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Hey Sparklette-
Welcome home!! I am JUST now in the process of learning how to recovery/day 5 post-RP.
It is COLLLLLD here now. I took a walk down the stairs, down the sidewalk, then promptly instructed Erica to get me home STAT :) Gave me shivers.
Take it slow and easy, it will happen.
 
Sparklette...so glad to hear you are on the other side. Perhaps your success will give me courage! So sorry about the pain med problems.but now its rest and relax from here. Glad to hear you are with family. Take it easy on the walking. Sounds like it is cold and icey in NY. Post when you can. Jennifer
 
Hi, sorry i didn't send my fuller report earlier but here it is:

I was wheeled into the OR at 10:24am and came out around 6pm. Apparently they successfully repaired my mitral valve (thank god) and then did a cryo-maze procedure because when they opened me up I was in a state of atrial fibrillation. So I ended up having two procedures. That night in the ICU when I woke up I was gagging and so uncomfortable because of the breathing tube. I remember I kept banging the side of the bed and the nurse (her name was Pinky) kept saying that if I didn't relax she wouldn't take the breathing tube out but she kept calling me by the wrong name (she was mispronouncing it really badly) which is why I kept banging the side railing and trying to point to my name tag. Finally at some point they took the tube out. And then I remember that night that someone told Pinky to set up that personal painkiller device (PCA they kept calling it).

Really early on saturday morning I remember I woke up and was in extreme pain. I couldn't speak and just kept bawling because everything hurt and I remember hearing someone say why isn't the PCA set up and instructions to set it up. Anyway, I remember trying to speak but not being able to because I was crying with pain so much and I remember Pinky saying to me to stop crying because she was putting the PCA thing together but that she could only go as fast as she could and not any faster. Anyway, when I finally got more painkiller in me and was starting to feel less pain and a few hours later my mom arrived and I asked her to tell them not to send Pinky over to me anymore because I couldn't believe that she left me in such excrutiating pain for so long. My mom says when she told them to move Pinky off my case the other nurse at the station told her that young people (I am 31) have more nerve endings than older people and Pinky didn't realize that. This sounds like bs to me but who knows, maybe that second nurse was right.

I was in the ICU for five nights--i ended up needing a blood transfusion and there was one night where they kept giving me this oxygen mask and some other drugs and mostly those nights were a blur and I cannot remember what the problem was. I do remember feeling very scared because I could tell something was wrong by the number of nurses and procedures and stuff being done. On the day I was finally moved to a regular room they said they needed me to have two IV's and that I had one good one but needed one more but they couldn't get one in my arms because they were so swollen.

So they put the IV in my neck and did this little procedure with stiches and everything. Later when I got out of bed to be transported I saw how much blood was in the pillowcase from the procedure--it was a lot. And when I got to my room and my mom say me she was appalled that they never really cleaned my neck up so there was all this dried blood and whatnot--it just looked very nasty.

Things in the regular room got better because I was finally feeling able to move around a bit. Sleeping was hard at night and a few nights I would wake up in pain and wait forever and ever for someone to bring me a painkiller. I tried to make a deal with the night nurse that she would just wake me and give me my painkiller at the prescribed time so that I didn't wake up in such excrutiating pain but she told me that she didn't wake patients up just for painkillers. She did say that if I happened to be awake when she came by for vital sign stuff then she could give me something. I didn't understand this logic. I thought that people healed better when they weren't in pain so to me I thought you would want people to have their painkiller on time so that the last one didn't wear off for so long before the next one.

And I notice that they would ignore my roomate so many times too. Sometimes I would ring my bell just so that I could ask the nurse to find my roomate's nurse. The lack of attention really bothered me. I was the youngest person on the floor and the way they treated everyone was not all that nice. Some nurses were very nice but it was so hit or miss, mostly miss and that surprised me a lot.

The other thing is that I kept telling everyone, from the day of my pre-op testing and every single new nurse that I encountered, that I am allergic to adhesives and to please use the hype-allergenic electrodes and paper tape or perhaps the pediatric electrodes, etc. but no one would listen to me. They kept asking well how allergic are you and will the reaction occur right away and stuff like that. So now I have all these horrible looking rashes on my chest because no one was willing to get alternate stuff to use on my skin. And that IV in my neck? Well they changed the dressing everyday and refused to use paper tape or anything that would not react with my skin so they kept peeling off against the same skin everyday. Well one day this huge blister formed in reaction to the adhesive and when they pulled the dressing off the next day it broke open and just kept bleeding for days. Even when they covered up that bleeding they didn't use paper tape (HELLO!?!?) and didn't clean the dried up blood properly and it just looked so much worse than it was. One day the nurse practioner from the surgeon's office came by and was so appalled by what it looked like he went and got me gauze already soaked in something and he very nicely cleaned the wound and dressed it in a way that didn't hurt finally. When I got home I had this huge bruise on my neck and this big oozy scab that has finally healed. Now I understand why my neck was so sore all those days!

