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Trish
05-28-2008, 10:13 AM
Hi Andrew
I have inserted a file of my story but not sure if it has worked or not as I havent done this before. I used the attach icon into my doucments but when I preview the post it comes up with too short.

andrew
05-28-2008, 10:40 AM
Hi Trish...
Just replied to your PM. Sorry it didn't work!

andrew
05-28-2008, 06:48 PM
April 2006

It all started back in April 2006, normal cold, dribble nose and feeling lousy. I’d had it for a few weeks and figured I’d been lucky up till now as everyone else around me had picked it up. I hadn’t had a cold in a while and was normally a fit and healthy person. My usual routine would be to go for either a walk or the gym in the morning before work. I was working full time as PA to Mayor and CEO in local government which I enjoyed. I live in a small town and the gym is only a couple of blocks away from where I live with my partner Gavin. Anyway the cold didn’t go away after being prescribed by the doctor 3 different types of antibiotics.

June 2006

By the end of June and after having a couple of days of work I started getting this terrible pain in my face, teeth and head. I had hot sweats and my feet felt like they were wringing wet. I was 51 and figured the sweats were probably the start of menopause. The pain was unbearable and I ended up taking a week off work, unheard of for me. The doctor thought I had sinusitis and made an appointment for me to visit an ENT specialist.

August 2006

The ENT specialist sent me off for a CT Scan which came back with cronic sinusitis. My eyes were also extremely sore and felt like I had rubbed onions in them, so my ENT specialist sent me to and eye specialist, who found no problems with my eyes other than dry eye and prescribed drops.

October 2006

I received a call from my ENT specialist to say he suspected that I had WG and he would book me in for a nose biopsy straight away. I of course had never heard of Wegeners disease so looked it up on the internet and couldn’t believe that I had picked up something so horrible, but wasn’t too worried as I figured I could beat it, after all I was fit and healthy! A couple of weeks off work after the nose biopsy but there was no real improvement although things had started to calm down by now except for the very sore nose to deal with. The biopsy came back inconclusive but with a positive CANCA result. Had a lot of time off work over this time, would go in but come home most afternoons as I just could handle it. I was living on pain killers to get me by.

December 2006

By December I had blocked ears and conjunctivitis. Put on another course of antibiotics and eye drops. The conjunctivas went but the blocked ears continued. Other than that though January wasn’t too bad and I thought things were coming right. I did a lot of bike riding and thought life was pretty good again except for the ears.

February 2007

We went away in our camper for a week up north and were only home a couple of days when things started to deteriorate again. I started getting a constant cough, sore eyes and just feeling horrible again. Blocked left ear on and off.

March 2007

Saw Dr re cough and blocked left ear, mentioned sore back but it wasn’t bad so it was only in passing. He prescribed antibiotics. Saw ENT specialist re blocked left ear.

End of March I flew to Christchurch for a conference and ended up in hospital as my back pain had become unbearable. I couldn’t sleep from the pain or walk, plus I had pain in my buttocks, groin and wrists. My groin had also gone numb to the touch which was a real worry. The hospital took blood tests and back x-ray but all came back clear. Prescribed tremadol and panadole for the pain. The tremole helped suppress the cough and helped the pain. We had planned a weekend at the end of the conference with Gavin meeting me on the Friday night, but instead I stayed in the hotel bed sleeping off the pain until it was time to fly home on the Sunday night. I needed his help to walk to the plane, but it was so good to get home.

The cough would come back when I tried coming off the Tremole completely and I felt like I had a bad flu, but the pain in my body decreased. Its was still there but a lot more bearable. I was feeling really isolated because of my hearing loss as unless I was only speaking on a one to one basis I couldn’t make out what people were saying. I had to see their lips move to make out their words. I spend a lot of time by myself. My partner Gavin has been supportive through all this and I feel so bad as I feel its not only the person suffering the disease but partners and family all suffer the same sentence. He said the other day he wishes his old Trish was back, he said it in a loving way but I felt a terrible pang. My friends are really great also, but I don’t want to burden them with my problems all the time. It seemed like the only conversation I had with people were health related!!!!

