DIAGNOSING LISA.....

I was not sure how much about my recent health issues I was going to share in this space but……who am I kidding I share just about everything here.  Also by sharing it provides me with an opportunity to work through my own thoughts and feelings on the matter and also puts me in a position to ask for prayers.

So as some of you may or may not know I was diagnosed with asthma 6 years ago almost 7. It happened suddenly…..friends and I were driving back from a weekend away on a beautiful Sunday and when we stopped for lunch I realised that my throat had a tickle and I was feeling a little sluggish.  By the time we reached home I was running a bit of a fever and went to lie down.  I woke up in the emergency room of the local hospital. I was admitted with bronchitis and sever infection.  I was discharged 3 days later but was admitted 2 days later with pneumonia. I was once again discharged only to be admitted a couple of days later.  This time the diagnoses was asthmatic bronchitis with sever bronchial infection.  This time when I was discharged I was a lot better.  I saw my GP a couple of days later and he recommended I see a Pulmonologist (lung specialist) to see if there was any damage to my lungs.

I saw the specialist and it turned out that I had kept the asthma.  I was placed on meds and went on my merry way.  For about three years things went fine.  I had the occasional asthmatic episode but they were few and far between. I was able to live a normal life without much thought to my asthma other than the fact that I always carried a pump with me.  Then the winter of 2009 struck and I had a similar experience where I was in and out of hospital over a period of a month with respiratory infections. In the end my asthma meds were adjusted and I was to return to my normal life……yeah that so did not happen!!!

I started getting upper respiratory infections and bronchitis every three months or so.  I would lose my voice and I would battle with my breathing. Every time I saw the doctor he would adjust my meds, put my on antibiotics and a “mean cocktail” of cortisone, steroids and adrenalin.  With time the “mean cocktail” became part of my treatment plan and with that all kinds of side effects.  The weight gain was interesting.  I had always been what most would call petite but as time passed and the kilo’s piled on petite because plus sized!!!  If that was the worst of it well I guess I could learn to live with it but the dry skin all year round, the constant “dry” eyes and my hair falling out was difficult to deal with.  I cream myself from head to toe every morning and every night.  My dad used to tease me saying that I am so slippery from all the lotion I put on that I slip out of bed.  My nails would split down the middle and my heels and elbows were like sandpaper.  I spent an additional hour every day just dealing with the side effects of the medication. 

Over the past 18 months my health has declined rapidly.  I felt like I was sick every month and I was starting to worry about my output at work because I felt so yucky all the time.  It was during this time that my pulmonologist immigrated to Canada leaving me doctor-less. I tried to get in with other specialists but between the costs and the difficulty in securing an appointment I just gave up (EPIC FAIL!!) and just started seeing my GP.  Every time I got sick we would adjust my meds and we adopted a wait and see attitude.

From about August last year I started to notice that I was using my “in case of emergency” pump more and more during the day. If I had done any form of exercise I would have an asthmatic event and I was constantly feeling flu-ish. Now although this was all going on I was not as in tune to it as perhaps I should have been but it was during this time that my dad’s health started to deteriorate. I was not sleeping or eating much and there was no real routine.  There were days that I would only take my morning meds at 10:00 and sometimes not have time to take my evening meds.  Everyone was on at me about taking care of my immune system and sleeping more, drinking more water and eating correctly.  Well in a perfect world I would have done all that but although I did not realise it at the time my dad was in the final stretch of his race here on earth and I was in his corner every step of the way.  I was not taking good care of myself because I had chosen to put my dad and his needs first. A decision I will never regret regardless of the consequences to myself.

However, having said all that.  When the dust started to settle after my dad passed away I started to notice things.  My hair was falling out in clumps not only when I brushed it or washed it but just in general I would find hundreds of hairs on my clothes or pillow.  My skin was giving me a lot of problems….I have never had a bad skin (except for the monthly “red snapper” pimple) but now my skin was spotty and so dry.  I went to see someone about changing my skin products to see if perhaps I was now needing a product suited towards a more mature skin (Huh) but when they did a test on my skin she said that I was using the correct products but my skin seemed “unhealthy”.  She gave me something to use and that was that.  When I went for mani’s the technician told me my nails were very brittle so much so that she had to limit the about of buffing she did on them. I was also developing some odd tummy issues…..I will spare you the details. In addition to all this I was constantly sick.  At first I thought it was hay fever and changing of the season type stuff but I just never seemed to get over it and what did the doctor do….gave me more meds!!!

