cathielu Posted May 16, 2007 Report Share Posted May 16, 2007 I want to share with everyone the miracle in my life - I have found the right physical therapy to restore the functioning of my blood vessels and eliminate my life-threatening orthostatic hypotension. I have been gradually propping up my bed and wheelchair night and day very slowly over a period of months. Eventually I was able to start standing for longer periods of time. Now my circulation is normal, and I am starting back to college. I have been jogging two miles per day, and am going to enter a community 5K (3 mile) run this Saturday. All this after having been partially or fully bedridden for 17 years, and having two near-death experiences on tilt tables. I even have a date for tonight! :^) I have had some improvement in my three low back injuries too. Jesus really has helped me through this, and is still blessing me.Love,Catherine Cook Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 16, 2007 Report Share Posted May 16, 2007 Cathy--that is great news. I remember your photo on faces of DINET and your description you provided. You had such a happy look on your face despite your prone position and obvious injuries. I am glad to know that you have improved so greatly.Katherine Link to comment Share on other sites More sharing options...
doctorguest Posted May 17, 2007 Report Share Posted May 17, 2007 Congratulations on your recovery! You state that you found the right physical therapy to restore your orthostatic tolerance. Can you share what type of exercise have you been doing, other than propping up your bed? Have you been taking any medications for orthostatic hypotension? You also mention that your circulation is now normal. Have you had any studies to demonstrate this, like a repeat tilt table test? I think the answers would be very helpful to others. Thanks. Link to comment Share on other sites More sharing options...
Maxine Posted May 17, 2007 Report Share Posted May 17, 2007 Wow-----congratulations Catherine! I'm so happy to hear that. After seeing your photo I was sad to see you had to be in the wheel chair----and reclined back also. I'm so happy to hear you have had such improvement in your OI.I'm certain I can't run, but I do try to keep pushing---(in the sense that I try to keep as active as my body will allow), and I think this helps me from being bed ridden. I have to recline often not just because of OI, but the gravity kills my spine/cranial instability issues. I also find elevating my feet helps in a pinch. I have recently found out my OI/POTS is most likely caused by the EDS because I have vascular involvement-----and unfortunately it also affects my spine, and the rest of my joints and ligaments, so running is definately out for me.Good luck to you----------------I will pray for you that this continues.Maxine :0) Link to comment Share on other sites More sharing options...
Sophia3 Posted May 17, 2007 Report Share Posted May 17, 2007 Congratulations on your recovery! You state that you found the right physical therapy to restore your orthostatic tolerance. Can you share what type of exercise have you been doing, other than propping up your bed? Have you been taking any medications for orthostatic hypotension? You also mention that your circulation is now normal. Have you had any studies to demonstrate this, like a repeat tilt table test? I think the answers would be very helpful to others. Thanks.i am happy for your vast improvement but am more curious in the exact specificities to your recovery.Please share as your post is very general in tone.Also, PROPPING up the bed made me WORSE but it took me MONTHS to realize it...but I felt even worse waking up than I normally do...I have since found out when supine my BP can get VERY LOW with just normal BP when standing but Tachycardia from 120-140.My cardiologist that did the TTT back in 1999 briefly even mentioned he had read an article where the elevated feet helped some people when sleeping but finding that article is VERY RARE and he could not recall where he had read it. I was afraid to try that on my own but the elevated head of bed was HORRIBLE in the long run. Look forward to an update. Link to comment Share on other sites More sharing options...
yogini Posted May 17, 2007 Report Share Posted May 17, 2007 That's quite a recovery! This is great news, and definitely gives us all hope for improvement. I too would love to hearing more details on your treatment and physical therapy. Link to comment Share on other sites More sharing options...
Rachel Posted May 17, 2007 Report Share Posted May 17, 2007 Catherine,That is wonderful news! Thanks for sharing. I'm happy to hear about your recovery. That's great that you can go back to college and even enter a 5K run!!! Wow! Enjoy it all! And have fun on your date tonight. Rachel Link to comment Share on other sites More sharing options...
nadine Posted May 17, 2007 Report Share Posted May 17, 2007 Catherine- This is amazing to read. Please, share more details, if you don't mind regarding your recovery and treatments.Thrilled for you. I can't imagine the feeling you must have experienced on your first run. It is difficult to remain hopeful at times, so your story provides that hope and inspiration. I hope you had a wonderful date, maybe a little dancing? Link to comment Share on other sites More sharing options...
