onatreetop update

[annekat]

Here's another of us thinking about you and hoping for the best! How flattering to have the staff asking YOU about treatments! And a bit scary, too, since they should be the trained experts! Keep on teachin'...

KB

All good wishes from me, too, and I hope things get resolved and level out for both you and Helen. Sounds like you have both been through more than your share.

[Sangye]

Hang in there, Treetop!

[onatreetop]

well it looks like things sre going to get worse before better...........cant have rituxin treatment for 4 more weeks at the earliest. For some reason this time it isnt just hands or flu like aching. Its in my right foot now swollen wont bend ball of the foot and toes. Have been watching for color changes no blue yet white and red.
got labs in the mail. Globin ratio is 2.3 wbc 13.1 and neutr. is 12302. Everything i look up for neut. levels says cancer? Yes I am in a state of panic again. anyone have any info. about neut ?

[KathyB]

Hi Tree -- Here's what my copy/past from wiki answers site. Hope it helps -- when are you going back to the doctor/hospital?? KB
ANSWER TAKEN FROM: MedFriendly.com: Easy to Understand Medical Dictionary & Encyclopedia
WHAT CAN CAUSE THE LEVEL OF NEUTROPHILS TO BE TOO HIGH?
There are many possible causes for an abnormally high neutrophil count. A neutrophil level that is more than 8000 is considered to be abnormally high. One basic cause of a high neutrophil count is when a high level of stress is placed on the body. The stress can due to many factors such as nervousness, exercise, or seizures (involuntary muscle movements due to overexcitement of nerve cells in the brain). Another cause is a sudden infection from bacteria. Damage or inflammation of tissues can also lead to a high neutrophil count. Examples would be burn injuries and a heart attack.
Sudden kidney failure can cause a high neutrophil count. The kidneys are two organs located on each side of the spine, behind the stomach. The kidneys filter (remove) wastes from the blood. A condition known as ketoacidosis can also cause a high neutrophil count. Ketoacidosis is a condition in which acids and poisonous chemical substances known as ketones are produced by the body. Ketones are produced when the body has a difficult time breaking down fats.
Another cause of a high neutrophil count is eclampsia. Eclampsia is a rare, but serious complication of pregnancy characterized by an attack of convulsions (abnormal, severe, involuntary muscle movements) that are not caused by other conditions of the brain, such as bleeding in the brain, in a woman with moderate or severe (but not mild) preeclampsia. Preeclampsia is a severe condition that occurs in the 2nd half of pregnancy, which is characterized by a sudden onset of high blood pressure with edema (a type of swelling), and/or abnormal amounts of protein in the urine (pee).
A high neutrophil count can be caused by cancer spreading in the body. Cancer is a group of diseases in which symptoms are due to an abnormal and excessive growth of cells in one of the body organs or tissues. A cell is the smallest, most basic unit of life, that is capable of existing by itself.
Hemolytic anemia can cause a high neutrophil count. Hemolytic anemia is a condition in which the red blood cells are destroyed earlier than they should be. Red blood cells help carry oxygen to the blood. Another cause of a high neutrophil count is polycythemia vera. Polycythemia vera is a condition of unknown cause in which there is a long-term increase in red blood cells and other types of cells. Myeloid metaplasia can cause a high neutrophil count. Myeloid metaplasia is a condition in which bone marrow (a tissue that fills the openings of bones) grows in abnormal places in the body.Certain medications can also lead to a high neutrophil count. One such medication is corticosteroids. Corticosteroids are a group of drugs that act similarly to a natural chemical in the body known as corticosteroid hormone. Corticosteroid hormones control the body's use of nutrients and the amount of water and salts in the urine (pee). Another such medication that can raise the neutrophil count is lithium carbonate. Lithium carbonate is a type of salt that is used as a drug to reduces mania (an abnormal, overly excited state).

[onatreetop]

thank tons. I see the blood doc on tuesday to check for blood cell cancers. the steriod makes sence also. the mgs have been up and down every week. going to be a long weekend. o2 is helping tried to use it less ssince the temps are better and the humity. back on. the last two months the neut. has more than doubled.

[pberggren1]

I'm so sorry Tree. I wish I could take all your pain away. I so know what you mean about the panic. I sure hope you can get the rtx sooner and it helps you 100%.

