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How Have You “Pressed On”?
I recently read the following on social media, “If you rearrange the letters in depression you’ll get, I pressed on – Your current situation is NOT your final destination.”
Let’s encourage each other as we prepare for the start of a new year. How have you, despite PH and the physical as well as emotional challenges that comes with it, pressed on? How have you climbed out of moments of depression and moved forward to happier days?
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30 Replies
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That sounds like a great intro to a “New Year’s Resolutions/Intentions for PHers” thread. Personally, I prefer intentions. Except as an expression of necessary determination, “resolutions” aren’t flexible enough for the new (or not so new) normal that includes unpredictable yet inevitable and intractable good days and bad days.
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Vanessa, I really like that wording much better – intentions instead of resolutions! Resolutions can make a person feel defeated too easily but it’s easier to pick up an intention where you left off with it.
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I like the idea of setting an intention. My intention for this coming year is to work through the many emotions and mental health battles and try harder to understand all that I can do for my mental health too without judgement. I find that I am usually my own worst critic.
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Great topic for 2020! I also like the term – intentions. I have never made resolutions for failing is not acceptable.
My intentions for the new year is to research more other medications that will allow me more freedoms without loosing ground.
Currently I am on 3 medications fot PAH one I take in via a central IV line that goes directly into a vein in my heart. I used to take it subcutaneously but after 8 years it became too painful.
Now I would like to look into taking the medication orally (Orenitram) and need to reach out to others who have had experience with this. What are the pros and cons???
Guess what I am really saying is this is one way I press on! I keep researching what works for quality of life. I don’t look back, I just keep moving forward the best way I know how.
Wishing everone a wonderous holiday season and I cannot thank you all for how each of you share your feelings so openly.
Love to you all.
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Carol,
We are so grateful for you too! Thank you for all of your contributions and for sharing so openly too! We wouldn’t be a successful forum without our great members willing to share so much about themselves and their life. That sounds like a really great intention for the new year and one that is important too! Keep researching and never give up on getting the quality of life that you know you deserve. -
Brittany, in many ways 2019 was not kind to you. You have been through a lot and I have my fingers crossed that the decisions to have made for a better quality of life, do just that for you in 2020. Not having to battle constant physical pain would certainly help you with your new years intentions. I’m hoping for better times all around for you!
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Carol, my son also had a central line for 5 years. He was on continuous IV Flolan. Is that what you are on or are you taking Remodulin? He was on triple therapy, so in addition to the Flolan he took Tracleer and Sildenafil plus a boat load of other treatments, such as diuretics and beta blockers.
Doing ones own research is important! Orenitram wasn’t an option when my son had PH. I wish you luck with it if you decide to make the switch.
Thank you for always being open to share here on the forums! Happy New Year, Carol!
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Colleen, yes I am on remodulin IV, adcirca, Lateris and then a bunch of other stuff. I would like to go on Orenitram so I could go swimming and have more freedom – maybe that is selfish. With what I am on has kept me pretty stable. I hope to hear from folks who have been on it to see how it works for them.
Wishing you and your family a new year filled with joyous moments. You are verry special and so is that wonderful son pf yours.
Lots of hugs for all you do!!!
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@cdvol3gmail-com Carol, wanting to enjoy the simple pleasure of swimming and freedoms that so many take for granted, is not selfish at all! My son wore a dry suit for swimming. We ordered it through a company in the UK. It’s not cheap and I would imagine it’s more expensive for adults, but in case Orenitram doesn’t pan out and you feel desperate enough for a swim, I shared the link below.
https://www.hammond-drysuits.co.uk/ -
Thank you Colleen, you always find just the right/positive thing to say. Thanks again for reaching out.
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I would love to go swimming in a indoor pool w/o worrying about humidity. 2020 please hear my roar. I will worry less about what I cannot do, focus more on what I can do
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Jimi, I’m inspired by your attitude towards challenges. I wish you the best in 2020!
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Hi!
I pressed on and continue to each day! I’m an optimist by nature and I have a multitude of illnesses besides the PH. Two weeks ago I was diagnosed with portal hypertension ( courtesy of the PH). So I am learning all I can about portal hypertension and how to minimize its effect on me.My sense of humor helps. I almost have a stand up routine about my various illnesses and can make people laugh with me. Because in the grand scheme of things, to me, this is very funny since I was a nurse my whole career and I have subscribed unwittingly to the disease of the month club.
I use the therapy I went through years earlier by staying in the here and now, don’t worry about the what ifs, I use meditative techniques to help me get through some down days as well. I try to always remember that there is someone lying in a hospital bed far worse off than me!
So this is how I pressed on. Cheers!
Andrew -
I remain optimistic despite me not being a candidate for PTE surgery or BPAs. My CTEPH is addressed with Adempas, Oxygen 24/7, Eliquie, Tudzorra Pressair, Pepcid and the new drug of the month is Uptravi. The Uptravi has a lot of side effects, titration is not easy. I started out with 200 the first week, 400, the second week, 600 week 3 and 4 (I asked to remain on 600 week 4 as we were going on a 7 day cruise and did not want any unexpected surprises).
When I returned home I started the 800 regimen. December 23, was the first day on that new dose. On December 24, I took the am dose and arrived at my son’s house for Christmas eve dinner. Not a headache person usually I had a major one and took 2 tylenol extra strength. It alleviated, but 3 hours later I was sick to my stomach with nausea and my head was ready to explode. After much encouragement from family members I agreed to 911 paramedics and while on route, I passed out and vomited. Not remembering the vomiting once I came to.
