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Thread: Hello from Europe 2 :)

  1. #191
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    So I went to the waitingroom at noon as they had requested. They had a note there from their specialist that said I had been sent there, so I was hoping it might speed things up. After waiting for an hour the nurse did a quick eye-check on me and told me that it will be at least a 2.5 hour wait, so if I want I can leave the hospital and return by 4pm. That suited me just perfectly, since I hadn't been in the city centre for a long time and had planned to go for a quite a while. So I hopped on the first bus and went for a walk. Felt a bit fatigued, and figured I could really use a cup of coffee when I noticed this tent which said something about impromptu theatre and coffee. The organizer noticed I was looking and asked me to come and enjoy the show and a free coffee, which suited me just perfectly. The impromptu performance was crap, but the warm coffee and a chair was real nice.

    My dad was also in the city, so I called him and asked him out to eat - he was a bit busy so we agreed to meet in an hour which gave me time to go and check out some stores I had planned visiting. We went to eat some Chineese food as I know he likes it and I hadn't had any in a long time. Had I known the restaurant was so far away I might had refused as I was already a bit exhausted. The food was surprisingly bland, I demanded that the next time I shall pick the restaurant. Was a bit worried that I'd be late for the hospital, but figured they probably won't mind as they said the 2.5 hours was the minimum wait. Well when we returned it rained like crazy, and now they told me it will be at least 3 hours. My parents told me they would be happy to pick me up and take me home to rest, but I figured I might as well be there at the hospital - had prepared a ton of snacks and had my laptop filled with movies. Well after the 3 hours they told me there were still 4 people ahead of me, guess I was at such a low priority that all patients who came got to go before me. My snacks were also running out, didn't take into account that the Pred makes me much hungrier. Went a bought a pint of Ben&Jerrys since the kiosk only had some very stale looking bread (only one weggie option).

    Tried asking if I could get a bed since I was real tired, but there weren't really any personnel around. Was wondering if the doc had went to the bar since it didn't look like there would be less patients even though new ones were no longer arriving. Well one old lady told me that the nurse had said we could use the hospital bed in the corner so I took that one. Didn't manage to sleep, but resting felt pretty great as they had surprisingly uncomfortable benches in the waiting room. Slightly after midnight the doc called me in, she was quite thorough and we discussed that it was good that I came over for a check (was a bit worried that they would just take a quick peek and throw me out and I would have spent the day unnecessarily at the hospital). It seems my double vision might have gotten a bit worse, at the edges of my vision I kept seeing her finger as two or bending into two directions. She scheduled me some tests for next Wednesday. The impaired vision is likely due to the Pred, the small amount of blood in my eyes didn't worry her - she meant that its similar to how Pred makes us get bruises easier. I asked if she saw any signs of infection in the eyes, and she didn't sound too sure but said that they should be OK. I also discussed that if the Weg would have attacked my eyes then I'd assume that my old glasses which I got last year when I was on high Pred probably wouldn't help as much as they do now, and she agreed. I also asked that is there anything one could do if there was an infection, as I'm already on real powerful drugs and she said she was thinking the same thing and there would be some local medicine one could apply to the eye, like cortisone drops. She said that I can freely come back if I notice my vision starts getting worse again, and said we'll keep my appointment for September as that is going to one of their top specialists (the doc I've seen there twice seemed to know about vasculites).

    Granted the 12.5 hour wait was a bit long, but they day didn't turn out to be all that bad. I mean my son was in a high fever, so I would have had to cancel my friends visit anyway - and that's what got me down anyway since I was really looking forward to having the house by myself and just chilling with a buddy I hadn't seen in a long while. It was real nice to go around the city as I had wanted to do that for a few weeks already and it was very nice to go out for dinner with my dad even though he had to take a few calls and the food was crap. It does seem a bit silly one has to wait that long for a doctors visit, I mean why do they insist I need to check in at noon if they won't have any time anyway, but on the other hand if they think I need to see a doc then I don't really think its all that bad that I can see a good doctor during the same day. A lot of the patients who came in seemed to have much more urgent issues, like wearing black glasses and I heard one was crying in pain so I'm totally OK with all of them getting prioritised. I really loved how they told me I could leave for a few hours, since at the ENT's waiting room they were quite hesitant about letting me go get food which is so silly, I mean why force someone to sit at a bench for 8 hours. One old lady said they had promised her that they could even let her go home and call her one hour before her expected time. Was a bit bummed that they didn't say that to me, as I would have loved to go home and wait for a call as my parents could have dropped me off then.

