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    • #24028
      Shannon
      Participant

      I had a video appointment with my Doctor last night. I got tested this morning for the virus. I should receive the results next week. The test doesn’t hurt. It takes about 30 seconds and it’s a long cotton swab that goes deep inside your nose. They do ask a lot of questions. Who I live with, where everyone works and places I have been. I haven’t been anywhere. I have been home bound for the past few months. But 2 of my children are essential workers and have to work everyday. I have been wiping everything down with bleach, light switches, door knobs and everything else. But we live in a very small apartment. So unless I stay in a closet I can’t keep myself separated. We also only have 1 bathroom. I am very sick. I feel exhausted and am running a fever and coughing. I also have pink eye. My Doctor is pretty sure I have it, unfortunately. I am just taking it day by day. Is anyone else having any symptoms? Or have tested positive? I am wondering what the next step will be? Any advice I appreciate. Stay safe.

    • #24042
      Brittany Foster
      Keymaster

      Hi Shannon,

      When all of this first started in my state, there was a positive case at the school system that my mom works for. I had a terrible cough, slight fever for almost a week, and was aspirating at night from coughing so much. I was really sick. They also ended up testing me and I went through the emergency room because I was having such difficulty with breathing. The test for COVID19 came back negative thankfully. But, I was positive for the normal human coronavirus which is the common cold but I really had it bad. I hope that you get your results soon. Did they do a respiratory swab other than covid19 to check for other viruses?

    • #24051
      Colleen Steele
      Keymaster

      @shannon4jk my “healthy” is feeling better now but was very sick for a few weeks. He was tested and the results came back negative. That was all they tested for so I’m not sure what he actually had. Luckily no one else in my family became sick…hope I didn’t just jinx us.

      When my son was tested he was also told it would take at least a week for results but he heard back in just a few days. I’m so sorry to hear that your doctor is concerned that you have it. I hope the results prove him wrong but I know either way, those symptoms are concerning for PH patients.

      I’m also wondering what the next step will be if you test positive. This is so new to all of us. Please keep us update. I will keep you in my thoughts and prayers.

    • #24056
      Jen Cueva
      Moderator

      Hi @shannon4jk, I can certainly understand why you are concerned. I am sorry to hear that you are feeling so bad. I am sure that it is not easy when your kids are working. My hubby is also an essential worker, and I wipe down everything daily, too. He is still so nervous that he will bring something home.

      I am happy that you have spoken to your doctor and have taken the test. I hope that it is negative. If not, did your doctor mention if he would send you to the hospital? I am sure waiting is the worse part as you will worry until you hear back. Did your doctor offer any relief tips in the meantime as far as symptom management? I realize that this is a huge concern with having PH. Let us know how we can support you. Please keep us posted, will keep you and your family in my thoughts and prayers.

    • #24059
      Denise K Thompson
      Participant

      Shannon, I truly pray you come back neg. I know how bad it would be for one of us, triage alone to be determined if we’re good candidates for a vent could be heart breaking. I know I would not be, but I’m 68.
      My sis was admitted in our local hospital for kidney stones last week & kept in isolation because she presented with a fever & elevated white count. She was tested & neg, but the ordeal was horrific. She had her daily meds cut & suffered migrain until she could get home days later & medicate. She got tylenol & motrin for pain & an antibiotic she reacted to. Weighed an extra 20# from a 3 day hospital stay & has finally taken off 14#s of water weight.
      I’ve been my usual isolated self for months. My husband is the only one allowed in and he has to stay away from me. A true death sentence & I don’t wanna go out in some isolation rm, alone & on a vent.
      Stay safe. Serious isolation time.

    • #24060
      Carol Volckmann
      Participant

      Hi Shannon, I recently got out of the hospital because they thought I might have the covid19 – but I did not fortunately. There is one terrible cold going around the country – slight fever, awful caughing and lasting 2-3 weeks. The big symptom aside from a fever and caughing is shortness of breath. Of course having PAH or PH that can be a challenge so I am glad your doctor tested you. Just be sure if your symptoms get worse, especially if your shortness of breath gets worse then be sure you reach out to your doctor or go to the emergency room. My thoughts are with you and sending you very positive waves of good news. Do not hesitate to reach out for support – this forum is with you very step of the way!!

