Easter in the hospital

[Kathie28]

Hi everyone
It seems I am spending Easter in the hospital this year. Mt doc sent me for tests yesterday because I was
having chest tightnes and shortness of breath and I have developed blood clots in the lungs. Last night
they had me in icu but finally got moved out. I am actually feeling pretty good now but I guess they have to
monitor you closely. I had no idea what I had. I thought it was a chest cold. They found one in my leg too so they think that may be the point of origin. I wonder if I should have noticed something Earlier? I am pretty bummed to miss Easter with my baby but glad they found it too, if my doctor had not been calling me about something else i had not even planned to mention it. I guess the lesson is it pays to check everything odd out. HAPPY EASTER TO YOU ALL,

[pberggren1]

I'm sorry to hear this Kathie. But like you said at least it is caught now instead of later. One can never be too vigilent with Wegs. As soon as a syptom like that pops up I go for chest x-ray right away.

[drz]

Sorry to hear the bad news but it is great that you will be in a safer setting in case services are needed. Hope the treatment is effective and the stay short.

[DEE]

Kathie
Sorry to hear your news the same thing happened to me April 19th last year. In just the same way.
I was in hospital for seven days once the new meds started to work I was allowed home.
Please take care of you good luck for your recovery :hug1:

[Hammy8241]

Glad you caught it in time - watch out for the Easter Bunny as I hear they always visit hospitals and force candy down peoples throats !:biggrin1:

[chrisTIn@]

I am actually feeling pretty good now but I guess they have to
monitor you closely.

Happy Easter to you too Kathie!
It 's good that they monitor you closely.
Still I hope for you that you soon will be home again!

[Sangye]

Kathie, I'm so sorry but definitely glad they caught it quickly. I had tons of lung and leg clots form within 3 days of starting treatment. It's scary. (My lungs were massively hemorrhaging at the time so it was way scary!)

Once you get settled on coumadin/warfarin you won't have any trouble. It's a pain in the beginning but it gets easier.

Also, I suggest you don't let them put filters in your veins to catch future clots-- not a good idea with vasculitis. They cannot be removed. I'm glad that even though my first pulmy wasn't a Wegs specialist he knew better than to put filters in me. I even got repeat clots a couple months later and he still said not to do filters.

[Kathie28]

Thanks for the good wishes everyone. They actually decided to let me go home today which was nice to spend a little of Easter with the family. I started Hepranin shots and the Coumadin so hopefully all will be well. For the those of you that have dealt with the blood clots do you usually stay on the medicine forever?
I got the feeling that was a possiblility from the way they were talking to me at the hospital.

[Kathie28]

Kathie, I'm so sorry but definitely glad they caught it quickly. I had tons of lung and leg clots form within 3 days of starting treatment. It's scary. (My lungs were massively hemorrhaging at the time so it was way scary!)

Once you get settled on coumadin/warfarin you won't have any trouble. It's a pain in the beginning but it gets easier.

Also, I suggest you don't let them put filters in your veins to catch future clots-- not a good idea with vasculitis. They cannot be removed. I'm glad that even though my first pulmy wasn't a Wegs specialist he knew better than to put filters in me. I even got repeat clots a couple months later and he still said not to do filters.

Thanks for the info Sangye, fortunatly they didn't suggest doing filters. How scarey to have the hemoraging with the clots. The only time I was coughing up blood was right before I was diagnosed and that was a very scarey experience. I'm so glad that didn't occur this time. I feel really nervous about more clots popping up in the future.

[jola57]

Kathie i'm glad you had at least a day with your family at Easter.

[manalolana]

Happy Easter Katie! Glad to hear that your doctors are paying close attention. Happy you are feeling good!

[DEE]

Thanks for the good wishes everyone. They actually decided to let me go home today which was nice to spend a little of Easter with the family. I started Hepranin shots and the Coumadin so hopefully all will be well. For the those of you that have dealt with the blood clots do you usually stay on the medicine forever?
I got the feeling that was a possiblility from the way they were talking to me at the hospital.
Hi Kathie I had multiple clots in my right lung and had Warfarin for about eight months , as my wg consult did not want me to stay on ity longer than needed
Try to get some rest and be careful about lifting for awhile DEEx

[Sangye]

Kathie, you may have to be on coumadin for life. The only specialist who can make that assessment properly is a hematologist. Because of the severity of my clots (they were "uncountable") none of the hematologists I saw early on wanted to make the call. I was on coumadin for a few months but got new clots and then was on Lovenox (the shots) for a miserable 2 years. I saw the chief of hematology at JHU, who put me back on coumadin and said I had to stay on it for life. For me there were 3 factors in that decision:
1) Wegs--causes you to be 23% more likely to get clots
2) I had lung clots. If you have a clot travel from the legs it's considered almost like a different disease. It means you are much more likely to have leg clots and especially lung clots again.
3) When you have clots they do a routine blood panel to check if you have any genetic clotting disorders. I have a partial mutation of one clotting factor. Just by itself it makes me only very slightly more likely to get clots and would never be a problem alone. But with the above 2 factors it matters.

Dr Seo was against me staying on coumadin, but as much as I fought the JHU hematologist over it he was right, especially considering that at the ttime I had active Wegs and we didn't know it. And I've had increased disease--even hemorrhaging lungs-- and we didn't know it. Wegs is too sneaky in me. I feel safer on coumadin and it's the least damaging of my drugs.

[Brooke]

How scary, I'm glad you are feeling better!

[gwenllian111]

Hi Kathie - glad you're back home now!

What were your symptoms before being admitted - shortness of breath? Did you have a cough too?

Gwen x

[Kathie28]

It is definately good to be home. I actually felt like I was coming down with a chest cold. My chest ached and I was having shortness of breath. The week before I had a terrible cough but it actually had improved though I was still coughing a little.

[Kathie28]

Thanks for the info Sangye. Well I know I have condition 1 and 2. I just don't know aobut number 3. Apparently I have a clot in my leg that has been breaking off in pieces and then traveling to the lungs. I can't imagine having to take those shots for 2 years, how miserable!! I'm glad the coumadin is working for you now. It's hard to believe only a year ago I seemingly had no real health problems.

[Sangye]

Oh yeah, the Lovenox shots were sheer hell. They hurt much less if someone else gives it to you (no idea why that is) so doing them myself was a major deal. Twice a day. And every single time it was incredibly difficult. I had to psych myself into it and had many panic attacks. Whenever I was in the hospital my only consolation was that the nurse would have to do it. LOL

Is your abdomen is already bruised from them? Mine would get so covered in bruises and hard painful knots that there was no available spot for injection. I'd have to inject it into the hard nodules. I still have several of the nodules and they're still painful, even though I went off it 2.5 years ago! Vile drug! :thumbdn:

[gwenllian111]

How were the clots detected, chest x ray?

[Sangye]

They can only see vague signs of clots on x-ray. Even a regular chest CT will miss them, even if done with regular contrast. They need to do a CT with contrast dye injected at high speed--called a pulmonary angiogram or a "PE protocol." (PE means pulmonary embolism)

Once they found the lung clots via special CT, they did a chest x-ray every day for a week and another one or two PE CTs that week to make sure they were responding to treatment.

[Jack]

I am on Warfarin for life too. I was on it for six months following a DVT in my leg, but then suffered a PE in my left lung less than a year later. I don't want to risk getting another. Far too dangerous!

[Kathie28]

The very first shot gave me a nasty bruise. I feel so glamerous between the new pred stretch marks and now the lovely bruises. My husband has been kind enough to give me the shots. I am a complete wuz when it comes to needles.