April 2007

Made an appointment at the World Health Clinic in Taraunga as this had been suggested to me by a friend whose husband had had cancer and was treated there.
So we headed off on the Saturday to Tauranga for a few days in the camper. I was still completely deaf so the conversation was pretty limited in the drive up there.
My appointment was for the Monday so we spent a lovely Sunday checking out the sites of Tauranga. My breathing had got worse when exerting myself which was really noticeable when we went for a walk along the beach at Tauranga. I was like an old women struggling.! We went for a small bike ride and I struggled with this also. Woke up on the Monday morning with vertigo. Never suffered this before and thought no not now, but it only lasted about an hour after waking and I was ok for my appointment. I had my consultation with John the Isopath/Homeopath and his wife who was an acupuncturist. John told me I had flukes and gave me some homeopath medicines to take for the next 10 days. Was told that the first 2 to 3 days I would feel quite fluey due to the withdrawal of painkillers, coffee, tea and alcohol, and the toxins coming out of my body.
The next day Tuesday I walked over to have my shower at the camp site. I was still deaf not hearing any sounds around me. While I was in the shower my ears made a noise and suddenly I could hear birds chirping and the water running from the shower. I was so overjoyed my hearing had returned, it was still not great but at least I could hear. Also the pain in my wrist had almost gone and also the pain in my back. I had only just started on the medication from John the homeopath so figured it wasn’t that that had improved things but felt that perhaps the acupuncture had helped. I went off all pain killers and coffee and alcohol as prescribed by John and started taking my homeopathic medicines. I was still taking my medication for my thyroid. A few days later still felt very exhausted and felt like I had a bad flue, cough back again. This lasted until the end of April when I felt a little better, but still had a bad cough.

May 2007

Still feeling lousy with flue type symptoms, blowing nose (green gunk) and spiting out green flem. Still had cough especially at night. Feeling like it was all going to my sinuses again. Ears were still ringing and blocked. Completely exhausted would have loved a good nights sleep. Started another course of antibiotics. Flem was still gluey white and nose had cleared up. Went back to work, feeling pretty good. Next morning I felt like a whole new person. Life is great. Woke up and bounced out of bed, no pain anywhere. Amazing. Hoping this will last.
Went back to Tauranga to visit Homeopath and acupuncture at Healing World again. Still feeling not to bad, but still had a problem with breathing when doing anything strenuous. Best I had felt for a long time though. Got medicines off Homeopath but still on antibiotics so continued with those and started the medicines when I had finished. Still had a cough that didn’t want to come up which was worse at night.
Started second lot of homeopath medicines. Still have dry cough and difficult breathing when exerting myself. Still coughing up flem and blood (usually blood only about once a week). A couple of bleeding noses and blood from my throat also. Doing a lot more around the house, and even went for a small bike ride today. Feeling ok still.

June 2007

3rd lot of Homeopath medicines. Still have dry cough and difficulty breathing, flem and blood. Started going to the gym to try and help my lungs. Still get blocked ears through the day, but hearing is fine. Appointment with Rheumatologist. Organised for me to have blood test and urine test. All came back good.

July 2007

Appointment with ENT specialist. Hearing test – good, blood test taken, camera up nose and down throat – good. He made an appointment for CT Scan. Breathing is still a problem and so is the cough, flem and blood Get tired easily. Blood test and urine tests came back good.

August 2007

Had CT Scan plus dye through veins. This was only for head and throat. ENT specialist visit. Breathing is really bad now, can’t even walk too far. Lung Function Test.

October 2007

Holiday in Aus. Felt pretty good except felt very puffed up and started having problems with my feet and joints. Breathing still not good.

December 2007

Went to Dr to see if I could get something for my puffiness and sore joints. Doctor gave me some fluid tablets and anti-inflammatory tablets.
My feet and joints are getting far worse. Wake up in the morning and can hardly walk. Feel better over the day after taking anti-inflammatory tablets, but feet are really swollen. Going to the doctors today to get them checked again.
Progressively getting worse. Everything is sore and swollen from my throat to my toes. Every day is a struggle to get through. Dropping pain killers to get through, not sleeping because of the pain and crying every morning. Life is a misery at the moment. Just taking one day at a time. My breathing has become very bad and is a worry

