October 13, 2021 at 9:28 am #32161
We have discussed a variety of co-existing conditions with PH in this sub-forum. We have shared scleroderma, other autoimmune diseases, POTTS, cancer, kidney disease, and heart failure, just to name a few.
In my experience, some days, these other health conditions impact me more than my PH. Do you find that to be true for you or your loved one, too?
Often, I wonder if it is because I have had PH the longest, almost 17 years, but who knows? What are your thoughts on this?
As we know, any rare disease like PH ebbs and flows, so each day is different. So, let’s think about this last few weeks for this purpose.
Which co-existing condition affects you most often? Or do they rotate equally? Please share your thoughts; we look forward to hearing your perspective.
October 17, 2021 at 5:14 am #32181
One of the manifestations of PH (exactly PH) that has often annoyed me lately is shortness of breath and lack of oxygen. I climb the stairs 20 steps and stop for a long time. I get the feeling that my legs have become cast iron, and there is no oxygen in my brain at all. I think I’m going to pass out and faint. This affects me often and most of all and makes people around me look at me in bewilderment. But I pretend that’s what it’s meant to be. A very beautiful view from the window or an interesting theme in the Phone 😁
October 18, 2021 at 8:44 am #32187
Hi @valeriekv, I am sorry to hear about this increasing shortness of breath. Twenty stairs a lot, my PHriend. Can your PH team increase any of your treatments to see if this offers you some relief?
When I read this, it took me back to my early PH days, this struggling to breathe, the lightheaded and feeling like you may faint; I am worried about you.
And, as you mentioned, when I needed to stop and rest, I would pretend to be enjoying the view or smelling the roses.
I hope that your PH team can tweak your meds a bit. When do you see them next? Have you shared this with them? It makes me nervous as I think about you feeling that bad and climbing all of those stairs. I have been there, and that feeling is one of the worst.
Will an increased flow of oxygen help? Please know tHat I am adding you to my thoughts and prayers. Please stay safe.
October 18, 2021 at 1:49 pm #32190
everything is complicated with this. My “PH team” does not exist. There is only an ultrasound doctor, but it is unknown when I will get to him for an appointment. My cardiologist died last year. I told her and other doctors at appointments that I get shortness of breath from climbing stairs, or when I make the bed, or when I hang wet clothes. They all shrugged their shoulders, sighed and said something like “We need to look at life positively.” And additional oxygen, as I have already said, was not offered to me (due to the fact that “the body has already adapted”). They said: “Don’t run after the bus” and “don’t climb fences.” Well , I ‘m not climbing .
Did you also have a feeling of lack of oxygen? That was before you started oxygen therapy, wasn’t it? Is there no such thing now? If it’s not there now, that’s very good. I’m glad you were able to use it during.
October 18, 2021 at 8:25 pm #32192
@valeriekv it upsets me so much when I read your updates and the lack of care that you are receiving. Correct me if I’m wrong – you are from Russia? I think that is what you told us in a previous post.
Out of curiosity I did a search regarding PH in Russia and all I was able to find are some articles that discuss statics and written for doctors. I was hoping to maybe find PH specialists but had no luck. Are there any in Russia that you know of?
A specialist would listen to you discuss your symptoms and think – 1) Is her PH worsening. 2) Run some tests and 3) Consider what your treatment options are to improve your quality of life.
I wish had a good source to refer you to.
You know I am working on the “30 Days of PH” project. Your struggles would make a powerful topic if you are interested in participating. If you are you can message me at [email protected] and I will send you more information.
As far as your health goes, let me know if I can help you in any way. I could try and do more research for you.
October 19, 2021 at 9:30 am #32198
Hi @valeriekv, ugh, my heart cringes, and my blood boils as I read about your lack of care there. This is so unfair, and by your symptoms, this is not a time to “think positive” because these symptoms are real. We can think positively, but it helps when we have trustworthy healthcare providers that understand and listen.
This is why we PHight, for better care worldwide, for those like yourself who are not left suffering. If you are in Russia, I have a young PHriend only a few years with a PH diagnosis, and I believe she is there. I will reach out to her on IG and see who she can suggest or mention.
You did mention that your body has adapted through the years before. I was told that too, but I was put on oxygen because my stats dropped and my symptoms.
I still, at times, get that feeling that I don’t have enough air. It is not as bad as now. I am on continuous oxygen, but I still have that after almost 17 years, but nothing like before PH treatment.
October 18, 2021 at 10:29 pm #32195
October 19, 2021 at 12:23 pm #32206
thank you so much for such kind words.
Yes, I’m from Russia. I live in a small town where there is one cardiologist who knows nothing about PH. He can only send me to another city (where there is my medical center and the same ultrasound doctor. My ultrasound doctor is very good and professionally recognizes my diagnosis on ultrasound. But he is not an expert in treating this). From there, they offer me to go to some consultation even further, to Moscow. This trip will take almost eight hours one way, and many hours in queues. I don’t want to repeat this experience, this trip is very exhausting for me. In addition, for a single appointment, the doctor will not be able to learn much about me and study my diagnosis well.
Colleen, your project “30 days of PH” is a very powerful and good project, the stories from there are always informative. I have nothing to say about this, because my life with PH is not a struggle, but an existence. But the stories of the people in question in this project are such huge lives! I think they could write huge books!
Jen, thank you very much too! It’s interesting that your body has been able to adapt not only to the lack of oxygen, but also to oxygen therapy. This has a big plus for you!