    • #24077
      Brittany Foster
      Keymaster

      Carol,

      This happened to me the beginning of March when all of this was just beginning in my state. It was a relief to know that it wasn’t covid19, because it probably would be a death sentence or at least really hard for me to recover from. I had a really hard time with the virus that I ended up having and it also gave me a fever for about a week too. Its hard when so many symptoms can be the same as the ones that they tell you to look out for with covid19. I almost felt like saying “aside from the fever I experience these pretty much with any flare up I have of respiratory issues !” So hard to manage.

    • #24082
      Jen Cueva
      Moderator

      @dinky1952, It sounds like you are taking the precautions needed to protect yourself. It is worrisome for everyone. I can understand your concerns.

      On a positive note, I am happy that your sister had is now home. My sincere apologies that she had to endure so much for kidney stones. Hopefully, since she is at home and taking her medications, she is recovering—hugs to you from Texas.

    • #24083
      Jen Cueva
      Moderator

      @cdvol3gmail-com, you are so thoughtful and supportive. I am happy that you are feeling better. Thanks for the support, I am sure that Shannon is appreciative.

    • #24084
      Jen Cueva
      Moderator

      @shannon4jk, how are you doing today? I am sure that mentally and physically you are drained. We are here for you. Thinking of you and keeping you and the family in my prayers.

    • #24098
      Deborah A
      Participant

      Shannon
      I’m so sorry to hear you are going through this, I really hope your test is neg. I had a sinus infection and my son that lives with my husband & I was sick with a fever and alittle trouble breathing. He went to get tested, but they said he wasn’t out of the country so they didn’t need to do it. Fortunately I have an antibiotic on fill at our pharmacy, I’m better and my son is too, but it was scary until we got better. i’m so relieve neither of us had it.

    • #24109
      Brittany Foster
      Keymaster

      @deboraha I’m glad that you didn’t have it and that you were able to get better with the antibiotics ! That’s a sign that it must not have been something viral, although they are treating some patients with a z pack I heard (azithromycin). I have been on that medication so many times that I’m honestly probably resistant to it. Glad that things have improved for you! It’s scary when the symptoms overlap with another illness because you just DON’T know and can’t really take any chances.

    • #24118
      Shannon
      Participant

      Hello. Thank you everyone for your support and kind words. I still haven’t heard back from my test yet. But I am hanging on. I feel like I have a bad case of Bronchitis. I am still running a fever and having extreme fatigue. I also have a headache that comes and goes and some sharp chest pain around my lungs. I am still at home and have been told to stay here unless I need immediate medical help then to call 911 and go straight to the hospital. Being that I am such a high risk patient my Doctor is planning for me to need to be hospitalized. But at this point I am staying home for as long as I can. My hospital is not allowing any family to visit. So if I have to chose between my family or the hospital I will stay home. I have a DNR. ( I would not want a ventilator), that’s a personal decision I made a long time ago. So I am prepared for whatever happens. I am hoping for the best. I am on antibiotics, in case this isn’t the virus. Also I have a friend who has PH and has the virus and is doing well. He’s at home and doesn’t have many symptoms other then his oxygen levels are lower then normal. So I don’t think this virus is a death sentence just because we have PH and health problems. Just my opinion! And I guess it also depends on your age. I will update again once I hear if I am positive or not. Stay safe and strong everyone! And thank you!

    • #24121
      Jen Cueva
      Moderator

      Hi @shannon4jk, I had goosebumps as I read your update. I cannot imagine how difficult this is. How old are your kids again? I, too, have advance directives that I did a few years ago as per my doctor’s request. I would never want my family to have to make the decisions for any of this. Mine is pretty specific.

      I know that no family is allowed at the hospital that hospitalization would be so much more difficult. I won’t lie. I discussed this with my husband last night. I read a great article that I will share if I can find it about staying prepared. This was intended for everyone, not just us with compromised immune systems.

      I am happy to hear that your PH friend is doing well so far. You are correct, and it does not always mean a death sentence. I think it depends on many factors, as you say. I am sending you positive thoughts and prayers from Texas.

