Monday, September 26, 2016

NAPA

I wanted to make a comment today about my involvement with the Asthma Society of Canada. It is an important part of my life with asthma. Without it, I would feel alone, miserable and much more ill-informed than I do as a member.  I  don't personally know anyone here in BC who has severe asthma like mine - except for one of the other NAPA executive members who lives in Victoria. The closest are people with COPD who are actually much worse off.  Asthma can be managed but COPD just keeps on dragging you down.

I have been a member of the ASC patient program (NAPA) for a couple of years and this year worked on strategic planning for the executive of this "group." Being on the NAPA Executive gave me the opportunity to meet and talk regularly with other people with asthma - some with symptoms and treatments like mine - some much worse off. We are now working on fine-tuning of NAPA's role in the ASC  to try to make sure that anyone who joins NAPA can also experience the camaraderie I experience and receive good information about their asthma and how to manage it.

I write this asthma diary - not so much to complain - but to share my experiences and knowledge with others. Hopefully it helps  people understand how complicated asthma can be - I mean who would think asthma affects your feet?

The other thing is that tomorrow I have a appointmens with my asthma doc and respiratory therapist in Vancouver. It will be a long gruelling day with a relatively early start (8:30 ferry), appointments at 12 and 1, new information on what is going on and what I should do, and finally home - likely on the 5:15 ferry. So a 12 hour day for 2 short but absolutely vital appointments. Hopefully this whole silly thing with my feet will be resolved.

Sunday, September 25, 2016

Feet and drug side effects

Asthma and feet may not seem very related to most people but they are for me. At least that is what I think right now. Recently both my feet have become quite swollen - I think as a side effect of sporanox which is one of the wonder drugs I use to manage my severe asthma, sinus disease and eustachian tube dysfunction.

Sporanox is a magic solution for about 40% of people who have sinus and asthma problems caused by over reaction to fungus. This has proved true for me. After 3 months of sporanox my sinuses  are perfect and asthma is at about 85-90% of my best.  I can "pop" my ears and I am not deaf. That's the good news.

However -  the bad news is that I think sporanox is messing with my circulation. I have used it for 3 months and as the months go by my feet have became more and more swollen. At first they were just puffy at bedtime but normal by morning. Then, they did not go back to normal during the night. Then they seemed to get puffier and puffier everyday - especially my right foot. I wear compression stockings because I had 2 DVTs in my left leg about 20 years ago. A DVT (deep vein thrombosis) is a blood clot in you vein above your knee which has the potential of breaking loose and traveling to you lungs where they are called a pulmonary embolism.. A big PE blocks your lungs and can kill you. People wear compression stockings on planes to prevent blood clots which are more likely to start up if you are sitting for a long time. I actually knew someone who collapsed and died as she was getting off the plane after a long flight.

My DVTs were  a side effect of HRT. It was not well known that this could happen at the time - now doctors are more careful. My brother has had DVTs, A couple of years a go he also had a pulmonary embolism and collapsed on the sidewalk outside his house. Fortunately a neighbour stopped to help and he was rushed to hospital where the problem taken care of. I took blood thinners for more than a year after my DVTs. This was to prevent new clots from forming. I also wore compression stockings everyday - on both feet - even though my right leg was normal. Generally I just wore pretty soft, thin ones with little compression - but this summer I decided to stock up on some good ones from Dr. Segals. They were fairly hard to get on and off. When my feet started to swell up I thought that maybe my new stockings were too tight - squeezing my legs into sticks but letting my feet turn into balloons. I seemed to be getting a lot of little bruises on my legs - I assume from putting them on and taking them off. Prednisone makes me more likely to bruise - but it is not a nice sight. I bought some lighter stockings but they were still hard to get on and off and did not seem to make much difference to my feet.

As I  mentioned in a previous post, I talked to my sinus doc's fellow last week and she approved cutting back on sporanox to one capsule per day. She also set up appointments for a chest xray, doppler for legs, and echo cardiogram for heart. When I said I might stop wearing my compression stockings she said that would not be a good idea. Up to that point, I was pretty sure the swelling was not from clots because both feet were equally swollen and it was unlikely I had DVTs - or lower leg clots - in both legs. However, now my left foot is looking much more normal while my right one stays pretty puffy.

I've had my xray. My doppler is next Wednesday - the day after I see my  asthma doc. Nothing yet on the echo. Since cutting back on sporanox (and missing one day entirely by mistake) my left foot is looking more and more normal but my right foot is always  puffy. My DVTs were in my left leg - so I expected my left foot to be puffy from previous scarring - not my right one. This is beginning to make me worry that maybe I have blockages in my right leg - maybe not in the deep veins above my knee (where life-threatening DVTs are diagnosed) but maybe lower down my leg - just affecting my foot.