Terry, oh! You’ve found something interesting! Thank you very much, I will definitely investigate this now.
October 20, 2021 at 6:52 pm #32216
Hi @valeriekv, I can certainly understand the frustration with needing to travel the 8-hour trip but then waiting for another treating. Is it possible to speak with someone there in Moscow that can set up 8ntial appointments and test in my day? I know that it’s not piked here but thinking maybe going for an initial visit to get a treatment plan started and then have your local cardiovascular doctor and ultrasound team oversee that?
Many travel like that here if they don’t have a local PH center. on another note, I hope that the information that Terry shared will lead yo7 somewhere.
Please don’t hesitate to reach out and we will do what we can to support you as you exist with PH. I think that you could write an awesome story to show others that in Russia, the healthcare system is lacking meanwhile you’re PHightung with PH. I want to reach out now to the young lady in Russia to ask where she goes. Let me do that now before I for her again, lol.
October 19, 2021 at 5:19 pm #32208Gayle WardParticipant
This is an interesting topic. I have cancer which is in remission. I go through a series of test every 3 month. During the testing I become more anxious and tired. I am more short of breath and my exercise tolerance is low. I get frustrated about “being ill”. Once I get the results I put my cancer out of my mind and focus on my PAH . I work to regain some strength and sense of “Normalcy”. I will be happy when the testing frequency is decreased. Dealing with coexisting conditions is a challenge for sure. It can feel overwhelming.
October 20, 2021 at 6:58 pm #32219
Hi @gward, I’m sorry about your cancer but grateful to know that you’re in remission. Those tests certainly can drain your energy and deplete your spoons.
I love your optimism. Regain8ng s9me sort of our “ normalcy” while managing co-existing illnesses can be challenging. It sounds like you have the best attitude to keep moving forward.
Thank you for sharing my PHriend. I’m sending you extra hugs through the states.
October 19, 2021 at 6:21 pm #32209
Valerie, what Terry shared is definitely worth checking into. Notice there is a contact page where you can reach out to them with questions. https://www.phaeurope.org/contact-us/
October 21, 2021 at 11:42 am #32231
Thank you very much! I’ll think about how to formulate my appeal.
Also, as I wrote in the next topic, recirculators have made my life very difficult. I don’t think that a huge medical center will turn off ALL air disinfection devices for me. Even small labs don’t want to do this. And since these devices are everywhere (at train stations, in shops, in hospitals, in hairdressers), then I can’t absolutely go anywhere. So all these visits to doctors are postponed until better times.
To be honest, I try to think less and not get hung up on the symptoms (it’s been there for so many years). Perhaps I can decide on a two-hour trip to the ultrasound doctor. But I am very grateful to you for your advices!
October 20, 2021 at 8:11 pm #32224Gayle WardParticipant
Thanks Jen. I appreciate your ongoing support!
October 21, 2021 at 5:31 pm #32233Randolph ReynoldsParticipant
I am sorry that Valerie has breathing issues that read like she has developed PAH in its early stages. I gag at the thought of what would have happened to me in a state controlled medical program. Our good fortune is that I have good medical support. The closest medical support that is similar to being federally controlled is the Veteran’s Administration and they have no one who can treat PAH. What follows is my latest bummer.
In regards to you sub-forum on co-existing conditions I agree there are good days and bad days. Most of my issues revolve around how I am going to carry on when I am groggy and off balance in addition to being depressed when I wake up. Sleep has become something that is different every night.
Last Friday I had a bad experience when my infusion pump stopped and I was not aware of it until I felt a little out of breath. I was able to restart it but it is supposed to vibrate if the flow is blocked but it didn’t. I discovered that half of the Remodulin was remaining and there should have been only about a third. I suspect the pump stopped at least six maybe eight hours before. This is dangerous because the longest time one is supposed to be off the Remodulin flow is four hours. Since I’d had several prior instances of blockages with that pump I ordered a new one. I felt tired and had some aches that lasted about and day and half. There are additional physical concerns that have to be dealt with but I won’t go into here.
Today, Thursday, I am pretty much back to normal. This is just an example of how living with PAH can make aging a bit more of a challenge.
Jen you are up and going on line so I assume your move was successful.
- This reply was modified 9 months, 2 weeks ago by Randolph Reynolds.
October 21, 2021 at 7:40 pm #32235
@ripple76 I hope you don’t mind if I jump in here. My PTSD kicked in when I read about your pump malfunctioning. That happened to my son a few times. He was on Flolan and the patients can only stop that treatment for a few minutes. It’s a scary situation and I’m sorry you experienced it.
Did you contact your clinic and tell them? I know with my son and other PH patients this has happened to they were admitted for observation, especially if the pump was off for a long period of time.
It sounds like you recovered fairly well. Those darn pumps sometimes alarm when there isn’t anything wrong and then don’t alert you when it’s important.
July 29, 2022 at 3:01 pm #35375Carol VolckmannParticipant
Randy, I just came across your post of Oct 2021 – your pump stopped and so did tge remodulin! Was this a subQ infusion pump or Hickman line IV?
I was on subQ for years til it got too painful and switched to the IV Hickman line about 6-7 years ago.
I have had the pump fail, but always with a loud warning and have a backup pump.
I hope this has not happened to you again.
July 29, 2022 at 11:41 am #35371
I wanted to share these free resources here. It is from the PHA store. These are free brochures about PH and associated diseases. If you’re looking for some information to share, check it out.
- You must be logged in to reply to this topic.