April 26, 2020 at 11:42 am #24800
Before COVID-19, my Cigna app offered telemedicine, but it was for simple visits. Because of PH and my other coexisting illnesses, it was not something that I could use or needed.
Now, as we go through the months at home, Telehealth has become the new norm. I have had calls, Skype, and Zoom video calls with a variety of specialists on my medical team. I prefer the in-person visits, but when needed, the telehealth works.
I cannot stop thinking about how many have better access to their medical needs with Telehealth. Some may not usually be to make it to see certain specialists due to a variety of reasons. This is one of the most positive things that could come from all of this.
Have you used Telehealth? If so, what are the pros and cons based on your experience? Some have preferred this new norm of connecting to their medical team. Let’s talk about this?
April 27, 2020 at 12:02 pm #24815Carol alexanderParticipant
I have not been able to see any of my Doctors because of the virus they have closed their doors until maybe July.They offer phone calls that’s it. I hope this is not the new norm I can’t go to my pulmonary doc for the hospital is full of virus patients they feel the risk is to great I hope when this ends I can see a doc
April 27, 2020 at 2:03 pm #24818
Hi @carol-alexander, I realize that it is tough for you. I, too, would rather see my PH team in person. Like you, I am afraid to go near the hospital because of the virus all over.
Here, I think the hospitals are trying to keep COVID patients separate. It sounds like they are trying to improve things for patients who have emergency needs other than the virus. Have you seen that in your area yet?
I am so ready to get back to some sort of normalcy, but I am also not prepared to be surrounded by those carrying the virus. It is such a complicated world.
Carol, does your pulmonary doctor not do virtual/video calls? I feel like that helps me versus the call. I can show the nurse my swelling and whatever else needed that I cannot do over the phone. I am sending hugs to you from Texas.
How are you feeling this week?
April 27, 2020 at 3:33 pm #24821
@carol-alexander I can understand how worried you must feel. Some important appointments at clinic were postponed due to COVID-19. I was surprised that his transplant doctor told us last week to call those doctors back and get him on the books. She said clinics are actually one of the safest places right now because of the precautions they are taking.
My parents have had appointments that couldn’t wait. My mom said they only allow 1 or 2 patients in the waiting room at a time and you are not permitted to have anyone with you. That’s one way they are trying to still see patients.
I would ask for at least a video chat but if you are having concerning changes in your health and issues that need attention, I would ask them to please make arrangements to see you sooner. If you are stable and not experiencing something out of the norm, then it might be best to continue with the phone calls.
April 27, 2020 at 4:47 pm #24828
@carol-alexander @jenc @colleensteele I was just talking about this with my psychiatrist today about how difficult it is to be someone with a chronic illness during this time. As much as I appreciate the convenience of tele health visits, it doesn’t replace that personal interaction that I sometimes need. It is easy for me to be dishonest on the phone and make things seem like they are going well when my vital signs would prove otherwise or how I physically appear would prove otherwise. It is a challenge to be honest during these virtual appointments, especially ones that are just a phone conversation. If doctors know me well enough they can tell by the look on my face if I am holding something back. It is hard not to have the testing that helps track progress or decline and helps improve treatment for us. Sometimes it is good but I definitely wouldn’t want it to last too much longer especially given the fact that I have a lot of in person appts coming up that wouldn’t be able to be evaluated over the phone because of needed testing or imaging.
April 27, 2020 at 5:09 pm #24831Carol alexanderParticipant
Brittany oh you said it so well
April 28, 2020 at 6:13 am #24835
@carol-alexander it’s always refreshing to know that I am not alone in my thoughts ! Do you have any testing or procedures routinely that you have been missing? Like the 6 minute walk test or step test? Are doctors doing this at all and monitoring this or lending pulse ox readers to patients to monitor them? I have been wondering about this ! Especially if the office is in the hospital where you see you doctor and with many offices just doing everything virtually unless it’s an urgent matter.
April 28, 2020 at 8:48 am #24838
Well said, @brittany-foster. It is too easy to tell our medical team that everything is good over the phone. I know some can tell by our voices, but calls are the least effective. I think having a video is better as far as visualizing us. But as you mention, tests, even vital signs, often tell a different story. With PH, this is often the story; we “look better” than we feel.
I am ready to be seen in person probably sometime in May, I would guess for my PH doctors.
@colleensteele makes a great point. The clinics are usually one of the safest areas that we can go to. @carol-alexander, certainly reach out to have at least a virtual call. If that is not feasible, I suggest you go if your medical needs are not being met.
