- My latest "up" is how well the Sporanox has worked for my asthma, sinuses and eustachian tubes. My peakflow is about 85-90%, my post nasal drip isn't too bad and I can hear fairly well. No aches and pains. Lots of fibre means no constipation. Sporanox is magic for someone like me.
- Spiriva is supposed to reduce the amount of Symbicort (corticosteroid) I need. Unfortunately it gave me nose bleeds and made me deaf so I stopped taking it a week ago. The "up" - I seem to be back to normal with lots of energy without Spiriva. Waiting to hear from asthma doc whether to try it again.
- New "down" - teeth. #6 molar on the bottom left lost a gold cap. No problem? Yes problem - very decayed underneath. I now have a temporary filling and am waiting to have a root canal on Wednesday. But the dentist says there is so much decay that the root canal may not work. Even if it does work, he says it won't last long. Eventually this very useful tooth will have to come out. Oh no!
- The technical problem - I'm missing 2 upper right molars (#5 and 6) so can't chew on the right side. With my lower left #6 compromised I can't chew on the left side. Chewing with front teeth is very inefficient as they are designed for biting not chewing. So I am now eating soft food or foods that are in small enough bits that I can swallow them unchewed: yogurt, banana, mashed veg, applesauce, eggs, salmon (thank goodness), soup, bread (without a crust and lots of butter), cottage cheese with ripe cantaloupe, pound cake with ice cream.
- Not chewing was hard at first because - wanting not to overtax my newly renovated large intestine - I am a bit of a stickler for chewing my food thoroughly. However, I guess I just have to trust my stomach and small intestine to do their digestive work and not get too hung up on chewing every bit perfectly.
- An "up" - Mike and I bought a mini-food processor so I can grind anything up very fine and don't need to miss out on eating anything - even steak and ham. Unfortunately nothing seems to have much taste when it's ground up. I guess a lot of flavour is in the texture.
- The next "up" will have to be about what happens to my faulty tooth. If the root canal works, the dentist will make a temporary acrylic cap (not an expensive proper cap) which I will be able to use for a while - hopefully until my upper right implants are completed next fall and I can chew on that side again.
- If it doesn't work or when it fails, I'll have to decide on whether to replace it with an implant or a bridge. My dentist favours a bridge which is three caps joined together in row - the middle one filling in for the missing tooth. I have had a bridge in the past and didn't like the way food got stuck underneath. Also, when one of the supporting teeth failed, the whole bridge failed - which is why I am lacking molars on my upper right. So I am leery of bridges.
- I think I prefer an implant - but it takes at least a year to get one - extraction, bone graft, implant itself and finally a new crown. A long expensive process with no guarantees. But at least no food gets stuck under it. We are going to ask the dentist's periodontist son his view of what I should do. My guess he says implant.
- I realize I am lucky that I still have the majority of my teeth. How do people in third world countries survive with only a few teeth? Is it an "up" to be grateful you don't have someone else's problems. I don't think so.
Sunday, December 31, 2017
Friday, December 15, 2017
Asthma- My pulmonary function test indicated I was at 74% - not terrible but not good. My asthma doctor recommended sporanox but said it was up to me when I started. He also started me on a new spiriva dispenser.
Sinus - When my sinus doc looked into my upper left sinus with his scope he found fungus. Lots of it. I had my eyes shut so didn't see it on the monitor but Mike said there was plenty. My doc did the usual wash out - shooting "water" up into my sinus to loosen and dislodge it. What a mess! It hurt a lot but was worth it. At the end he said I must start taking sporanox.
So the next day I started daily sporanox. I was so afraid of constipation that I added 3 scoops of metamucil to my daily routine. It worked! Yippee! No constipation!