    • #24134
      Brittany Foster
      Keymaster

      @shannon4jk you’re right to think the way that you are and I like your positive outlook on all of this. It’s hard to stay positive like this sometimes, but if we want to have the mental strength to fight anything off that we can, then we need this type of mental strength that you are showing. I think it’s so important to be able to be around family and I would make the same decisions that you are regarding being with family or the hospital . It’s hurtful knowing that they can’t visit. If you desperately needed the care, then I would think about the benefits of going to the hospital, but if you have the tools to try to manage it at home then I completely respect your decisions ! Each decision is the patients own to make and I fully believe that! Keep us updated please on what the results show and how you are handling all of this. It sounds like a lot of unpleasant symptoms that you’re handling with such grace and strength.

    • #24136
      Brittany Foster
      Keymaster

      @jenc something that I learned at the last ACHD conference was that it’s important to write out advanced directives, choose a health care proxy, and form your will and plans while you are as healthy as possible so you are making these choices with a clear mind! That totally makes sense and I think it’s important for EVERYONE to think about, not just those with chronic or life limiting illnesses.

    • #24142
      Colleen Steele
      Keymaster

      @shannon4jk thank you for the update and for sharing a story of hope regarding PH and the coronavirus. I think we all need to hear stories about people who have caught the virus but are managing.

      Like Jen, I had goosebumps reading your update. I admire your positive attitude and respect the decisions you have made. Not being able to see and touch your family must be so hard. I’m truly sorry for you and what you are going through. At least you are at home but don’t wait too long to go to the hospital if symptoms worsen…sorry, that’s the mom in me talking.

      Please update us when you can. We are keeping you in our thoughts.

    • #24144
      Deborah A
      Participant

      Shannon,
      I hope you get your test back soon and it’s negative, it’s so hard to wait for any tests especially this one. I’m really hope you get feeling better and don’t have to go to the hospital, and you get well soon, take care.

    • #24145
      Deborah A
      Participant

      Brittany,
      I didn’t know Azithromycin was being used for Covid, that is good to know. I’m sorry to hear you’ve had to have so many antibiotics, I understand, I went through about 2 years before I was diagnosed, that I had antibiotics every 6 weeks. Sometimes 2 at a time. Once I started oxygen I seem to have less infections. But I still get chest and sinus infections. It’s so disciuraging to be really ill, I’m sorry you have been through so much. I admire your strength, and kind heart.

    • #24157
      Jen Cueva
      Moderator

      Hi @deboraha, yes, Zithromax (azithromycin)or Z-pack is being used to help treat COVID-19. I usually have this on hand as I take it for chronic bronchitis. It is certainly tough for us as we are more prone to chest and sinus infections. I am happy that you have noticed a decrease in infections since starting oxygen. Take care of yourself.

    • #24166
      Brittany Foster
      Keymaster

      @deboraha I try to stay as positive as I can. But during times of extra stress and discomfort it can be really challenging. I am so grateful for the community like this to support me and allow me to talk about what may be going on or bothering me through the week. It’s good to get it out and share it with others so it doesn’t feel as bottled up inside !

    • #24170
      Brittany Foster
      Keymaster

      @jenc just be careful with taking zpack more often. I ended up getting c-diff from chronic antibiotic use and the z pack was what I was mostly on! I think it is best to take them with a probiotic when you are taking any antibiotic. That is what my PCP usually advises for me to protect my gut. Do you take a probiotic when you are taking an antibiotic for your bronchitis ?

    • #24175
      Jen Cueva
      Moderator

      Hey @brittany-foster, a great reminder! The antibiotics are excellent when needed. They can easily cause GI upsets and C-diff, as Brittany points out. I take them as needed but try to hold off when I can. As far as probiotics, I usually only use them as required. While taking antibiotics is one of those times. Probiotics are great for gut health. Just be sure to check with your medical team before adding these to your meds. One PH doctor advised me against this, but two others suggest this is fine. Like everything else, I find often it can be a doctor’s preference, especially when they fail when asked to tell me their reasoning.