cathielu Posted May 18, 2007 Author Report Share Posted May 18, 2007 Hello! Thank you. The date with Ray was very nice. We had a good conversation. He is very friendly and cheerful. : ) I am also going to go dancing tomorrow night. My treatment for my orthostatic hypotension began with propping up my bed and wheelchair night and day 2" every four days, using cement stepping stones and cinder blocks at the head of my bed, with the foot of the bed against the wall. Sometimes my resting heart rate went up to 100 and stayed there so I had to lower the bed 2" for a few more days. I also started jogging 2 minutes four times a day. At that time, it was not safe for me to sit up or stand or walk, even for a few minutes. I also wore firm support hose to keep the swelling down in my legs and feet, which was severe without the hose. After 6 weeks my bed was almost 45 degrees propped up. I was able to sit up all day, and start going for long walks. Over the next few months, I stood for longer and longer periods of time until my circulation was completely restored. Now I stand for at least 2 or 3 hours per day to keep my blood vessels exercising. My thinking is much clearer, and I have a lot more hope now. I am going to have a repeat echocardiogram and a tilt table test. The last echocardiogram showed leaking of the mitral valve, because my blood pressure was so low that the heart was not fully stretched to its normal size, and the valve flaps were overlapping and not properly sealing. I also got support from many friends and leaders at the Church of Jesus Christ of Latter-day Saints, which helped me a lot to cope.I hope everyone with this condition feels better soon. Love,Catherine Link to comment Share on other sites More sharing options...
cathielu Posted May 19, 2007 Author Report Share Posted May 19, 2007 Hello friends,I am so grateful for my recovery! Gone are the terrible attacks of fatigue after eating (sometimes I would pass out). Gone are the feeling of always being cold, the chest pain, the difficulty concentrating, the hopelessness. Now I don't lay down except to sleep, and I am sleeping horizontal again, and not having to wear the support hose. I have been reviewing chemistry these past two weeks to prepare for my summer chemistry class. It is all coming back to my memory, and I can think so much more clearly now, and can study a lot more. Today I ran in my church's 5K (3.1 mile) run. I did it in 34 minutes, with jogging the whole way without slowing to a walk. This is the first race I have ever been in. The men are so much more friendly now! I am finally living the life I never had. Love,Catherine Link to comment Share on other sites More sharing options...
pat57 Posted May 21, 2007 Report Share Posted May 21, 2007 awesome! Link to comment Share on other sites More sharing options...
dizzygirl Posted May 23, 2007 Report Share Posted May 23, 2007 It so wonderful that you where able to have such a miraculous recovery..i know youve got to be enjoying your new found freedom ...congrats sweetie thanks for sharing your sucess story with us Link to comment Share on other sites More sharing options...
cathielu Posted June 9, 2007 Author Report Share Posted June 9, 2007 Dear friends, Hello! Has anyone tried the propping up therapy? How is it going? It takes a long time, but is worth it. I had to be very careful because sometimes I propped up 2" too far and then my resting heart rate was up to 100 bpm and I was having chest pain and not able to sleep because of the adrenaline that my body was pumping into my bloodstream to keep my blood pressure up. Then I had to lower down 2" for a few more days, and was able to keep improving over time. I love you all and hope things are going well! Love,Catherine Link to comment Share on other sites More sharing options...
roxie Posted June 9, 2007 Report Share Posted June 9, 2007 cathy, i am sending you a pm with some questions!!!Madeline Link to comment Share on other sites More sharing options...
cathielu Posted June 13, 2007 Author Report Share Posted June 13, 2007 Hello! Here is some more information.I started jogging 2 minutes at a time right away, then had to lie right down. I did that 4 times per day. I have some low back injuries that make it painful to lie partially propped into a sitting position, so I didn't sit up until I could sit all the way up. I slowly propped up my bed 24 hours per day over six weeks until it was up on 6 8" cinder blocks under each end of the bedframe at the head, which was 4 feet high. It could be done just during the daytime, but recovery would be slower. I saw improvement within a few days, and slowly improved, with some new things I could do each week. I also had heel pain, so I had a thick foam pillow under my feet, and even stood on the balls of my feet most of the time.One of my primary care doctors recommended propping up. We didn't know that my condition would eventually completely resolve with this treatment. Heavenly Father brought it back to my mind and inspired me that I would finally succeed if I kept trying.Every day I stand up a total of at least two hours (while getting ready, eating, and other things). That keeps my blood vessels exercising. I also make sure that I don't lie down at all except to sleep. If I need to relax during the day, I sit.I exercise a lot now, which is stress relieving for me. Especially bicycling is a wonderful freedom. I still feel very sad over the suffering I have gone through over these years and want very much to help everyone else who is not getting the healing that could be theirs. I have submitted complaints to the hospitals who left me on tilt tables to suffer to the brink of death, and led me away from the path to healing that could have been mine. I am still trying to find peace over having been mistreated. I pray a lot about it. I am not sure what path my life will take yet, but I hope to be married and have children. Love,Catherine Link to comment Share on other sites More sharing options...
