Clairefmartin Posted November 10, 2011 Report Share Posted November 10, 2011 Well I finally have a laptop again so can read & participate in this forum, have been out of the loop for a long time. Was in hospital for 9 months of 2011 dealing with pregnancy setting off my POTS in the extreme. Then I developed multiple DVTs/blood clots from a PICC line in my arm, a dozen pulmonary embolisms, and a clot in my heart. Sooooo....they had me basically on bed rest for 9 months. Only walking I did was a step or two to get to the bedside commode. My POTS was so bad that I was passing out constantly during the 2nd trimester, and my heart rate would go from 75 to 160 upon standing, and I had vasovagal events for the first time (very scary!).Anyways, I made it through induction and birth somehow (it was horrible and terrifying) and the baby is gorgeous and healthy (thank God!), but I am completely deconditioned from these idiot doctors making me stay in bed after I told them I needed to keep moving as much as possible. PT wouldn't even work with me due to the liability of a pregnant lady on blood thinners falling.I have been doing home PT in small amounts for the last 10 weeks since having the baby. It took me 3 weeks just to recover from birth, but I'm able to walk a bit and get around in a reclining wheelchair most of the time. I take care of the baby (my 3 year old goes to daycare/preschool) while my husband is at work and am now alone during the day. Its rough. If I accidentally overdo activity, I pay for it big time and can't move/crash. I'm getting very lonely and impatient because my POTS was not too bad before this situation. I can't get out of our building due to stairs (last time we tried my BP was 68/58 and I was barely conscious), so I'm stuck at home until I can conquer the stairs. If anyone has suggestions for reconditioning I'd appreciate it. Its just nice to be back on here reading and not feeling quite so alone with this terrible disease. Claire Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 10, 2011 Report Share Posted November 10, 2011 Welcome back. I am sorry you had such a very difficult pregnancy. My first and only was difficult too, although did not experience the life-threatening issues you did (until delivery). That is great that you had a successful induction. That should help with recovery (vs having a c-section).Everyone is different but for me, I did not start to improve until I stopped breastfeeding..and also was able to get 7-8 hrs sleep + a nap each day.After so much inactivity you are understandably de-conditioned besides also being affected by POTS.If your doctor is ok with exercise, and it is generally good to exercise with POTS, you still may find that too much will land you in a relapse. I know I had to go very slowly for many months to re-condition after pregnancy--and I was never on bedrest (just pretty weak in the last few weeks, so lay down for much of it). I found I was able to do some floor exercises in the months after giving birth. Walking (for exercise) and other upright exercise wasn't possible until much later.Let us know how you are doing. Quote Link to comment Share on other sites More sharing options...
lieze Posted November 10, 2011 Report Share Posted November 10, 2011 What I have tried to do is just what I need to do for the day like if it's running a child to preschool to do that resting before and after. So I focus on the needs of the day and try to save up for it.With two little ones that is a busy job just with diaper changes and keeping an eye on everyone.It creates a lot of exercise and activity just doing the bare minimum I would think.Hang in there and let us know how you are doing. : ) Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted November 10, 2011 Author Report Share Posted November 10, 2011 Thanks - and it is actually quite a bit just taking care of the baby, my physical therapist reminds me of that when I am already wiped out by the time she gets here. I am doing basic exercises but just the act of walking is a work out! I used to feel strong, I hate this feeling of weakness. Thanks for the encouraging words. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted November 13, 2011 Report Share Posted November 13, 2011 I had the most debilitating summer of my life. The cardiac specialist explained it was due to all the days with high temps and humidity. I spent most of the summer on my sofa with legs elevated in the AC. The least thing I would try to do would send me rushing (if I made it before passing out) to floor to lie down or to sofa.My cardiac specialist has me on Physical Therapy (I go 2 times a week) to build up strength and endurance. He ordered the tredmil in the aquaciser. He also told me I could use a stationary recumbent bike. It is a slow process but I do think it is helping and my therapist said that it is. He was fearful since my cardiac specialist said there will come more times that I have no warnings of fainting, so he had planned to use a life jacket on me but he forgot it. So he cinched a safety belt around my waist and he held the belt through my sessioons. I also learned (after a little spell after the second session) to hand him my bottle of Mestinon that I can take with first sign of syptoms, so that he could get a pill to me right away (even though it takes 15 minutes to work and my syncope happens way before 15 min.). I am a bleeder so that added another concern. But actually, we had a plan and so far, so good. The temperature of the water is kept at 93 or 94 degrees because of fibro and arthritis (another problem as it will dilate vessels). But I find it rather relaxing and almost like a gentle swim. They pace the tredmil at what is comfortable for you. They have jets going. (I'm not allowed in hot tubs or to take hot baths or showers). The aquaciser has handles you can hold on to all the while you walk if you wish. I finally got bold enough to take advantage of the water and let go of the handles and use my arms with walking too since they also get hypotonic.