Mom is in the hospital

[Amanda From OZ]

Hope she is all better soon.

 

[ODAT]

Not even sure where to start... Mom is having an allergic reaction and the doctors are freakin stumped. Duh! She had a cypher stent put in around 8am Friday morning. Talking to my sister-in-law tonight - (she didn't know until tonight) She tells me there is a class action suit against this drug-coated (meant to prevent infection and reclogging) stent. When we were told she would need a stent, ok, we didn't ask what kind, just took for granted it would be safe.

So yesterday I was there from 10 to noon. I noticed actually when I was leaving - mom was sitting up and her gown open in the back - that her back was pink. I thought 'great her color is coming back.' My sister got there a few hours later and she by that time was bright red! Her chest, scalp, wrists, between her fingers, feet, round spots on her stomach and one on her thigh, swollen hands and feet. complained of itching -they gave her benadryl. I come in to day - first one there at 9:30 and she is getting worse! I ask the nurse what is it? She doesn't know. Says she'll send the PA in as soon as she is available.

I get the books out and read them over again and see that allergic reaction is in the cypher book. When the nurse comes back in I tell her that it says in the book it could be from the stent. She says Oh. PA comes in and kind of gets smart with me. I ask her what is this from, she says I don't know I haven't looked at her yet. I feel like saying you don't have to look at her to know what it's from!!! They ask her if she bumped her left inside heel because to me it looks ulcerated. It's hard to describe, but it is not black and blue !! That is what happens when you bump something. It looks like blood is pooling under the skin. Just looks bad. I show the PA that mom also has the same discoloration on her wrists. Ok, did she bump that too!!?!?

It's very hard not to be with her tonight. They don't know what is causing it. They say it could be Plavix, but she HAS to take that to prevent clotting. They are considering switching her to one that is less effective. Ok, so I tell the PA, 'they're not doing the second stent until this is cleared.' she said 'oh, no.' If they clear this up, she has the second stent put in, reaction happens again, oh good now we know it's the stent. BULLSHIT! sorry. I don't want them to put another one in that will cause such issues.

I was reading some of the stories from people who had a hard time with cypher and a lot of it is that they experience arthritis symptoms, chest pain, arm pain, and itchiness. I feel so helpless. I just pray that she clears up. They started her on pill form benadryl, but the PA switched it to iv form. Also added steroids iv form. (mom isn't on any iv's but has a line they put it in through).

Another thing is she was on oxygen the whole time she's been there. They took it off Friday night and by 4pm today, the nurse checking her oxygen said she would talk to mom's nurse and see if they should put it on again. It was 89%. So mom says, I did just come back from the bathroom. Nurse says oh that's probably why. I said 'Mom, you went 20 minutes ago!' WTF first the nitro issue when I said 'her bp seems high (179/84) and the nurse told me 'oh, it's because we moved her around from bed to bed.' Then she comes back 4 min later with nitro pills!

I feel like the only good doctor I have is DR. freakin GOOGLE! Her pcp came in, I asked him a lot of questions. A nurses' aid came in to check her blood sugar which went up to 400 due to the steriods - and she said that even her pcp didn't have a clue what the redness was from. Oh...they are going to have a dermotologist look at her tomorrow and the cardio doc that did the stent. What the heck is a derm gonna figure out?!

I am really frustrated. Time to try and sleep. I will let keep you posted on how things are going. take care everyone - seems like we have to and really do know more than the docs sometimes. I asked pcp creatine level and he read the chart and said it was 3. I should have asked him when was the last time it was checked. I was there all day, then my sis, then my brother, no one drew any blood or took urine samples.

[okarol]

Wow, what a nightmare. Is anyone staying with your mom during the night? We kept a log when my mom was in the hospital, sisters and I tag teamed and wrote down every single thing - it was the only way we could prove what was going on. Your DR.GOOGLE comment did make me laugh though. Isn't it amazing that you come in with info and questions and they just want to shrug off your concerns?? ODAT - don't forget what ODAT means - try to take care of yourself so you will be useful to help your mom. Wish I had some answers. Seems like that allergy should get straightened out right away. Good luck to your mom and family.