January 2007

Went to Emergency hospital couldn’t take it any more. I really thought I was dying. They put me on iv cyclophosphamide and methylprednisolone pulse. Felt wonderful in just a few days. My swelling had gone down and my breathing was nearly normal. My ESR had dropped from 81 to 26 and CRP from 189 to 23.
Felt really good for the first week, just about felt like running. Spent a full day in the garden one day and went to an organics festival which was 2 hours travel, but felt wonderful. Perhaps I over did it as my legs were still quite week and sore by the end of the day and in the morning. Still on prednisone and take a couple of panadole to help my legs.
Back to Lower Hutt hospital for iv cyclophosphamide and methylprednisolone pulse.
Felt really bad for the 1st week, tearful, still had pains and very depressed.
Went away on holiday on the 17 March and within a couple of days felt a lot better re depression. Still had pain in the morning until the prednisone kicked in, about 2 hours to kick in. Tried a short walk along Queen Charlotte Track. First ½ hour was ok, but limping with sore feet and legs and shortness of breath for the last ½ hour. Going to the toilet often and yet not seeming to drink that much. Bowel movements more frequent and erratic. Going down hill as far as pain in the morning on the second week of holiday. Still running to the toilet often.
Back to work.
Decided to take anti-inflammatory pills twice daily to help in the mornings and nights. Woke up on 4 March with little pain but my left foot was tingly, numb and sore. Went to go for my usual short walk up town for lunch, but decided not to after leaving the office. Just didn’t feel up to it. Felling puffy and large again.
Went for more iv cyclophosphamide and methylprednisolone pulse but couldn’t do it as I had a urine infection.
Hospital for more iv cyclophosphamide and methylprednisolone pulse.
Afterwards had to walk from Emergency to my car parked on the other side of the hospital. By the time I got to the car I was huffing and puffing like an old women!!! I was hoping there would be some improvement. Maybe in a few days.
Felt a bit depressed after chemo but not as bad as last lot. No improvement to my breathing but no pain in the mornings as long as I keep on the prednisone. Started getting numbness in my feet again.
Numbness in my feet and aching in my buttocks and legs. This time it was more in the top of my right foot rather than the left although the left is numb also.
Suffered a sore shoulder for the next few days, Started on painkillers Diclofenac tabs 75mg each day usually mid afternoon when it starts to get worse. The pain creeps up and feels like the muscle is enlarged. I’ve had this problem before so not sure if its part of the symptoms or not. Still got numb/burnt feeling/sore right foot but the pain hasn’t been so bad at night, probably because of the pain killers I’m taking in the afternoon.
Back in for iv cyclophosphamide and methylprednisolone pulse.
Have been feeling really bad since last lot of treatment. Can only walk as far as the bathroom to the lounge and I’m completely out of breath. I feel like I am back to square one again although the aches in my body are not as bad as they were back in December although that’s due to the prednisone.
Back in for iv cyclophosphamide and methylprednisolone pulse. Feeling really awful about going as I don’t feel very hopeful. My specials has suggested that if after the 6th pulse treatment there is no progress he will start me on the pill version. He had used the other option as there were supposed to be less side effects so now I am keeping my fingers crossed.
I have reduced my working days down to 4 days with Wednesday off to try and rest. I am lucky I have good work mates who understand and they have taken some of the burden off my job by passing on to others. Still feel bad about it though and don’t want to have to give up altogether as I need to have something to get up and go out to. I’m lucky I can drive right up to my office so its only a short walk and mostly my job consists of computer work and answering the telephone so not too much walking. I find speaking on the phone hard as I keep having to take breaths between a few words. I sound like Darth Vada!!! Anyway I am keeping everything crossed and would like to thank everyone for sending in their stories. Reading about every one else’s troubles I feel I am lucky in comparison, as I am not nearly as bad as some and I send my best wishes for a quick recovery to everyone who is feeling really low at the moment. Thank you also Andrew for starting up such a wonderful site. I have already found there is more info from the stories etc than I have found on previous sites and it helps to has helped me understand that the side effects are normal and that I’m not on my own. I guess I didn’t get involved earlier with any other sites as I lived in denial for a long time and hoped that it was just an awful nightmare. I look foreword to hearing from anyone who would like to share information. Its pretty lonely with this disease isn’t it, but I guess we have to keep our chins up and taken each day/week as it comes.
All the best
Trish

Marcy
08-18-2008, 11:24 PM
Trish,
I just read your post/story. It sounds as if you've had some real trials associated with your WG. I have questions.... where do you live? What treatment are you currently receiving for your WG? When were you officially diagnosed? I read the reply you sent me about my story, in it you talk about your trach, when did that happen? I'm very interested in learning more if you'd like to share.
thanks,
Marcy

