Received bad news from DM doctor

[BETTYDISNEY]

Just wanted to say that I have multiple, bilateral pulminary embolisms. I was on coumadin (still am) and lovenox. I was cleared to travel by plane to wdw by the pulminologist, hemotoligist, and pcp as long as I moved every hour, 1 month after hospital discharge. I made arrangements for oxygen, a scooter, and seroiusly modified our plans, but all went well.

Everytime they thought I might have a clot, they do an ultrasound of my legs and a d-dimer blood test.

Thank-you for your post! What is lovenox, is that like a blood thinner as well?

 

[SueM in MN]

Thank-you for your post! What is lovenox, is that like a blood thinner as well?

yes it is.
It is used for DVTs (Deep Vein Thrombosis).

 

[vafarmmom]

Thank-you for your post! What is lovenox, is that like a blood thinner as well?

Yes, it is a blood thinner that works right away, on different enzimes, and does not require the monitoring that comidin does. Coumiden takes 5-7 days or so to become therapeutic, but the lovenox starts working right away. I was coumadin resistant, so it took a long time and a lot of coumadin to overcome.

Lovemox is an injection. I was injecting myself twice daily in the stomach. I will continue to do so with any travel. If I want to carry another child, I will need to use lovenox for the whoel pregnancy (I have a friend doing this right now). It was running around $9 an injection for me (my insurance did cover it after alot of work).

I read a poster in the hemotoligist's office abpout a country music star who had a dvt. He nwo takes lovenox before every trip to prevent clotting, along with stockings and exercise.

By the way, I have had superfiscial clots recently, apparently no big deal. Never found any deep clots other then my lungs. I did learn that I have a heart defect and the little buggers found their way to my brain through it.


Have a great trip.

 

[SingingMUA]

Hi there,

I was hospitalized with a DVT and PE back in December ('07). At the point that I was hospitalized, I had been scheduled to leave for WDW 2 weeks later. Needless to say, I had to cancel that trip.

My doctor released me to fly again about 2-3 months later, and I rescheduled my trip, and went in June. Had a blast. I'm actually preparing for another short weekend trip for Labor Day.

I'm in the DC area, so the flight times from here to MCO is about 2 hours and a few minutes. I made sure I got up and walked to the rest room and did a little flexing each hour of the flight.

I DO have post-thrombotic syndrome, and therefore require a scooter to get around the parks because all that walking causes my leg to really swell and get painful. I also keep a collapsible cane with me for extra support when my leg is really giving me some pain/swelling.

I'm considerably younger than your mom (I turned 30 years old a few days after I got out of the hospital back in Dec.), but, I still find that I need the extra support of having an ECV. (I also have Lupus, which was diagnosed as a result of the DVT, so I can tire out very easily too, if not careful, and end up very sick. They also found out I have a clotting disorder... but I digress).

Anyway, I just wanted to say that, I was able to fly just fine, and I hope that it is the case for your mom as well. I leave again in one month!

Here's hoping for a great trip for ALL of you!

 

[BETTYDISNEY]

Hi there,

I was hospitalized with a DVT and PE back in December ('07). At the point that I was hospitalized, I had been scheduled to leave for WDW 2 weeks later. Needless to say, I had to cancel that trip.

My doctor released me to fly again about 2-3 months later, and I rescheduled my trip, and went in June. Had a blast. I'm actually preparing for another short weekend trip for Labor Day.

I'm in the DC area, so the flight times from here to MCO is about 2 hours and a few minutes. I made sure I got up and walked to the rest room and did a little flexing each hour of the flight.

I DO have post-thrombotic syndrome, and therefore require a scooter to get around the parks because all that walking causes my leg to really swell and get painful. I also keep a collapsible cane with me for extra support when my leg is really giving me some pain/swelling.

I'm considerably younger than your mom (I turned 30 years old a few days after I got out of the hospital back in Dec.), but, I still find that I need the extra support of having an ECV. (I also have Lupus, which was diagnosed as a result of the DVT, so I can tire out very easily too, if not careful, and end up very sick. They also found out I have a clotting disorder... but I digress).

Anyway, I just wanted to say that, I was able to fly just fine, and I hope that it is the case for your mom as well. I leave again in one month!

Here's hoping for a great trip for ALL of you!

Thankyou so much! This also makes me feel much better about DM flying. She has been so nervous, but she is calming down now. I hope you have a wonderful time. Take care of that Lupus issue, I have MS. Arent these autoimmune diseases so much fun

 

[sherreis]

Yes, it is a blood thinner that works right away, on different enzimes, and does not require the monitoring that comidin does. Coumiden takes 5-7 days or so to become therapeutic, but the lovenox starts working right away. I was coumadin resistant, so it took a long time and a lot of coumadin to overcome.