    • #24177
      Brittany Foster
      Keymaster

      @jenc good point about discussing with your medical team first before taking anything like this. Surprisingly, my doctor that treated my c-diff actually told me that probiotics were a waste of my money and that I really didn’t need to be taking them. But, at the same time I can see why my PCP would suggest them, especially with my history of c-diff to help protect the gut and increase the gut health. My pulmonary doctors never commented on this but it’s not something specific that I asked him. Probiotics really can get super expensive if taking them all the time. It would easily cost over 100 a month to take them every day.

    • #24214
      Jen Cueva
      Moderator

      Hey @shannon4jk, I am thinking of you and wanted to check in on you. How are you feeling? Did you hear back about your test results yet? Are your doctors doing anything different to help you at home?

      Thoughts and prayers are with you and your family from Texas.

    • #24215
      Shannon
      Participant

      Hi Jen. Thank you for asking about me and thanks to everyone else for your kind words. They mean a lot to me. I found out last night that I am positive. I think I got it on March 15 so it took about 2 weeks for me to start showing symptoms. I am still at home and maintaining. My cough is so much worse, my ribs feel cracked and probably are. This is a weird virus. My fever will break and I feel a little better then BAM back down again. It’s exhausting. And I am constantly sweaty. My O2 has dropped down into the high 70s. If it starts to drop into the 60s, I will go by ambulance to my hospital. Right now my main concern is my 19 year old daughter. She was born with a congenital heart defect and has had many open heart surgeries over the years( has a pacemaker) and has Lupus. She is starting to show signs of having it. This scares me beyond anything in my life. All of my sons, I have 4, are helping to care for us and have no symptoms yet. And I pray they don’t get it! If my daughter gets any worse I will call and ambulance for the both of us and at least will be together. I just keep hoping this will pass and I get strength to help my daughter because the worst for her is still coming. I will update again when I can. Stay safe and strong.

    • #24217
      Jen Cueva
      Moderator

      Oh @shannon4jk, I am sorry to hear that you did test positive. I have heard that the fever seems to come at night, and that is when many say it is the worst time for them. Have you noticed this? I can certainly understand about the ribs feeling cracked. I cracked a few one-year coughing. Has your doctor ordered you anything for the cough? For Myself, I can only take plain Robitussin, otc. I also have an RX for Tessalon Perles that helps to control my cough. Please keep your medical team updated as your symptoms worsen, etc. Your oxygen is already quite low; how much oxygen are you on? Maybe they can increase the flow to see if that helps at all.

      I can only imagine your fears as you are concerned about your daughter. Have y’all been in contact with her medical team? Know that I am keeping you and all of your family in my thoughts and prayers—big hugs from Texas. Keep us updated and know that we are here for support.

    • #24220
      Shannon
      Participant

      Hi Jen. Good morning. Yes I am on top of talking to my Doctor and my daughters team of Doctors at Penn Star Children’s Hospital. I have also talked to Doctors through the Health Dept and Disease Control? More Doctors then I can keep track. All through phone calls and video chats. We will ride this out in our apartment until told otherwise or we get worse. And yes coughing is much worse at night. But I do have cough syrup , and was told to finish my antibiotics, but not much helps just have to push through and hope for the best! Thanks for everything. Stay strong and safe.

    • #24227
      Jen Cueva
      Moderator

      I am sure that with you feeling so bad, this is so much to worry about, @shannon4jk. It sounds like you have it all under control and that both of your medical teams and Health Dept. are aware of the concerns and of your positive results.

      Try and rest as much as you can, I am sure that is not easy. If the cough syrup is not helping the cough, maybe ask the doctors, I know, you are sick and tired of dealing with them all, I am sure. Yes, please do finish your antibiotics; rather, you feel they are helping or not. Maybe you will get some relief soon. Take care of yourself.

    • #24233
      Colleen Steele
      Keymaster

      @shannon4jk I just read that you did test positive for Covid. I am so sorry! How you described the intensity of the symptoms is similar to how I’ve heard others explain the severity of it. I will truly keep you in my prayers!

      In addition to the zpack I’ve also heard of people being treated with a combination of that and hydroxychloroquine. I take Plaquenil for rheumatoid arthritis and perhaps your daughter takes it for her Lupis? I don’t know anyone personally who was given this combined treatment and I’m curious if any of your doctors mentioned it to you?