Trish
08-27-2008, 01:19 PM
Hi Marcy
Sorry Ive taken so long to answer you. I was diagnosed with WG 2 years ago. I live in Featherston, Wairarapa, NZ. At the moment I am on 15MG predisone daily and 12.5 MG Methotrexate weekly with Folic Acid 2 days prior to taking the methotrexate. I have had shortness of breath for about a year, but it progressively got worse in May this year. In hindsight I should have been more assertive about my condition to my specialist as I think because I was still working they didnt realise just how bad it was. When visiting the hosptial for my IV Cyclo treatement I would get seen by my rheumatologist after I had been in hosptial for about 4 hours sitting on the bed and of course my breathing would have improved by that time. I found it difficult to talk and walk but as long as I just sat in a chair I was better. When questioned by the intern I would tell him how bad my breathing was, he would note it but that was all that was ever done. He never recommended me to see my ENT spec, so I just thought there was probably nothing that could be done. I have read other peoples problems with shortness of breath and it seems that they go in for some kind of scraping or something. Anyway I went to work one day and decided I just couldn't function properly any more (hadnt really been functioning very well for about a year anyway), so made an appointment with my doctor that afternoon, who luckly got hold of my ENT specialist who said to come in immediately. That was on the Friday and he operated on the Sunday, back in mid June. I will have to have the trachy in for at least a year as with WG any operation can cause it to flare, so am counting down the months (10 months to go hopefully) and then he will reconstruct my trachea and hopefully all will be back to normal. Not really sure about the process, not sure if I want to know too much as sometimes too much information can be really scary. I was rung today by the hospital to say that my silver trachy should be here in about a month so looking forward to that as the one I have is white plastic with a green tube sticking out and is worn with a white band to hold it in, which has to be quite tight around the neck. The inner tube gets blocked all the time so I am constantly cleaning it. It comes with a speaking valve which sticks out the end which makes it look even more rediculous and I find when I put this on the air intake is reduced so feel like someone is strangling me, so I find using my finger to speak is an easier option. It also catapults off if I cough or laugh which has caused a few embarrassing moments. Especially recently, we have a new CEO started at work and I was in his office and thought I would use my speaking valve so that I felt a little more normal, anyway it catapulted off and under his desk and he was on his hands and knees to retreive it. Its quite funny now but at the time it was quite embarrassing! The silver one is flat and has a speaking valve built in and can be worn with a silver chain, so looks a bit like bulky jewelry. So Im counting down the days, life will be a lot easier I'm hoping.

How about yourself Marcy were do you live and how are things for you at the moment. I have been feeling a lot better the last couple of weeks, went for a reasonable 15 min walk around Featherston on the weekend and then again today. I only work 4 days so its quite nice now I usually have Wed off. Still finding my breathing pretty sucky but it is much improved than before the trachy and Im hoping that it will improve with time. Like you I miss my old life and am always hoping that it will return. I am changing my life style to suit my condition, but Ive never been one to sit down for too long, prefering to get out and do physical stuff.
Anyway will send this off, I do tend to go on a lot sometimes but as there is no one to talk to in NZ when I do go on site I do tend to blabber on. Hope you dont mind!!!
All the best Marcy
Kind regards
Trish

Marcy
08-28-2008, 01:05 AM
Trish,
thanks for responding - has your treating doctor looked at your lungs? My shortness of breath has been caused by two factors combines, my tracheal stenosis which thankfully is minimal and the scarring on my lungs from the granulomas that were there originally. I receive a CT scan of my lungs two times a year while I'm in remission and every couple months when I'm flaring. I am treated by an amazing team of very knowledgeable WG docs at the Cleveland Clinic. They consult for free with other doctors around the world of patients with WG. Even though I am in remission I still take 25mg of methotrexate weekly. Folic acid daily. I'm off of pred for now but when I was in full flare I was taking 60mg daily. I'm feeling good these days but take nothing for granted, if you know what I mean.
About you - was your trachy a result of stenosis? How long wil you have it and what can you expect once it's removed? Do your docs say you are in remission or flaring? It sounds like you're flaring actively. I'm sorry for your troubles, truly I am. You sound like you live a very active and exciting life. Please be kind to yourself and remember to take the time necessary to heal. It's hard to slow down but with WG we can only take so much. I used to get so overwhelmingly fatigued with the slightest of activities. Now I have much more endurance but still, nothing like preWG.
Hang in there - I love that you can laugh at the situation. The trachy thing flying under the desk, well, that's priceless. :)
Marcy