In February our CEO landed up in hospital with a respiratory issue.  He was treated by a specialist and was very happy with the service and treatment he received.  Now being a CEO he has the resources to literally seek treatment anywhere in the world.  In addition he is a doctor himself so he would not put up with less than the best.  To my mind that was “proof” enough that perhaps this was a doctor I needed to try and see.  There was another major plus point and that was that this pulmonologist is situated about 3km’s from my home.  What you have to bear in mind is that pulmonologists do not grow on trees and the vast majority of them are situated in Johannesburg.  For a normal check-up that would not be a problem but what if I have an asthmatic episode which requires immediate treatment or hospitalisation.  Am I going to be rushed off to Johannesburg…..how would my family support me from there.  It just did not work for me.  I contacted the pulmonologist but he was not taking in new patients.  I put my name on the waiting list and prayed for the best.

In the meantime I went off to Egypt and with the exception of the Mt Sinai climb my breathing was the best it had been in months.  I was also not suffering from the hay fever and had stopped taking medication.  Then I came home (see I need travel….for health reasons!!!).  And from 28 March 2013 to today I have been consistently sick.  I have had flu symptoms and have had little to no voice (my family was not really complaining about that).  My energy levels have been very low and I felt tired all the time.  The worst part to me was that I felt like I had a sumo wrestler  sitting on my chest. 

I felt so pathetic and so desperate and if I am honest I do think that there was a little depression lurking. I have been feeling like the most unproductive employee and the worst friend and most definitely the vilest daughter and sister because I have just not had the energy to extend myself to my friends and family. 

My brother and I were reading an email with auto corrects from an Iphone on it and we were laughing so much but one moment I was still laughing and the next I could not breathe at all and was gasping for breath.  My poor brother had the fright of his life and so ended our fun.

Then on Monday last week I received a call from the pulmonologist’s office saying that they had an opening for a new patient and that the doctor could see me on Thursday.  That was awesome news until I found out two things:

•     I would have to take leave because the appointment takes 4 hours due to all the testing they have to do
•     The consultation would cost R2 550 that is about $282 and 181 British Pounds

I was devastated.  A day’s leave I could try and get approval for but where would I get the money for the consultation.  I would also have to pay additional costs for x rays and blood tests.  I spoke to my medical aid and they would only pay R420 ($47 and £30). I so desperately wanted to see the doctor but money is a little tight after the trip to Egypt.  I spoke to my mom and she graciously offered to pay for the consultation.  I would love to say that I was too proud to accept the money but I was desperate enough to take it.

So on Thursday I arrived at the hospital just after 08:00 to start the testing process.  I first went for x rays (which took forever) and then I had blood drawn.  Then I went to the specialists rooms and did several different lung function and lung volume tests. The lung function tests were very difficult and I truly battled to get through them.  The one reading was so bad it did not even show up on the fancy machine doing the testing.  The technician eventually gave me a couple of puffs on an inhaler in an effort to settle my lungs and try and get a better reading.  Which we did.

I was very nervous waiting to see the doctor.  For so long I have been living with this fear that I am turning into a hypochondriac or that I am just a sorry sap who can’t deal with life.  BUT then the doctor called me in and we had an hour long discussion.  Firstly, my heart and esophagus are fine. Then from the x rays my lungs from the outside (you know what I mean) look normal.  There are no lesion’s or dark shadows.  He then checked my blood pressure and so on.  All normal.  Then he took me through the lung functions tests…..not normal…..not normal at all.  But before he carried on he wanted to take down my history and all the details of the meds I had been on which took forever.  Then he decided that the hay fever may be having an impact on my lungs so he asked me to stop using all the meds including my asthma meds for three days and go for more blood tests and lung function testing on Monday.

