Pericardial effusion

[JodyC]

I went for my pre-op yesterday to Motts Childrens Hospital in Michigan. Did the usual tests, started out with a PFT then had a chest x-ray, and then I went to get an echo. That was just about the longest echo in history. I thought jeez this is taking forever. It wasn't super comfortable lying there either because it is harder to breathe lying down and she was pushing that gel coated ultrasound thing down on my chest which is still plenty sore from my surgery a few weeks ago. She finally got done and said she would be right back. 20 minutes go by. Waiting. She comes in again and says she needs more pictures. Well, I thought, at least he is being much more thorough than my last surgeon so I should just be patient. More pictures are taken of the bottom of my heart and she leaves and someone else comes in to take my EKG. Then I wait another 20 minutes because someone else wanted to see the echo before I got dressed. Finally I am told to get dressed and a doctor wanted to go over my echo in an exam room. I go back to where my mom and best friend are waiting and we go into an exam room and wait another 30 minutes for the doctor to come in. He says he has some bad news and that I had developed a bad pericardial effusion and that I had so much fluid around my heart that the top of my heart was collapsing in on itself. They also noticed that the stenosis is really extensive and is even on the mitral valve a little bit. The surgery is going to be much more difficult to get the aortic valve out with out damaging the mitral valve. Well, I have had a tough month and that was about the limit for me and I just sat there and cried. My mom and my friend were upset because they feel and I can tell you the doctors and Michigan concur with us but they can't say too much, that this is a result of being abandoned by my first surgeon once he couldn't do the procedure. They did say that they have never in the history of surgeries at MSU opened someone up, closed them, and sent them home.
I was then told my situation was an critical and I would have to go in for a surgical procedure to remove the fluid. They would take a small cath needle and go into my chest until they reached the fluid without touching the heart. Sometimes this can be tricky but in my case there was so much fluid the chance of touching the heart was less than 1%. A nurse took me to a waiting area and another nurse took me out again and I went to a recovery area away from the little kids where it would be quieter so they could go over more information. Well, I don't know what went on but we sat there for 2 hours. A very nice nurse tried to figure out why the Anesthesiologist and lab hadn't come up yet. After about an hour and a half my name is paged over the whole hospital that I needed to call securtiy at #####. My nurse was flipping out. She calls for me well evidently they have been waiting for me in surgery for an hour and no one knew where I was at. What??? Then the phone in the area I am in rings and I hear the nurse arguing with whoever it was and getting very angry. She then says the women on the phone needs to speak to me. I am in a gown and a blanket so I shuffle down the room to the phone and this women YELLS AT ME!!! Where have I been??? Why did I not do as I was told and go to the lab. They have been waiting. I could not believe this. I went from crying to pissed off. I told her a nurse had came to the waiting room and brought me here. "And just where is HERE?" she asks me. I said well since I don't work here and didn't just walk myself up here and sit down and type my own info into the computer maybe she should ask the nurse who was with me. She just keeps going on about how I didn't do what I was supposed to. I just set the phone down and said that was it, I was leaving. Well then all hell broke loose and there were people everywhere. Nurses yelling and carrying on. The nurse who was getting in trouble the most was the only nurse who was ever nice to me that whole time. My friend wrote everything down, names, times, etc. I told the nice nurse that I was sorry she was getting yelled at for things that were not her fault. Finally, the anthesisologist and the surgeon along with some head of cardiology came up to talk to me and apologize and beg me to stay and let them do the procedure so I could make it to my surgery on Monday. They were very nice, said nothing like that has ever happened before and that no one should have spoken to me that way and they would handle it personally. After much discussion I agreed to the procedure. I was given something to relax because the tears were really rolling by this time and they took me to surgery. I had 300cc of fluid removed using two different entry points an woke up in recovery. I was evidently kept awake and talking because it was too dangerous to knock me out with that much fluid but I don't remember any of it. There was talk of keeping me over night but they said I did so well that I could go home. We left the hospital about 9:30 that night and I was all groggy on valium. Came home, threw up, and went to sleep. They said I would hurt pretty bad this morning and I do. But my heart is sooooooo quiet. I don't even see my pulse in my eyes anymore. I can breathe but it just hurts alot right now. I am still set for surgery monday and that Dr. Bove was made aware of everything that happened and would have a plan to fix my heart and I shouldn't worry.
So theres my re-cap of yesterday. Sorry it is so long but I feel much better having vented to everyone.

 

[Nancy]

You have been through a terrible time. I am so sorry this had to happen to you.

Since you have already put all this down in writing so very nicely for all of us, I would like to suggest that you print this out with several copies. Give one to your surgeon, send one to the hospital administrator and one to the hospital's social work dept. (they handle difficult situations that patients have in the hospital). You can also send a copy to the nurse manager of the nasty nurse.

This hospital needs to know how some of their personnel interact with patients.

Their attitudes are absolutely abominable to say the least!

That nurse that "went off" on you needs to be censured. And the hospital needs to know what is going on with their troops.

 

[Duff Man]

Jody, this sounds like a nightmare. I have a consult with a surgeon at UofM this friday so I'm hoping this was a fluke for both of us. I'm glad the draining procedure went well though.

 

[Arlyss]

I am horrified in reading this for so many reasons. With something so complex happening on the inside, it is unthinkable that medical personnel would treat someone like this.

I have a book on the history of heart surgery, and it contains the story of a 12 year old girl who was the first to have a certain open heart procedure in 1923 in Boston. (This was long before the heart lung machine and modern cardiac procedures.) The original paper shows pictures of her, before and after surgery, with the incision and sutures down her sternum. It is a special look into the early days - an attempt to repair mitral valve stenosis. The reason I mention it here is because of what it says about her care: ". . .the child responded well to digitalis and oxygen therapy, and was greatly helped and comforted by her faith in and affection for her nurses, on whom the chief burden fell." The authors, Dr. Cutler and Dr. Levine, thought this important enough to include in their scientific paper.