So piffle. I hope this can be fixed. Today I took our dog on a good long walk. I have to wear my shoes pretty loosely tied to reduce the pressure on my feet. Going down hill when my feet slide further into my shoes (because they are loosely tied) hurts quite a bit. However, the dog and I have done 8.6 km today - so I am happy about that. I have also worked on a painting that needed some fixing and am finally satisfied (I think) that it is done. 

Feet and drug side effects

Asthma and feet may not seem very related to most people but they are for me. At least that is what I think right now. Recently both my feet have become quite swollen - I think as a side effect of sporanox which is one of the wonderdrugs I use to manage my severe asthma, sinus disease and eustachian tube dysfunction.

Sporanox is a magic solution for about 40% of people who have sinus and asthma problems caused by over reaction to fungus. This has proved true for me. After 3 months of sporanox my sinuses  are perfect and asthma is at about 85-90% of my best. That's the good news. I cn "pop" myears and I am not deaf.

However -  the bad news is that I think sporanox is messing with my circulation. I have used it for 3 months and as the months go by my feet have became more and more swollen. At first they were just puffy at bedtime but normal by morning. Then, they did not go back to normal during the night. Then they seemed to get puffier and puffier everyday - especially my right foot. I wear compression stockings because I had 2 DVTs in my left leg about 20 years ago. A DVT (deep vein thrombosis) is a blood clot in you vein above your knee which has the potential of breaking loose and travelling to you lungs where they are called a pulmonary embolism.. A big one blocks your lungs and can kill you. People wear compression stockings on planes to prevent blood clots which are more likely to start up if you are sitting for a long time. I actually knew someone who collapsed and died as she was getting off the plane after a long flight.

My DVTs were  a side effect of HRT. My brother has had DVTs, A couple of years a go he had a pulmonary embolism and collapsed on the sidewalk outside his house. Fortunately a neighbour stopped to help and he was rushed to hospital where the problem taken care of. I took blood thinners for more than a year after my DVTs. This was to prevent new clots from forming. I also wore compression stockings everyday - on both feet - even though my right leg was normal. Generally I just wore pretty soft, thin ones with little compression - but this summer I decided to stock up on some good ones from Dr. Segals. They were fairly hard to get on and off. When my feet started to swell up I thought that maybe my new stockings were too tight - squeezing my legs into sticks but letting my feet turn into balloons. I seemed to be getting a lot of little bruises on my legs - I assume from putting them on and taking them off. I bought some lighter ones but they did not seem to make much difference.

As I  mentioned in a previous post, I talked to my sinus doc's fellow last week and she approved cutting back on sporanox to one per day. She also set up appointments for a chest xray, doppler for legs and echo cardiogram for heart. When I said I might stop wearing my compression stockings she said that would not be a good idea. Up to that point, I was pretty sure the swelling was not from clots because both feet were equally swollen and it was unlikely I had DVTs - or lower leg clots - in both legs. However, now my left foot is looking much more normal while my right one stays pretty puffy.

 I've had my xray. My doppler is next Wednesday - the day after I see my  asthma doc. Nothing yet on the echo. Since cutting back on sporanox (and missing one day entirely by mistake) my left foot is looking more and more normal but my right foot is always  puffy.-My DVTs were in my left leg - so I expected my left foot to be puffy from previous scarring - not my right one. This is beginning to make me worry that maybe I have clots in my right leg - maybe not in the deep veins above my knee (where life-threatening DVTs are diagnosed) but maybe lower down my leg - just affecting my foot.

So piffle. I hope this can be fixed.

Friday, September 23, 2016

What is wrong with my feet?

I had an appointment with my sinus doc's Fellow in Vancouver last week. I like this Fellow a lot. She is very smart, organized and straightforward - but also seems interested and caring. I explained to her about my "fat feet" and blue legs and she wrote 3 requisitions - a chest xray, a doppler ultrasound on my legs, and and an echo cardiogram. I had the xray today and get the doppler next Wednesday.

According to webmd, " Doppler ultrasound test uses reflected sound waves to see how blood flows through a blood vessel. It helps doctors evaluate blood flow through major arteries and veins, such as those of the arms, legs, and neck." I guess this is what I had done when I my DVT's were diagnosed about 20 years ago. Blood flows down to your feet through your arteries and back up to your heart through your veins. If there is a blockage in the veins, the fluid cannot return efficiently to the heart. That would mean that the edema in my feet is the result of blockages in my legs veins - not congestive heart failure. I wonder how they fix it? If they can fix it? I hope they can. My feet are always fat now - though worse when I take my shoes off at bedtime. Even when I am doing my 10,000 steps I can feel how fat they are - and have to keep my laces quite loose. 

The other thing she did was cut back my sporanox to one per day. I wish I had done that when the sinus doc first suggested it - but my asthma seemed to have got a bit worse so I thought I needed the double dose. But my asthma did not improve. I think my peak flow has remained at about 85-90% - so not bad. My sinuses BTW are in perfect shape. I see my asthma doc next week. I do not have an appointment for my echo cardiogram yet. 