This medication has to be adjusted according to tolerance levels. I am now back on the 600 range for the time being and optimistic for the future and my tolerance levels.
My echo from last year showed mild pressure to my right heart and unfortunately this year the echo showed severe pressure. That was the reason I was put on Uptravi. From what I understand some patients have a success with the Uptravi. I hope I will be one of them.
You just have to go forward and ready to try whatever is necessary to live!
My form of PRESSING ON IS NOT TO FEEL SORRY FOR MYSELF! I continue to be optimistic as the alternative is not good. I’m 78 years old and hope to age gracefully. -
Hello all, starting off 2020 by writing my first post to this forum. I was diagnosed with Idiopathic PAH in July of 19. I have always been active and athletic. What a surprise to my wife and I!
Anyway, I press on each day knowing first that I am fearfully and wonderfully made and though I now I have PAH, I am NOT PAH. Everyday has troubles, it did before PAH, I only had the strength for each day’s troubles back then, I certainly only have enough for today’s troubles now. So, I press on desiring to bring glory to my Creator as His handiwork and joy to whoever I encounter. Happy New Year to you all as we press on together! -
I was only diagnosed this past June tho my breathing difficulties began in 2015 and are complicated by a raised diaphragm, myleoproliferative platelet disorder and prior smoking history. Have had to stop three of my five new meds so far because they made things worse and trying to lower Uric acid levels that brought on gout. But I have learned how to navigate on 24/7 5-6 liters of oxygen with help from friends and neighbors and am still able to do most things I enjoy. D tanks and a bonsai regulator let me go out on my own and I work at home. Worry about the future of course. Pulmonary rehab was very helpful and taught me a lot about basic stuff. Same for this newsletter. Just wish most doctors knew a lot more about this disease and worry about having to go back into the hospital again. Do a lot of online research.
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Hi Jo Ann, not enough doctors know enough about PH and PAH. When I was finally diagnosed it was 12 years and then told that I had about 3-5 years to live. I was also told excersise would not really help. Like you, I went on line for a doctor and team who really would help and found that expertise and help. Hiting this disease from all sides, starting an exercise that I was able to do I am now stable and plan on having a long life ahead.
Jo Ann keep doing what you are doing in being your best advocate, keep asking those questions and most of all keep positive, laugh a lot and enjoy yourself ’cause you are worth it! 2020 is going to be a good year!
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Well sometimes it’s hard just had a bad experience my daughter came in from Texas and we went to the grocery store for some things the cashier said to my daughter their is a women that comes in that is just like her meaning me I was on my oxygen of course tell me is she in a nursing home she is talking about me like iam invisible my daughter said no she is in her home and she said poor thing people are so rude Iam so devastated.The more I see people the more I like the animals just lost my Mother this summer and my 1st cousins last week what a year.and just started out real good for 2020.sorry about my ranting had to get it off my chest this is the only place I have that I know understands
Thanks
carol a -
Oh Carol, I am so sorry that you were treated that way. I did laugh a bit when you mentioned an appreciation for animals more than people. I just said that to my husband the other day after hearing a lot of bad stuff in the news. I turned off the TV and hugged my dog.
You have struggled with a lot of loss and changes in your health so it’s understandable that you need a chance to vent and I’m glad that you know our forums are a safe place to do that.
I hope 2020 turns out to be a better year for you. My thoughts and prayers are with you.
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Hi Colleen,
As much as I talked about how great it felt to not having the feeding tube, it was actually necessary for me to get it back in for my own health. They did end up putting it in a different position which feels a lot better than the one I had going right directly to my intestine, but am starting to have issues with feeding, bloating, fullness, pain and cramping etc. and it feels like the same cycle starting up again which can feel really discouraging. But am looking forward to at least some good things already happening and good things that ended my year, so trying to stay positive and keep a good outlook on the year to come even though I know there will be inevitable bad days too. -
Carol, you come always come here to share about how you’re feeling and vent it out when you need to. I am sure many of us understand this and understand the comments. I always get the pity glances when I am wearing my oxygen and some people make the assumption that I have cancer. I have even been asked that before. I think it is because to the outside world, when people look “different” due to medical reasons, the first assumption is “must be cancer”. But it is more of a way to educate others about what we are going through and it is an opportunity to open up that type of conversation. It STILL is hard though and can feel isolating when people talk about you as if you’re not there. That’s one of my biggest pet peeves too!
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Hi Brittney, So pleased for you that you are home, were able to share the holidays with family including your fur child!
To hear you had new issues with the new tube is heart rending. I don’t know how you go through soooo much yet you always find a way to move forward at the same time reach out to others with encouragement and love.
Hoping the new tube and position will soon be resolved and have a lot more walks in the fresh air with your puppy!
Big warm hugs,
Carol -
Hi Chris and happy new year! That was an inspiring first post. I hope after kicking off the new year with us that you will keep posting and find the forums helpful and supportive.
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Jo Ann, it’s helpful for others to hear about someone managing life while being tethered to oxygen, so thank you for sharing your experience. It is a blessing when you have family and friends ready to help. I also agree that even doctor’s need to be better educated about PH. People are still going misdiagnosed for way too long and that’s unacceptable.
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