      How is your daughter doing?

    • #24237
      Jen Cueva
      Moderator

      Great additions, @colleensteele. My son-in-love’s boss tested positive several weeks ago. He was treated with the Zpack and hydroxychloroquine. He is feeling much better, so it sounds like this was helpful for me.

      I heard of some who take Plaquenil for their RA, Lupus, etc., were having issues refilling their prescription. Have you encountered any problems?

    • #24287
      V.R. Peterson
      Participant

      My daughter-in-law was presumed positive because she was exposed at the hospital where she works, and she got sick. The hospital had to save the tests for their patients, so they sent her home. She’s feeling better and is finally back to work after a month off.

      I’ve got several of the symptoms (low O2, low-grade fever that has lasted a month, incredible headache, body aches, and digestive issues). They’re not bad enough to be hospitalized for them, so I’m staying home. That’s what my county is recommending for those who aren’t gasping for breath (which I’m not).

    • #24299
      Brittany Foster
      Keymaster

      @mamabear007 so sorry to hear that your daughter in law couldn’t get tested. Especially because she is around someone that is so high risk, you’d think that they would do that for her so that your son could know and could stay safe. This is what had to be done for my mom even when I tested negative. I was still showing symptoms of the virus and honestly didn’t feel well for about 14 days a little over 2 weeks actually. It was really hard and my oxygen was a lot lower than my normal. I tested positive for Coronavirus but not for COVID19.

      I hope that you are able to stay home and stay safe!

    • #24307
      Jen Cueva
      Moderator

      @mamabear007, wow, I did not realize that your daughter in law was not tested. This is so sad and wrong that they were unable to test her as a nurse. I am grateful that hs is feeling better. Those on the front line are so brave, and they are putting themselves in danger. Is she at a small hospital?

      I am sorry to hear that you are having symptoms, too. I hope that it will clear up and you can stay home and take Tylenol or whatever you can to get some relief. Please keep us updated, take care, and I am keeping you in my prayers.

    • #24308
      Jen Cueva
      Moderator

      Hey @shannon4jk, I wanted to check in on you and see how you are feeling. Have you been able to get any relief? I’m thinking of you and your family.

    • #24319
      V.R. Peterson
      Participant

      @brittany-foster, my daughter-in-law didn’t get tested because the state didn’t have enough tests for everybody. Because she was exposed, and because she had the symptoms, they assumed she had it. If it were to happen now, she’d be tested because Utah now has enough tests.

      This virus definitely caught the entire world with it’s proverbial pants down.

    • #24320
      V.R. Peterson
      Participant

      Thank you for your prayers, @jenc. My daughter-in-law got sick when our state just started getting the tests. At the time, Utah didn’t have even a fraction of the tests they needed to test everybody. If it happened now, she could be tested. Unfortunately, the virus caught the entire world with their pants down, and as you’ve seen on the news, it’s going to take quite awhile for every country in the world to catch up.

    • #24322
      Colleen Steele
      Keymaster

      @jenc I have heard of people have difficulty refilling their prescriptions. Because my dose was lowered I’ve been getting by for a while on one big bottle. However, I tried to refill it this week and it’s completely my fault that I couldn’t. Well, you see…I’ve delayed seeing my rheumatologist for too long, and now my prescription can’t be refilled until I’m seen. There was an opening for tomorrow but I declines. His office is at the hospital and I decided some achy bones is easier to deal with then risking contracting COVID and passing it on to my family. I have enough for few more weeks and then I’ll re-evaluate my decision. I’m more concerned for those who have Lupis and struggling to get their meds.

    • #24324
      Colleen Steele
      Keymaster

      @mamabear007 I was thinking of you last night and wondering how you and your family are doing. I am really sorry to hear that your daughter-in-law contracted COVID and worried for you that you’re exhibiting symptoms. How is your son?

    • #24326
      Jen Cueva
      Moderator

      True, @mamabear007, this certainly did ” catch the whole world with their pants down.” – sadly, some are paying the price.