I have now been on sporanox for a week. Things are definitely improved but I am not completely better - still phlegmy and some coughing but no more awful body aches and headaches. My peak flows are in the 90% range so this is very good. Most days I have more energy than before - though one day I was so tired I actually cried with exhaustion at dinner. Sporanox can make you seriously depressed and it can cause congestive heart failure which makes you feel really tired. I don't think those were my problems but I sure was tired and lacking normal resilience.
So - Severe Asthma is not only about the symptoms but also about the side effects of the drugs you need to keep on breathing.
I'm carrying on and hoping all my symptoms really go away.
(PS Our pup is turning out to be a great little dog. I now have the energy to do training with him and he is learning to sit, sit-stay, down, roll-over, touch, watch me and walk pretty well on a loose leash - not yet a heal. He also comes to his name. We'll see how well this holds up at puppy kindergarten tomorrow.)
Monday, November 20, 2017
About 6 weeks after my surgery I asked my sinus doc if I could start my sporanox again as I was a bit phlegmy. He said to try it - but after a couple of days I got pretty constipated so I stopped. I was eating more fibre and gradually got back to normal. Then a few days later I went for my routine 6 month Prolia shot (for osteoporosis ). Previously nothing bad had happened but this time I had a bad reaction - really severe back, leg and arm pain and constipation. It took a couple of weeks to clear up. Meanwhile my left foot swoll up and I couldn't go on a decent walk. I guess I had overdone it in shoes that were a bit too tight. I felt I was getting sicker instead of better. On top of that I had more and more phlegm and coughed a lot especially in the morning but also at night.
But there were also good things. A couple of weeks ago we bought our new puppy - Hunter. It is really challenging to raise an 8 week old puppy but it is never boring. Mike actually does most of the work because I got scratched and nipped and I could only go near him when I was wearing gloves.
Meanwhile I started touching up some of the paintings I had been staring at for weeks. This was very fun. Last weekend I was part of a really great art show in Ladysmith. Mike is still amazed that I actually pulled it off but it is mainly because he helped me in every way.
Today I went to see my sinus doc at St Paul's in Vancouver. She found a lot of mucous in my sinuses. It is being caused by my reaction to fungus and would likely clear up with sporanox. In the past this nasal phlegm has eventually led to an asthma exacerbation. However she said not to take sporanox until 3 months after my surgery since the constipation problem would be worse than the phlegm problem. Instead I will double up my pulmicort nasal drops and hope for the best. This was Hunter's first ferry trip and I think we all did really well - except the salmon burger was really too much and gave me gas. I still need to watch what I eat.
I will go to see my asthma doc in a couple of weeks to see what ideas he has. Since this is supposed to be an asthma blog what I am trying to say is that having a chronic disease like asthma makes if more difficult to deal with the other health problems that arise day by day. Hopefully we will find a good balance - so my bowels will be good and my asthma will be good.
In the meantime the Asthma Canada committee I am on has come up with a really good little video on biologics and I think I actually contributed to the final product.
I also think I am one of the luckiest people I know and I am having a very good life.
Monday, November 13, 2017
My first problem was with sporanox which I take to stop my allergy like reactions to fungus which exacerbates my asthma and sinus disease. It has worked very well and I felt virtually symptom free for many months - except that I had problematic interactions with warfarin and a potent anti-inflammatoryI took for my oral surgery, I stopped taking it when I had my surgery but started again after 6 weeks. After taking sporanox for a couple of days I found that I had become quite constipated. This was scarey given my modified large intestine. I emailed my sinus doc and he agreed I should stop taking it for a while. However I am coughing a lot and getting quite phlegmy - which may be because I have lost the protection of sporanox against fungus. Hopefully there is another antifungal which doesn't cause constipation. I will see his fellow next week and try to decide what to do.
My second problem was with prolia which I take to prevent fractures caused by osteoporosis. I take it by injection every 6 months. The first time I took it I didn't have any reaction except a bit of a feeling of being "down" for a couple of days. I took it last week and had a really bad pain reaction - my back in particular was so painful I couldn't believe it and so were my my joints and muscles. It was awful for one day and then the pain gradually wore off. The other problem with prolia was constipation -again. I upped my metamucil and started to eat bran buds. After about a week I got back to normal - what a relief!