    When I left I gave my cookies and chocolates to the two pensioners who were still waiting for the doc. Those poor amateurs had no idea they were in for an all-day wait and had brought nothing with them. One of them had a two hour taxi drive home so I bet he was going to be hungry. Being well prepared I had packed my overnight bag with extra clothes, toothbrush and all since I'm just not so convinced I'm going to be sent home these days when I go to the doc. My cooler bag was even still cold when I arrived home at 1am, granted I already drank all my cold coffee drinks. Next time I'll prepare more food though, I had to go buy a lot of sweets since there weren't really any viable healthy alternatives at the kiosk. Didn't really consider the Pred makes me so hungry.

    So tomorrow I'll go to the lab for bloodworks and urine tests, Tuesday CTX IV, on Wed they'll do the eye-check ups.

    Today I'm OK'd to go down to 60mg Pred. yay! Hopefully I'll be able to sleep a bit better, I think I've averaged around 5 hours sleep per day which just isn't enough.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  2. #192
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    What an inspiration that you remained so positive during your entire ordeal. Glad things aren't as bad as they could have been.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  3. #193
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    Quote Originally Posted by windchime View Post
    What an inspiration that you remained so positive during your entire ordeal. Glad things aren't as bad as they could have been.

    Well the weird part is that I feel so good... Like I was working the few days while I was waiting to go to the hospital, perhaps a bit more tired than usual but not sure if it was due to the Weg attacking me everywhere or due to the stress of knowing that everything is not alright and having to go to a hospital ward.

    Monday was rough, I only got 2.5 hours of sleep - woke up before 3am and had a lab appointment at 9am knowing that I wasn't allowed to eat before the lab. And the high pred makes me hungry. I checked that one lab opens at 7.15 so I went there a few minutes early, only to realize there were already 12 people in the cue. Still I won a few hours and the thought of getting my morning coffee a bit earlier. Man I was hyperactive after not sleeping and taking the 60mg of Pred. Ran some errands and did some shopping for 4 hours and then crashed into bed but couldn't sleep. The days I get at least 6 h sleep are quite good, but I do feel so awful if I get just 3 or so. Just discussed with my doc that I could take another sleeping pill if I don't need to drive in a few hours. (I take the kids to daycare and school in the mornings)

    This night I had my best sleep since I got admitted to the hospital, about 7 hours. Felt so relaxed in the morning. Went for an awesome lunch with a good friend of mine. Such yummy Nepaleese food and a good discussion. He left his business meeting in the middle to make our lunch appointment

    Right now I'm at the hosptital getting my second Cyclo IV. I've been making a lot of calls and lists of stuff I need to do, as I have ample time here so why not make the best of it. Wasn't sure what to expect, as the last IV took about 9 hours so I packed a cooler basket fileld with jogurts and other snacks - but when I got here I realized that most of that is pretty much liquids and they've told me to restrict my liquid intake to two liters... doh! Anyway, they just brought me a decent sandwitch and coffee so it looks like they'll feed me here. I also have with me a chapter from a book about vasculites that I like about Opthamologic issues with Wegs. I have an appointment for eye-tests tomorrow, so figured I'd brush up on what all Wegs can do to the eyes.

    Next week is going to be fun, have three lunch appointments which is great as I'm usually full of energy until the early afternoon. Then there is our companys summer party. Not really sure about the party, I'd so love to go but I've just been so exhausted at nights Also last year I almost fainted when I got home from the party, so it feels a bit awkward to be in pretty much exactly the same spot at last year - just started chemo and more tired than usual. This time its in an Island so you need to go by ferry and it can be a tad difficult to get home if I start to feel bad. Of course I won't be there till the wee hours, but dunno how easy it is to leave at say 10pm... Should probably check in advance...

