New topic

[sgriffin]

Hello Everyone,

 

New topic...what did you do to start your life again? I know we are all survivors and we have different disabilities but where did you start? Did you take classes, go directly to work and if so what sort of work, or did you just decide to stay home with the family and take advantage of your new lease on life?

 

I'm kinda struck on what to do first...I'm coming up on my 5th month post stroke and will probably not be returning back to work as planned in the 6th month...I've decided to have the PFO closure. Problem is I really don't feel like doing anything drastic right now because I struggle with my good and bad days, but I feel I need to be doing something...I just don't know what.

 

I tried walking a few blocks...I did that 2 days in a row and it wiped me out so bad I decided that was not a good idea LOL . I thought I was ready to build up some stamina...guess not.

 

Some suggestions please and thank you all as always.

sgriffin

[Phyllis4732]

There are several people on this site who have had PFO's and have had the closures done. I hope they see your message. Since I have not had one and therefore could not tell you when you would know the right time to do the procedure, they certainly would. I will say that those I've read about seem quite pleased and also seem to be going on with their lives.

[jasco]

sgriffin;

 

congratulations on your progress thus far! That took some hard work on your part. Keep it up!

 

Jasco

[shaylerobins]

Hi,

 

The first step, with your doctors approval is have the pfo closed. The second step is to have a good therapy program. When you get home after the procedure begin by walking in your home. When you can do that easily, try walking a short distance outside. As you gain strength, you can do more. Stretching exercises in the morning and evening are key to improving your physical condition. Lastly, read this board. There are many threads regarding PFO's. Jean can assist you in locating them.

 

Best of luck,

 

Shayle

[jriva]

 

 

Shayle,

 

I tried to find all the message board topics on PFO recently, but the search engine will not search with words less than 4 letters long, so I was not able to sift through them in the usual way. I, too, know there are many topics in the Survivor Support forum but I can't provide sgriffin with any links. Sorry, I tried! I would suggest just opening up that forum, broadening the date at the bottom to "show all" and just start reading through the topic titles.

 

Jean

[marlen]

HI SGRIFFIN,

 

AFTER THE INITIAL SHOCK WORE OFF, I DECIDED I BETTER MAKE THE BEST OF THIS SITUATION. I WENT TO OUTPATIENT THERAPY UNTIL THE INSURANCE RAN OUT. I DID SOME SEARCHING AND FOUND A WONDERFUL WATER THERAPY CLASS THAT MEETS THREE MORNINGS A WEEK AT THE YMCA. I'VE BEEN ATTENDING FOR 17 MONTHS.

 

I WENT BACK TO WORK (SELF EMPLOYED) FROM MAY 04, UNTIL OCT. 04. THEN MY WIFE AND I HEADED TO FLORIDA FOR THE WINTER. WHEN I CAME BACK I DECIDED I DIDN'T WANT TO WORK ANYMORE. I WANTED TO SEE THE GRANDKIDS MORE AND JUST ENJOY LIFE.

 

WE SOLD OUR HOUSE LAST WEEK AND DOWNSIZED. MY STAMINA HAS RETURNED AND I CAN SKIP THOSE USED TO BE NECESSARY NAPS.

 

IT TAKES A WHILE FOR SO MANY THINGS TO RETURN. I KNOW I'LL NEVER BE 100%, SO WHAT? I DON'T MISS MUCH OR SHY AWAY FROM ANYTHING. I FAITHFULLY EXERCISE EVERYDAY, TAKE MY MEDS AND ALWAYS STAY POSITIVE. DON'T STOP WALKING BECAUSE IT WIPED YOU OUT. BUILD UP THE STAMINA. SON YOU'LL BE COUNTING MILES INSTEAD OF BLOCKS.

 

YOU SEE, YOU CAN'T START LIFE AGAIN. YOU NEVER STOPPED LIVING. IT'S WHAT YOU MAKE OUT OF EACH DAY THAT COUNTS. SO I LIMP, MY ARM AND HAND AIN'T WHAT THEY USED TO BE, AND I DON'T FULLY FIT IN WITH MAINSTREAM POPULATION. BUT I'VE GOT MY HANDICAP STICKER, I CAN STILL LAUGH, AND I'VE BECOME A PRO AT DRIVING MY WIFE NUTS.

