Here I go again

Evening Everybody:

Sorry a vent is coming on but I can only come and talk with you all. Well I saw my internal medicine doctor today. I had to see a back up doctor instead of my normal PCM. I've had the worst day, and my body is causing issues once again.

As some of you know I was in the hospital in August and while there the doctors found I had a 2cm blood clot in my IVC. Well I had to stop my hormone replacements and start taking coumadin daily for a minimum of 6 months. Last Tuesday I fell down and scratched up my elbows. It seemed like the world tilted and my legs wouldn't hold me up. Well, today I had a follow up for the blood clot. When the nurse called my name to go back into the office, I stood up and my world tilted again and I fell in front everyone in the clinic.

The resident that I was seeing was worried that I had a bleed in the brain. Apparently, my blood could be to thin and it can cause bleeding in the brain. So I had to have a stat CT scan, which thank God, showed no bleed. He ordered a lab test to see how my PPT/INR was. He let me leave and come home. By the time I arrived home the doctor had called. My INR is 4.7, my goal range is between 2-3, so I'm to high. The fact that I'm falling, and have blood in my urine is worrisome for the doctor. He spoke with Bill and told him if I were to fall again and hit my head I could possibly bleed to death. I've got to have either Bill or Nikita hold onto me while I walk anywhere. I can't cut anything and I have to be dependent on my family for everything this weekend. When I'm like this I just hate my life, I hate having to ask Bill to walk me to the toilet everytime I need to go. My labs were out of whack besides the INR. My WBC is up but he said it could be related to the blood clot. I had a temp of 101.2 at 2:30 this afternoon. He's not sure whats happening with my body but that there's something there.

Needless to say, I'm depressed, I can't walk 300 feet w/o getting short of breath. Now my blood is to thin and ie've got to be extra careful with things that I do. I'm just so so sick of this all. Why can't I be normal, what in the heck did I do to deserve all this crap. I'm so ready to either pass on to another place, or to have my bone marrow transplant. I'm tired of feeling sick, tired, exhausted, swollen joints, rashes of my face, sores in my mouth, my labs being off, and needing blood transfusions. So I know I need to be seen on Monday in the coumadin clinic, if I don't end up in the hospital over the weekend. I had to promise the doctor that I'd go to ER if I started bleeding anywhere or have a headache or lots of blood in my stool or urine. Or if my temp gets worse, or any other symptoms. I'm sick of this I want a different body, I just want to know why I'm the way I am. I don't know if I can suck this up and just deal with it. Sorry to be such a bummer. I just know you all understand whats happening with me and how bad the depression can be. Thanks for being there for me and I appreciate you all and I'll try to follow the directions of my doctor. Hope you all have a good weekend. I'll talk with you all again soon.

Love,
Barb

Barb, I am so sorry that you are having a bad time. My heart go's out to you...try and rest

Prayers always

Hi, Barb. I'm SO sorry you're now experiencing this on top of everything else you just came through. I don't understand why any of us have to struggle with this stupid disease and all of the health problems we are dealt. All I do know is, that from the little I've read here on this forum you are loved by many friends right here. I know your family loves you and will support you. Just try to rest and relax. I know how very hard it is to be totally dependent on someone else for everything. I'll keep you in my prayers for extra strength! Take care,

Barb, I feel so bad for you and I have no idea why you are having to endure all of this. You certainly did NOT do anything to deserve any of this. You are a wonderful and loving person who doesn't deserve to go through all of these difficult things. I am worried about how serious things have gotten for you and about how careful you have to be. You would think that with all of the medical advances that have been made, they could better figure out what is going on. We are always here for you whenever you need us. We care about you and want to be here for you. You are very loved. Love, hugs, and prayers

Barbara Lee,
God Bless your precious heart. I feel so deeply for your situation. I sit and stare at the monitor, without words. There are many things I would say, but I do not want to cause trouble on the forum by speaking too much of our Faith.

