stitched it better so it couldn't move upwards anymore. I was furious and when Dr Ejnell came to see me in the recovery room I was almost about to throw things at him. He just laughed and said that I should try to speak instead. Then I looked at him very puzzled and asked if the stent was gone. WOW! I did talk! Well, not talk in the right meaning, but I could at least whisper. So I broke out in a big smile and asked my doctor if I could have Pizza now. He teased me and said that I could eat fluid food if I did prefer that better. He's such a teaser! The doctor was modest but it was impossible to mistake his satisfaction about the outcome of the operation 4 weeks ago. The opening was very wide and he said that if it kept this way I would be able to run a marathon with all the air I could inhale through that opening. But of course he couldn't promise anything since he wasn't sure about how the scar tissues would react after the stent was removed and they got more room to grow in. Dr Ejnell wanted me to come back in 5 weeks to check things up and also remove papilloma that has been growing. He did mention that he might also put in a smaller trachea tube so I could breath beside the tube instead of through it and through the small holes for the fenestration. If they were to remove the trachea tube I'd have to stay a week so they could monitor my breathing. He also said that I should be able to talk with a voice in the future, but the voice could be affected by the papilloma so I shouldn't expect much yet. When I was wheeled up at the ward again one of the orderlies (Fransisco) asked me if I wanted to change the pre-ordered menu for the special menu. He said he could fix me some Pizza. Oh, I love that guy!!! Of course I wanted Pizza after 4 weeks of mashed potatoes and other not so tempting food. Hospital food isn't known to be well tasting, but I think I did eat that pizza in 4 big bites. YUMMY!!!
May 7th, 1999 I think I scared the staff half to death with my hot temper. I'm a real grouch when I've just stood up in the morning and I need that hour to wake up and become a normal human being again. I should be happy they didn't commit me at that time, they just avoided me and let me pack and get dressed in my own time. The ambulance crew snickered a bit and had a cup of coffee while waiting. The flight was pretty good and the crew was great. One of the pilots was a guy I've flown with before and he told me about his time in Africa and he also told me he's a pastor so I of course told him that Ben and me should get married in mid air together with him. He thought the idea was great and he would be happy to marry us. Not that I think we can afford to rent a plane, but I'd sure like to have him as our pastor! Finally home, Ben had cleaned the house squeaky clean so that the smell of fresh soap was oozing all over and he cooked me the most delicious meal!
June 8th, 1999 The flight was great; it was sunny almost over whole Sweden so you could see everything like a map. One of the pilots had been flying me before so I felt very safe and could really enjoy the flight. We didn't even have to stop to pick someone up or leave someone off so it was direct flight Luleå-Göteborg. When we arrived in Göteborg it was cloudy and rain in the air, but wow, it was full summer. At least 25°C! At home when we left it was about 16°C and sunny. Too bad I didn't bring the sun with me, and then it would have been perfect. A real cute doctor (who was on call since we did arrive in the evening) did admit me and did a first preliminary check in the throat. He said it looked very good, but he didn't want to give me too high hopes since he's not my treating doctor and Dr Ejnell will get a better look in the morning.
Operation day, June 9th, 1999 I was not in much pain, so I came back at the ward almost as soon as I was awake around noon. The first I did was to order some sandwiches and tea since I was starving. After dinner Dr Ejnell came to see me to tell me about what he had did and what was to come in the future. He was very pleased with what he had seen. He actually put it like this: "It's as good as we could have hoped for". Since he's not a man of big words that was very good news indeed. He said that he didn't want to mixture with changing the trachea tube to a smaller one yet since he wanted to be sure that the papilloma wouldn't be blocking the airway in any way. He had removed papilloma on the right side but had left papilloma on the left side so that it wouldn't be a too aggressive operation. He also said it had developed a granulation in the area where they had cut the larynx open on the front side. But that was more or less expected and should be easy to remove. He said that would almost disappear by just looking at it. Dr Ejnell said that after he have removed the left side papilloma and can see that the granulation won't come back it's time to remove the trachea tube. Probably slowly since it can be pretty uncomfortable to just rip it out after been living with it for over a year. He didn't explain how it's going to be done, but I bet he'll tell me next time I'm back. Which will be week 26 or 27 (the first half in July). I haven't really realized yet what this means. Dr Ejnell said I had an opening of 12-13 millimeters now (which is normal for a grown up female) and the only thing that blocks the airway now is the leftover of the papilloma. If the trachea tube would fall out I wouldn't have any problems breathing anymore. It's just hard to believe that after such long time with breathing problems (even long before I got the trachea tube) I'll finally be able to move around without getting exhausted or lose my breath. Tomorrow I'm going home! So look up for a white plane with red stripes and engines and two very happy guardian angels on the wings. My Dutch friend Nan has given her guardian angel permission to come and fly with me since she knows that my guardian angel and hers have a blast together.
  
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It's amazing that when you're in the middle of all the tough ordeals you don't think there's a way out and that things will become easier. But just after a day or a couple of days you actually notice a difference, and even if it's just slightly better, it's still better. If I compare how I feel today with how I felt that afternoon when I woke up in the recovery room it's hard to realize that it was me and that I had the strength to go through it all. But with a headstrong will to live I guess everything is possible. Plus of course a wonderful boyfriend that never leaves my side and a mother that advocates for me when I don't have a voice.
In the afternoon my Dutch friend Nan came to visit again. She had loaned a car from a mutual friend of mine (actually a real life friend of mine from 25 years back who has moved south). It was great to meet her again, and this time not being totally doped up with painkillers. We chatted for 4 hours before she had to drive back to Linköping.
Friday april 16th
Even later that afternoon my uncle Peter came to visit. He's such a goof! Even though I can't speak we teased and played a lot with my computer. Peter kept bugging me that I wasn't typing fast enough and couldn't keep up with the conversation. It's great to have this PowerBook since my handwriting is awful and I write faster on the keyboard than by hand.