Sunday, April 19, 2009
Some pictures of our relaxing Saturday night.
Don't those eyes look just like Vinnie's?
With all the craziness going on in our house lately it was awesome to spend our Saturday lounging around- just the four of us. Unfortunately, I was having a tough day health wise and we ended up in the ER again last night with yet another anaphylactic attack. Happily, it didn't evolve into the full blown attack that it was a week ago but it was bad enough. The doctor told us last night that it takes awhile for the medications to start working so hopefully once that happens we can avoid these episodes all together.
Monday, April 13, 2009
Appointment Today
Luca is upstairs asleep and Ja took Vinnie to the store for a much needed rice krispie treat ingredient run. So I'm sitting here in a quiet house with a moment to update...
We have the results of some of the preliminary tests and blood work and the Immunologist I saw today confirmed that I do indeed have Systemic Mastocytosis. My mast cell levels came back 46 times the amount of a normal patient. Also, he said he believes we can rule the immediately deadly forms of the disease involving leukemia.
We loved the doctor and he seemed to have a great amount of knowledge on the disease. Going forward he is going to be the gate keeper, as he put it, for my treatment. Ja and I just bubbled and babbled on and on during the appointment about how relieved we are to finally have a diagnosis and how excited we are to move forward.
After the initial glow of hearing the news that's it's most likely not leukemia wore off I started to hear the other things the doctor said. When Jason came home from work this evening I found his mood had changed as well as he also started "hearing" the words of the doctor as well.
For now, the game plan is to treat the symptoms and to keep attacks like what happened last Monday from happening. He started me on a barrage of medications and I am excited that maybe I can start feeling more like myself again.
And so now we start the process of pinpointing exactly what category and stage of the disease we are facing. Over the next four weeks I need to get a bone scan, see an oncologist to have a bone marrow biopsy done, and see a GI doctor to have the stomach, spleen, and esophagus biopsied. Then after all that jazz is done I meet back with the immunologist to get a more detailed game plan together.
So that's that for now. I leave it there and promise to move on to happier blogging until we have more news.
We have the results of some of the preliminary tests and blood work and the Immunologist I saw today confirmed that I do indeed have Systemic Mastocytosis. My mast cell levels came back 46 times the amount of a normal patient. Also, he said he believes we can rule the immediately deadly forms of the disease involving leukemia.
We loved the doctor and he seemed to have a great amount of knowledge on the disease. Going forward he is going to be the gate keeper, as he put it, for my treatment. Ja and I just bubbled and babbled on and on during the appointment about how relieved we are to finally have a diagnosis and how excited we are to move forward.
After the initial glow of hearing the news that's it's most likely not leukemia wore off I started to hear the other things the doctor said. When Jason came home from work this evening I found his mood had changed as well as he also started "hearing" the words of the doctor as well.
For now, the game plan is to treat the symptoms and to keep attacks like what happened last Monday from happening. He started me on a barrage of medications and I am excited that maybe I can start feeling more like myself again.
And so now we start the process of pinpointing exactly what category and stage of the disease we are facing. Over the next four weeks I need to get a bone scan, see an oncologist to have a bone marrow biopsy done, and see a GI doctor to have the stomach, spleen, and esophagus biopsied. Then after all that jazz is done I meet back with the immunologist to get a more detailed game plan together.
So that's that for now. I leave it there and promise to move on to happier blogging until we have more news.
Wednesday, April 8, 2009
Some news...
It's been a heck of a week in our household. Ever since Luca's birth I've been feeling sick and just not right. On Thursday I got the results of a skin biopsy that knocked me back a bit. I was diagnosed with Urticaria Pigmentosa - Systemic Mastocytosis. A rare disease where the body makes too many mast cells which fire off histamine and other agents. I've been having "attacks" which I thought were migraine attacks for the past ten years and they have been getting progressively worse.
Recently, I've been having symptoms every day and on Monday night I had the mother of all attacks. I was going through the normal routine of a bad attack (flushing, vomiting, diarrhea, muscle aches and shooting pain in my back) when I started to feel really awful. I called to Jason that he needed to call 911. He came into the bathroom, I stood up and passed out. Fortunately, he caught me and as soon as I came to he called 911. The ambulance arrived within minutes. My blood pressure was 50/10, my pulse was faint, I was dazed and not really aware of what was going on but I was conscious and breathing. It didn't take them long to get me stabilized and for the first time I was able to get proper treatment since we had a diagnosis. Once Ja told them what it was they were able to start treatment right away for anaphylaxis. In the past I've ended up in the ER and the doctors weren't sure how to treat me since they didn't know the cause.