cathielu Posted June 18, 2007 Author Report Share Posted June 18, 2007 Hello everyone! I have been hoping these past several months that I would have a complete recovery of my health by following my blood vessel physical therapy. I have improved so much, and no longer have dangerous swings in my circulation, and am no longer confined to a bed or wheelchair during the day. I am even able to exercise every day, and am in better aerobic condition than ever before, which is exciting. However, I am still having a lot of fatigue which is preventing me from going to college or work. I keep trying to go back to school, but can't keep up with the workload. I have been interviewing for jobs lately, and exploring all the options, even for part-time work, but am realizing that I'm not in good enough health to work either. It is so confusing for me to find my path in life with this condition. It is hard being different, and having such a discouraging problem. Sometimes I want to hide. I am glad that I have found the best arrangement to strengthen my blood vessels as much as possible though. I am doing a lot more socially with my church singles group.I hope that you all are doing well.Love,Catherine Link to comment Share on other sites More sharing options...
flop Posted June 19, 2007 Report Share Posted June 19, 2007 Hi Catherine,it's great to hear that you are able to get out and about more now. It must be such an improvement from how you were when you posted your picture on the faces of dinet website - you must put an uptodate one on there.Try not to stress too much about getting a job yet, you have made remarkable progress and need to consolidate your current situation before stressing your body too much. I've found that doing voluntary work is good - it makes you feel useful and you can usually choose your hours to fit arround your health. Does your church have anything you could help with like cake sales or coffee mornings? Sometimes a gentle introduction through voluntary work can pave the way to a part time job - it lets you get used to demanding things of your body when the job dictates rather than when you feel well enough to do something.I'm lucky enough to be able to work in a modified job but often get the feeling that I really just want to curl up and sleep for a few hours. Knowing that you can't do that at work can be tough.Take care,Flop Link to comment Share on other sites More sharing options...
cathielu Posted June 28, 2007 Author Report Share Posted June 28, 2007 Hello! I am still working on getting in better shape and improving my energy level and strength. Yesterday I bicycled 26 miles. This morning I ran one mile in 10 minutes, a new record for me. I am also doing some stretches to regain my flexibility. I am seeing gradual improvement. When I am able, I might work part-time as a nanny.Love,Catherine Link to comment Share on other sites More sharing options...
flop Posted June 28, 2007 Report Share Posted June 28, 2007 Hi Catherine,cycling 26 miles then running a mile the next day - that really is remarkable progress, I can't really run for a bus without wiping myself out for a few days!I've just been for an induction session at my gym so I'm hoping to do some gentle supervised exercise to try to build up my stamina and standing tolerance a bit.Keep us updated on your progress, it's amazing to hear your recovery and gives all the rest of us some hope.Flop Link to comment Share on other sites More sharing options...
shannon Posted June 28, 2007 Report Share Posted June 28, 2007 I am a little behind on the forum, so I just got to reading this post. Just wanted to tell you that I nearly cried when I read it. I am just so happy for your improvement in health. Thanks for sharing.Shannon Link to comment Share on other sites More sharing options...
persephone Posted July 1, 2007 Report Share Posted July 1, 2007 I don't mean to sound disrespectful, but a pulse of 100 is actually not that bad- and is only JUST tachycardic. A pulse running at 100 would not cause symptoms in many people. Was your Orthostatic Hypotension really life threatening? My BP flatlines and my pulse can top 250 bpm but it's never been called life threatening. Did you have other complications or something? Link to comment Share on other sites More sharing options...
goldicedance Posted July 1, 2007 Report Share Posted July 1, 2007 If I could cycle a block, I would feel grateful. If I could walk a block without getting short of breakand tachycaradic , I would be so happy.You have make such progress. No wonder you may be tired--25 miles cycling, running a mile...that would make anyone tired.You are blessed! Link to comment Share on other sites More sharing options...
roxie Posted July 1, 2007 Report Share Posted July 1, 2007 Has anyone tried this therapy? If, so how is it going?I'm a dying to find out!!!Madeline Link to comment Share on other sites More sharing options...
cathielu Posted July 2, 2007 Author Report Share Posted July 2, 2007 Dear Persephone,Thanks for asking. I have been asking Heavenly Father these serious questions, and I am grateful to have Him help me recover and understand what has been happening. A resting heart rate of 100 was the first sign that my circulation was faltering, so I knew that I was propped up too far too soon. When my resting heart rate was 100 then I was having severe fatigue and chest pain. I really did have two near-death experiences on the tilt table, with my systolic blood pressure quickly dropping into the 40s and my heart rate speeding up, then slowing into the 40s because it was not receiving adequate blood supply to function normally. That was a terrible experience. Love,Catherine Link to comment Share on other sites More sharing options...
cathielu Posted July 2, 2007 Author Report Share Posted July 2, 2007 Dear Goldicedance and others,Thank you for your positive comments! It is very hard work to build up my strength and energy again, especially without the understanding of my doctors of what all I have been going through, and having to arrange my therapy myself. I am still running one mile a few days a week. I want to be stronger and more energetic than ever before. Love,Catherine Link to comment Share on other sites More sharing options...
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