April 28, 2020 at 12:18 pm #24850
When I was discharged from the hospital the follow up visit was on zoom with a nurse. She had to rely on me to tell her how I felt – all well and good, but I could not tell her my oxygen level because the only way to get a real reading is accurate is the one they use around your temple and knowing what it is waz the most important. I also have a few test and procedures that are crucial – bone marrow, liver etc to see why I have such an enlarged spleen – and am unable to have these scheduled until 2 months away. That fact makes me very anxious. As Colleen said, clinics and hospitals take so many precautions I would feel safe. For quick questions, checking on your meds and talking to your medical team to see if you need to physically see them – in those cases I see good reasoning.
April 28, 2020 at 1:36 pm #24852
@cdvol3gmail-com, I can understand your concerns and frustrations about telehealth. I, too, agree that nothing is like going in and being looked at by our medical teams. As I mentioned before, COVID-19, I would not use telehealth, although it was available on my Cigna app. My PH team always suggested I call them or come if as needed then.
Here, it looks lie things will start to open up on Friday slowly. Although this scares me, I am hopeful that medical appointments and procedures will be more readily available. But as you mention, 2 months away is not what we would hope for. Sadly, I know that all of my appointments will be backed up. Since many patients have been put “on hold.”
I hope that you can get your tests and appointments scheduled soon. It is a tough balance and decision. But we must be proactive at trying to seek the care that we know that is needed while also staying safe. Our oxygen sats and other things that are critical to our attention are not accurately measured at home. This means that our care teams are only seeing a portion of what is going on with us.
Hugs to you, and I am hoping that you will get some much-needed answers soon. I know this does not help your frustrations and anxieties at this time.
April 28, 2020 at 2:09 pm #24855
Thank you Jen, you are always there to support and encourage. I will have the bone marrow test next week the other tests and procedures are on hold, but I keep pressing. Thank you!!!
April 28, 2020 at 2:39 pm #24858
@jenc I am just ready to think of the ER and NOT think of COVID19 . Hopefully that is in our near future. There are so many times where my doctors have suggested to me “go to the ER if you experience (insert symptom) The more I have been avoiding going to doctors appointments or the ER I feel like the worse things are going to get. I really feel for all of those on the front lines of this in the medical field because I feel like they are going to see a real increase in patients with chronic illness that haven’t been treated or managed well.
April 28, 2020 at 2:41 pm #24859
@cdvol3gmail-com It is always hard to have that waiting period and that seems like a long time to wait. Especially if you are experiencing symptoms that aren’t too pleasant and when you are sitting in your own worried or anxious thoughts that wait feels even worse ! I hope you are able to keep your mind somewhat occupied on something else other than your health. Sometimes it is hard though because being along makes me t think about my body and makes me more aware of things that are going on. I hope this can be over soon or as least it can be safe for you to get the tests that you need so you can get more answers.
April 28, 2020 at 3:18 pm #24862
Thank you Brittney, I will endeavour to think about other than medical issues. Should not be too hard, we are moving out of our motorhome and into a rented house starting tomorrow – lots to do!!!
Thank you again for your focusing me in another direction – you too. You have enough on your plate!
April 28, 2020 at 3:44 pm #24865
Thanks, @cdvol3gmail-com, You are so kind. I appreciate your support here, too. I am hopeful that things will improve soon. I know once you have your bone marrow test done, that will take a little off of your anxiety. Waiting is always the hardest part, right?
Oh no, I was thinking that you already moved into the house. Please take it slow and take breaks. Listen to your body.
April 28, 2020 at 3:47 pm #24866
@brittany-foster, I understand. You have been there and experienced the hospital during this pandemic. I, too, can see how someone could end up in a “Ph crisis” of they needed to go to the ER and just refused to go. This COVID-19 is getting old. It can go home now.
I feel for those healthcare workers. I just told my lab girls that today. Yes, I finally made it!
I am writing about this currently.
April 28, 2020 at 4:03 pm #24869
Thank you Jen – I will try and pace myself (that is not easy as you probably know about yourself). Will keep you posted. Big hug!
April 28, 2020 at 10:34 pm #24879Alfred GronroosParticipant
Hi, Al checking in from AZ. I have had a couple telehealth appointments and I do not like them. And I have had a ZOOM and a regular telephone call. One thing, I am hard of hearing, and I think even when I do hear my brain interprets too slow. I feel I really need the personal contact with the Doctors. Now lab work is on delay. I had a telehealth with a Neurologist and he feels I could have ALS but we delayed the office visit until July for the physical tests. I have told people for years my brain is short circuited and tells me I hurt when there is nothing wrong except the pain nerve. And that does explain the new shortness of breath that the pulmonary doc did not find why. To be safe I would rather NOT go out and about. My wife does some running around but also has ordered groceries to be delivered. One advantage living in town. I really enjoy the forums here and find them extremely helpful knowing I am not alone with all this stuff. But same time I wish none of us had these problems. Gotta go, be SAFE. Al
April 29, 2020 at 2:39 pm #24892
@alfredjohn I know it’s not ideal but I wonder if your doctors would be willing to communicate with you either by e-mail or better yet, private messaging? I know a PH mom who has significant hearing loss and communicating by e-mail, even pre-covid, had been helpful.
