I Feel Like A New Person!

[Rafiki]

As I have written I came to states from Kenya about 3 weeks ago after being unable to stand for more than a minute without getting very dizzy. I had spent several months in bed and doctors there were not sure what was wrong other than orthostatic intolerance. I had tried florinef in kenya without any improvement. After failing tilt table test 2 weeks ago, doctor put me on Midodrine 5mg. 3 x a day. There was some improvement but minor. A few days ago he increased it to 10 mg. and what a difference! For the first time in months I am able to stay out of bed, leave the house, go out to lunch, I even went to Walmart and shopped without the wheelchair for about 30 minutes yesterday. I did not start feeling faint until standing in line. It is truly amazing the difference. Two weeks ago I was trying to sit at table to play cards and couldn't even play one hand without having to go and lie down. Yesterday I played for several hours with no problems! For me it seems the Midodrine is a miracle drug! Hopefully I will be able to return to Kenya in a week or two and rejoin my husband and son. I must say though I am not looking forward to the 30 hour trip in economy class. On the trip over my employer paid for me and a nurse to come First Class but since I am supposed to be recovered before I go back, I do not think they will pay for First Class for the return trip!

Debbie

[janiedelite]

I'm so glad you finally have some quality of life back!

[futurehope]

Debbie,

I'm glad Midodrine is working.

But I beg you to try to get the first class seats to go back on. You are not "recovered":you are being "managed". Thirty hours is way too long to be vertical. I'm very concerned about you. I'm saying this from my own experience of 9 hours from the US to the UK and back.

The reclining seats are a life saver. If necessary, have the doctor's write a note. Also, try sitting a few hours way before you go back to see a how you do beforehand. This can be a major stress.

Thirty hours is difficult if your body is working normally. Please consider fighting this. That's my opinion.

[pat57]

happy for you

[Guest tearose]

Best news ever, you are doing better. May it last forever!

Have a safe journey,

Asanti Sana,

tearose

[sandymbme]

I am overjoyed for you in your improvement! May you have a safe journey home!

Sandy

[sue1234]

Wow, glad you found something that can bring you back into "normal" life! After I read that you went shopping in Wal-Mart, my first thought was, "They have a Wal-Mart in Kenya??"! But, then I saw that you were still in the States:) That is great that you got to shop--that will be my first experience whenever I get "fixed" by the right doctor.

[Mrs. Burschman]

Excellent! I'm so happy for you!

Amy

[Rafiki]

Thanks for your encouragement and the concern about the long plane ride. I've talked to the folks in charge of travel arrangements with our organization and I think what I will do is break up the trip by flying to Amsterdam and staying in a hotel for awhile (12-16 hours) then doing the next leg which is about 8 hours. I think that would be manageable. I looked into using my miles for an upgrade, but they also raise the price from 1100.00 (one way) to 4200.00 plus 20000 miles (one way). The difference between the two tickets would be my expense! That is ridiculous.

[ramakentesh]

I would consider oxygen for the flight - I would say that as far as POTS patients go, most of the time im 5-10% symptomatic so Id probably fit in the 'recovered' section - but the one thing that causes a severe relapse in me is long distance flight.