(I used to be a daily exerciser--10 miles/day on standard bike, or a 30 min workout on the treadmil and some exercises with weights, then had to stop all that and go to stationary bike but with problems with BP on that, with this summer, had to wait til they got all this figured out). Now I have all this equipment (I really, really, really miss biking) it sits and I had to shell out for a stationary recumbent bike. DS doesn't get it at all--he asks 'what are you going to do with the stationary bike or the treadmil, or the bike?'. Being a bleeder with this, biking probably isn't ideal anymore. I'd like to sell the stationary bike (it's portable and folds for storage) but nobody wants to give anything with this economy even though it is in like new condition. I feel the same way about the treadmil--I just can't stand the thought of giving it away. But even before I was 'deconditioned' I always would hold on to the treadmil as my legs felt heavy and I didn't trust that they might not give out on me during my varying programmed workouts. It sits in a room that is not heated so I have to heat up the area before--going into cold to warm it up--wearing warm clothes and jacket and gloves that I can peel off as I walk and the cold makes the nose run like a faucet. So it's probably not ideal either--especially if I were to pass out back there (solarium). So I suppose the recumbent bike it is. I just feel like by giving away the other things I loved to do (even though we could use the space) is just such a defeating feel to me.I wish you much success. You have the determination. You can find something to suite your niche. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted November 13, 2011 Author Report Share Posted November 13, 2011 RubyTuesday - thanks for the breakdown, the aqua training sounds neat. At the hospital we tried (the OB nurses - since PT wouldnt work with me) a foot peddler, which seemed to work ok, since if I needed to I could recline and use it. I may and try to find one or see if insurance will get me one (yeah right . I hear you on ot wanting to get rid of your stuff - and actually it may be good motivation to keep going so you can use it again, hopefully you'll feel better in the future and be able to.Thanks and good luck! Quote Link to comment Share on other sites More sharing options...
bkweavers Posted November 14, 2011 Report Share Posted November 14, 2011 Congratulations on the new baby and on surviving all of that! You are a super woman! You've been through so much and I admire you for that. I was on bedrest for 5 months at home but don't have autonomic issues and that was hard enough. I know you need to recondition yourself but I think you should also keep in mind all that your body has been through.I would take it easy on yourself and work yourself very slowly. You don't want to overdo it right now with having to take care of a baby and a 3 yr. old. That's exhausting for anyone! I would think getting in water would be good for you or a stationary bike.Good luck and God bless you and your family!Brenda Quote Link to comment Share on other sites More sharing options...
misstraci Posted November 14, 2011 Report Share Posted November 14, 2011 I'm so sorry to hear about your experience. Congrats on the healthy baby and I'm happy that you are well and out of the hospital. What caused all the blood clots and PE's if you don't mind me asking? I don't have any wonderful suggestions for the reconditioning however. Of course just take small steps and know that they add up over time. Whatever you begin with, whether that be a timed "exercise" or one with repititions. First week do 5 minutes or 5 reps and then next week do 8 minutes or 8 reps, etc. Good luck!!! Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted November 14, 2011 Author Report Share Posted November 14, 2011 Misstraci- The clots were caused by a PICC lines that was not cared for. Insurance wouldn't pay for me to stay in the hospital, so they sent me to a "rehab" aka nursing home to continue IV fluids, and they never flushed or used heparin (blood thinner) in the line. It caused massive clotting along the line, They refused to listen to me when I told them something was wrong, and had me messaging aspercream into the area where my jugular was clotted off almost completely, which caused the clots to break off and migrate into my heart and lungs. It was a mess and almost killed me! My new goal in life is to not have myself or anyone I love in a nursing home Quote Link to comment Share on other sites More sharing options...
misstraci Posted November 14, 2011 Report Share Posted November 14, 2011 Oh Claire, I'm so sorry! I'm not sure if you have already but looked into an attorney becaues of their neglegence in your treatment. That could have been prevented but I'm happy that the worst didn't happen and that you are here and able to share your story with us! Quote Link to comment Share on other sites More sharing options...
kclynn Posted November 14, 2011 Report Share Posted November 14, 2011 Claire, Your baby is beautiful! What Joy You need some company for sure but that is hard, too. Can I suggest you call around to some of the mom's groups that may be in your area? I would explain your situation and see if there might be another new mom who would come for "playdates" at your place? Explain that a short visit would be very welcome but long visits are beyond what you can handle. I know dysautonomia can be very lonely. It is just a thought. Quote Link to comment Share on other sites More sharing options...
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