Lupus Support Group

I've been in the hospital for the last 5 days. I went in with difficulty breathing. I thought it might be from the new med I was taking....Arava. Chest xray at 3 pm was clean, EKG normal. They decided to send me for a CT scan with contrast. That was clean too. At 7 they decided to send me home...I was getting dressed when I couldn't breathe. Blood pressure was sky high. Big crash followed. Follow up xray showed both my lungs full....congestive heart failure. So I ended up with a stay on the cardiac care floor after an evening in ICU.

So my rheumy was away at a conference so one of his partners was on call. She said the problem was not with the Arava. My PCP was not on call so I had his unknown partner managing my care. My cardiologist doesn't have priviledges at the hospital I was in so I used my husband's who was not on call so I saw another unknown doc. At least the pulmonologist had scoped me so his face was familiar. This actually worked...I'm not sure how.

So 5 days later still not a definitive answer to "what went on". There are 2 theories. The first was my husband's....I made a ham that week and had had several meals....too much salt. While polite no one believed this one. Second theory.....the CT tech injected the contrast too quickly causing an allergy-like reaction that filled my lungs. There seems to be consensus that this is "more likely than not".

So...what do I do about this "medical mistake"? Any ideas?

So I'm home and will spend the next few weeks with follow-up appointments and resting. Oh yes...my husband was so stressed by the whole thing he ended up with chest pains and made a trip to the ER. Doc will up his xanax. We could have shared a room

Never a dull moment.

my goodness heidi, it just never ends. i am so sorry that you have had to go through all this and your poor husband getting so worked up he had to go to the er. please try to get some rest and know that i am sending good thoughts your way! hugs! wendy

When I was in for CHF I was in a shelter. I have decided that it was the strain of living there that "caused" the CHF. In fact I was hospitalized twice for that while in the shelter. I am sure that when I am stressed, that is what brings on a massive flare for me. When I was living with my sister(another VERY bad time) I ended up in the hospitable 3 more times. And now, living on my own...not a thing is happening. So I am just chalking all of that as the result of stress caused flares. Just my thoughts.

Alison

Hi Heidi. I am sorry to hear you have such a tough time in hospital. Perhaps the CT contrast has caused the pulmonary oedema as a super rare adverse side-effect, like you have said. I remember the radiologists have made me sign a consent form to inject contrast before scans, where they inform adverse-effects as a possibility. Is this the time the doctors have discovered the CHF, or the CHF is there already and the pulmonary oedema has made it worse? Wow, my family would have a heart attack too if that happens to me. I'm so glad everything has ended well, despite the scare. Hope you will recover soon.

Marie

Heidi,

That is just awful, I'm so sorry you had to go through all that. Thank goodness you are all through that mess. Still makes you wonder what really happened? where is Dr House when we need him. I hope you are feeling much better and get lots of rest.

Take Care,

Amy

Goodness Heidi....so sorry to hear that you ended up in the hospital....it could have been the dye......please let us know what your doc has to say about this I am curious......also sorry to hear that your husband was so worried and stressed that he ended up there too....I guess you two could have shared a room.

Eva

I had a real low energy day today....spent it on the couch with crappy tv. A friend brought dinner which was nice. I have my follow up with the pulmonologist on Monday and cardiologist on Thursday. Hopefully after thinking about it for a few days someone might figure out what was wrong with me.`

Crappy TV is so much worse when you feel bad. It is nice that a friend brought dinner to you. I'm sorry to hear that you are still feeling bad, I hope that you feel better. Also hope that your doctors figure out what is going on!!

Take Care,

Amy

Thinking of you Heidi....hoping the docs get this straightened out soon. I hope the shows on the TV is better today.

Eva

Rheumy called this evening...he is engaged and will talk with docs before my appointments next week. He eventually wants to try the Arava again when I'm over the effects of the trauma...he's convinvced it wasn't the problem. He also would like to know what was wrong with me that sent me to the ER....that got forgotten when I crashed.

I asked for a prescription for OT for my hand that never got better. It really hurts and movement is limited. I don't expect much from the OT but the stretching and massage will feel good.