8 days post-surgery with several questions

[DocJ]

Hi all, I had previously posted as a newbie looking for guidance pre-surgery, now I am 8 days out (surgery on Sept 17th) and have more questions, as the discharge from the hospital was less than informative.

My surgery was a congenital bicuspid aortic valve replacement, with an associated large ascending aortic aneurysm repair. Surgery on Monday....discharged on Friday. Terrible pain in and out of hospital, as I have chronic pain issues from severe degenerative disk disease, 2 herniated cervical disks, and fibromyalgia, so preexisting issues have complicated the pain issues, which are not well-managed.

My chest feels like I have been pummeled and I cannot get comfortable in any position. I also left the hospital with 22 extra pounds of fluid on me, which has not lessened. I cannot sleep and am incredibly "blue" emotionally. I am walking the house, up and down stairs and trying to do everything I can, as I live alone. Have friends and family in the area who are helping as they can, but tend to feel they think Im doing too little or too much and just end up feeling more alone and limited once they leave.

Has anyone else felt like this? Any information you can give me regarding the best way to lie down comfortably, how to reduce this fluid, manage pain, and feel more stable emotionally, would be greatly appreciated.

I recognize that I am only a week out, and although I am trying to be patient and compartmentalize these issues, it is hard not thinking about all the things I need to do (supposed to move and start a new job in a couple of months), which tends to increase my sadness and anxiety. I know many of you have experienced these surgeries, so any help/knowledge/tips would be helpful. Thanks so very much and I look forward to hearing from some of you!

Best,
Jules

 

[Lynlw]

Hi Glad to hear you are home, sorry to hear you're having such a tough time. Pain, Who manages your back pain relief? Do you go to a pain management guy or some other doc? I havent had heart surgery, but have back problems like yours and whenever I am having any procedures, hand surgeries gallbladder etc My Pain managemnt doc works with my other docs to manage the surgical pain, IF your docs aren't coordinating on that maybe you should call the doc who takes care of your pain and get them involved on the team.

Sleeping can be tough, I dont know if you have a recliner, if so many people find it more comfortable to sleep in that in the beginning, if not use plenty of pillows to prop you up so you arent laying flat.. I
Yes the extra fluid isnt helping, Are you on lasix or other water pills? The only other thing that could help, beside getting your walking in, is to watch your salt intake
I would also put in a call to your cardiologist or regular doctor to discuss your emotional state. Maybe you could use some meds to help get you past this tough time, if so, thats perfectly normal

Since you didnt get much information at discharge, I dont know if you saw it, but the pdf put together by the heart surgeon socciety, might help with some of your questions there is a link to it here http://www.valvereplacement.org/forums/showthread.php?36996-PDF-from-STS-What-to-expect-after-OHS

 

[Duffey]

Hi Jules!
Glad you made it through replacement but sorry you're having a tough time.
I think the extra 22 pounds of fluid is definitely an issue for your cardiologist to act upon. Maybe the surgeon since it's only been 8 days. I would call the surgeon and discuss the fluid retention and the pain you're having. I also think it would be better if you could walk more on level surfaces rather than incorporating stairs. They say taking several short walks, maybe 4 times a day, is better than only taking one long one.
Don't forget, you're tired from lack of sleep and the pain you're dealing with. That's enough to make anyone blue. Lyn's suggestion to try a recliner, if you have one, is good. I slept in a recliner for 10-14 days post-op. Of course, sitting up my mouth kept flopping open and I'd wake myself up with my loud snores. If I had it to do over, I'd find a way to tie my jaw shut. Keep coming here and sharing what you're dealing with. That's a great way to relieve some of your anxiety and feel the connection with others. We've been there and know how hard recovery can be.
Best wishes,
Mary

 

[Jimjam]

Hi Jules

I had my op on the 7th of September - I gained 5 kilos minimum of water and still struggling to get rid of it - it goes up and down daily. I found walking and getting some sun on my skin a great help - helps with sleeping too. I also chatted with my dr about any questions I had silly or not. Emotionally it's a roller coaster I find myself crying at the craziest things - all part of the process. Key things - we've been through a massive I've changing operation, don't be afraid to question and ask questions about any part of the treatment including drugs, procedures and rehab. This forum is a great help - keep checking in.

Jim.

 

[Jkm7]

My first surgery, I gained 15 pounds fluid during the surgery and my second I gained 18 pounds. Mass General was very diligent about monitoring fluids in and out and were insistent that weight be gone before I was discharged home. I was on furosemide (lasix) in the hospital and it did the trick. One does have to be careful about too vigorous diuresing as it's actually possible to become dehydrated which can lead to a-fib.

