My apologies to my readers

My apologies to my loyal readers , This month has been a shock for my family as I  got ill and spent almost two weeks in the hospital.

You always told that life can change at any minute for the worse but you never take it for granted until it happens to you. We took our family on our first big family vacation and  the day after we arrived I woke up very ill. I was unable to keep any food down and I had a horrible cough.  This went on off and on for the 12 days we was on vacation because I was in another county and my insurance would not cover any Dr visits I toughed it out until we got home.

On our flight home I experienced horrible pain in my ears especially my left ear. I had lost hearing in both ears with my left ear being the worse and I had started to cough  badly. I had a Dr visit and when I arrived I could not breath and my heart rate was extremely high.  My Dr. called 911 and I was taken to the hospital where I was put on breathing treatments , oxygen and given a chest X-ray and a cat scan. The Cat scan showed I had nodules in my lungs. My oxygen stats was extremely low and we  was struggling to get it to come back up even with oxygen and breathing treatments.

A few days later while still in the hospital I had a Bronchoscopy with biopsy and we would receive the news that would forever change our lives. I  have Langerhans Cell Histiocytosis Other wise known as Histiocytosis X.
Histiocytosis X affects many organs and can lead to death. About half of those with pulmonary histiocytosis see improvement, while others eventually have permanent loss of lung function.The disease has goes by several names, including Hand-Schüller-Christian disease, Abt-Letterer-Siwe disease, and histiocytosis X.



Histiocytosis X has typically been thought of as a cancer-like condition. More recently researchers have begun to suspect that it is actually an autoimmune phenomenon, in which immune cells mistakenly attack the body, rather than fight infections.

Extra immune cells may form tumors, which can affect various parts of the body including the bones, skull, and other areas. Histiocytosis X is rare and  thought to affect roughly 1 in 200,000 people each year. Currently there is no cure but the disease can be put into remission.

Histiocytosis X often affects the whole body. A disease that affects the whole body is called a systemic disorder.


Symptoms can vary between children and adults, although there can be some overlap. Tumors in weight-bearing bones, such as the legs or spine, may cause the bones to fracture without apparent reason.


Symptoms in adults may include

Bone pain ( I have)


Chest pain  ( I have)

Cough   ( I have)

Fever 

Vomiting  ( blah!)
General discomfort, uneasiness, or ill feeling (malaise) ( I have)

Increased amount of urine

Rash ( I have located on my face which also swells a great amount)

Shortness of breath ( I have and I am now on oxygen at home)

Thirst and increased drinking of fluids ( I have at times)


This disorder is treated with corticosteroids, which suppress immune function (including the dangerous cells). It can and is also treated with  Radiation and  chemotherapy. I should find out in the next week or two what our treatment plan will be. We are  on the waiting list to get into a oncologist and then with my family Dr and the oncologist we will decide on what treatment will be best at this time.

I do know one thing. I don’t plan on going anywhere anytime soon so we will just have to put this in remission! I will try to blog more often but I am tired easy  and trying my best to control my pain . I dislike being  on oxygen but hey what ever helps me stay around for my children and husband. I was given the go ahead today to still continue my diet review YAY! So I will post on this in the next couple of days.

I just wanted to let everyone know I have not forgotten about you and I will get back to blogging as soon as I can. Skip has been off work five weeks now and will go back Monday as he has been on Family medical leave act. I welcome all and any prayers that can be said for my family at this time.

A very tired Trina



2 comments:

Claudia said…

So very sorry to hear about all of this. Just know I am thinking of you.

Virginia-Ann said…

Please remember that we are thinking about you and are praying for a full recovery. Feel better my friend!