Post pump syndrome (neurological and vision problems)

[Zazzy]

Hi Jennifer,
Some of these things are quite scary aren't they? One year after my mitral repair I still have problems sometimes... the dose of one of my meds is four capsules... I often have to have a family member count them for me! I may have six pills... I may have three pills! Unfortunately this is my med for my leukemia and cannot be put into a pill box.

Oh and speaking of prescription bottles... in an earlier post you mentioned that you had to have your husband open your meds for you. My pharmacist puts all of my meds in bottles with non-childproof lids.... but then I have no small children wandering around either lol.

Coreg can have some weird symptoms... but your dose of 6.5 mgs is small (same one that I was on for a time) so it shouldn't take much weaning of it!

Take care,
Zazzy

 

[JenniferO]

Thanks so much all for sharing your experiences. I certainly hear much that sounds familiar.

We landed a second time in the Emergency Room followed by two days in the hospital here in Salt Lake while they ran another MRI and TEE and miscellaneous tests and put me on a drip of Heparin. This was following an episode Thursday night where as I tried to wake from sleep I was able to come to consciousness only after a struggle and my left arm was numb and non-functioning and my left leg was partially numb and also not working. It lasted about five minutes after which some partial feeling began to come back and another five minutes I was feeling more functional but dazed and scared.

The diagnosis never became clear but the tests showed no ischemic activity so they finally released me without putting me on coumadin as they had been threatening.

That second round in the hospital was very demoralizing.

Marty, I don't know how long I was on the bypass pump. Near as Mike and I can figure it was between an hour and an hour and 15 minutes given when they told him Cosgrove was going in to start the repair and when they told him the repair was done and I was off the pump. Cosgrove reported the repair went very smoothly so I don't think there would have been any particular delays.

I have weaned myself off the Coreg and a lot of the visual migraine symptoms have disappaeared. My eyesight is even allowing me to see the computer screen a little better.

It's interesting how many forms the visual patterns take. When I closed my eyes, I sometimes had whole images and picture shows going through my head like some sort of residual memory patterns. At one point, I even had a little green monkey that kept jumping up and down at the periphery of my eye among other flashing patterns, hammers bobbing up and down, pinwheels spinning all in hues of fushia, lime green and lemon yellow. Other times I had images of crowds of people gesturing toward each other or marching in parades. Very weird stuff.

Also, Frank, this weekend the lack of appetite got to me. Everything I could think of to eat simply made me feel nauseaous.

 

[Jessica_B.]

Eeew...

Eeew...

Doesn't sound like a nice experience, your 2nd round at the hospital? Glad they took you seriously though.

I was on the heart and lung machine for 5 hrs 15 minutes. Aside from making me very cold for days afterwards I still have residual effects on my memory.

As to the eating, when I was recovering after a serious reaction to some medication after my MVR I found that mashed potatoes worked pretty good but getting the best approach to get your apetite back is very much an individual thing I guess.

Take good care of yourself! I hope the problems will let up on you soon enough!

/jessica

 

[Nancy]

Hi JenniferO-

Just wondering if everything is going OK, after your sojourn to the ER. Fill us in please.

 

[JenniferO]

Nancy, thanks for the concern.

I'm doing okay. The visual migraine stuff has for the most part gone away with just some minor disturbances since I discontinued the Coreg. So I think that was a lot of the problem.

In spite of that, my cardiologist has today decided to put me on a blood thinner by the name of Plavix - described as more than aspirin but with fewer risks than Coumadin - for the next two months until my heart can "epithelialize". They seem to still be a little nervous and want to keep my platelets from "aggregating".

I'm still extremely tired - maybe that's just normal for recovery from surgery like this or could be because my blood counts were low and are probably now lower after all the blood samples they took while I was on the Heparin last weekend in the hospital.

 

[Nancy]

Hi JenniferO-

When Joe had so many TIAs prior to his mitral surgery, he was on Plavix also, in addition to Coumadin. He's no longer on it, but it's a good thing which should help, in case there are some small emboli still coming off in the healing process, looking for a little place to get sticky and cause mischief.

Little by little, everything will work itself out.

Take care

 

[Ross]

I'm still extremely tired - maybe that's just normal for recovery from surgery like this or could be because my blood counts were low and are probably now lower after all the blood samples they took while I was on the Heparin last weekend in the hospital.

Sorry to say it, but your going to be tired for a while yet. Lets see how you feel in another 30 days. You should start to feel pretty good by then, maybe not top notch, but better then you do now.

I'm right with you on the blood tests now. 2 and 3 times a week since they started the Coumadin. I'm beginning to wonder if I'll run out of blood soon. I know their running out of places to take it out of my arms!

 

[Nan]

Hi Jennifer,

Hope you are doing better. Just wanted to tell you to hang in there as many of us have had these symptoms. Usually they diminish over time. Mine started in the car on the way home from the surgery....all of a sudden I couldn't see! Scary. And then I began to get visual migraines as well. I also discovered I couldn't read, prior to surgery one of my great joys. No concentration, couldn't really follow the words, etc. Gradually it all began to diminish.

The good news is that now, 2 years post surgery (AVR) I have hardly any of that remaining. Just a very occasional visual migraine.

I am glad that they are checking you out, however.

I hope that your recovery will be rapid.

Good luck.

Nan
AVR 10/99 St. Jude Valve

 

[Mb]

Hello everyone!

I just wanted to add a note of encouragement. My husband had many of the same symptoms you have had, with the exception of going to the ER with the humbness etc.

He said that after he woke up, he saw only in black and white for about a half day. Like the old black and white movies. No color. He also had some crazy "dreams", and continues to have them. I think in the hospital he said he was pretty sure he was awake, but the "dreams" kept coming for about two days. Now we think the crazy dreams he has are from medications. Wednesday night he dreamt he had a major stroke. Scary. We had gone to see his doctor during the day, and he does have to go in for a stress echo, so I don't know if thats what started it.

Please update us on how you are doing!! Best of luck!


Marybeth

 

[ShanaleT]

Hello Jennifer!

Hope you get to feeling better. I, too, had the same symtoms you have described in the other threads with the headaches and mental confusion, but it was my blood pressure. I went to my reg dr and they checked it for me and it was out the roof. I have never had a problem with high blood pressure. In fact, it stayed too low the entire time I was in the hospital. They put me on a new med and I have felt wonderful. I went back to work on March 1 and have not felt this good in over a year. I feel sure you will eventually feel the same. God bless you and you are in my prayers.

Shana

 

[JenniferO]

The visual migraine stuff has abated, particularly after discontinuing the Coreg, although I still perceive my general eyesight to be a bit worse than it was before the surgery. I'll give that more time before I change any eyeglass prescriptions, though.

All the reassurance here did a lot to help me keep my sanity so thank you so much for everyone's input.