coming up to four weeks two weeks of hell

[Lynlw]

Lyn. What could be infected?

Chances are very good there is not an infection, since they are pretty rare, but they do happen.
I know everyone does everything differently but after OHS we just call the cardiologist or surgeon with any issues or questions and don't call Justin's Ped or GP until he is cleared from cardiology around the 6 week mark or longer if he has some post op bumps. It coulld just be the normal post OHS things or It could be just the flu, but the fact it is going on so long and you have good an bad days, would make me at least think about it could also be something related to your surgery and I would at least want it checked and ruled out. Most likely it isn't anything major and infections are pretty rare, but after OHS we always say we rather be safe than sorry.
There are other things beside an infection, like fluid and different things can be infected like the area right under the skin above the sternum, -sometimes it is just a reaction to the stitches and not bacteria type infection) -Justin had that when he was a baby. or even the sternum itself or under the sternum. ( justin had when he was 19) It could even be something you don't think about like a bladder infection because of the foley catheter, or even positive blood cultures.
Justin was readminted 10 days after his last OHS, because he had fevers and a chill and felt like crap (after being home doing great lots of walks ect) he had a spot on his incision, that was a disolving stitch working his way out (that he has with most surgeries,) so we called they did an xray that looked good, even an echo, but since something just didn't see right, they decided to do a CT to look for a pulm embolism or something. It tuned out they saw a pocket under his sternum so he had surgery the first thing the next day .Justin ended up having an infection both in his sternum and under his sternum. Every doctor we talked to said how lucky it was the infection was caught so early, because it would have been really bad in a couple days. and honestly when we called it was just because he had a couple spots where the stitches were working out, that with Justin we know to call and if they pull it it didn't get as bad as it did his 1st surgery. When they pulled the stitch something didn't feel right and since he had the low fever and chills they wanted to makes sure he wasn't having pericardial fluid again, (that he has a history of) We just thought they were going to snip the stitch or if he had fluid start him on motrin, like after most of his OHS, we were shocked he was being admitted and really shocked when the team walked in to explain he needs surgery.
The fever/chills feeling like crap,this far out that is ongoing, could be other things, like fluid around the heart (pericardial ) or around the outside of the lungs (plueral) The best way to check that is an echo and sometimes you can even see the fluid on and XRAY, I'm a little surprised they didn't do an echo to check for that, (unless since you went to the card on a good day)

As for the sleeping, most people have problems getting much better sleep in the day. Are you doing anything different during the day that makes sleep beter, like during the day, using a recliner or comfy couch and ad night sleeping in your bed? IF that is the case, Maybe you could sleep in the chair during the night. Or maybe put more pillows on your bed so you aren't toassing and turning as much. Hopefully this far out, you should be starting to sleep better.

 

[JohnCalderwood]

Thank you Lyn. You gave me a lot to think about. I feel a bit better today. Little pain just very sleepy. I am going to try not to sleep today during the day especially since I am not in much pain. I think the body can only use so much sleep and if you get too much it can cause uneasyness and restlessness during the night that can cause collar pain in the day. If these flu symptoms keep coming back I will have to get in touch with my cardioologist no matter how busy he is. My body seems at the right temp. today. I am not cold. Every day is an adventure.

 

[JohnCalderwood]

I have had problems with fluid on my heart in the past. I had to switch cancer drug because of it. I am anxiously awaiting a date for a echo my cardioologist said was routine at this point. That will be stressful. Already worried about fluid around my heart.

 

[Bina]

John, make sure you don't overdo anything. Walk, stretch, rest. Listen to your body, write down concerns to ask docs.

 

[Lynlw]

I have had problems with fluid on my heart in the past. I had to switch cancer drug because of it. I am anxiously awaiting a date for a echo my cardioologist said was routine at this point. That will be stressful. Already worried about fluid around my heart.