 

HANG IN THERE. YOU'VE JUST STARTED CLIMBING THE MOUNTAIN.

 

MARTY

[cnemec]

what is ''patent foramen ovale' ? I don't understand.

 

congrats on what you've accomplished. As said, walk shorter distances, maybe for more oftem. Stretch. Do balance things.

 

I want to work but haven't found a job. I don't interview well anymore. The one job I did get, I didn't have the stamina for 9 hour days or strength to do what they needed me to do. But something is out there, somewhere, maybe not here.

 

Be patirnt with yourself, rest is important to heal your brain.

 

--carol

[jasco]

Congratulations Marty! Enjoy your new home, grandkids & take time to smell the roses!!

 

Marilyn

[minime45]

Hi sgriffin,

I too had a stroke 2yrs ago due to a pfo. I went back to work after 6mths but very part time and I slept on my days off. Now I am back to my normal part time hours ( I have family commitments as well) but still get tired if I do too much. Yes it is frustrating but I am getting there slowly...

 

I have not had mine closed yet. My neurologist wouldn't even contemplate doing anything until I was at least 6mths post stroke. Why a decision has not been made 18mths on is a long story. So for now I am on aspirin and trying not to think about it too much.

 

I am not really sure why this type of "hole in the heart" doesn't cause any symptoms until you have a stroke.....if you see what I mean. I was 45 when I stroked, have two children and no other risk factors..apart from stress

 

So keep on plugging on and you will get there eventually. Pat your self on the back and look how far you have come rather than how far you have got to go.

 

Good luck and the op is a breeze...so I have heard

 

Mary

[mary7]

Hi Sheila,

 

I have had the closure...5 months ago on the 9th.

We talked on the phone a few weeks ago. You can call me anytime.

 

If you want to know of my experience...I had my closure done as part of a clinical trial ...closure II at The University of Pennsylvania...same trial nationwide. I didn't remember if we had talked about this but as I type I vaguely remember some things. Feel free to call. I am not working and home most of the time.

Mary

 

 

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[PVINSON5]

I DON'T KNOW WHEN I CAN BE INDUSTRIAL ENGINEER (18 YRS.)

 

I WATER THERAPY TEUS. AND THURS.

 

I USE TO PHYSICAL, OCCUPATIONAL AND SPEECH (2 YRS. 10 MOS.)

I WOULD LIKE TO SPEECH ON COMPUTER?

 

 

 

I FAITHFULLY EXERCISE EVERYDAY WITH SHOULDER SLING AND FOOT/ANKLE CAST. TAKE MY MEDS (BAYER ASPIRIN AND VERAPAMIL 180 MGS.) NO MORE. STAY POSITIVE.

 

SO I LIMP, MY ARM AND HAND AIN'T WHAT THEY USED TO BE, AND I DON'T FULLY FIT IN WITH MAINSTREAM POPULATION. BUT I'VE GOT MY HANDICAP STICKER, I CAN STILL LAUGH, AND I'VE BECOME A PRO AT DRIVING, LEFT SIDE.

 

I HAVE APHASIA. I USE MY COMPUTER AND DYNAVOX.

 

TO ANYONE WHO HAS HAD A STROKE, MY PRAYERS ARE WITH YOU. I WANT TO ENCOURAGE YOU TO GET UP AND GO ON WITH YOUR LIFE. (I COPIED WITH MARTY.)

 

PATTY

 

 

 

 

[Phyllis4732]

Sandy, what surprises me is that these PFO's that didn't close show up pretty late in life. Any explanation for that? I can understand it happening to young children, but here we find them in their 20's and up.

