June 8, 2020 at 4:45 pm #25595
In this new Welcome sub-forum, we will tag each new member who joined last week. We will introduce the new members and encourage them to introduce themselves. This is the first week, so I am welcoming y’all to the PH forums.
I hope that by tagging each member here, you will reply to this message and offer a brief introduction. Maybe you can include the following and add any other facts, maybe like a hobby.
Patient or caregiver
How long ago were you diagnosed with PH?
What PH medications are you currently on?
Again this is voluntary and just intended to give the new members a space to do a little introduction.
This week, I would like to welcome @lynn, @ardyyurtyahoo-com, @linda-lockard-cook, and @mirryk. Tracey also joined us and has offered her story in a separate post. Welcome to each of you. I hope that you will find some support here as you deal with your PH journey.
June 9, 2020 at 4:54 pm #25621Chuck OpitzParticipant
My name is Chuck Opitz. I was diagnosed with PAH 4 years ago at age 70. I have been on Adcirca/Tadalafil until just month. I changed from Nayo Clinic to UC Health in Denver and they stopped the medication saying they found it caused fluid retention. In the last 2 weeks I’ve lost 12 pounds and feel much better and can now walk 6minutes test to 3/8 mile. Previous walk was just 1/4 mile.
June 10, 2020 at 9:14 pm #25647
Hi @chuckopitz, I am grateful that your new PH team saw this was causing increased fluid retention. It sounds like they caught this side effect from Adcirca, quickly. That much extra fluid will undoubtedly be a relief to get rid of.
I bet that you have noticed some improvements since besides the increased 6MW test.
Which treatments did they switch you to? We are happy that you are here with us. Please let us know if you have any questions.
June 10, 2020 at 5:56 pm #25636
June 11, 2020 at 12:32 am #25655Chuck OpitzParticipant
UC Health is letting the Adcirca/tadalafil empty out of system. I will continue lasix and am set for a right heart and a left heart catheter July 5
June 11, 2020 at 3:04 pm #25669
Hi @chuckopitz, it sounds like your team at UC Health has a game plan. I hope that they will have some answers for you after your heart cath. Crazy, how fast that will be here.
How much Lasix are you on? I am grateful to hear such positive feedback from you about your care. Please do keep us posted.
June 11, 2020 at 5:35 pm #25680
My name is Carol Volckmann 76 yrs. I was diagnosed with PAH 12 + years ago. This last year my husband and traveled all around the country from WA state. Before leaving I made a list of all the PAH centers in the US in case I got into trouble ‘ UC Denver is one. There are so many hospitals and so many more doctors who do not know about PH or PAH nor the meds that we are on. So happy to hear you found the right team for you.
I am on a combo of 3 meds which have worked really well for me. One is Adcirca which for me it works. Everyone is different and it takes a good team to find what works well for you.
This forum has helped me a great deal and I am not one to join up. Having said that this forum is a wealth of information and helpful support.
Glad you have joined. ☺
June 12, 2020 at 5:24 pm #25705
@cdvol3gmail-com, thank you for sharing some of your experience with Chuck. I am sure that he appreciates it, too. Do you have a list of what you found in addition to those than PHA shares? If so, that would be something helpful for others, too.
I am grateful that you have found a combo that works well for you. So true, what works for one may not work for others. We are happy to know that you have found such support here in the forums. I learn daily, too. Like you, I am a long-term PH patient and still so much to learn.
I hope that you are feeling well and have a great weekend-hugs from Texas.
June 13, 2020 at 2:48 pm #25723
Thank you for your kind thoughts. I am currently going through a rough patch. For the last couple of days I have had multiple test. Results telling me that my Sclaraderma CREST (which caused my PAH) has gotten worst and is causing issues with my spleen, liver etc.
I knew it would progress and there’s not much that can be done. Amazingly enough I feel good so it is what it is.
Thanks for your hugs from Texas – I send you many from Washington! ☺🐶❤
June 14, 2020 at 2:27 pm #25742
Oh no, @cdvol3gmail-com, I am sorry to hear about the worsening of your CREST. I knew that you were looking for answers about your spleen, so it sounds like this is the issue. Did they mention the plan besides monitoring your symptoms? Have you heard of Gaucher’s disease? That popped in my head when you said the spleen and liver, both.
I am happy that despite the news that you are feeling good. Hugs coming right back at ya-
June 14, 2020 at 6:14 pm #25750
Thank you Jen, I looked up Gaucher disease and will go over this with my doc. I still have tests results coming in. Will let you know. Thanks again and hugs to you and Sasha! From me and. Spirit.
June 15, 2020 at 4:30 pm #25762
June 15, 2020 at 5:42 pm #25767
Hi Jen, after I get all the test results I will make an appointment with my Rheumatologist- specialty Sclaraderma – and Pulmonologist. (like so many, I am so tired of doctor appointments!)
Spirit sends paw hugs to Sasha. Our fur children fill our hearts with so much joy and love! ☺🐶❤
June 16, 2020 at 7:44 pm #25775
@cdvol3gmail-com, Oh, I bet! I thought that I was ready to go out, but after all day at the Medical Center today, I was so eager to be back home. The only place that I have been in person before today was labs and the COVID test.
Now, we wait and try to get caught up with the backlog of testing here.
Yes, our fur babies are part of the family.
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