Most of us find our emotions all over the place post surgery and some of us find temporary use of medications is helpful.


I would suggest a call to your PCP for pain meds and possible anti-depressant. Certainly you need to lose those fluids and your cardio may wish to check you as to why you are holding that water so long. For you to suffer in pain without good pain management is so detrimental to your healing. Hopefully, one of your docs will take control of this issue with you and get you some relief. If you can't get some sleep, how can you do the necessary walking and resting?

Though my DH helped me in the evenings, he was unable to stay out of his office once I was home. I mostly managed on my own and found just a phone call from a friend helped with my moods. I could quickly become very blue but that levels out in time. It seems to be a very common side affect to OHS and most of us have some of the blues in varying degrees.

The chances are very good you will be able and successful in making your move a few months from now. You will be encouraged as you see your healing and recovery progress. You are very early in your recovery but in another week or so, it is likely you'll start to see measurable improvement. We're all different in our rate of healing both physically and emotionally but we (almost all) get there successfully..... and the odds are hugely high in your favor you will, also.

All best wishes.
Let us know how we can help.

 

[jenebug]

DocJ, I had my surgery on Sept 5, and am just now beginning to feel half way human again! LOL A few days after coming home, my left foot swelled and the whole top was blue. I notified my surgeon and he increased my Lasix. Saw him again yesterday and we have now gone to alternating 40 mg one day and 20 the next. I am not a huge salt eater, but it can creep in, so watch the packaged/canned foods. Since getting home, I've not needed a lot for pain in the daytime, but am still taking pain med or Tylenol at night. If you have a lot of back issues, etc, please notify your other doctors and let them get together on this. You have GOT to have sufficient rest to heal. I am still sleeping in my recliner, which they hauled into my bedroom. Getting into bed is not the issue, it's rising out of the bed. Most days I've felt like I had been run over with a Mack truck, but I noticed today it has been a little easier to cough.
Right after the surgery, all my kids laughed at most of what I said,as they said I was so brutally honest. I think the anesthesia affects us all differently, and it does take time for it to wear out of our systems. Stay away from the atairs as much as possible. The more you tire yourself during the day, the harder it will be for you to rest at night, or so I've found. It has been like the more I push myself and tire out all the muscles, at night they awaken to take out their vengeance on me! LOL
Please come on here often and know it will get better. I think most would agree with me that this OHS is certainly not for sissies, but it sure is great to be alive!

 

[Guyswell]

Jules,

It's pretty normal for your chest to feel that way and to have trouble finding a comfortable sleeping position. If you don't have a recliner (I don't) try sleeping on your back with a wedge-shaped pile of pillows to keep your upper body elevated, your head supported and back straight (similar to when you were in the hospital bed. It worked for me. I normally sleep on my side but slept on my back for 2-3 weeks after coming home from the hospital.

I agree with others here that the extra water weight should be managed by your cardiologist. It's normal to come home from the hospital with a prescription for Lasix and a low-salt diet restriction.

Talk to your cardiologist or primary-care doctor about your emotional state. It's very common to experience depression after what you've been through. Rest assured that you WILL feel better with each passing week. Keep your expectations realistic. You probably feel very tired at this point. That's normal and won't last for long. Get plenty of rest but don't spend the whole day laying around. Staying upright and going for short walks will help your body get rid of the extra fluids. DO YOUR BREATHING EXERCISES even if it hurts to do so. You definitely don't want fluid in your lungs to stay around very long.

Rely on your friends and family. Ask them to continue spending lots of time with you. Even if you don't need much help with daily functions, you still need the companionship.

 

[Forrest]

DocJ, sorry to hear you’ve had some extra hurdles to deal with in your recovery. The above posts are great tips. You know, the occasional “blues” that hit some of us (I had them) are totally understandable. They shouldn’t last too long, but if so, nothing wrong with seeking help. It might be helpful to develop a set of personal methods that help you to stay as positive as possible and focused on your recovery. I enjoyed making my own rehab plan, taking in the scenery during hundreds of walks through the neighborhood, researching heart healthy recipes, reading things I previously didn’t have time for, and reminding myself to feel good about having a second chance (some days took more reminding). Something I use to tell myself was, “if I can handle having my chest cracked open and heart stopped, then I can handle anything or anyone” (well, almost anything ).