    Feel so bad about Phil and what he is going through

    Yesterday I heard that a vasculite friend got some good news about her condition getting better, and that she should be able to try to get a second child in a year or so. It made me so happy, since I know she has gone through such rough times.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  4. #194
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    Felt a lot worse the last few weeks. Came down with the flu, which was hardly surprising as both my kids had a high fever so I figured its just a matter of time before I get it. Got the slimiest couch I've ever had, sleeping was already hard due to the pred but the cough made it worse. Called the doc just to be sure, didn't have a fever and was feeling pretty OK but I didn't want to get a pneumonia or similar while being on high pred and Cyclo IV's. The doc ordered blood tests, chest- and nasal x-rays and called me the next day that I have sinusitis and need to take antibiotics. Was supposed to have my 3rd Cyclo IV yesterday, but we postponed it for a week so I could get better and take the antibiotics.

    Was so hyper-active each morning before the flu, but after that I've been feeling quite exhausted all day. Today I finally feel better, the cough has also ended. Managed to get 4.5 hours of continuous sleep which I think might be a record since I came from the hospital. Generally I feel that the pred doesn't affect my mind as much as it did before, which is great as I've been able to do some reading now. If all is well I'm supposed to cut down to 40mg next week. I sure hope they let me do it. We also discussed with the doc that I could start swimming then (she kind of thought it was OK already, but last time they wanted me to wait until I got to 40 - might have been because of my the wegs in my nose though).

    Had a weird thing at the hospital though. They discovered the Weg activity from a bleeding thingy in my throat. I was supposed to have an appointment with my ENT next week, and my neph thought that it would be great to keep that so that they could check if its better now. Then I got a letter from my ENT, who was my responsible doc for the entire Wegs, that she has moved the appointment to Feb 2015. I called the hospital but they refused to tell me anything else than that the ENT moved the appointment and said it was for a good reason and I'll get a note about it. Didn't receive anything, my neph thought it was strange but said they can't do anything if the doc moves the appointment. Called them again and now I got a promise that my ENT will call me next week. Dunno, just feels weird that they do that kind of things. I know she received the info from my hostpital stay, and she should also be aware that I had that thing in the throat as she called me before I went to the hospital.
    Last edited by Wegetarian; 09-10-2014 at 06:20 PM.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  5. #195
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    Just had my 5th CTX IV today, all the lab results show improvements and the doc said there is no longer any blood in my urine which she said was a great results (although I checked the lab results and the most recent test had some blood, while the one before that didn't). Still some protein though, the doc said they'd switch my blood pressure pills to another one that also helps against the protein and that it might be due to some scarring of the kidneys so the protein might be remaining.

    Initially they had planned 6-10 IV's, but in the latest note from my doc I read that they were thinking of 6-8 and now we discussed that 6 might be enough as that's what they consider the minimum amount to be, but they'll book a 7th IV and depending on the results after the 6th we'll check if its needed or if we'll switch meds.

    ANCA was down to 2.2, it was 27 I think in Aug and CRP was down to 3 so they are pretty much down to normal. Creatine levels have also been within normal for the last few blood tests.

    Again down with the flu.. Was a bit worried as this is the third time I feel flu-like before going to the IV, like if the meds aren't frequent enough or something, but then the rest of the family came down with it too - so I guess its just a coincidence.

    Before my next IV they'll also take chest x-ray's to see if my lungs have improved.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  6. #196
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    Sounds like good care and progress in controlling the Wegs. Hope it continues for you.
    Knowledge is power! Wisdom is using it to make good decisions!

  7. #197
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    How are you feeling now? Better hopefully? When I was on CTX I felt kind of crummy in a different way so I twas hard to tell if I was feeling better a t times.
    ~ Bob

  8. #198
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    Yeah, they take such great care of me. I kind of worry though that our country will have to cut down on a lot of services due to the economic situation. I mean its so very expensive to take care of us wegs, so I wouldn't be surprised if they would need to cut corners. Right now I can't imagine they could take better care of me though.

    Quote Originally Posted by Psyborg View Post
    How are you feeling now? Better hopefully? When I was on CTX I felt kind of crummy in a different way so I twas hard to tell if I was feeling better a t times.
    I'm feeling quite great. Almost as good as when I was taken into the hospital. I mean I didn't really have any symptoms, and was working they day before I checked into the hospital.. The pred however affects me quite strongly, and got very tired moody etc - you guys probably know all about that though.

