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Remodulin seems to be helping!

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#1 tngrits


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Posted 10 June 2011 - 03:51 PM

Hi everyone,

I have been in the ER and six days in the hospital since I last posted but doing a little better. The doctor started me on the remodulin treatment. I actually inserted the needle and everything myself. The hospital had not ever done it and the ICU and pharmacy people wanted to watch. It was very easy and did not hurt. I have to gradually up the dose the way the doctor tells me every three days. That way the side effects aren't too bad. Between uping my oxygen and taking the new medication I really think I'm doing better. It's weird--sometimes I can go from good to awful in a day's time. They have to watch my blood pressure, oxygen level, and coumadin level all the time. I can now walk to the kitchen without feeling like I am going to faint. I still use a wheel chair or walker when going out and can't stay away but a few hours. I'm usually give out the next day and stay in bed. Dealing with what is now a terminal illness is very hard mentally but I think I am handling it okay. My son surprised me and flew in from Houston for a few days. Last weekend my dad and two sisters flew in too. That was a shocker because my dad don't go anywhere. He owns a restaurant and grows acres of watermelons in the summer--and is 81 years old--so he is very busy. I enjoyed seeing him so much. It is hard knowing I may never see them again. But none of us knows when it is our time so I'm soaking in all the little things I love so and feel blessed for each day. I will try to get on more and post on others posts as much as I can.

#2 Sheryl


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Posted 10 June 2011 - 04:42 PM

Linda keep us informed on how this treatment works for you. I am happy to hear that your Dad and Aunt's came to visit you. It was really nice that your son was also able to fly in for a visit. It is always nice to have some family members around to add to our memories.
Strength and Warmth,

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#3 Joelf


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Posted 11 June 2011 - 12:26 AM

Hi Linda,

I'm really pleased to hear that your Remodulin treatment is helping you to feel better. How lucky you are to have such a lovely supportive family. :)

We don't grow water melons in the UK, so I'm visualising acres of them in a field!! :lol:

I do hope that you continue to do well with your treatment.

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#4 debonair susie

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Posted 11 June 2011 - 11:23 AM

Hi Linda,

I'm also very happy that the Remodulin seems to be working for you.

What a wonderful surprise! Being surrounded by very loving family to give much needed emotional support is GREATER than great! :emoticons-group-hug:

Thank you for updating us and please stay in touch :)
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#5 Amanda Thorpe

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Posted 11 June 2011 - 01:56 PM

Hello Linda

I'm glad that some medication is helping you feel better. I can't imagine what it must be like to have to reconcile yourself to being terminal. I know that with systemic sclerosis there is always the possibility of becoming terminal but until you're actually there...

Take care and please keep posting.
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#6 Lynnie


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Posted 12 June 2011 - 02:05 PM

Hi Linda

What a lovely supprise for you to see your adored family its supprising when it all comes together for us ..a total joy! :emoticons-yes:

I am pleased that you are getting along and making the most of your days and adding things to the memories. :happy-dance:

You are a very brave lady and I salute you and your tenancity to be so brave and upbeat when life is difficult. :you-rock:

I just hope you continue to enjoy your days for long time yet :flowers:

Keep posting when you can linda
Until then take care
Hugs and warmth