Today I'm feeling normal and ready to take on the task of fighting this thing. Because it is so rare the nearest doctor that specializes in Mast Cell Diseases is in Cincinnati. However, I'm going to try going to Vin's allergy/immunologist first. They called him while I was in the ER and he said he has never seen a case of Mastocytosis but was familiar with what it was and was kinda excited about trying to help.
There are several variations of this disease. I believe I have the "nicer" version called indolent mastocytosis that means it won't shorten my life span but will change my life significantly. I believe this because in my mind it makes sense to assume the best until we have test results.
There is no cure. If I have the nice version I can expect to have good days and bad days but I think I can improve on how I have been feeling and that would be good. For now, I'm content and I'm ready for the challenge. Though I'm sure my feelings will bounce back and forth.
Here is some info on Mastocytosis:
What is systemic mastocytosis?
Question:
Could you please explain what systemic mastocytosis is? Is it a type of blood cancer? Is there any prescribed treatment? Is it terminal? I cannot find any reference to this on the web. Thank you.
Answer: Systemic mastocytosis is an uncommon condition involving a certain type of body cell known as a mast cell. Mast cells are found in the connective tissue that surrounds and supports the more ordered tissues and organs of the body. Cartilage, bone and blood are specialised examples of connective tissue.Mast cells mediate the skin's response to mild mechanical injury, producing immediate reddening of the skin due to the release of a chemical called histamine from granules within the cell. An over production of mast cells can occur at any age and is seen slightly more often in males. The exact prevalence of systemic mastocytosis is not known and there has been no link made to it being a familial condition.
Systemic mastocytosis is classified into four forms:
1.The majority of patients have what is referred to as an 'Indolent' form that is not known to alter life expectancy and the associated clinical findings define their treatment and management.
2.If the blood system is involved ('associated haematologic disorder'), then the nature of the blood disorder dictates the treatment required and the prognosis which can vary widely.
3.In 'Aggressive Systemic mastocytosis' the liver, spleen and lymphatic system are involved and the prognosis is poor.
4.'Mast cell Leukemia' is the rarest form of the disease and is invariably fatal.
The clinical symptoms a patient experiences when suffering from the condition are due to the mass of mast cells present in the tissue concerned and include recurrent headaches, itching, flushing, palpitations and fainting, gastric ulcer disease and lower abdominal crampy pain. These systemic changes contribute to bone pain and malabsorption and produce small, reddish brown macules or papules, termed urticaria pigmentosa within the skin which are present in 90 percent or more patients with indolent systemic mastocytosis.
The diagnosis is suspected first on the clinical history and physical findings. A 24-h urine collection for measurement of histamine and other metabolites, blood levels of histamine or the mast cell-derived neutral protease tryptase assist in confirming things. Additional investigations may be required depending on the clinical symptoms. Obviously a tissue diagnosis is easy if the skin lesions are present, but to confirm a diagnosis of the systemic involvement of other organs a bone marrow biopsy and aspiration is often performed.
Recently, I've been having symptoms every day and on Monday night I had the mother of all attacks. I was going through the normal routine of a bad attack (flushing, vomiting, diarrhea, muscle aches and shooting pain in my back) when I started to feel really awful. I called to Jason that he needed to call 911. He came into the bathroom, I stood up and passed out. Fortunately, he caught me and as soon as I came to he called 911. The ambulance arrived within minutes. My blood pressure was 50/10, my pulse was faint, I was dazed and not really aware of what was going on but I was conscious and breathing. It didn't take them long to get me stabilized and for the first time I was able to get proper treatment since we had a diagnosis. Once Ja told them what it was they were able to start treatment right away for anaphylaxis. In the past I've ended up in the ER and the doctors weren't sure how to treat me since they didn't know the cause.
Today I'm feeling normal and ready to take on the task of fighting this thing. Because it is so rare the nearest doctor that specializes in Mast Cell Diseases is in Cincinnati. However, I'm going to try going to Vin's allergy/immunologist first. They called him while I was in the ER and he said he has never seen a case of Mastocytosis but was familiar with what it was and was kinda excited about trying to help.
There are several variations of this disease. I believe I have the "nicer" version called indolent mastocytosis that means it won't shorten my life span but will change my life significantly. I believe this because in my mind it makes sense to assume the best until we have test results.
There is no cure. If I have the nice version I can expect to have good days and bad days but I think I can improve on how I have been feeling and that would be good. For now, I'm content and I'm ready for the challenge. Though I'm sure my feelings will bounce back and forth.
Here is some info on Mastocytosis:
What is systemic mastocytosis?
Question:
Could you please explain what systemic mastocytosis is? Is it a type of blood cancer? Is there any prescribed treatment? Is it terminal? I cannot find any reference to this on the web. Thank you.