I've never had pericardial fluid, but got good at knowing when Justin did, just by watching him. Do you remember how it felt when you had the fluid in the past? Do you feel anything like that now? For Justin, he can't take as deep breaths and when he was a toddler it must have really botherred him to bend over, because When he would point to things on the floor for me to pick up instead of getting them himself, I would think the fluid is back (he was in and out of the hospital with fluid for 6 months after his 2nd surgery when he was 18 months old (but the docts have gotten much better at getting it under control now) and when he got older and could talk, he would tell me he had pressure especially if he laid back on his bed or even had the recliner far back. also I know SOB can be a sympton. and Justin usually got a low grade fever that would come and go.

 

[Guest]

Body aches, I am freezing, reluctantly take a pain killer then get naseaus.

John, you are still early into your recovery, if you push too far too soon, your body will let you know. If its your shoulders and/or neck that hurt, try a heating pad. Take your pain killer with food, even if it's applesauce, that can help you avoid the nausea. For being cold, wear layers, Coumadin makes some folks cold. I remember during my recovery I could not get warm even with layers. I had three blankets plus a couple layers of clothes. I still get cold with coumadin, usually the first couple of hours after I take it in the evening. Sure beats those night hot flashes though so I won't complain.

You've had a rough month, I hope it starts to smooth out for you now. One step at a time.

 

[JohnCalderwood]

Wow that is scary.I have had real problems taking deep breathes. And especially when I lay down I have trouble taking deep breathes. I really notice when I lay down. What can be done about fluid on the is it on the heart or lungs? What can be done? My cardioologist said his secretary would phone me with a echo date. I am going to phone on Monday and see if I can get it moved up as sooon as possible. Are you familiar with the three balls that you suck through a tube? They gave it to me in the hospital. At times I reached the three ball level. Today I could only do one. The coming and going of freezing times tells me I have probably a fever that comes and goes. What did they do about the fluid? Thank you Lyn.

 

[JohnCalderwood]

Thank you Lucy lou. Good advice. I found a home remedy that works for me for naseau. Raw ginger peeled cut into circles then put on top of saltine crackers with water. Tylenol is my life saver right now but I am trying to restrict how much I am taking.

 

[kfay]

John, if you have noticed that big of a change in your breathing and are having problems breathing when lying down, I wouldn't wait until Monday to speak to your Dr. You could be building up fluid and it can become dangerous. I would call their service and have the Dr. on call phone you. I might even go on and head to the ER. Don't sit on this, you could find yourself in trouble rather quickly. I don't mean to alarm you, but these kind of changes need to be taken seriously.


Kim

 

[njean]

Sorry to hear that you have been having such a tough recovery John. But unfortunately, sometimes these things happen to some of us.

As mentioned, if you are having trouble breathing, especially when you lay down, or notice swelling around your ankles, torso, legs, etc., call your doctor ASAP. These could all be symptoms of CHF (congestive heart failure) caused by fluid buildup in your lungs directly related to the heart surgery. Prescribed diuretics will help relieve the fluid buildup & in more severe cases, a needle extraction of the fluid can be performed at the hospital.

Hope you see your doctor soon so that you can start feeling better real soon!

P.S. I too found myself chuckling at some of your posts .....finding humor in our otherwise humourless situations, helps preserve our sanity!

 

[Lynlw]

Wow that is scary.I have had real problems taking deep breathes. And especially when I lay down I have trouble taking deep breathes. I really notice when I lay down. What can be done about fluid on the is it on the heart or lungs? What can be done? My cardioologist said his secretary would phone me with a echo date. I am going to phone on Monday and see if I can get it moved up as sooon as possible. Are you familiar with the three balls that you suck through a tube? They gave it to me in the hospital. At times I reached the three ball level. Today I could only do one. The coming and going of freezing times tells me I have probably a fever that comes and goes. What did they do about the fluid? Thank you Lyn.