Lovemox is an injection. I was injecting myself twice daily in the stomach. I will continue to do so with any travel. If I want to carry another child, I will need to use lovenox for the whoel pregnancy (I have a friend doing this right now). It was running around $9 an injection for me (my insurance did cover it after alot of work).

I read a poster in the hemotoligist's office abpout a country music star who had a dvt. He nwo takes lovenox before every trip to prevent clotting, along with stockings and exercise.

By the way, I have had superfiscial clots recently, apparently no big deal. Never found any deep clots other then my lungs. I did learn that I have a heart defect and the little buggers found their way to my brain through it.


Have a great trip.

My DS8 is a lovenox baby! And, you're right that dealing with insurance is a nightmare to get it covered, but, I did.

 

[SingingMUA]

Thankyou so much! This also makes me feel much better about DM flying. She has been so nervous, but she is calming down now. I hope you have a wonderful time. Take care of that Lupus issue, I have MS. Arent these autoimmune diseases so much fun

You are quite welcome!

I can say that (for me) the nervousness over flying never really goes COMPLETELY away, but I remind myself that as long as I do everything I'm supposed to do (meds, stockings, walking, drink water) that I will be fine. I don't have any new clots, my INR is in the therapeutic range, so, no need to worry. And then, of course, I remind myself that I'm going to WDW, and the nerves get better.

And, yes, autoimmune diseases are LOADS of fun!!

I hope you guys have a great trip!

 

[habg1]

Just thought I'd add my two cents, for what it's worth.

I have had (and have) massive blood clots & dvt's. Leg, kidneys, lungs and a major artery that goes to my heart. All this and I'm only 32 and I've had this since 1999. Currently on a blood thinner (forever)

Any way... Flew for the 1st time last Nov to Disney. I was alittle apprehensive, especially about the lung one. But everything was fine. No problems. I got up often on the 3 hr flight and moved my legs all the time. I sat in the aisle seat so I could extend my leg out fully once in awhile. Oh, yeah...of course the thigh high compression stockings...aren't they glorious?

I would ask the doctor again, maybe there is another health issue involved with their reluctance.

Thigh high stockings, medicine & frequently moving. You can't go wrong

 

[BETTYDISNEY]

Just thought I'd add my two cents, for what it's worth.

I have had (and have) massive blood clots & dvt's. Leg, kidneys, lungs and a major artery that goes to my heart. All this and I'm only 32 and I've had this since 1999. Currently on a blood thinner (forever)

Any way... Flew for the 1st time last Nov to Disney. I was alittle apprehensive, especially about the lung one. But everything was fine. No problems. I got up often on the 3 hr flight and moved my legs all the time. I sat in the aisle seat so I could extend my leg out fully once in awhile. Oh, yeah...of course the thigh high compression stockings...aren't they glorious?

I would ask the doctor again, maybe there is another health issue involved with their reluctance.

Thigh high stockings, medicine & frequently moving. You can't go wrong

Thanks for info. We will be sitting in the bulkhead because I am in wheechair, so she will at least be able to straighten out her legs!

 

[MRussell]

If this is a duplicate post I aplogize. I was disconnected when I hit send.


Hi Betty,
I am sorry to hear about your mom's news. I think you should take her to Disney. I hope this comes out the right way........ we never know how much time we have left and should make the most of each day with our loved ones.

Last year my father -in-law (Papa) was diagnosed with pancreatic cancer and he didn't have much time left. As soon has he heard the diagnosis he said " I want to go to Disney World again" Papa loved Disney World! My husband told me to plan the trip soon. We planned it for the following week. His doctor told us he absolutely should not go.

He had several health issues including an aneurism that could burst at any time. (He had it for about 5 years and his cardiologist had told him he wouldn't live 6 months with it. Papa told him it wasn't up to him, when it was his time, he'd go)

His doctor finally said as long as we were aware of risk (he could die while we were gone) and were ok with it to go and she wished us the best. We had 5 fun filled, sometimes worrisome days with Papa. I don't know where he got the strength to go 5 days and ride all his favorite rides. We came home with wonderful memories that we will treasure for a lifetime. Papa passed away 1 week later.

I wish you and your mom the very best and know you will do what's right for both of you. I hope you are able to go to Disney together. Here's sending you hugs and prayers.