Answer: Systemic mastocytosis is an uncommon condition involving a certain type of body cell known as a mast cell. Mast cells are found in the connective tissue that surrounds and supports the more ordered tissues and organs of the body. Cartilage, bone and blood are specialised examples of connective tissue.Mast cells mediate the skin's response to mild mechanical injury, producing immediate reddening of the skin due to the release of a chemical called histamine from granules within the cell. An over production of mast cells can occur at any age and is seen slightly more often in males. The exact prevalence of systemic mastocytosis is not known and there has been no link made to it being a familial condition.
Systemic mastocytosis is classified into four forms:
1.The majority of patients have what is referred to as an 'Indolent' form that is not known to alter life expectancy and the associated clinical findings define their treatment and management.
2.If the blood system is involved ('associated haematologic disorder'), then the nature of the blood disorder dictates the treatment required and the prognosis which can vary widely.
3.In 'Aggressive Systemic mastocytosis' the liver, spleen and lymphatic system are involved and the prognosis is poor.
4.'Mast cell Leukemia' is the rarest form of the disease and is invariably fatal.
The clinical symptoms a patient experiences when suffering from the condition are due to the mass of mast cells present in the tissue concerned and include recurrent headaches, itching, flushing, palpitations and fainting, gastric ulcer disease and lower abdominal crampy pain. These systemic changes contribute to bone pain and malabsorption and produce small, reddish brown macules or papules, termed urticaria pigmentosa within the skin which are present in 90 percent or more patients with indolent systemic mastocytosis.
The diagnosis is suspected first on the clinical history and physical findings. A 24-h urine collection for measurement of histamine and other metabolites, blood levels of histamine or the mast cell-derived neutral protease tryptase assist in confirming things. Additional investigations may be required depending on the clinical symptoms. Obviously a tissue diagnosis is easy if the skin lesions are present, but to confirm a diagnosis of the systemic involvement of other organs a bone marrow biopsy and aspiration is often performed.
Monday, April 6, 2009
My New Hobbies and a Dear Friend
So I've taken up two new hobbies - sewing and arranging faux flowers. Last month we purchased my first sewing machine and a nice sewing table. Unfortunatley, I have ZERO sewing skills/experience/knowledge so it's going to be a slow process of learning. The first time I sat down to use the machine I broke the thread three times and ended up bending the needle. However, last week I successfully finished my first real project - a table cloth.
And the flower thing - well, I guess it's in my blood. My Mom having been flower shop owner and very talented floral designer must have rubbed off on me. I know what you're thinking - silk flowers are tacky. I thought that too until I found the new generation of faux flowers - The Real Touch flowers. They look and feel incredibly real - no fabric flowers here. If you want to join me in my mania here is a link where you can check them out http://www.flowers-by-design.com/. They are very hard to find and it took many weeks of searching to find a place where I could purchase them online withouth business tax id. Last week I got my first Real Touch flower and am in love. Here is a picture:
I made the table cloth and flowers below for Ms. Helen who is a 88 year old women from our church that we visit on Wednesday mornings. We meant Ms. Helen through our church's "homebound program" that ministers to elderly members who don't have immediate family and can no longer attend church because of medical issues.
I have been so blessed by her. What a surprising and wonderful source of friendship and companionship she's been.
Close up of table cloth
And the flower thing - well, I guess it's in my blood. My Mom having been flower shop owner and very talented floral designer must have rubbed off on me. I know what you're thinking - silk flowers are tacky. I thought that too until I found the new generation of faux flowers - The Real Touch flowers. They look and feel incredibly real - no fabric flowers here. If you want to join me in my mania here is a link where you can check them out http://www.flowers-by-design.com/. They are very hard to find and it took many weeks of searching to find a place where I could purchase them online withouth business tax id. Last week I got my first Real Touch flower and am in love. Here is a picture:
I made the table cloth and flowers below for Ms. Helen who is a 88 year old women from our church that we visit on Wednesday mornings. We meant Ms. Helen through our church's "homebound program" that ministers to elderly members who don't have immediate family and can no longer attend church because of medical issues.
It was two Easter's ago when we first met her. Vin and I brought her a Easter Lily from the church and then we started visiting her once a month which turned into every two weeks and now every week. Every Wednesday morning we go over and Ms. Helen has tea made for she and I and cupcakes or some other delicious treat ready for Vin. Making the tea is no easy task for her but she delights in doing it and refuses to allow me to help.
I have been so blessed by her. What a surprising and wonderful source of friendship and companionship she's been.
She simply adores Vinnie and Luca. Vin always greets her with a very excited hug and kiss. Sometimes I'm afraid he'll knock her over but when she sees him she just beams with delight. He tells her all about his week (usually complete nonsense sprinkled with a few words here and there). A few weeks ago, without any one's prompting he told her he loves her. That just made her day.
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