Advice Needed On How To Recover From Emergency Surgery With Pots

[Ash]

I am really hoping someone can give me some ideas on how to cope after surgery with PoTS.

If you have read my ectopic and methotrexate post from earlier you know that I ended up with internal bleeding last Saturday and emergency surgery. The 30 min procedure took over 2 hours. The doctor has never seen what he saw in me (of course my body just cant be "normal" once in my life) it seems maybe 10 plus years ago my right tube must have twisted around an adhesion left from having my appendix removed when I was 3 (which makes sense, as I was in the hospital for a week with severe pain when I was 13 with what they thought was a twisted adhesion/bowel) but it must have been my right fallopian tube, but it was twisted and knotted, my right ovary was just a streak of scar tissue, and then everything was "glued" to my uretha, the two major blood vessels in my pelvic area and my uterus so he cleaned out a lot (I am left with my uterus, left fallopian tube and ovary. Thankfully. Although in a month I will have to do a hsg test to check my left tube). Now, he is thinking that maybe the ectopic is in my left side, because the right side was so bad, but we won't know for sure until the pathology report comes back. I was in the hospital for 3 days and 2 nights (should have been one night, but it took a while to manage my pain and stabilize my breathing).

Now when the doctor came in and said I needed surgery I panicked not so much because of having the surgery itself but because in Dec 2011 when I had surgery to have my gallbladder remover it led to a bad flare and diagnosis of PoTS. I was terrified of feeling that bad again and well It has been 6 days now since surgery and I am miserable. I called my OBGYN two days ago, who pretty much said I should be feeling better then what I am (I think he forgot I have dysautonomia).. I am still in pain when moving, and extremely dizzy when I stand up and exhausted. I am sure the combination of surgery and the methotrexate shot isn't helping. But I need tips or advice on how to get off the couch. I have been trying to drink a lot of water, am eating salt (and chocolate) like it is going out of style, I have also tried to push myself to walk some but can barely make it to the bathroom. Any ideas or advice would be greatly appreciated especially since I have to go back to work in a week and a half.

[looneymom]

So sorry to hear what you had to go through. You poor thing. Can you take off more time from work? Here are some suggestions but I really would consider taking more time off if possible. Your doctors need to think about the POTS side of this ordeal. Could you manage putting on some knee or thigh high compression support stockings? Might practice sitting in kitchen chair, standing up or walking for 10-20 seconds and try to increase everyday. Maybe set a goal to do this a couple times morning, afternoon,or evening. I know much of this is just going to depend on how much you can tolerate. Just don't over do it or it will take you that much longer to be able to get up and go again. My heart goes out to you. You're in my prayers.

[E Soskis]

It takes twice as long for us to recover from surgery as a "normal" person. If the physician did not address the dysautonomia while you were in the hospital, it will just take that much longer to recover. Anesthesia really shuts down the autonomic nervous system and it just takes time to crank back up. Since you had abdominal surgery, I would image the gastroparesis is flaring which makes it difficult to get enough nutrition to heal properly. If you are taking in fluids well and still feel dizzy when you get up, you are probably still pooling blood and your blood vessels are floppy. I don't know what dysautonomia medications you take but, you may need to have them adjusted during this recovery period. I always have to take more midodrine after surgery or a major illness. I usually end up having to take IV fluids as well - no matter how much I drink, it just isn't enough. The compression garments help but, may be too uncomfortable around your abdomen right now. Pain medication is a real catch-22: it shuts down gastric emptying thereby worsening the gastroparesis yet, you need something for surgical pain. Your MD can advise you the type of pain medication that may be best for you but, I always start with a small portion of what is ordered - I shave off a piece of a pain pill and put it with a Tylenol or advil-like medication - it usually provides pretty good relief but with fewer side effects - I would talk to your doctor about your symptoms and see if this would help. I know your surgery was unexpected but, if you have a game plan before surgery to deal with the dysautonomia, you will fare better after surgery. As far as going back to work, your physician should be able to give you more time off understanding that dysautonomia takes "normal" recovery times off the table - there is no "normal" for us! Good luck and hope you heal soon.

[badhbt]

So sorry to hear about your ordeal.

I agree with IVF if it is possible to get them it might help with your symptoms. I had major surgery in October and I think it just really takes time. I am not sure if there is any way to push the longer recovery of the POTS patient. I was suppose to go back to work in December, but I ended up having to take 8 more weeks.

Take care of yourself!

[Ash]

Thank you guys for your suggestions I have used almost all of them!

LooneyMom- setting goals that I had to be up and off the couch and complete a task has helped me be a little more up right and productive. I don't have compression stockings but am going to make an outing to the store tomorrow to try and get some.

E. since I was trying to get pregnant I had stopped taking all my medications other then prenatals (unless it was an emergency) but I do have a script for Midodrine and kinda forgot about it, so thanks to your suggestion I have been using it again. I did also get my pain medication switched to something else that I could tolerate better and have been trying to balance out the gastroparesis with diet and miralax.

I also talked to the Dr again as well as my boss and they both agreed to give me some more time off if I need. I just feel so guilty about it since in my career in means I have to reschedule my patients and I am already so booked out, but since I am registered dental hygienist and that requires bending right at my incisions I don't think I am going to be able to work the full days this next week. But luckily my doctor was a little more compassionate when I saw him for my follow up appt and he did say it was a major not a minor surgery plus with the dysautonomia I just need to listen to my body and go slowly so now I just have to work on not feeling so dang guiltily about sitting on the couch.

[Chaos]

Will they consider doing IV fluids to help you? Sometimes getting fluid into the vascular spaces directly makes a huge difference, especially when you are in a flare.

But, most of all, I think you need to take time. I know it's hard, but normal bodies still take a certain amount of time to heal no matter how much we want to make them heal faster in our "fast pace" society. And we abnormal ones will definitely take at least twice as long to recover. This sounds like it was a MAJOR surgery so you really need to be compassionate with yourself. Especially if you are trying to conceive again, you need to let your body heal as well as possible before you put more stress on it with another pregnancy. Easier said than done, I know, but still.... Do try to give yourself a break...both physically and in the guilt department.