[mary7]

What the docs told me was that they close enough as to not cause problems in daily life...theres kind of a flap that normally closes over the hole shortly after birth and seals soon after leaving 2 separate chambers. Ours never sealed and the "flap" is able to open and allow bloodflow between the 2 chambers. Usually not a problem unless a clot goes through...sandy gave a good lesson on the cardio-pulmonary blood flow...

Years ago the only treatment was open heart repair. These new devices are able to be threaded through the arteries in the groin and through the hole, opened something like 2 umbrellas facing each other, the heart grows scar tissue to keep the device in place.

I had my closure 5 months ago and will be having a TEE to check the healing and see if the closure is complete.

I had never heard of these causing problems in adults til mine did.

Guess having the stroke taught me ...

[sgriffin]

Just to add to mary7 very good explanation of PFO not closing after birth...MDs are learning that usually in adults without any medical problems and suddenly have a stroke most often have a PFO. A TEE is done to determine this and this is usually the case...problem 1 out of every 4 adults have this problem and can live life and never know they have a PFO. Scary I know I'm still trying to come to grips with this. I've also learned that if you don't have a reason for a TEE one will never be done, MDs don't do them just because...its not a part of a regular physical. In my profession you have to have physicals yearly and keep certain inoculations (sp) up to date. I thought I was very healthy.

 

Thank you everyone truly this site is excellent for advice and encouragement. Keep posting I find this is being helpful to not only me but others as well.

sgriffin

[cnemec]

Thanks all for the PFO explanation, I guess I didn't have it. I still don't know what caused my stroke.

 

Carol

[littlebuger]

Got picked for the medical study .. wasn't picked for the implant ..oh wish I did.. got my second opinion and the DR has recommended closure with the open heart surgery .. was told the hole was large ..and not to wait for another way to get closure with the implant ..

they were gping to ask for compassioniate for me but there weren't sure the study medical company would approve it.. so rather than waiting til who nows when I'm going for closure with the open heart surgery.. The stress of waiting is terrrible .. never knowing when the next stroke will happen..

hope everyone is doing great ..

Great day

[mljmsw]

I am 3+ years post stroke

 

I started the going back to work efforts within the first four months post incident.

 

I worked a few hours a week until I'd worked up to 20. My boss wouldn't let me come back fast. She wanted me to be successful so made me go slowly. My physiatrist agreed with her and had me go slowly. I now job-share, working still half-time. I doubt if I'll ever go full-time again.

 

mljmsw

[pprovost]

Hi S,

 

I guess the 3 p's are a good place to start

 

Planning, Preparing and Prioritizing

 

 

5 months post stroke is very soon to return to work. you are no doubt still very fatigued. When i had my stroke I figured i would be back to work in about six months because my short term disability insurance would be finished then. My doctor was against me going back to work at all. She warned me that I would need 14 hours to accomplish what I used to do in 8 hours this immediately raised a red flag because before my stroke I was doing about 2-3 hours overtime every night. My insurance evaluator visited me and told me that they would not force me back to work because with my disability( hemiplegia) I would not be competing on a level playing field. This put retirement in a new light. I could re-invent myself by living in a way that prioritized a healthy and happy lifestyle.

Online stroke support got me some meaningful volunteer activity. The chatroom has been great for socializing. I used to play piano but without both hands functioning. I no longer found music as satisfying. So I took up oil painting. We all need a passion so this activity has added a new creative dynamic to my new life post stroke.

 

I hope that you will take time to reflect about what makes you happy. After a stroke you certainly deserve to be happy. Then go for it. There is life after stroke. Do whatever you need to do to prevent another one.

 

best,

Pat

[littlebuger]

Hi everyone .. it's going to happen for me CLOSURE OF THE PFO .. after not being picked for the implant I"m very pleased about that choice.. not to get me wrong..

the study's concern is the study ..

 

I did the (second and third opinion )cardiologist ... WOW had another test to reveal how large the hole was . Cardio- catherization was very helpful ..

Dr recommend closure by surgery . he also old me implants are not anyway means of closure he told me that implants are still in study ..

 

I was told the best way to do closure is open heart surgery... with someone with a larger hole.. was told once the closure is closed that is the end .. no wondering if or when... how long.. it's closed and done..