My mom asked to speak to the supervisor and when she came to talk to us and I said I would really appreciate it if I could get my painkiller on time so that it didn't wear off for so long before the next dose she nodded and seemed to understand but then at the end of the conversation she told me that I could eat anything I wanted and that if I wanted my family could bring "my food" from outside. She kept repeating this until I realized she meant that I could ask my family to bring me indian food to eat (I am indian and my parents are from India). This made me so mad to realize that she was basically patronizing me. I was born and brought up in the US and had no issues with the hospital food since I've been eating all kinds of food my ENTIRE life and here was this woman telling me that perhaps I would feel more comfortable (read: stop complaining) if only I would be allowed to eat "my" food. After that I just tried to live with things and didn't really speak to anyone. Luckily around the same time I was feeling more able to help myself out and didn't have to rely on the nurses as much. I really felt bad for some of the older patients there though. Since my mom was there as much as she could be I was able to rely on her for lots of stuff and that helped a lot.

Since I've been home I have had a lot of pain and the doctor said it is because I have been moving around and doing a lot more than when I was in the hospital. My family had been giving me the prescribed painkiller every four hours like it says on the bottle, then every six hours and then every eight hours for the past two days. In between doses I take Motrin if I need to. Last Friday I called the surgeons office to see if they could give me a refill on the painkiller---this was around when I was on a 6 hour dose.

The nurse basically said I was lying about my level of pain because I described it differently in our two conversations and accused my relatives of wanting the drugs to deal them. She didn't even imply this she actually came out and said this. And this made me SO angry. I think the first time I spoke with her I said that sometimes it feels like someone put a hot iron to my chest and then the second time I said that it feels like someone put an anvil on my chest and wouldn't let me move. And she said that since I didn't say I was in "excrutiating" pain she doubted that I really needed a refill. She also said that I had to learn how to live with a certain amount of pain and discomfort. Which I already do--my scar is very uncomfortable and sometimes even between the 8 hr painkiller and the motrin I still have pain but I live through that because I don't really want to be on so many drugs. And this nurse has NEVER even met me in person.

Frankly, I don't know why I'm still in so much pain, it's been 16 days since my surgery. And I get that you shouldn't be on these drugs for so long but my family has been regulating it very carefully and they've been slowly weaning me off purposely. Anyway, I have two pills left and tomorrow I visit my general physician for a check up so hopefully she will be willing to prescribe me something, even if it's something different--maybe something less potent but at least stronger than motrine, like codeine or whatever. Right now I am worried that I will have a lot of pain one day and nothing to take for it.

Also the bottom two stitches on my scar look different than the rest and have been bothering me so I'm going visit the doctor about that as well. Tomorrow will be a big day for me!!

So far I have been sleeping on the couch because I am scared of rolling over in the bed and this way I can wedge myself against the back of the couch. I walk on the treadmill once a day for at least 30 minutes now because there is so much snow and ice here in New Jersey--oh and because my family won't let me outside even though I wish I could walk outside instead.

The only other thing that worries me is the prognosis of the cryo-maze procedure. I'm wondering whether I will have afib all my life but the surgeon says we won't know the prognosis of that procedure for a little while. If anyone has any thoughts on this I would appreciate it.

I've basically put the hospital experience behind me and don't think about it much anymore. Same with the fight with the nurse last Friday. When I finally got to speak to the doctor she said there was nothing wrong with the painkiller regimen that my family had put me on.
 
Sounds like you had an awful experience with the nursing staff!
I hope you are starting to feel a tiny bit better - remember though that 16 days is only a very short time and you can still expect to be feeling not that great. That's normal for that stage post op I'd say.
As far as the Maze Procedure goes - it is 6 months before they can say for sure that it is a success or not. My surgeon told me that if AF is still occurring after that period of time then the procedure is "deemed to not have worked".
6 months is the time it takes for things to heal after that procedure...
 
First off, I'm glad you're home.:) But it is distressing to read of your experience not only in the hospital but also since you've been home. I would send a letter to the hospital administrator and ask that your complaints with the nursing staff be looked into.
Issues, such as you encountered, really irritate and anger me. I would cause a fuss!:eek:
Good luck!
 