I haven't been to see any medical person about these issues - I hope I can fix them myself. I am hoping that if I continue to up my fibre intake from food I will be able to drop back on metamucil to one dose per day and get back to healthy bowel habits. I do have to see my GP before I get my next prolia in 6 months - so I will definitely tell him how nasty it was.
Oh yes - our lovely new puppy nipped me and cut me with his sharp little claws. My skin is so thin that I had to tape myself up and glue myself together. Moderately painful. I solved this with sports gloves and disposable nitrile gloves which I use for painting. Why is my skin so thin? Prednisone may be part of the reason.
Wednesday, October 11, 2017
Friday, October 6, 2017
Today is Day 18 if you include day if surgery as Day 1. I seem to have fallen into a pattern. Get up around 8. Eat breakfast of fried egg, ham, toast, fruit and coffee. Coffee gets bowels moving. Yippee. Read news etc. Go for a good walk - about 4000 steps some uphill. Read for a bit. Drink juice and ginger ale. Eat lunch with protein (fish), toast, fruit. Read again. Until today I fell asleep for an hour or so. Take another good walk. Have a snack. Read book or news and maybe send emails. Dinner with lots if protein and Mike's vegetable medley and avocado. Read some more or just lie down on couch for a rest. Then watch a bit if T.V. At about 10:30 get ready for bed. Drink Metamucil. Take my sleeping pill with pound cake - otherwise it seems to stick in my throat which is still a bit sore from ng. Sleep nicely. Start again. Mike is being great. I'm not being very productive but doing my best to get back to health. One bit of progress is cutting back sleeping pill a bit. No sporanox. As much food and drink as I can manage.
Wednesday, October 4, 2017
WThe weather has gone back to being sunny and fairly mild (high 16 c). It is so lovely to look out the big front windows and see Departure Bay, Newcastle Island and other islands beyond. There is usually a breeze and some of the maples are showing signs of changing colour. Good weather makes it so easy to put on a jacket and go for a walk. The most I have walked so far in a day is 6.6 km (8800 steps). I believe walking is fairly easy for me because I always liked to walk. My brain is geared toward walking almost like a default. It was a little more explainable when we had Lexy: "oh time to take Lexy for a walk." Now it's "I need to walk to keep my systems functioning." But really I just want to walk.
I think I have inadvertently fallen into a fairly good mental state. I am not worried and I do not have pain. It really is about living day by day. I have only a few things I must do each day. Every morning I have my Fragmin injection to prevent another DVT. I stick the needle in to a fattish part of my thigh and Mike presses the plunger which pops out a cover so the needle is covered when it come out. Mike makes me a fried egg etc for breakfast. I drink as much juice and ginger ale during the day as i can and eat as much food as I can. I think I must have at least one bowel movement and lots of pees. I drink a glass of Metamucil before bed - but having a good poop is still a worry. My diet is low fibre and I miss not having bran buds each day. Then we do at least 4 good walks per day. Sometimes we bump into friends which is always uplifting. In between I read my book and later in the evening maybe watch a little TV which can be quite relaxing. I look at my paintings hung around the house and think how I could improve them. I am strong enough to dab away with a paint brush but could not yet put any thought into what I was doing so won't do that for awhile. So bit by bit I am using my reasoning brain to get better and am keeping on a fairly level emotional level. I don't think I will crash.