Just in case you think i am not complaining enough - my tooth is hurting again. I don't get it. It stopped hurting for a few weeks and Ii am having it removed in a couple of weeks - but now it doesn't feel right. I think I have been clamping down on it or the bridge has gone off centre. Piffle. I hate the way things seem to just keep on breaking down. (Worse - Mike just heard that a fellow we have been friendly with at the yacht club and skating has just died. Such a lovely man. He just bought a new boat. So sad.) 



Saturday, September 17, 2016

New Computer and new problem

A couple of days ago I (with the support of Mike) bought a fantastic new computer. It is a 17 inch ASUS and very powerful and fast. My previous computer was 9 years old, It was great in its day - but had become very slow and could not run some of the new software. It could, however, run some  old software which I like but may no longer be available. My biggest concern is my old version of my website software - Coffee Cup. The early version was very easy to use but not fancy. When new versions came along, I didn't upgrade because I liked the original way it worked. I know I will be able to get later versions but I see a learning curve ahead.

This isn't the new problem in the post title. My new problem is my fat feet. I know the correct name is edema and fat feet mean that your body is not pumping the fluid up out of your feet as it should. Are my fat feet a symptom of congestive heart failure? Are they a symptom of liver problems? I have had fat feet in the past - but they have been worse over the last few weeks. Part of the problem was probably the really strong compression stockings (15-25) I was wearing for a few months. They squeezed my legs into little sticks but let my feet get quite balloon-like.

I finally read the info on the sporanox sheet and found that fat feet can be serious. They can be a sign of congestive heart failure brought on by the sporanox. I immediately went to a doctor at our clinic. He checked out my feet (which were not too fat because I had been wearing shoes) and listened to my lungs and said I did not have congestive heart failure. This was a relief - but is it really true? We went off on our boat for a week hoping all was well. While we were away my asthma doc sent me an email asking if I wanted to have an "echo." I haven't answered yet.

I changed to a lower level of compression stockings (8-15) and I think things improved at bit - at least my legs were no longer black and blue from trying to get the darn stockings on and off. However, even with the lower compression, after I  take my shoes off at the end of the day, my feet start out fat and get a bit fatter. This is not not normal for me - my normal feet are scrawny feet (like my hands) with every bone and blood vessel showing. My toes are red. My edemic feet look like white balloons and the toes look like little white piggies. By morning my feet are about the same - in other words they don't drain out when my feet are at my heart's level. Not good.

Walking makes a difference. The day before I went to the clinic I had only walked 4000 steps. My usual target is 10.000. The day I walked 22000 steps (15 km)  on our boat trip - my feet were close to normal at night and in the morning. 10000 steps is my daily target but apparently not enough. In fact, my runners have now begun to hurt my ankles and today I only laced them part way up - so I'm sure my feet are fatter today.

The final point. I cannot fit my feet into my skates. That means I cannot go skating. My feet always feel strangely tingly. Even though the doctor at the clinic said I don't have congestive heart failure, I'm not convinced. I guess writing this blog has made me think I better pursue this. 

Saturday, September 3, 2016

Teeth affect your whole body

I know this blog is supposed to be about asthma - and here I am talking about teeth. But problems with your teeth can affect your whole body. Also asthma problems can affect your teeth. Taking a lot of inhaled corticosteroids can give you a dry mouth. Dry mouth can severely damage your teeth because the normal saliva is not bathing your teeth in the minerals they need to keep them strong.. My good news is - that there are ways to deal with this.

Today I saw a periodontist (the son of my regular dentist to whom I have been going for 30 years.) He was very impressed with the state of my teeth and gums despite my corticosteroid use. He did a periodontal cleaning to my top teeth and there was no pain and no blood. Unlike more unfortunate people I did not need freezing. I firmly think that this was because I do what my dentist says. I brush my teeth with an electric tooth brush twice a day. I use a little plastic pic to clean stuff from between my teeth and I go around the space where teeth and gums meet with a rubber tip - everynight.

To this routine I am now adding little brushes that can go in between the teeth to help reduce the build up of calculus (is that the right word/).  I must also use my Biotene rinse 5 times a day. I need to get a periodontal cleaning for my bottom jaw in a couple of weeks - then I need to get this preventive periodontal cleaning done a couple of times per year.

I have known people who had to have got the same work done and for whom it was a dreaded major trauma - pain and blood. Thank goodness not me. I think dental issues need to be added to the overall set issues about severe asthma and will send a note to Vanessa at ASC to suggest this.

Wednesday, August 31, 2016

No - probably the tooth

Today the dentist said he thinks my infected tooth should be extracted by an oral surgeon. I am on an earliest cancellation and hoping to get in soon. He also said that my ear infection and laryngitis are likely related to my tooth. I am taking penicillin for a week so things should settle down.  I think I am feeling better and my voice is less hoarse.