    Next week I'll be able to cut down my dose to 20mg from 30mg (although I kind of cheated, and started taking 25mg this Friday and figured I'd do that to next week so the total dose would be the same, but increments would be smaller).

    Went swimming 4 times last week, I do feel I don't have the energy I had before I was dx'd and obv the high pred and fatigue has had an impact too. Figured when I get my pred to 20mg I'll also start going regularly to the gym, and should start to be in a better shape soon.

    I'll have my 6th CTX IV in two weeks. The nephfrologist actually seemed a bit surprised that my kidneys had recuperated so well, my crea-levels were already within normal and there was no blood in one sample and just a tiny bit in the following weeks lab sample. There are still some protein, and that might be something that remains though due to kidney scarring from the infection. Haven't noticed anything from the CTX besides that I had some minor pain when going to the bathroom and had some hair stuck to my fingers when shampooing my hair.

    Initially they said I'd have 6-10 IV's, but the doc figured they'll book me a 7th IV but depending on the tests they might cancel that but wanted to reserve the time just in case.

    After that the current plan is to move to Aza. Being a geek I read that there is slight possibility of bone marrow poisoning, or something similar. This could be avoided by a cheap blood tests that checks the gene activity for the pair that breaks down that drug in our bodies - but that test isn't part of the regime they use, instead they rely on regular blood tests. I'm trying to make them take the test before I'm put on it though.

    Also just read a summary of a recent study that almost 30 percent of people who were put on Aza after being put on remission through CTX flared within about 2 years, while the corresponding number was 5% with RTX. Didn't even last a year without flaring after being dx'd, so I'd certainly hope that I'd be "healthy" for a bit longer than two years after my CTX infusions...

    But yeah, can't complain at all. Everything seems to be going well, haven't been in pain or anything. Pretty much just the side effects of heavy Pred dosages, and general fatigue. If all goes well I should be on 10mg in 5 weeks and if I can work out as regularly as I have planned I think I should feel normal by then.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  9. #199
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    Whats up guys?

    Haven't updated this in a while, been feeling good and when I do I rarely check up on Weg stuff. Although I've been thinking about you guys from time to time and figured I should come by and say hi Although now I came to check if I can find any new info on Wegs. Signing up to go to a spa next month where they hold this conference for Vasculites here in Finland. So there will be a lecture about Anca-vascuites from one of the top-docs and some other stuff.. First I figured I wouldn't go, but then I realized a buddy of mine lives in the city where the conference is and he said he'd be happy to go out for some beers so I'll go. Its really cheap too, since its subsidized - its 50 euros for a night in the spa hotel, all the meals, and the programs. I'll pay some extra though to get my own room. Travel seems to be fairly cheap, since the train company has some sale so its just 10e per trip.

    Healthwise I'm feeling fine. Dropped like 17kg since the fall of 2013 and about a third of my fat-percentage. I'm off predinsone since about a month ago and only taking Aza + blood pressure med. I do think the blood pressure med isn't needed, as I've never had a high blood pressure but the doc wanted me to take them for now just so that the kidneys would have it easier. My last lab results have been great, haven't had any blood in my urine and now didn't have any proteins either - which I guess even surprised the doc a bit. Back when I maxed out scale they use for both blood and protein they figured my kidneys would become better but unsure by how much so it was definitely a very nice surprise.

    Almost forgot, I was also at some cosmetic surgery. I had this roscea (I think that's what its called), so like red zits on my nose and annoying red veins on my nose. The skin doc said it could be easily treated with a laser. Sounded really cool, so I couldn't give up the chance to be lasered.. Worked out great, all the red stuff disappeared even though my nose looked quite funky for over a week after the procedure.

    But yeah.. that's about it.. Still at home though, but looking for some interesting work.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  10. #200
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    This is good news! Its kind of the nature of the forum to have people leave when they are feeling well and come back when things go astray, but I'm glad you checked in and let us know how you are doing. I'm glad the laser procedure worked out, too.

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