Martha

 

[FranP]

I really don't recommend taking an 80 year old woman on a train for almost 30 hours. This past November we took my mom (82) on the train from Newark NJ to Kissimmee (a 23 hour trip) because DD was renewing her marriage vows at SeaBreeze Point and wanted her Nanny there. She refused to fly so I agreed to do the train with her. BIG MISTAKE. We had the "roomette" - sat knee to knee almost the whole trip - seats at bottom fold into one bed and the other you have to climb into - well, which one of us was going to climb in - the 82 year old or the 53 year old with back problems??? We barely slept - the attendant in the car was wonderful, however, and tried to be as helpful as possible.

We were so exhausted that it took 3 days to recover - we felt like we were sleepwalking or drunk. Then the day after the train trip, she lost her balance and fell, hitting her face on the sidewalk (she was OK, no permanent damage, just a really black eye).

Going home, my husband called Amtrak and explained the problem and they upgraded us to a "handicapped sleeper" for a discount. A little better, but the second person still needs to climb to a top bunk.

Also, while you can walk around the halls they are very narrow. You can also go to the dining car, etc., so you can exercise a little if you need to.

My daughter, who was 8 months pregnant at the time, flew after her doctor told her that she would be better off in a plane for 2.5 hours as long as she wore support hose and moved around when she could.

How mobile is Mom???? If she is not steady on her feet, walking on the train would be very difficult.

Good luck - Nanny says if she goes again, she will fly after taking a big Valium LOL.

 

[BETTYDISNEY]

If this is a duplicate post I aplogize. I was disconnected when I hit send.


Hi Betty,
I am sorry to hear about your mom's news. I think you should take her to Disney. I hope this comes out the right way........ we never know how much time we have left and should make the most of each day with our loved ones.

Last year my father -in-law (Papa) was diagnosed with pancreatic cancer and he didn't have much time left. As soon has he heard the diagnosis he said " I want to go to Disney World again" Papa loved Disney World! My husband told me to plan the trip soon. We planned it for the following week. His doctor told us he absolutely should not go.

He had several health issues including an aneurism that could burst at any time. (He had it for about 5 years and his cardiologist had told him he wouldn't live 6 months with it. Papa told him it wasn't up to him, when it was his time, he'd go)

His doctor finally said as long as we were aware of risk (he could die while we were gone) and were ok with it to go and she wished us the best. We had 5 fun filled, sometimes worrisome days with Papa. I don't know where he got the strength to go 5 days and ride all his favorite rides. We came home with wonderful memories that we will treasure for a lifetime. Papa passed away 1 week later.

I wish you and your mom the very best and know you will do what's right for both of you. I hope you are able to go to Disney together. Here's sending you hugs and prayers.

Martha

I am so sorry to hear about "PAPA" You seem to have cared for him very much. We are planning on going by plane. Life is to short for regrets later.

 

[BETTYDISNEY]

I really don't recommend taking an 80 year old woman on a train for almost 30 hours. This past November we took my mom (82) on the train from Newark NJ to Kissimmee (a 23 hour trip) because DD was renewing her marriage vows at SeaBreeze Point and wanted her Nanny there. She refused to fly so I agreed to do the train with her. BIG MISTAKE. We had the "roomette" - sat knee to knee almost the whole trip - seats at bottom fold into one bed and the other you have to climb into - well, which one of us was going to climb in - the 82 year old or the 53 year old with back problems??? We barely slept - the attendant in the car was wonderful, however, and tried to be as helpful as possible.

We were so exhausted that it took 3 days to recover - we felt like we were sleepwalking or drunk. Then the day after the train trip, she lost her balance and fell, hitting her face on the sidewalk (she was OK, no permanent damage, just a really black eye).

Going home, my husband called Amtrak and explained the problem and they upgraded us to a "handicapped sleeper" for a discount. A little better, but the second person still needs to climb to a top bunk.

Also, while you can walk around the halls they are very narrow. You can also go to the dining car, etc., so you can exercise a little if you need to.

My daughter, who was 8 months pregnant at the time, flew after her doctor told her that she would be better off in a plane for 2.5 hours as long as she wore support hose and moved around when she could.

How mobile is Mom???? If she is not steady on her feet, walking on the train would be very difficult.

Good luck - Nanny says if she goes again, she will fly after taking a big Valium LOL.

Thank you for sharing your story. Believe you me we are not landing on that train ride.! DM told me that if you had to go by train that would really KILL her lol. I am only 40, 1/2 her age and it would definitely kill me.