First off, I'm glad you're home.:) But it is distressing to read of your experience not only in the hospital but also since you've been home. I would send a letter to the hospital administrator and ask that your complaints with the nursing staff be looked into.
Issues, such as you encountered, really irritate and anger me. I would cause a fuss!:eek:
Good luck!

I was just thinking the same thing as I read this thread
Earline
 
Wow what an ordeal!!!! i definately would also be glad

to be outta there with that kind of stress on top of all

you already had to go through.

Thank God your mom was there for you.:)

I definately would be complaining to higher outlet regarding this,

and i know being outta there makes things 100% better for sure.

The best in your remaining recovery,sorry for all you went through:(

zipper2 (DEB)
 
I can't understand why they just didn't give the pain medication an regular intervals via the IV. That way they don't have to wake you up.

Also, I remember saying to one of the nurses that I didn't need her to top off the pain meds, but she told me that if they don't do that and the pain gets too much, it is harder to bring it back under control.
 
Sparklette77,

I'm appalled by your treatment at your hospital. :mad: It sounds like, despite the fact that you are a well-educated professional (insured and self-pay), you were treated like an entitlement-minded, drug-seeking user of the system on Medicaid. I know, because my wife was a doctor in the Public Health Service. She saw that behavior at Cook County Hospital in Chicago where she did her residency. She often had to do duties for patients on her rounds the nurses didn't feel like doing.

At St. Luke's Boise, where I got my own mitral valve repair 12/12/07, I was treated like royalty in comparison to you. I was never permitted to experience any incision or sternum pain while I was there--within reason of course. Some pain can be a real friend, helping you keep from doing too much too soon. The only bad pain was during my pacing wires removal (see my album at my profile), and the finger sticks for blood glucose levels. St. Luke's Boise is also supposed to be the local 'charity' hospital. However, even the indigents and non-insured are well taken care of. The cream of the nursing crop, however, was reserved for the ICU and Telemetry floors. I'm shocked that the nursing staff even in such critical care units as cardiac ICU at your hospital had such a blasé attitude toward real human suffering. What are they trying to do? Get their hospital sued out of existence? That accusation of you wanting to deal drugs with a pain medication refill with a verified recent OHS on your medical records is quite frankly just plain insulting.

As for the walking part--I want to change tone here to more positive :) --I went outside. It is cold in southern Idaho like in NY. My solution was to us a heat-exchanger mask. There's several brands out there. The one I use is PolarWrap. Others I can think of are Psolar and BreathXChange brands. They rely on the fact water has a high heat capacity. When you breathe out, the water in your breath condenses temporarily on some inner portion of the mask, then when you inhale, the warm water condensate re-evaporates, returning the heat to your lungs. Most of the time, it just feels like you're breathing humid normal room temperature or slightly above air, while the rest of you is outside. There is slight breath resistance, but trivial against the comfort of warmer air. The condensed water doesn't really accumulate, so you don't bubble and gurgle even after wearing it for hours. Since people lose about 50% of their body heat via their breathing, using a mask like this is very effective. Other people with OHS have used them in cold weather, as have cold-induced asthma patients--very successfully. I can say that it allowed me to be outside and walk long enough so that leg cramping rather than respiratory distress was the reason why I had to return home early. This was true even when it was below 10° F. In general, you don't have to dress up as much, and, unless your feet or hands actually get wet, you'll seldom experience cold fingers or toes since your body doesn't have to fight to keep your core temperature up with each breath--and can thus spare the blood to warm your extremities. Scarves and neoprene face masks have their place, but don't do nearly as well at actually warming up breathed in air, especially near the end of inhalation. Why am I going into such detail? It's because not only will you be reading this, but lots of other people who visit this forum, and I think that with winter being here, we OHS survivors need to take extra good care of our bodies, and I just wanted to pass on something that helped me immensely over the recovery period last winter as well as this winter. Don't worry about my having some sort of financial motive here. I don't own stock of any kind--even my small IRA is just in the bank.

I have to admit, though, that when things got too icy outside for safety, my mother or wife drove me into Twin Falls to the indoor mall there so I could do my daily walking in comfort. Then resume outdoors when the ice had melted or fresh snow had fallen.

I hope you can forgive these people at the hospital, as they themselves may have had some sort of difficulties that you don't know of. Still, it's more for your own peace of mind to try to at least let at the hurt go, than for their benefit. Even if you're considering legal action, forgiving at the emotional level could help clear your head enough to see a logal course of how to proceed. I'll be praying for your quick and uneventful recovery--hopefully pain-free in the very near future.