Mike meanwhile is taking care of everything and reading about puppy training. It is 4 weeks since we had the vet euthanize our poor little Lexy. I cried a lot at time because I knew it was the end of an era although I didn't know then that I would need surgery. But for life to go on we have to change - often in ways we don't really want to. So there you go. Change is the only constant and what was normal yesterday may not be normal today
Friday, September 29, 2017
Today I saw my GP. He read the report on the biopsy of my lump. Apparently it was cancer but low grade and slow developing. It had penetrated my bowel wall but not gone through. The surgeon removed it along with 14 cm of bowel. Since it was all removed I will probably be fine and not need chemo. I think I am very lucky and I am feeling unbelievably better every day. I spend my time walking, eating, resting and sending emails. On the asthma front I seem to be fine though I still have phlegm and coughing probably from gn. I lost around 10 lbs so my next target is to get strong as fast as I can.
Thursday, September 28, 2017
My surgery is done and I came home yesterday. It was a pretty arduous experience because I had a setback on about the third day. Up until then I was doing ok and even eating light foods. I remember chicken soup the first night. Apparently on the second night my stomach stopped draining and fluid built up. I got quite swollen and had bad pain. To fix this required a gn tube - gastric nasal - inserted through my nose and down my throat to my stomach. It had a pump which suctioned the stuff out of my stomach and into a container. It could be turned off when I needed to go to the toilet. While I had the gn, I could not eat or drink anything except ice chips and I was sometimes in pain plus nausea. Apparently the drugs I took were 10 times more powerful than morphine and definitely worked. The tube have me a sore throat and made it hard to swallow pills. I think it might have damaged my throat because phlegm would build up and make me cough. A lot. It still happens occasionally.
I was a bit slow passing gas - required before I could eat. I walked the busy halls - I called it "walking for a fart" - either with Mike or alone. Mike was so great and came in 4 times a day - sometimes just to sit and hold my hand. He kept in touch with everyone. Elspeth came for a visit on Saturday which was really wonderful. I think it was Monday when I had my first fart. Yippee!
My room had 4 patients. One of them was there when I arrived and still there when I left - poor thing. She didn't walk much but avidly read library books. She lived alone so had a lot to deal with. Another notable patient was a tourist from Italy who didn't speak English and had had to have surgery on her broken ankle.
Finally the gn came out and the next day I could eat lunch and dinner. The day after - which was yesterday - I had my first poop and was allowed to leave that morning
It is so great to be home and get away from the horrible hospital smell. Especially the really stinky toilet. All the nurses were very kind and professional which made it bearable. But at home it is bright and sunny. Just lovely. And Mike cooks great meals. I am so hungry especially for meat. Overall I lost 8 lbs so am a bit weak , gaunt and covered in bruises. I have to inject fragmin once a day to keep from getting a DVT. That's enough for today. Tomorrow I see my GP and hope he doesn't have any bad news like I had cancer. What is is - so I won't worry.
Sunday, September 17, 2017
What surgery? It's called a bowel resection and means that my surgeon will be removing a section of my large intestine to get rid of the strange "sigmoid mass" which has grown in the lower section (formerly I called it a polyp.) The colonoscopy showed that it was abnormal. the surgery will show what that actually means. If it's cancer I will have to have chemo. I sure do hope it's not.
In the meantime, my CT scan showed that I do not have any cancer anywhere else. This is a really good sign that all should be well. The CT itself included dye - which I had never had before. It was pretty benign - I could feel the warmth from the dye as I lay in the scanner. When I got home I ate some breakfast, went for a walk and then ate some lunch. After lunch I felt so tired, I decided to lie down in bed and I fell into a deep warm sleep. I got up for a few minutes, still felt tired and went back to sleep - same thing a couple of hours later. By dinner time the drug seemed to have worn off and I ate dinner and watched TV. That was 2 Fridays ago.
Tuesday I had my appointment with my surgeon. He simply said I have to have surgery, showed me a diagram and said I wouldn't miss the section they cut out and that the two ends would be stapled together and then stuck back in. It will be done laproscopically which means no big incision like the one I had for my gallbladder almost 50 years ago. Just a few holes. The surgery should only be moderately painful and recovery should be much faster than my gallbladder. In fact recovery seems to be all about having your first fart - a sign that your bowels are getting back in action. This, in turn, can be speeded up by getting up at least 3 times a day and walking around. If I can. I will get up more than three times. Nausea and recovery can also be improved be chewing sugarless gum. There's also coughing to clear you lungs after the unaesthetic. That's about all I know.