      The positive note is that your daughter -in -law is feeling better. Was this difficult for your son when she was sick and hone for a month? I’m sure this had to be.

      Please keep an eye on things for yourself too, and know that we are here.

    • #24327
      Jen Cueva
      Moderator

      Whoops, @colleensteele, let me guess, you were busy taking care of everyone else? I don’t blame you for not going to the office at the hospital. I hope and pray that before you need to go, things will clear up some.

      Unfortunately, the country stockpiled this medication for COVID-19, so those with Lupus and RA are having a difficult time filling theirs.

      Take care of yourself, too, and let us know how this works out for you.

    • #24330
      Colleen Steele
      Keymaster

      @jenc my arthritis has been well controlled for a while so when my schedule needing adjusting to make room for something else, I would sacrifice that appointment. Time flies and I’m not even going to tell you how long I’ve waited. Let’s just say, I totally understand why my doctor won’t fill it without seeing me.

      Honestly, I would rather see people whose arthritis and Lupis is much more severe than mine, get their meds first.

    • #24331
      Jen Cueva
      Moderator

      @colleensteele, that certainly sounds like you, offering to give up your RA meds to others. You’re so kind and thoughtful, but you deserve your meds, too.

      I understand how time got away from you; it sounds like you were MIA from your rheumatologist for some time. I won’t even ask, hehe

      I’m glad that it’s well-controlled. I think the meds have helped, so hopefully, you don’t go without.

    • #24340
      Brittany Foster
      Keymaster

      @mamabear007 absolutely caught us with our pants down!!! I like that saying! So true. I wish we were more prepared for this and had plans for “worst case scenarios” in place. I think the government needs some anxiety disorder lessons and they can also prepare for the worst possible outcomes in almost every situation. I can teach the “Anxiety 101” course if anyone is interested. “Lesson 1: Always jump to the WORST case scenario. It might not happen… but what if it does?!”- My Ted Talk LOL

    • #24341
      Brittany Foster
      Keymaster

      @colleensteele that is something that I didn’t think much about. For some medications it really is best to see the doctor first or it is required to see the doctor first. RI just passed a law that for narcotic prescriptions as long as the doctor is special certified to order them, it can be done electronically now. I’m sure doctors have to do quite a bit to even get permission to do this. But, luckily for me, my PCP has this authority. I can’t even imagine having to go into the office to get a hand signed copy of a script with everything that is going on. I wonder how that works in other states now and if they are accepting electronic scripts given everything with the pandemic?

    • #24347
      V.R. Peterson
      Participant

      @colleensteele, have you called the office to see if he would do a tele-appointment? Many doctors prefer that their patients *not* come into the office until C-19 is no longer a threat to them or their other patients. If he will do that, you could have him call in the prescription and ask the pharmacy if they have curb-side delivery so you won’t have to go in to pick up your prescription. Even if you need blood tests before your rheumatologist writes a refill, maybe he would write a prescription for a month or two over the phone. You won’t lose anything by asking.

      • #24379
        Colleen Steele
        Keymaster

        @mamabear007 it’s funny how I consider these options for my son but not myself. You are right, I should ask about a tele-appointment. I’m going to call next week and inquire about that. My mom, out of the blue, asked me yesterday if I have been able to get my arthritis medication ok and when was the last time I visited the doctor. Never underestimate a mother’s intuition.

    • #24350
      V.R. Peterson
      Participant

      @colleensteele, my son is doing well.

      @jenc, the grocery store where he works has an apartment upstairs from the store, so he had a place to stay where he wouldn’t be exposed. Definitely not the ideal situation, but the safer one.

      @brittany-foster, I definitely agree about the government fostering anxiety in everyone, but they weren’t alone. The media was only too willing to jump on the band wagon and shout worst-case scenarios from the rooftop. I think they all should be flogged.

    • #24360
      Jen Cueva
      Moderator

      @mamabear007 that is so amazing that the store had that spot for your son. I remember you speaking about how well they treat him. I agree with you, the safest plan. I am happy to hear that he is doing well. How are you feeling today? Hugs from Texas.

    • #24361
      Jen Cueva
      Moderator

      I agree with you, @brittany-foster. You do need to teach our government the Anxiety 101 class. They certainly could benefit if they would listen.