Chris
 
Welcome home! So sorry to hear of your bad experience at the hospital but hopefully that is all behind you now! As for your walking, personally I wouldn't get on the treadmill but instead take short little walks at first. As your strength & stamina picks up, you can increase your walks each day. Don't overdo yourself; nice & slow. It will all come back to you eventually!

Take care & Merry Christmas to you & yours! :)
 
Thanks guys.

They had me on an IV painkiller in the ICU but not in the regular room. I think the problem was that I kept having a lot of breakthrough pain some days and I really don't know why. At this point the pain mgmt is much better. I take a painkiller every 8 to 10 hours and motrin in between and this is working just fine.

I saw my general physician yesterday and now I feel MUCH better. She rocks, as usual. Basically she looked me over and then went through all the meds that I was on and explained what they were for, including the ones that were finished and also asked me about my pain and the whole painkiller situation and then without any questions gave me a prescription for something less potent than I was on but she said it would have a little more kick than just motrin. Funny that no one else had ever explained all the meds I was on and their purpose. She also signed me up for a coumadin clinic b/c I have to take that for a few months and explained the purpose of it which I found really helpful. She looked over all the weight/temp records that my family had kept for me and discussed what normal ranges were and what to look out for.

My heart surgeon is a superstar in the NYC area and I had an inkling going in that the nursing staff at his hospital was not the best in the city because I had heard this through the grapevine (friends of friends that worked in hospitals around the city). But I wanted that doctor so I didn't think twice about it. I get the sense there is some disconnectedness or disorganization between the surgeon and his team and then the actual nurses on the ground so to speak. And there were some really great nurses there, but the disinterested ones were more plentiful. I remember one nurse who everytime the doctor asked her to do something she had a bunch of other things she said she had to do first so that whole procedure to put an IV in my neck took forever because we had to keep waiting for that nurse to finish whatever else she was doing and come back over and then she would ask the doctor again what their initial request was. Actually thinking about this now makes me laugh a little.

Anyway, I am over it and feeling much better physically and emotionally. I've learned who to speak to in the surgeon's office and which nurse to avoid. I can only assume that the nurse that accused me of lying and of my family of wanting to deal drugs was having a bad day or something. = ) I do feel bad for some of the older patients in that ward that didn't have anyone to really help them out.

I think my brain is faster than my body b/c everytime I think I have the energy to do something big my body doesn't exactly agree. So the other day I walked for a bit and then ended up taking a two hour nap!

Thanks for the advice everyone. Six months seems forever to wait for the maze prognosis but looks like I am just going to have to be patient!
 
Thanks for the advice everyone. Six months seems forever to wait for the maze prognosis but looks like I am just going to have to be patient!

Out of curiosity, when you feel your pulse, is it regular or irregular now? I know you were in A-Fib when they decided to do the Maze, but I am just curious if you are still in it.
 
When I feel my pulse it is regular. In the hospital there was one night where I thought the bed was shaking and then realized it was me shaking because my heart was beating so fast. They said the episode lasted about 10 or 20 seconds and then my heart went back into normal rhythm all by itself. It scared me a lot and so far I haven't had another episode so hopefully that is a good sign.
 
Hey Sparklette... so glad to know you're home and starting to mend. Ugh... your hospital stay sounds like a nightmare and sadly there were a few components I could directly relate to from my own stay. I also had major problems with pain in ICU and was told they couldn't/wouldn't give me anything more - so I chucked a major hissy fit and told them they'd better get an IV to let me self medicate because according to their own policy, extreme pain is detrimental to the patient. I had my drip in within half an hour!

I also ran across some pretty nasy nurses... although more to other patients, but it made me very mad nonetheless. One of them even had the gall to bitch to me how another nurse stabbed her in the back during a practical exam and how they should "stick together" and that "it's more important that we look out for each other than the patient"!!!! HELLO?!!

Anyway, there's nothing like being out of hospital to make you feel better and I hope your recovery goes from strength to strength.


A x
 
Thanks Abbanabba--I've been reading your blog and other posts and am glad to hear you are home and progressing well also. I realize we had different surgeries but it sounds like we are close in age and symptoms. I can't wait until i can work out properly again (it's been over a year since I've been able to) and then hopefully get back to the active life I had (and fit into the rest of my wardrobe)! = )
 
anna are you planning to join a cardiac rehab program at some point?
 
I'd really like to, but because I live in a country town, the closest one is about an hour away on the bus (I don't drive) and because the buses are so few and far between, it's unlikely I would be able to attend :( I am wondering if I get in touch with them if they would consider putting some advice and exercise routines together for me though.
 

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