Pulmonary hypertension

Posted by freefromdrug1 @freefromdrug1, Apr 21, 2017

I have a friend suffering from pulminary hypertension. Trying to connect him with a group on connect. Any suggestions?

@contentandwell Thanks for the smile for the day! Your mom was quite the philosopher. Teresa

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@hopeful33250

@contentandwell Hi JK, I hope that your appointment goes well on Tuesday. We will be looking forward to hearing from you and learning more about this. Teresa

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@windwalker Thanks, I agree, it is a small price to pay. I am pretty darned happy almost all of the time except when I get awakened multiple times a night and have to throw the covers off. Even though I tell myself to consider the alternatives.
JK

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@hopeful33250 Since a good part of the day was taken up by going to Boston I didn’t get to the club earlier so I went tonight. UGH. I hopefully will do the pool tomorrow if I can get myself up for the 8:30 class. So tonight I did go to the gym and did the treadmill, tried to do the advised equipment, and did a tiny bit of elliptical then I remembered I had to get home to take my immunosuppressants so that cut it short a bit, which I wasn’t really unhappy about.
Off to bed now. I hope these miserable sweats and bathroom runs let me get some sleep.
JK

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@hopeful33250

@contentandwell Hi JK, I hope that your appointment goes well on Tuesday. We will be looking forward to hearing from you and learning more about this. Teresa

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Yep, that is how my nights are too.
 

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@contentandwell Are the sweats a result of the immunosuppressants? Teresa

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@hopeful33250 Yes, Teresa, they are a result of the immunosuppressants. I sometimes forget that the people participating in these messages do not all have the same conditions/problems. The immunosuppressants also cause hair loss. That does not seem to happen immediately, mine started less than a month ago I think, and the amount of loss varies. So far I am not looking baldish. From what I have heard that tends to resolve in about a year when the dosage decreases and your body adjusts to the drug too. I am way too old to “rock” the bald look.
JK

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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Just an outside let’s insight.
For 2 years my sweats were like taking a shower…it turned out the was lung cancer and it took Mayo teams to properly diagnose me.
When my sister in law was going thru treatment for breast cancer she drank
ice tea by the gallons each and every day and she had no sweats. Others have too.

Have you stars of the ice cap treatment when in therapy? This is saving hair… when in treatment.
linda

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@contentandwell

@hopeful33250 Of course the equipment is adjustable — if you can figure out how to adjust it. There are two gyms at my club, the upstairs one where I go does not really have lifting equipment. When my son is visiting and I bring him he goes downstairs and I go upstairs.
I did go to the gym section of my club yesterday but felt so inadequate. The only things I am comfortable with there are the treadmills and ellipticals. My PT said he might come to help me transition from the equipment at the PT place where his to this equipment but so far he has not followed on it.
JK

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To make your work our enjoyable ask, ask ask questions that’s job security for the people who work there.
Commend your self…you are doing it!
tame it slow. After lung cancer surgery I took baby steps & had to stop to catch a shallow breath a lot!
It took an hour to go 200 feet. But kept it up! Now I run 10k races. Exercise is what our body craves!!!
Keep up the great work! You can do this!
big cyber hug
linda

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@llwortman Linda, did you also think your sweats were from immunosuppresants? They are watching me for cancer because I did have malignant lesions in my liver prior to transplant so of course it could have metastasized. I had an MRI last week though and saw the oncologist yesterday and all seems good, thankfully. I doubt that other types of cancer would have been diagnosable from that though and I have no symptoms that would lead to suspect cancer.
Iced tea, huh? I will try that, especially now that the weather is warmer. I wonder if the caffeine has anything to do with it, I will want to drink decaffeinated if I am drinking a lot of it, or green iced tea, it is lower in caffeine I believe.

I have no idea what you are referring to when you say “ice cap”. I am not in any therapy, just living post liver transplant.

JK

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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JK-Check with your med team about the new Ice Cap (actually 2 ice caps that are applied)…it is proving to prevent so much hair loss during treatment.-My sweats were from my cancer as was my pain. Also my thyroid was out of balance. -Ice tea and water are always good, right?-You have a great attitude too, right? That is 50% of the “WIN”.plus exercise which include walking!Great work! Keep it up and let’s stay Connected;-)linda 

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@llwortman Thank you, Linda. I googled ice caps but there didn’t seem to be anything that I expected, just basically ice bags. If my hair loss continues and/or gets worse I will definitely ask about it. Right now it’s not too bad, and today when I showered there wasn’t a huge wad of hair on the floor — it was the first time I washed my hair since Wednesday so I was surprised.

I drink a LOT of water, and in the summer I love iced tea. We do not currently have a Trader Joe’s close to us but a couple of years ago I went to the one in another town a few times during the summer and bought their unsweetened green iced tea. It was really good, I plan to make a trip there sometime soon to stock up. Supposedly we are getting right in our somewhat small town within the next year. It will be interesting because there will be that, a Whole Foods, a Fresh Market, and the regional supermarket, all within sight of each other!

Yes, I think I do have a good attitude, about everything except my PCP. How could I not have a great attitude, I “dodged the bullet” and then had an amazing recuperation. The rest is a bit of a nuisance but I am here and that makes up for all.
I am exercising a lot, primarily pool exercises; I am generally in the pool for about an hour and a half. I like it because my knees are sort of bad and there is not much impact in the pool. Other than then I hate putting a bathing suit on.
JK

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@contentandwell I think the “ice caps” that she is referring to is a treatment done by a hair stylist. Is that right @llwortman? Teresa

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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No. It’s done with breast cancer chemo therapy. I’ll chime in with Colleen…I believe she has heard of it also;-)

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@contentandwell, I just got back from my annual post transplant evaluation. One of the issues that I was able to discuss was the chills/sweating episodes, the anxiety like episodes, and trembling episodes that occasionally flair up for me. And although they might be related to the immunosuppressant drugs, I learned that in my case, I had to learn to live with them because my organs need the current level of antirejection protection. I don’t think that I get the sweats anywhere near your level, but my honest hope was to be approved for a lower dose. I am thrilled that all is well, and I will continue to live with it!

As far as the hair thinning and loss, I experienced the same thing. I was told I could take biotin for my nails and for my hair. It helped. Plus my hairdresser recommended a shampoo.
I used to have thick brunette wavy hair. I also had a natural silver streak due to vitiligo (skin depigmentation). My hair grayed early, Lucky for me it is a silver gray.
Rosemary

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@hopeful33250

@contentandwell I understand what you mean about being intimidated by the equipment. I find it very hard to adjust the equipment to deal with the fact that I’m 5 feet tall and everything seems to be set up for the 6 foot guys who try to lift 50 plus pounds. In a pool all of those problems are gone! Teresa

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@rosemarya Thanks for providing that great information. Could you tell us the name of the shampoo that was recommended? Teresa

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