That bug of mine

A roller-coaster called INR

  As my anticoagulation keeps changing drastically, I have to go to the hospital anticoagulation clinic every two weeks for now. The Warfarin dosage has diminished a bit so let’s hope it will keep on doing just that.

One thing I hate though is to have my blood withdrawn from my arm. I hate needles and needles do not like me either. It’s been a war since I was a small child. It takes forever to find my veins as they seem to disappear as soon as they see the needle approaching. It requires some poking which I find very disturbing. However, the nurse was quite good and very nice, so my ordeal was short lived.

My range is still too high. for some odd reasons this body of mine is making it a point to be annoying. So back to the clinic in two weeks time.

The road to recovery …

I must say recovering from a pulmonary embolism is not a piece of cake. I keep hearing from my doctors that I had a massive pulmonary embolism and they are glad I’m alive. Because I nearly died from it, my lung specialist being so slow in treating me. Once in the hospital for the second time in 4 weeks I was well taken care of but obviously the damages were done by then and today, two years after , I’m still suffering the consequences, at a heavy price.

I was unprepared because I was naive to think that the recovery will be easy. I am unable to be standing 10 min in a row. My all body goes crumbling. Fisrt, I have the terrible pain in the lower half of my body, then my back gives me an excrutiating pain, then I start to have difficulty breathing and I end up having to sit down.

Some days, the all thing gets to me. My doctor could not answer me when I asked if I had to just accept my condition and not fight it anymore. I was told, once again, I suffered a massive embolism and the lungs and the heart have suffered. Given I already had other diseases, my weakened body suffered a lot. Walking is a basic thing I’ve always been used to do so. However for the past two years, my body refuses the effort. So I’m only comfortable in my home because I can sit down easily.

Some have suggested I start using a wheelchair but  I don’t want to. It would upset me more. It may be very stupid because it would allow me to go outside more often. I just feel I can walk if I can sit. But sitting is not always possible. So, it’s time for me to go back to my great hobby: painting. Because then, my soul is happy and I’m so immersed in my work that my emotions calm down. That’s why it’s wiser, if I do not cook at the same time of course, because then, the all meal will end up burnt no doubt .

Bug attack

As I was proud of myself for not having been ill,  this past winter, my lungs refusing to rest during the cold weather, I woke up last week with a swollen gland in my neck and I could barely swallow my saliva. It was hurting so much as soon as I wanted to drink something. Eating was even worse. After a few days of craziness I decided to see my doctor. I did not know how bad it was going to swell because it seemed to swell more every day. So I went to the A&E  first and then to my gp.

Yes, there was an infection in a gland and it was indeed very swollen. I was put on a strong dosage of Penicillin and I’m still on it. I’m glad to say the swelling has gone down a lot and the pain has disappeared. Amazing one day you’re doing fine, the next you’re just very ill. This body of mine sure has a mind of its own. Weather changes have not helped at all.

Endometrial cancer: 2nd biopsy

 I had a second biopsy on my birthday; that’s not really how you want to start the day of your birthday but I figure if doctors had to consider that fact of life, they will never be able to schedule any patient appointment.
I was so stressed out I must say because I will then know if the Mirena was working and if everything was going according to plan.
I talked to the specialist asking him how bad was the thickness of the lining of my womb. He became somewhat agitated, telling me in my case, it was not relevant. On the other hand what was happening was the change of cells that gave great concerns to the doctors.

I put two and two together and realised what was told to me months ago, was just starting to make sense. If the Mirena was not put in, the risk of developing the disease was very high. Waiting for the results was very stressful. No rest for your soul, just a  tremendous worry. At last the results came and everything was back to normal.
However, if bleedings occur or any pain, I was told to contact my gp immediatly to be referred back to the gyne-oncologist.  Anything can happen during the next 10 years, time I will have to keep the Mirena. The weight loss is also part of the therapy. So hopefully my Weight Watchers will hang in there with me .

All this left me drained and lost . The fear of the unkown is somewhat unbearable.  I had wish for peace and closer. But there was and there is no closure. It’s a wait and see game that I wish I did not have to play. Positive thinking would be good right now .

Vitamin D deficiency

Well, I love the sun and I’m happy to live through very sunny day. But unfortunately, the sun is not a major part of the weather in my part of the world and that alone is a real problem for the body.

I also spend most of my time indoors and therefore, the sun is not allowed to pierce walls or windows. It would be nice if it could pierce through the windows but so far the few days we had the sun smiling back at us, were some kind of miracle and unfortunately never lasted.

So vitamin D and calcium tablets were added to my daily routine as part of the big crowd of meds fighting in my pill box. Do I feel any changes with that vitamin?  Not really ! Hopefully, the next blood test will be more normal.

Complicated INR

I have had to have weekly visit to the anticoagulation clinic several times during the past three months because of the ever so changing from a very low to a very high range. It’s not easy when the body decides to play with your nerves. My medication was raised to the initial dosage I had when I was first diagnosed with a blood clot in my lungs.
I guess, Warfarin is hard on the body. For some reason, when everything seemed ok, and the dosage was low, it got out of hand. The ups and downs of this blood running though my veins will eventually calm down. We just do not know when.

OPD clinic

I went to the OPD clinic mid january and I left smiling which in itself was a good sign. I was actually able to   talk with the chief of the clinic and for the first time I saw him smiling. So far, I thought he was a bit scary, always so serious and all.We reviewed my medication. He thought I should stop the Spirivia inhalor because it has proven to be bad for patients who have heart problems. As I cannot have the powder one because I will provoke an asthma attack, I was switched to Atrovent . My complex coktail of other medications was discussed and we both agreed that some of them will have to be stopped at some point and hopefully everything will be ok.

The wheezing has calmed down at last, so the asthma is now well controlled, which was not the case month before. I still get the wheezing espacially while I’m eating or if a room is a bit cold but after I take my inhalers everything calms down again.

I spent the winter without major problems and that alone was enough to consider I was doing fine, as fat as my lungs are concerned. My sat was at 95.

The bone scan was normal as I am in the average range to test if I had osteoporosis. I had some blood tests done too.

Amazingly enough, when you go that early to the hospital, the visit is lengthy, the doctors are relaxed and you end up being very satisfied of that special care that does not happen later in the day while the clinic is full of patients waiting for their turn. Something has happened in that hospital: the patients must be on strike !

To be or not to be ventilated !

  Last december I had my 6 months routine visit. It’s always on a tuesday. At times,  it’s packed with patients and we have to wait forever and when I say forever it’s really forever. For some reasons I cannot explain, the patients seemed to have vanished into thin air.

My blood gases were fine. As I have lost a considerable amount of weight, they are considering revewing my apnea problem . Indeed, the doctor thinks that my hypopnea is due to my weight. If I loose more weight, I will have a sleep study without my Vpap to see if I do not suffer from apnea anymore. If not, it will mean being free from “skippy” and at last, feel normal again. That was a good day !

2012 , well on it’s way …

I must say it’s been a long time I have not written anything on my blog. Somehow there was always something preventing me to do so wether it be life or mood.

I hope this first term going on to the second, has been smooth for you and that 2012 brings you all you desired. I wish you all the best for the rest of this year and above all, a good or better health.

Breathe easy !