I went to two appointments - one a pre-surgery with a nurse and one one with an anaesthesiologist. There are two other big things to do. One is to completely empty my bowels again. The other is to have a good wash with a special sponge the night before and the morning of. Also only clear liquids startitng the night before (last night.)
I just took my bowel purging preparation - pico salax. It didn't require any extra drinking and was only a small cup of orange flavoured liquid. Nothing has happened yet but I feel a bit gassy. I should have a few watery bowel movements soon. I hope - hope - hope I don't get nauseated again.
Tomorrow I check in at Admitting at 6 am. I just take my care card, glasses and symbicort. Mike will take my clothes home. Wne i am in my room Mike will bring me a bag with a few basic necessities including pulmicort, tooth brush, slippers. I'm expected to be in hospital for about 5 days - really until the first fart so could be sooner or later. Not much you can do to get that happening except get a bit active.
Ho do I feel? I'm basically pretty scared, pretty annoyed and pretty grateful that this mass was discovered before it got out hand (I hope). If Annilee hadn't sent me for an ultrasound and my DVT hadn't seen pink poops I would not have asked for a fit test and this could have gone undetected for a long time. I am sort of annoyed that the doctor I first called about the pink poops didn't alert me to fact that there could be a problem and I left it for 6 months before I asked my GP for a fit test. I am also a bit annoyed that it took more than 3 months for me to get my colonoscopy after the fit test came back positive. Hopefully the whole thing is so slow growing it won't make much difference.
I am so grateful to Mike and my kids and other relatives for being very supportive. Mike and I went to a jazz concert last night. When this is over I hope we do a lot more stuff like that - singing, skating, RVing, supporting Asthma Canada, going to the opera and visiting friends and relatives - PLUS getting back to painting in a serious way. I am so grateful I don't have any nausea right now and hope it stays that way. Bring on the poops. There's no turning back and I just have to do it.
Thursday, September 7, 2017
Tuesday was a sad day because we took Lexy to the vet to have her "put down." She had congestive heart failure and was so sick - coughing and coughing and swollen up like a water melon with fluid. On Saturday something had happened to one of her back legs and she could not put weight on it. She did adapt to this and could get around - but we knew she was suffering and would never get better. The vet was very kind and Lexy died very peacefully - but I miss her really a lot and could actually cry right now just thinking of her. We have cleaned up all her stuff - mats, dishes, leashes, etc and taken her special food to the SPCA. Now we are getting used to life without a dog.
I fear that my colon issues and Lexy's death have got mixed up in my mind. I hope I don't have anything awful and will try to be stoic about it.
Monday, September 4, 2017
I finished drinking the 3 litres of clear fluid and then started in on the CoLyte ( a more intense laxative that tasted like lavender flavoured plastic). At about the begining of the 3rd litre of CoLyte I started to feel nauseated. By then I had drunk 3 litres of clear fluids and 2 litres of CoLyte. Looking back I am sure this was too much.
Suddenly, as I started the 10th cupful of CoLyte, I vomited ... and vomited and vomited - fountains of pale orange clear fluid all over the kitchen. After every fountain I could hear myself say, "Oh dear." I then determinedly tried to take my next cupful and it started again - in both directions this time. Mike called the nurse line and the nurse said to stop drinking the stuff. I should feel OK in an hour. Unfortunately this did not happen. I kept vomiting about every 45 minutes all night long. Around 6 am Mike called the nurse line again and the nurse determined I was moderately to severely dehydrated, So much for getting hydrated by drinking all that clear fluid. It had actually had the opposite effect. We went to Emergency around 7 am and I got a saline drip and some anti-nausea drugs and felt much less nauseated. We went home and I finally got to bed and had a good sleep for about 3 hours.