Right now you can only pass time. Two years ago I had to rely on my husband for EVERYTHING. I could not get to the bathroom, could not take a bath, wash my hair, make meals, could barely feed myself because I was so weak. I HATED it. And then I would get such violent episodes of vertigo, that I could not even sit on the toilet without aid. It was a horrible time. My husband wasn't the most loving creature in the world about it all either. He did it, but I could tell it was a burden.

So while I haven't been exactly where you are at, I have some idea.


Remember that its OK to feel depressed. Its OK to feel angry. Its OK to feel guilty. Its OK to mourn for what we are not and what has been taken from us. These things are ALL normal and ok, and the only way throgh. I am so happy that you can come here to vent. Come here and scream and rage. Get mad, cry, yell, moan. We are here for you. To listen, to hold your hand, to wipe your tears, and to pray incessantly for you.

Imagine how strong you are! Eleanor Roosevelt said "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along."

And you can. You have come through so much already.

You have strength in you, you have voice and influence. And if your anything like me, right now your saying... I DONT want to hear this crap, I just want to be well! I know.

Love and Hugs,
Darlene

Hi Barbara Lee,

I am so sorry you are having such a rough time. I do know that you are a very special person and dearly loved by all. I am glad you are able to vent to us, everyone needs that outlet and we understand. Please rest the remainder of the weekend, and I hope things are a little better tomorrow.

Sending gentle hugs your way...

Sandy

Barb--
I'm so sorry about the coumadin affecting you like this. Did they change the dose? What about involving, maybe, a second opinion on the treatment of the clot. Is there a reason why they didn't feel they could take care of it surgically while it was in a sort of safe area? I know you have great docs, but even they get burned out sometimes. I just wish they could have come up with something better, but I'm not a doc and you are so complicated medically. It just seems that coumadin and your current blood problem woudln't be a good mix, since you have some abnormal blood cells anyway, I think (is that right?) and then to thin it out more would leave you fewer working blood cells. When I got too much thyroid medicine my blood got real thin and I kept falling over and was real dizzy and had trouble walking, not as bad as yours, but they ran a couple bags of Iv solution through me to get out the excess medicine then lowered the dose. I just feel like sending you home with such a risk of falling. Maybe you should go to the ER if you keep feeling so bad and they don't fix it, I mean fix it. I know the last thing you want to do is p*** off your docs, but maybe a second evaluation on this if possible would be good. I just feel like they are sort of throwing up their hands, which is ridiculous, and I hope that's not the case. I just want you to be better and you don't need this added, really scary horrible debilitating problem when you are finally home. Well I will pray for you and your family through this rough time and I really think that there may be a way they can treat you better without giving you more meds other than the coumadin, at least I wish that for you. They also need to take into account that you may need a lower dose due to liver and kidney damage or other problems-- a lot of docs do not even bother to think, they just prescribe what they always give everyone and we are not all alike. And maybe one of your other meds is making it too strong, unless they want you like this, very prone to bleeding. Have you checked to see if any of your other meds is making the coumadin too strong? The pharmacy knows all that.

And on the bone marrow transplant, I know two people who had that and were terminally ill at the same time with very acute hepatitis C and probably other stuff and made it through fine and went into total remission on their cancer. Their odds weren't good either, but the docs always cover their butts, so giving you over 50/50 is good. My stepmom, who has multiple myeloma had a stem cell transplant and she is doing great, she has a portacath too but hasn't had any problems. She urges everyone to go to a place that is state of the art in cancer, to go to good cancer treatment centers-- they help, and to go to a medical center that not only knows about cancer but can really treat it and all the rest of your conditions. It sounds like you are at best they have, so that wouldn't be an issue. She said they do so many stem cell transplants it was like an assembly line, so she wasn't scared, she was amazed. Well, sending good thoughts and wishes your way and I know you can get through this because you've got to be tough as nails by now. It's like you're on the front line in a war but with your own body. I really wish you could get a break.

Hi Barb
I am so sorry to hear that you are sick again. As others had said, it is normal to feel depressed and the emotions you have right now. I would be too if I were you. I hope your hard time will be over soon, and that the docs can figure out something to help.