[letaek]

Dr Google is the best doctor. I had to fight for them to do an angiogram on my father as well as an echo cardiogram-all the while his chest pain was an 8 out of 10
and the lazy cardiologist just says-There isnt much I can do. I had the nurse call him and I told him I as the patients daughter do not want to hear I can't do much I want to hear you will do all possible and necessary.

Crossing my fingers!!!!!

Keep bugging them about the stent-Take care and HUGS

[ODAT]

Wow, what a nightmare. Is anyone staying with your mom during the night? We kept a log when my mom was in the hospital, sisters and I tag teamed and wrote down every single thing - it was the only way we could prove what was going on. Your DR.GOOGLE comment did make me laugh though. Isn't it amazing that you come in with info and questions and they just want to shrug off your concerns?? ODAT - don't forget what ODAT means - try to take care of yourself so you will be useful to help your mom. Wish I had some answers. Seems like that allergy should get straightened out right away. Good luck to your mom and family.

Believe me I wanted to. It's going to be hard enough going to work this morning. Have to let the 'tag team' work though (lol) Cathy is going this morning and if she thinks I should be there she'll let me know. I will post later today. thanks for all the support, it really helps!
Kim

[ODAT]

Mom still is very red and swollen.  She is not in any pain or itching. Still on steroids and benadryl if she asks for it. On fluid iv and oxygen. No one is saying what the cause is yet or what exactly is happening in her body. I don't know what happens with an allergic reaction. I research and all's it says is that you can have one - doesn't describe it.

The hospital's kidney doctor came in when Cathy was there. Told them that mom's creatine level went from 3.3 to 3.8 after the stent. If she has the stent for the kidney artery (70% blocked), there will be more damage to the kidney from the dye. I wasn't there or would have asked 'any idea of how much more?' So, doc said it would be 'elective' surgery because my mother has to make the decision (ultimately anyway or so we thought).

Got to go back to the hospital. She'll be there a few more days.

Anyone had any adverse reactions to Plavix?

[goofynina]

Thinking of you and your Mom, ODAT,  Sending good thoughts and prayers your way 

[ODAT]

My mom is still in the hospital. The severe allergic reaction they still don't know! It could be the dye (which has damaged her kidney further and put dialysis closer - within a few months), new med Plavix (which they can't switch because it's the best one to prevent clotting), or the drugs that are on the stent (which they can't take out). They are treating the allergic reaction with steroids (which raise her blood sugar to over 500) but they are monitoring her very closely. Trying to get everything under control.

I got to the hospital at noon and mom was upset. She told me a kidney doctor (one associated with the office she goes to) basically told her she would be going to surgery tomorrow to get a fistula for dialysis. Mom said he had just left so I went right out and saw the PA told her I wanted him to come back. He did and even though he still talked in circles, said that she was not going down for surgery and that the vascular surgeon would come in and see her. I don't think they know what's really going to happen.

In my naivety I was focusing on the creatine level. She is now at 4.9. The doc told me her GRF was on the low side of 15 - 20%. I asked him if when it would stabilize or get better and he didn't have an answer. Mom has those big boots on her feet so she doesn't irritate them more. The redness is still as much as the first day and the swelling has only gone down a bit. She has her left ankle wrapped because it is now broken open. They put a red circle on her door, which when my dad had it meant DNR. We called the nurse in and she said it meant 'skin condition.' Cath asked her if a derm would be called in. Of course, didn't know.

I am so sick of them not knowing. I've done enough research to see that the cypher stent has had hypersensitivity reactions to it where it could be from the drugs or the polymer coating. Are they just afraid to admit it? I asked the nurse, if it is the Plavix that caused this, when she goes home she will still be on it. She said that's why they won't let her go home until this is cleared up. So I said ' you're saying that this could only be an initial reaction to Plavix and she'll be okay staying on it without this recurring?' She said yes. I don't believe this.

I'm not sure if I mentioned that the stent for the kidney was put on the back burner. Especially after I read that article that okarol posted. The kidney doc said that the dye would definitely damage the kidney too much.

I've got to go to bed. I am a basketcase. I can't imagine how my mom feels. It seems like everything has escalated. There was no way around needing a stent, just wish we were told this may happen and had a choice of stents, though I doubt they will admit it is that. Don't want to miss around with any lawsuits or the FDA...

(edited to spell check... lol - thought I spelt 'naivety' wrong and found everything else but!)