I battled the weekend.  Every breathe was a fight and because I was not on the antihistamine I was struggling with a stuffy nose and sneezing a hundred times every minute.  On Monday I went for more blood tests and then I went for a skin prick allergy test. So what they do is put strips of tape down the inside of your forearm.  Each strip is marked from 1 through to 12 and on one there is a control A and the other has a control B.  Then the nurse applies a drop from 24 different vials next to each number. Each number is linked to a different allergen.  Number 1 was cat hair and number 2 was dog hair and so on and so on.  It tests different grass types, pollens and other airborne allergens like dust mites. Once she has dropped a bit of liquid next to each number she then takes a blade type instrument and “pricks” the skin under the drop of liquid. I then had to sit with my arms in the same position for 30 minutes while the allergens interact with my skin.  It was endless and it was like Chinese torture because where I was allergic to something it swelled and itched like crazy……kinda like a mosquito bite. 

After the 30 minutes of agony the nurse took a clear plate of glass and kinda squashed it over the “reaction” depending on how big and how white the reaction is (think mosquito bite again) the worse the allergic reaction is. I can’t begin to explain the relief when I could was my arms and rub an antihistamine cream over the “reaction” sites. I could have looked at the results but I chose to wait until I could go through them with the doctor.

I felt so yuck from what I assume is the lack of medication and then the allergy tests that I just wanted to crawl up into a little ball.  However, I had to do more lung function tests and then see the doctor. When it was finally my turn to see the specialist I was so ready to just get the diagnosis and leave.  He was very sweet (for a man with zero personality) and took me through all the test that were done and then explained in detail WITH pictures what the diagnosis was and what it means.

So here it is:

My asthma has progressed from being a normal asthmatic condition to a chronic condition.  It seems to have skipped the acute stage completely.  The doctor believes that I have probably been in a chronic condition for at least the last year but did not fully realise it because of everything I was dealing with. To break it down even further I have a total lung function of 52% without medication and about 59% with medication.  In addition and this is one of my biggest issues is that when I exhale my lungs do not expel all the air it should....in fact I have over 2 liters of air which should leave my lungs it doesn't and that means that there is not a lot of place for inhaling new air. Hence the shallow breathing, the tiredness and low energy. In a normal person the test percentage should 100 but mine was 274. 

I am also allergic to a bunch of airborne factors such as cat hair, certain pollens, cypress (and conifers) trees and two varieties of dust mites. Low grade allergies for grasses and wheat’s. My main trigger however remains any change in weather.

I will not get my lung function back but we can improve it with meds. The extra volume will continue to stalk me but we have plans for improving that in the summer.. So now the treatment plan is a page long script for meds to treat both the asthma and the allergens then I have to watch early morning and night time air and basically "house arrest" for the winter months.....although I got a permission slip for Bon Jovi. Then we will review the effectiveness of the meds and so on in four months’ time.

I burst into tears when the doctor shared all this with me because I was so relieved that it had not all just been in my head that I was not just pathetic….there IS something wrong with my lungs!!!  It was so worth all the money and time (I ended up having to take the day off on Monday too).  I finally feel like I am with a doctor who understands what I am dealing with (he himself is asthmatic as is his three kids) and I have a treatment plan that is being reviewed with my lifestyle and my health in mind.

I started my treatment plan last night and am slowly going to make adjustments to my lifestyle to accommodate the fact that I am a chronic asthmatic.  No more smoking areas for me in restaurants, no more late nights out and no more beating myself up about the stuff I just can’t do.

 The doctor is positive that with some changes and the meds we will find a good balance that won’t affect my life too much.  I am very grateful to have someone on my side who understands and I feel blessed that I have a doctor who takes the time to explain things in a “Asthma for dummies” way!!!!

So as I start this journey please pray for me.  Pray that I will be able to make the lifestyle adjustments and stick to them, pray that the medication and full treatment plan will be the right one for me and most of all pray that I will find acceptance that although things have changed and will need to change me I will be ok.......eventually!!!