 

he also told me the closure doesnot always mean it was 100% ..were the stroke came from..but it was a start and could continue to be worse.. I got so mcuh information .. I learned alot on how things work . don't get wrong.. I've been told a stroke is very hard to find where it came from.. but the PFO is one of factors and must be closed .. I'm at risk for another stroke and a huge at that.. the size of the PFO is very important when you need to have closure ..

please everyone if I had one thing to comment on is get a second .third opinion.

 

Surgery is next Thursday.. I'm told they will take the linning of the heart and make a patch to close ..

best way to close the heart . with no doubts ..

 

Good luck to all. if anyone would like PM me I"ve learned so much seeing another view of my PFO..

 

Hugs Joann

[fking]

Joann, I'm happy that you got the information you needed to make your decision on how and what you wanted done to fix the problem. I'm amazed you got scheduled so soon, that in itself is also great news.

 

It pays to shop around for opinions you understand. It gives you peace of mind and better able to accept your stroke. We will still be here for you when its all said and done. Let us know your feelings after the surgery.

[littlebuger]

Scooterman.. ty for the support .. stress is still here but not as much now that I know the PFO is getting fixed.. it makes things alot easier to know I don't have every day to wonder if this is the day of another stroke.with a having a huge wind fall of bad things .. .

 

 

great day

Joann

 

 

[bstockman]

Glad to hear the outcome is better for you. sounds like you found some good doctor's to explain the procedure and all.

 

Will be keeping you in thoughts and prayers for Thursday.

 

Best Wishes,

Bonnie

[HostAsha]

I feel quite secure since I closed my PFO, I was one of the too young for stroke, but since now PFO has been closed and bubble study came negative, I m quite relieved though I m insisting on followup TEE to get my mind to rest and not think any negative things. I would also recommend stay at home for little while rather than rushing back to work too soon, and once if you are at work and don't perform then layoff happens in a instant in this economy, so I would suggest to take it easy for few months, and start slowly, and build up your strength at going back to work, like start part time and then eventually increase your hours

 

Asha

[littlebuger]

Ty for all your suppprt . dh does plan on staying home ..one year ago last July 2004 injured at work .. needed to have neck &back surgery stablization from L-5 all te way ti S1 , Mar 2005. so I;m still on workmen's comp and trying to get the healing process over . along with nerve damage in the L-5 which has effect my right leg .. Then came July 5-2006 A stroke and another Sept 16th 2005.. so II'll be not wondering about going back to work after the open -heartt surgery and after the recovery from all .I will be retiring .. so I'll have alot of time to get myself back to normal I pray for that ..

It'a been along haul for me .. I told myself if I can deal with the back surgery believe me it was horrible the body cast & pain ... I still am wearing a spine stimulator ..... I will survive the open-heart surgery .. I"m thankful that my heart does not have any defects ..

while I'm MIA from the board ,My thoughts & prayers with be with all of you..

Take care all of yu

hugs Joann

[sgriffin]

Hello to all,

 

I had my PFO closed and thought I would update those interested. I felt really sick the first night like I was having a stroke all over again...I guess my body was just getting adjusted to the graft. The procedure was done Oct 11th and as of today I am beginning to feel better. I understand its a process and have tried to take it easy. I must admit I had chest pain that I didn't feel was a heart attack (I didn't have any symptoms), but it was discomfort on movement. I had an echo done and everything was fine. The doc mentioned my graft was bigger than expected and could cause some discomfort.

 

The fatigue I have heard about did not hit me until a few days after the procedure, which I am not too sure was related to the procedure or just one of stroke symptoms. The migraines are pretty bad which I was told would happen for at least the first 30 days or so...so I deal with them.

 

All in all I feel confident I will do fine and can move forward without the fear of another stroke. I have learned that can hold you back from going on with your life.

The doc also mentioned to me most strokes usually happen within the first 6 months after the first. Has anyone experienced that?

 

Thank you to everyone, this is like journaling and it helps alot.

Shelia