We are trying to maintain sanity with humor. Cathy told me not to tell anyone, but I can't help it. She was calling me on her cell from the hospital bathroom (nurse told me to not to use cell today - when I first got there I was so pissed that mom was upset I went to call Cath) so she says 'ok you're gonna hear a flush.' then she says real excitedly (I don't think she thought she flushed it...) "where's my cell?! where's my cell?! oh...I'm talking on it." I laughed so hard. Today I went to the mailroom to buy a stamp to mail those lovely bills, halfway there I realized I had the money but not the bill! Sleep is good. 

[letaek]

Ugh-the doctors won't admit to the stent being the issue. I am praying for your mom! She will get through this-hugs to you and your mom you guys are in my prayers!

[ODAT]

Ugh-the doctors won't admit to the stent being the issue. I am praying for your mom! She will get through this-hugs to you and your mom you guys are in my prayers!

You got that right! I tried to research allergic reactions, plavix reactions, even cypher stent info. I just get that you can have one it doesn't describe what happens. I don't know who in the IHD community have had this type of stent placed, but if there's anyone out there that can let me know if you or your loved one dealt with adverse reactions that would be helpful. I just don't see how they can be plowing her with steriods when her kidneys are not filtering it. That's got to have some impact right?

thank you all for your prayers

[Sluff]

You need to get another opinion if you think it is the stent causing the problems usually the patient is right. I know it's your Mom and not you but if your instincts tell you it's the stent then it probably is. Ask for another opinion, it is your right. It is your Moms life they are messing with Get to the bottom of it by any means possible. Good Luck I know this is hard on you too.

[ODAT]

You need to get another opinion if you think it is the stent causing the problems usually the patient is right. I know it's your Mom and not you but if your instincts tell you it's the stent then it probably is. Ask for another opinion, it is your right. It is your Moms life they are messing with Get to the bottom of it by any means possible. Good Luck I know this is hard on you too.

I will talk to my sister today about this, but when I first read it I thought 'how do you get another opinion from the same hospital?' I don't understand why they can't explain what they've seen in the past. Exactly what is the reaction most known to happen if it's the 1. dye, 2. stent (drugs or polymer), 3. plavix. All's we hear is 'it's not an exact science - all's we can do is to clear this up. She isn't in any pain, not itching, and it's not anaplaletic.' I can't even go up until almost 5pm today. I think Cathy will be up around 9:30am and she sent a fax to mom's primary and told him all the issues and that we are not happy with the answers.

[Sluff]

You need to get another opinion if you think it is the stent causing the problems usually the patient is right. I know it's your Mom and not you but if your instincts tell you it's the stent then it probably is. Ask for another opinion, it is your right. It is your Moms life they are messing with Get to the bottom of it by any means possible. Good Luck I know this is hard on you too.

I will talk to my sister today about this, but when I first read it I thought 'how do you get another opinion from the same hospital?' I don't understand why they can't explain what they've seen in the past. Exactly what is the reaction most known to happen if it's the 1. dye, 2. stent (drugs or polymer), 3. plavix. All's we hear is 'it's not an exact science - all's we can do is to clear this up. She isn't in any pain, not itching, and it's not anaplaletic.' I can't even go up until almost 5pm today. I think Cathy will be up around 9:30am and she sent a fax to mom's primary and told him all the issues and that we are not happy with the answers.

Good job keep on them Odat. It's ok if we are wrong we are not Doctors, but the one thing that the Doctors don't think about while they are guessing, is the emotional impact on the patient and the family.

[okarol]

Hi ODAT-
The scientific method to narrowing down the possible causes of the problem would be to change one thing at a time and see if it makes a difference. If that change didn't improve her symptom, change another thing, and wait for results. The hardest thing to change sounds like the stent. But if you can rule out the other 2 things then a reasonable doctor may agree that the stent must be dealt with. If it were me I would ask what she can be given instead of Plavix (I think aspirin is sometimes used.) - a rash and increased creatinine are POSSIBLE side affects of Plavix - also read about drug interactions http://www.rxlist.com/cgi/generic/clopidog_ad.htm - that might be happening as well. If it doesn't change any symptom, then try something else. I get nervous when they start adding more meds and really don't approach the situation methodically. I hope things improve!

[Joe Paul]

Sorry to hear your mom is still having so much trouble, hope they figure it out soon