There is so much technology today, but where is the compassionate care? I am horrified at what happened to you.

I am sure that the surgeon's hands are both skilled and compassionate and you will have a wonderful surgery on Monday. I will be thinking all good things for you.

Arlyss

 

[WayneGM]

Sorry to hear about your experience. I too had a pericardial effusion episode so I know how awful it can be. However, I was fortunate to have a good experience at the hospital. I echo Nancy's suggestion.

 

[Phyllis]

What a nightmare this has been for you! Please follow up on Nancy's suggestion and document the entire experience. Hope you feel better and have some peace this weekend and all our prayers will be with you on Monday.

 

[hall]

Another vote for Nancy's suggestion! That is awful. I will be rooting for you on Monday and keeping yu in my prayers

Deb

 

[marie]

How awful for you. I echo Nancy's suggestions. The whole hospital and staff needs to know how you were treated and certainly need to be re trained from scratch IMHO.

I just know things will go well on your surgery. Keep us posted
Earline

 

[Debster]

I am so sorry Jody-how unbelieveably hideous that must have been...Nancy has a great idea...prayers coming your way...Deb

 

[JodyC]

thanks

thanks

Thanks for all replies. The surgeons were very upset and they took the time to come to my room. I know they were also very embarrased that it happened. My friend Brit is going to call patient services and report the incident just to be sure.

AaronJ-- Don't let my experience put you off of UofM. It was one or two people that screwed up. The surgeons are fantastic and you would be in good hands. I was in Motts childrens hospital too because my condition is normally only found in children. You will most likely be in the new cardio building which is supposed to be top notch. You can take a virtual tour on their website if you want to check it out. Good luck with your appointment, I hope to be checking out that day or saturday. Take care.

 

[AquaJeff]

Dear Jody,
I am so sorry for all you've been through. Another vote for Nancy's idea. That nurse needs to be straightened out. Actually, she needs a new line of work. Leopards don't change their spots but maybe she'll get a good smack down from the surgeons that she learns to shut her mouth.
Thank God for the nice nurse though. It seems that not only was she nice to you but she stood up for you and was your advocate.
Make sure your friend sends a copy to the nice nurse too.
Good Luck and I think you'll do well. You've had enough bad already. You deserve a break

 

[dtread]

Jody, you've really had some bad breaks. Hope your surgery on Monday is successful and things turn around for you. You sure deserve better times after what you've been through. Here's a beautiful little song that might give you some comfort: http://www.youtube.com/watch?v=-vlrn7mVqrw

 

[ruth]

Oh Jody - I'm so sorry for what you've been through. ((Hugs)) A couple of "bad apples" can really ruin everything. Whatever their problems, it's not your fault.

Sending you best wishes for Monday. Hang in there!

Peace,
Ruth

 

[gijanet]

Oh, Jody, sweetie (((hugs)))

Oh, Jody, sweetie (((hugs)))

I am so, so sorry that you had to receive this "icing on the cake" news and then to be treated in such a manner. I promise you that is not the norm and UofM does take its reputation very seriously.

Fortunately, we have only had a couple of incidents post-op. During Katie's last surgical adventure, she developed HIT (heparin induced thrombocytopenia - an allergy to heparin), so no more heparin. Yet, here we had to hold vigil as nurses and the techs on the floor kept trying to flush Katie's lines with heparin. I realize it is extremely rare in children, but that doesn't matter: we were afraid to leave her at all. It was on her charts (later I plastered it all over the walls, too!) A friend of mine put a bug in the right person's ear, and the next thing I know, the senior nurse manager presented herself, apologized, reassured me that it would not happen again. Then she gave me her home number and her pager number, and said I was to contact her immediately, regardless of time of day or night, if any more adverse events occurred. I'm happy to say that none did (that could be helped by the staff anyway, although God did throw us a couple of more curveballs). Give me a little bit of time and I will research that name, if not the number too, although I suspect that your awful experience today has already been reported to all the right people. Suffice it to say, I doubt that your treatment will be subpar from here on out. In one small way, this might have been a good thing as I bet your nursing care is the best from here on out. Better this happen pre-op, then post-op.

On a positive note, I can assure you that Dr. Bove will come up with a plan to address your heart. Katie has thrown him for a loop or two, and remember, this is what people go to him for. WE don't travel 1500 miles one way for nothing. ANd we have made that trip three times now. (although we do go for Dr. Bove and not the nursing care)

I'm glad, too, that you are feeling some relief and cardiac wise you are feeling better. I'm just so sorry that it took such an emotional toll. That kind of news is difficult for anyone to receive, much less someone who has been through all that you have. I had a feeling something was up when you didn't get back to my e-mail, but I never expected this..............sigh! More hugs.

Topping our prayer list. Much love. J. P.S. Please make sure that your friend or mom knows how to update us to let us know how you are doing.

 

[gijanet]

Another P.S.

Another P.S.

I don't want to scare you, but just wanted to prep you, that after Katie's last surgery (ies), we had some major arrythmia issues. Her heart kept jetting up past 200. Dr. Bove kept feeling like Katie would eventually get back in sync - that her heart just needed some time, and he was right - she eventually did, but the ride was a little scary there for a while. Since you are having a big surgery, not just a "normal" valve replacement, let your mom know that this could happen as well, but I assure you that they will do all of the right things to get you back to normal. WE have been there. We know and they will. You are in good hands, despite yesterday's experience. Much love. J.