I didn't even get dressed to go back to the hospital for the procedure - just wore my pjs. Everything went pretty smoothly. I had another saline IV and around 2:30 I was wheeled into the procedure room and lightly sedated. I could see and hear what was going on. For example I could see what the scope was filming on the screen. It didn't hurt much or feel alarming. I don't know how long it took but when it was done Mike arrived and the doctor came to talk to both of us. He said they had found a polyp or mass that was too large to remove during the colonoscopy. It would be biopsied and I would have a CT scan. It would likely be non-cancerous or precancerous. I might need surgery. At least that is what I remember. He also said I could call his office any time. Hw seemed nice.
That night (Wednesday) I was still sedated but aware. I didn't sleep from about 12 to 3 but I wasn't alarmed. It was pretty hard to eat anything the next day because I still felt nauseated - but I did my best with toast and tea. My main activity was purging my closet of anything I hadn't worn for a year or two. The following night I had the best sleep in my life. The day after that I began to be able to eat normally and do normal stuff - like wash the outdoor furniture, (I seem to have purging into my system1) That evening my daughter and her family came for the night. They were taking our two oldest grandsons to a condo they had bought in Victoria. They were both going to U Vic this fall.
It is now Labour Day Monday. My daughter and her family have come and gone. I think I should be normal but I'm not as strong as I think I should be. It is pretty hot for Nanaimo - around 30. I have been doing some gardening but I find it quite tiring. Also I had a migraine aura without headache yesterday and another one today. I think they are caused by stress and may be what is zonking me out.
Our poor dog has taken a turn for the worse. She is suffering terminal congestive heart failure and has been coughing a lot for months. Despite all the drugs we give her she will not get better. On Saturday we took her for a 25 minute walk which seemed to go well. But when we got home, she had some kind of an episode and now cannot use one of her back legs. It just hangs there limply and makes it hard for her to pee or poop because she doesn't have 2 hind legs to balance on. She has learned how to get around the house fairly well and still has a pretty good appetite but she is as zonked out as I am and I don't think she will ever go on another walk. We are thinking we may have to have her euthanized sooner than we had expected. Maybe even tomorrow.
The other thing that is happening tomorrow is I have an appointment with my optometrist to see how my cataracts are doing. I feel my eyesight is pretty bad and find reading pretty difficult. So we'll see what tomorrow brings.
Tuesday, August 29, 2017
It is now3 pm on the day before the screening test. Last night I took 3 ducolax tablet - these are modest laxatives that get you started on cleaning out your colon. I have already had about 6 watery BMs. I am also drinking an incredible amount of fluid today. First, 3 litres of clear fluids between this morning and 4:30 this afternoon. Right now I am drinking 250 ml (more than a cup) every half hour. It's a lot. I need all this fluid so that my body is thoroughly hydrated before I start taking the heavy-duty laxative at 5 pm. Once I start drinking that nasty stuff, all the moisture will be sucked out of my body and I could become severely dehydrated if I don't increased my hydration level right now.
I have now drunk 2 litres of clear fluids and feel as if I am swelling up a bit. I didn't drink very much this morning due to being at the teaching session at NRGH and then shopping for a variety of clear fluids. Apple juice, which is what I had bought, will not replace all the nutrients I will loose. I am drinking apple juice, gingerale, broth, and jello. I also have popsicles. At 5 o'clock I start drinking 3 litres of a laxative called CoLyte - 250 ml every 20 minutes for the first 2 litres and than 250 ml every 30 minutes for the next litre. This will cause some watery bowel explosions and clean me out. The timing for this to start is different for everyone - could be in 15 minutes or not for a few hours. I hope mine is done soon. (Pause I am now off to drink 250 ml of gingerale. Done. So this is what I'm doing at 3 o'clock on a sunny but smokey (from forest fires) afternoon at the end of August.