When you start your new job they should understand that you’ve just had a big surgery, that you may have occasional follow-up appointments or need to pace yourself while gearing up for large assignments. For most of my life I’ve been kind of “old school” in trying to show no pain, but this is one of those times where it’s best to allow people to help you, especially if you live alone (besides, your doctor needs to know what kind of pain your experiencing, successful OHS recovery is very important). I’m basically a private person, so after taking time off and then starting a new work project with people who were new to me I thought I’d keep my operation and heart status to myself. But I felt I had to tell my new boss, and she said there’s actually a person in the building who had the same operation the prior year (for some reason I thought there was no way there would be someone in the same medium sized office building as me who had their aortic valve replaced). The following week I found out that this person was actually just a few workstations down from me in a different work unit, he stopped by to introduce himself, my boss must have told him about me. This woke me up to see that I didn’t need to be overly private, and that getting support is possible. Although not everyone will understand what you’ve gone through or go through, you need to keep on trucking and take good care of yourself, and see if you can mobilize your own support team (even it’s smaller than you’d prefer, and the forum can be one part of it).

Get rest, since you’re fresh out of surgery this includes daytime naps and unless told otherwise, taking a pain pill at night can help with getting a good night’s sleep (usually during the first few weeks as needed). But also continue taking several short walks during the day, expanding them as you feel able. Regular exercise is important, but I agree with the others that stairs might be too much in your first two weeks home, but everyone is different, just don’t over do it, especially if you have back issues. Besides discharge instructions (too bad you didn’t get much) and reading a good OHS recovery pamphlet, your body should tell you what you can and can’t do. I had an Indy 500 course in my house weaving around the dining room table and down the hallway, past the TV to catch a quick glimpse of the news, and by the dog to say hi, I got faster every week. I think I wore out a path in the carpet (it was winter). Best wishes during your recovery.

 

[Bill B]

You should have a follow-up visit with your GP and cardiologist very soon. I saw mine with a week or so after discharge. They should help you with these problems. Although weight gain from fluid shifts is very common after OHS, 22 lbs is a bit extreme. I gained 10 lbs post-op and was started on Lasix in the hospital. It was already decreasing by the time I left at 7 days and cleared up completely within another 7 days. You need help with pain management too and with your history of back pain and fibromyalgia, you must have medical care already for that from which you can seek further help. Feeling blue and even developing depression does happen fairly often post OHS. Again, something to discuss with your GP and/or cardiologist.

 

[jenebug]

Just a quick thought- since you live alone, have you contacted your insurance? Most insurances will pay for a home health aide to come or some home health rehab if you live alone and have no one to assist. Please call and look into this. I was a case manager for a major insurance HMO, and frequently approved assistance for folks. Depending on your needs and abilties, they can approve someone to help with housework, cooking, bathing or whatever you need. Just a thought!

 

[DocJ]

Thank you all so much for your replies. I too think the 22 pound fluid weight gain is extreme, and no one did a good job of explaining it, nor did they seem overly concerned. They tried to give me Lasix in the hospital, but in the "perfect storm" of giving me metoprolol, Lasix, and pain meds, with an already low blood pressure, caused an extreme bout of hypotension. Since discharge, they have since reduced the Lasix to every other day, but it is not doing the job, and the extra weight just adds to the "blues" as I feel and look unattractive on top of the other stuff. I will schedule the appt with the cardiologist, but don't have a lot of confidence in him at all. Anyway....I know I am sounding negative (sorry?!), but this is all very unexpected, and am having a hard time with it. Pretty strong person normally, so this is all new to me. Thanks again for your responses. I very much appreciate your guidance and knowledge! Best to everyone, Jules.

 

[Bill B]

If you don't care for your cardiologist, get in to see the GP. He can handle your issues short term. Long term, if you aren't confident in your cardiologist, you need a different one. I switched cardiologists immediately after my surgery. So, my post-op visit was the first time he had seen me. It's worked out well.

 

[SCCWS]

DOC: Sorry I didn't see your post sooner. I am a 63 yr old male I went into the hospital at 145 lbs. I was discharged at 159. I was shocked. I have never been that heavy in my life. The hospital had me on 1 lasik a day but after a week my Cardio upped it to twice a day. Today I am at 139. So in 3 weeks I lost 20 lbs. Now I am constantly going and I have to get up 2-4 times a night but the weight has been falling off. I also have been eating very well and still lose. I am sure tomorrow they will take me off the lasik but it certainly did the trick.