[onatreetop]

Thank you........We all just take one day at a time. With the hope the the next is equal or better.Hard to look at myself. Not just moon face anymore.....more like moon body. My neck has seemed to disappear some how. Just hoping to keep my original parts as much as possible. had back and hip injections weds. that was fun and seems to have helped relieve the back but not the hip. There seems to be a question if is part of the back problem or the actual hip joint that needs replacing. Did findout that part of the bone at the top of the femur is dead. But the docs said it shouldnt cause pain. and of course now that the back pain is better I can feel other areas more like the foot and wornout knee.
Someone once told me that your body can only register one pain at a time.......myth busted on that one. Has anyone else had problems with there teeth? I seem to be braking mine. 6 so far 2 removed and 2 to go. hoping that 2 can be filled. Thinking about taking them all at this point and going for a fresh new set.
just get tired of all the doc appts. and cost of gas. its hard to spend more than you make, I was figuring out my week and i have 5 appts for monday and tuesday alone. had 5 last week and 4 the week before.
I just want to stop and breathe. I am hoping to get out and away for the long week end but am not sure I will be strong enough to keep up with the others going. They are all awear of my condition at the sametime i dont what to be treated differently. i have this horrible feeling that this could be my last chance to go on a trip with close old friends. we havent spent time together like we use too. Or camp or anything. Plus I have to fill the car with all of the o2 equipment on top of everything else. I tried to order thirty small tanks but the company wants me rent a portable condenser at 20 a day. cant do it. i am going to go as long as none of the docs decide to keep me in the hospital or something. Time to get out of this state and or state of mind.

[onatreetop]

Thank you........We all just take one day at a time. With the hope the the next is equal or better.Hard to look at myself. Not just moon face anymore.....more like moon body. My neck has seemed to disappear some how. Just hoping to keep my original parts as much as possible. had back and hip injections weds. that was fun and seems to have helped relieve the back but not the hip. There seems to be a question if is part of the back problem or the actual hip joint that needs replacing. Did findout that part of the bone at the top of the femur is dead. But the docs said it shouldnt cause pain. and of course now that the back pain is better I can feel other areas more like the foot and wornout knee.
Someone once told me that your body can only register one pain at a time.......myth busted on that one. Has anyone else had problems with there teeth? I seem to be braking mine. 6 so far 2 removed and 2 to go. hoping that 2 can be filled. Thinking about taking them all at this point and going for a fresh new set.
just get tired of all the doc appts. and cost of gas. its hard to spend more than you make, I was figuring out my week and i have 5 appts for monday and tuesday alone. had 5 last week and 4 the week before.
I just want to stop and breathe. I am hoping to get out and away for the long week end but am not sure I will be strong enough to keep up with the others going. They are all awear of my condition at the sametime i dont what to be treated differently. i have this horrible feeling that this could be my last chance to go on a trip with close old friends. we havent spent time together like we use too. Or camp or anything. Plus I have to fill the car with all of the o2 equipment on top of everything else. I tried to order thirty small tanks but the company wants me rent a portable condenser at 20 a day. cant do it. i am going to go as long as none of the docs decide to keep me in the hospital or something. Time to get out of this state and or state of mind.

[annekat]

Treetop, I'm so sorry you are going through such a rough time, much harder than what I'm going through and probably quite a few others on here, too. Talking about getting out and camping or something with friends sounds like a positive idea, though I know it wouldn't be easy to plan. I did notice your beautiful avatar picture and wondered where that is!

I've had some teeth removed in the back of my mouth within the last year, but I don't think it was from Wegener's; I had neglected my teeth by not visiting the dentist often enough and two wisdom teeth had rotted and the rot had spread to the neighboring molars. So four were extracted, including what was left of the wisdom teeth; one was impacted and the other had grown in. Both my dentist and oral surgeon are aware of what WG is and the issues involved and neither one thought it was the cause of the problem. But I don't doubt that WG can cause tooth problems, and I remember having pain and tenderness throughout my teeth and gums earlier in my WG journey.

[onatreetop]

Lake tahoe the California side. I have admired yours also, where is it? my teeth have been a problem since they started coming in as a small child. My mother had scarlet fever when she was prego with me. Was born with abnormal teeth and a third set. Sure could have used them now. I believe the steriods have something to do with it. If they can drain density why not teeth? my bottom wisdom where impacted but the top where not. Last extraction was about nine monthes ago. molar split all the way down it had to come out. this time it is a tooth that was made mostly of filling. The dentist would put a clap around the base that was still there and build it up with enough filling to make the tooth. Have had it built you 5 times in 20 years not a bad run i guess. then 3 more with what i hope will be fillings.

I magically got the rtx earlier last time. But the doc said if we do it again to soon the b cells may not be able to handle it until they are given the recoverytime needed. also no cytoxin for 6 monthes if they want to start that again.so..............in between a rock and a hard place.