Trish
08-31-2008, 06:19 PM
Hi Marcy
I had a CT scan when I was admitted into hospital in June prior to my tracheotomy, and my lungs were OK. As I understand it when I have the reconstructive work done, I will need to have a piece of my trachea removed as this has closed due to scaring and stenosis. He will then join the two good ends up and hopefully everything will be as good as new as it has not effected my vocal cords. Not really sure of the outcome though, just keep my fingers crossed it will be positive. I only see my docs through the public system and don't really have much time with them so therefore don't get to ask too many questions. I had medical insurance for many years prior to getting sick and unfortunately cancelled it as I was healthy and never needed to go to the docs so felt I was wasting money. Also the cost was constantly increasing due to my age . Anyway I cancelled it and 6 months later I was diagnosed with WGs. Dont think I will ever cancel another insurance in my life!!!:mad:
I am supposed to be in remission and feel the best Ive felt for a long time. I went for a 15 minute walk last week and went for a 3 km bike ride this weekend so feel I'm getting back into it slowly. I see my spec at the end of September and am going to ask if I can come of the methotrexate and cut down on the prednisone. I hate being on these drugs as the side effects worry me as much as the disease. Also the weight gain cant be good for the heart! Have you put on weight from the methotrexate? I put on a lot of weight with the prednisone, moon face etc but since Ive been on the methotrexate I have noticed the weight increase around my middle even more. I feel like a bloated whale!!!
I am looking forward to getting a flat silver trachie which is coming from the UK and should be here in about 3 weeks so cant wait as the one I have sticks out and is quite restrictive. I will have to have to wear it for at least another 10 months ( I was told originally at least a year) counting down the months.
How long have you had WG Marcy. I'm glad that you are feeling much better.
By the way I am taking Colloidal silver, not sure if it is helping or not but do feel better. Guess its a bit like having health insurance while its working you are scared to stop!
Sounds like you have a good team of docs, are you on the public health or do you have health insurance?

Trish

Terry
09-21-2008, 04:17 AM
Trish, my heart goes out to you. What a time you have had with this! :(

Natalie Makeef
10-09-2008, 01:58 PM
Hi Trish,

I am new to this. I finally found others who suffer with WG. I live in Auckland, New Zealand and I haven't met anyone else with WG - until now:). You have had a quite a few trials with yours and I feel for you. I was diagnosed in November 2006. It started about July 2006 what was like a prolonged flu but it wouldn't go away. My nose was bleeding alot and the inflamation spread to my eyes than down my throat and eventually to my lungs. One morning I coughed up blood and my husband took me straight to Waitakere Hospital. I had X-ray's on my chest and a doctor said she suspected WG. I went "what?" I was than transferred to North Shore Hospital where I had a ultra sound and CT Scan done, lots of blood tests. I had a nose biopsy done - this confirmed I had WG. I was put on a cyclophosimide and a 50mg of predisone. I am 35 years old and I have been married for 3 years to a wonderful supportive husband. Due to the illness and medication I have gone through early menopause and I cannot have children. I am now on Methetrexate and folic acid. I have had shingles and had biopsy done on my kidney because there has been blood in my urine and now I have swelling under my armpit with discouration and have had a biopsy done on that ......I don't know what else will come arou nd my corner.....

I would love to hear from you and share our stories.
Thanks
Natalie

andrew
10-14-2008, 07:19 PM
Trish asked me to post this on her behalf:

Hi Natalie
It is good to hear from someone else in NZ who has Wegeners. We are very similar in that I also started off with a bad flu and it occured in May 2006. It sounds like you have been through the mill it certainly is a
horrible disease but like everyone says we have to try to be postive. Im
sorry I have taken so long to reply I work on computers all day, and by night or weekends it is sometimes the last thing I want to do, mostly because of the pain in my eyes and sinises that I get from having to wear glasses. Something else that I picked up from this damn disease. I would like to hear from you and share stories.
I hope things arent too bad for you at the moment and things start to improve. I am down to 13mg but still on the methotrexate. I was hoping I could come off it at my last visit to the doc, but no such luck. Are you working Natalie and if so what do you do. What are your hobbies, Id love to hear from you. I havent been into the site for a while.

Natalie Makeef
10-19-2008, 03:23 PM
Hey Trish
Great to hear from you. Yes this disease certainly comes with a few things. I am taking Methetrixate(I think thats how you spell it) and only on a few mg of Predisone (yeah) recently I have inflamation in one of my eye's the tear duct keeps leaking hehehe I am waiting for an appointment to see the eye specialist. I occassionally get numbness in my legs. Do you get any of this at all? I recently found some dermatitis under my armpits (just great). I have some medication to treat it. I even got shingles last year. I am really glad to have met someone from NZ because I don't know anyone and there are no support groups for it here. I still continue to get tired as part of the disease. I have gained so much weight when I was on predisone. Anyway I would love to hear more from you. YOu can email me on [email protected] or (09) 8187530. Maybe one day we can meet up thanks and take care

Natalie