I’ve used that method myself. When I feel that I’m not completely following something that is being explained either in person or by phone, I ask if a summary can be e-mailed to me and if I can ask questions in that format if I have more. Most of the time it’s their assistant or nurse messaging me but it’s better than nothing.
We have our groceries delivered as well. In fact, we started doing that a few months before Covid hit. We really love that service.
April 29, 2020 at 9:13 am #24883
Hi @alfredjohn, I can certainly understand how difficult telehealth is for you due to your hearing loss. That could easily cause an issue with communication. A personal touch and in-person visits are the best, I agree.
I usually do lab work every 2 weeks at a minimum. I missed 7 weeks. I finally went in yesterday as my medical team said I could not wait any longer. I am grateful that when I arrived dined in a mask and protective supplies, no one was there. They had extra gloves, hand sanitizer, and the place had only 4-5 chairs spread throughout the large waiting area. My lab girls were wearing all of their protective gear, too. They made me feel safe, so that helped.
Is the Neurologist not seeing any patients at all? July is such a long wait. I can understand your frustration and confusion with your symptoms and no actual diagnosis. It sounds like you are waiting on more tests in several areas, and this is all on hold.
Here in Texas, they will start opening up other non-emergency offices on Friday. I have heard that they are keeping the clinics safe and taking all of the extra precautions. I also share your fears, and I do not feel like it is safe for me to be going out everywhere at this point. The lab was my first venture in 7 weeks.
I am hopeful that things will start slowing down, and we can return to some sort of “normalcy” soon. I am happy that you are enjoying the forums. Let us know if we can support you in any way.
Yes, my hubby still works and does the errands, I have been ordering groceries to be delivered, and that is a huge help.
April 29, 2020 at 3:57 pm #24895
@colleensteele, what a great suggestion! I never thought of this, but email may be helpful for Al. I also receive a print out of each visit summary when I am in-person. Maybe that is something they can send via email. That way, any questions that I have, I can write on it and ask them to clarify.
April 29, 2020 at 7:18 pm #24902Alfred GronroosParticipant
Jen, Colleen, thanks for responses. I do a lot of communicating with my providers in their portals they have available. I like it cuz I can see what I express which is easier for me. I can correct goofy statements. I send them records from other doctors, request pill refills etc. I do get replys in 2 to 3 days. I check the docs reports that they make available. I bet most of them wish I had no internet access. I print some and get clarification on a visit, I like the patient portals and the capability of sending them hard copies. Now a days most offices do not answer there phone anyway. The receptionist hooks you up to an answering machine and I wait for a return call. Thanks Al
April 30, 2020 at 9:42 am #24909
@alfredjohn, aren’t those patient portals convenient? I, too, use one quite often. If my nurses don’t hear from me at least once per month, they worry-Hehe.
I agree that you can communicate pretty much anything on the portals. For more urgent matters, I call my nurse, and she usually responds that same day.
Most doctors appreciate those like us who ask questions and stay on top of our health. Keep it up; do what works best for you.
April 30, 2020 at 4:14 pm #24922
@alfredjohn I’ve been slow in making use of the patient portals but I’m starting to appreciate all that they offer. It is a great way to maintain communication with your team and look back on previous care. My son is transitioning from pediatric to adult care and this has also been a helpful tool in easing him into the process.
May 1, 2020 at 12:13 pm #24931
I wanted to share this piece that talks about telemedicine and how this is one of the “good” things coming from the COVID-19 pandemic. I love this description of this being the 21st-century house call.
Our @brittany-foster is featured in this one, too. WTG Brittany!
I still tend to think this is a good thing for some appointments. But, my PH clinic appointment and others are much better in-person. Have y’all had telemedicine calls this week? If so, are you liking that better? It looks like some clinics will be continuing this trend for some time still. How does that make you feel? Do you think that you can adjust to these appointments?
May 1, 2020 at 1:58 pm #24935
@jenc this is such an informative column. Telehealth I think has effected most of us at this point. I agree that there are appointments that would be more productive in person but it’s better than nothing. I actually wish this option was available before the virus. We live in WA and my son’s transplant team is in CA. It would have been great to have been using telehealth for the past 5 years to communicate with them between our travels out there.
May 3, 2020 at 8:42 am #24942
@colleensteele, I agree that certain patients would benefit if telehealth were used before COVID. I am sure that during the 5 years with Cullen, with his transplant team in California this would have been beneficial.
Years ago, I traveled out of state for my PH doc. Those days telehealth would have been helpful for my PH team and me. Phone calls and emails don’t measure up to these virtual calls. Overall, I prefer the in-person clinic, but I see where telehealth would be helpful.
Anyone else has any telehealth visits this week? If so, how did it go?
Did y’all read this article? Share your thoughts after reading.
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