Sorry to dissapear on you but my netbook thtat I've been using since my PC died, isn't working. Right now I'm usin Dons laptop
As others said IF you think there is a problem, don't wait around for your card to schedual a routine, post op echo, I would call the service and tell them what your symptons are. You could also go to the ER, but in our expereince its easier to call whoever you were called at discharge for any questions, or concerns. especially on the weekend. ERs are probably packed and they will hve to call a cardiologist in anyway ect. We always call the card or surgeons service since they know you and your heart, often THEY will say go to the ER, and will call ahead, let them know you re coming, what tests to do ect and meet you there
Fluid. it depends what kind of fluid and how bad it is what they can do. IF it is CHF all over fluid they will use diuretics ect. BUt if it is pericardial or plueral fluid, outside your heart or lungs, ALOT depends on how much fluid there is , how soon it was caught. IF ther is just small amounts of fluid, since it is usually related to imflamation, usually just a OTC med like motrin or a steroid can clear it up. Sometimes if there is a litle more they may have to draw the fluid off with a needle in either the plural or pericardial sack, where ever the fluid is. Sometimes it is a one time fix others it may need a couple "taps" over a couple days if the fluid still comes back. Justin had numerous taps when he was little, but all the other times since it was dxd early just mortrin and sometime prendisone cleared it up. Sometimes if there is alot of fluid they might have todo surgery and remove part of thesack.
I would call, even if it turns out, you are just hving normal recovery/overdoing things, it is better to be safe and get it checked than be sorry and let it get worse.

 

[njean]

or pericardial sack, where ever the fluid is.

Often times when it does involve fluid in the pericardial sack, it is accompanied with the most excruciating pain!

I had this happen to me right after my 2nd surgery & it was the most awful pain I had ever felt! I couldn't breathe in or out --- felt like someone was jabbing me with a knife!

 

[Luana]

John,
Breathing difficulties and/or SOB are fairly common after surgery, and they shouldn't be ignored, so, if you're having difficulty or pain with breathing, you probably should either go to the ER or call cardio or CT about it ASAP and not wait until Monday. Where you are right now in your recovery, it's better to err on the side of caution. There may be nothing wrong with you, something minor or something serious; you won't know until you get a medical opinion.

I went to the ER about a week-and-a-half after discharge. Thankfully, nothing serious was found, like pulmonary embolism or pneumonia; however I did have a small pericardial effusion, fluid in the pericardium which is the sack around the heart and was able to be treated with diuretics. Did anyone mention to you while you were in the hospital that one of your lungs may have partially collapsed? That happened to me the day after surgery, and for a while it hurt to breathe deeply.

The balls with the tube are a spirometer. I had a lot of difficulty with that in the hospital, though I did do it regularly as instructed. It was at least a month or so after I got home that I could get that puppy at good levels.

Hang in there, you will get better.

 

[JohnCalderwood]

Feeling much better today. Went for a bike ride, cut the lawn, dug in some shrubs and did some painting. Then I woke up. Just joking of course. No seriously I felt much better today. But I have been here before. Took a gravol to help me sleep and had a great restful sleep last night. Makes all the difference. I did a little more than I usually do but I have learned that anything I do today I could feel in my body tomorrow. It would be so nice to get two good days in a row. I pray for a another good day tomorrow. I promise I won't do too much. Coming up to 5 weeks on Tuesday. Where do you guys remember things turning around for the positive? I geuss it so personal, so different for every one. Is 6 weeks a milestone? I figure 8 weeks is?

 

[Bina]

Yup, the ups and downs are a total drag.
I remember at 9 weeks post op my home nurse commenting on how well I was caring for my incision, and that I was making good progress....so, I asked her if she was dumping me. She had a good laugh and said, "yes, there are other's who need my visits more." It was scary not to have her weekly visits, but I had DH working from home at that point. I tried to decorate the Christmas tree then, and that was really tiring. Opening gifts was tiring too. Those "off" days will eventually spread out.

 

[JohnCalderwood]

Wow 9 weeks and you were still feeling ill effects. I was hoping to be in a triatholon by then.

 

[Bina]

John, whatever you do, don't compare yourself to me....I do VERY badly with all medical procedures.
When you got that flu it just set you back a bit, and now you will move forward again.

 

[JohnCalderwood]

Bina. Unfortunalty I think I can compare myself to you. It seems I am not good at recovery. When did you start to feel "normal" Bina?

 

[Carrie]

John,
Sorry to hear about all those 'bumps' and who needs hemorrhoids on top of that. I hope every day gets better. Glad to hear your INR is in perfect range despite all of this!

What is INR? I don't know these acronyms.

 

[Carrie]

I found INR in the glossary at Heart Talk on the main page. Thanks.