      My hubby has been home all week with symptoms because of his stents back in November. I had him call his doctors. They tested him, so we have been trying to distance as much as possible. Thankfully.we just heard that he is Negative. Ironically, he woke up at 10 AM feeling better. Then, within an hour, we heard from his doctors. I am still staying on guard, but this takes a ton off of me, knowing that he tested negative. If I seem off this week, this would be why- Hehe.

      We were talking in another post about moms. My mom had already planned her route to drive 8 hours to come”take care of me” if he was positive. Of course, I told her yesterday that I am OK.- She must have taken Brittany’s Anxiety 101 class. We always plan for the worst!

    • #24362
      Brittany Foster
      Keymaster

      @mamabear007 you are absolutely right! This is also a good reminder for myself too and much needed. Sometimes I get caught up in comparing my pain or my “bad times” to others. it’s easy to do this and think “other people have it worse” but everyone deserves to be seen and heard no matter what. I agree Colleen, I think it is worth calling them to see if they can offer you a tele visit. I have had some appointments with over the computer, even a first patient appointment and the doctor was amazing and is currently helping me get what I need for nutrition etc after just 1 visit online! It was very similar to a in person appt with everything that was discussed. And, like me, @colleensteele I am sure that you have a boat load of medical devices to use during the visit to track your vitals ! That’s the good things about being a caregiver. Your house probably has a pulse ox monitor and a BP cuff and scale! The 3 main things they use and a thermometer. Do you have these at home?

    • #24363
      Brittany Foster
      Keymaster

      @mamabear007 I think that it’s great that they offered him this place to stay. I am assuming that the apartment is run by those who own the store? Super nice of them or whoever lived there too to let him stay and be as safe as possible.

    • #24375
      V.R. Peterson
      Participant

      Yes, @brittany-foster, the apartment is owned by the store. They never charge rent; it’s for employees that need a place to crash. I’ve known about the apartment for years. My son told me about it long before he was even diagnosed with CTEPH, when another employee needed it for a bit. The management and employees are more like family than a boss-subordinate relationship. Even with my son having to work because the store is considered essential, I’m glad he works there.

    • #24377
      Jen Cueva
      Moderator

      @mamabear007, his boss and family sound like some awesome people. I’m so happy that he’s working for such good people. That’s so important and says a lot about them.

    • #24382
      V.R. Peterson
      Participant

      @colleensteele, please don’t wait too long for a tele-med appointment. Plaquenil is one of the medications that are in short supply. It may take your pharmacist awhile to get it.

      Here’s a long list of medications that are in short supply: https://www.goodrx.com/blog/covid-19-drug-shortages-updates/

    • #24392
      Brittany Foster
      Keymaster

      @mamabear007 I am really glad that they were able to give him a place to stay and that they didn’t even charge him for it. Sounds like he has a great place to work for! He is very lucky to have that and I am sure they are just as lucky to have him working there. Especially if he has been there for awhile. I’m sure you become close after that time.

    • #24393
      Brittany Foster
      Keymaster

      @colleensteele I say, LISTEN TO YOUR MOM! Even though I’m sure you don’t like to hear that still. LOL but it’s true that moms usually do have a gut instinct and I’m sure you have that somewhere about yourself too, even if right now you are trying to push those needs aside. Listen to yourself. When you can’t listen to yourself, listen to your mom LOL this is my motto.

    • #24395
      Jen Cueva
      Moderator

      I agree with @colleensteele, Moma’s know. My mom called me several times one-day last week. I thought maybe she forgot she had already talked with me earlier. No, I found out that she and my stepdad both said I did not “sound good.” She had also been texting my hubby to check in on me. Usually, she can tell by my eyes, and now that hs is not near me, she often wants to Facetime or asks me to send a pic. LOL

      Do you, parents(caregivers), do this to your kids/loved ones? Patients, do your parents or caregivers ask you to do this, too?

    • #24703
      Jen Cueva
      Moderator

      @shannon4jk, I wanted to let you know that I am thinking of you. I wanted to see how you are feeling and check on your daughter, too. Please update us when you can—hugs from Texas.

    • #24754
      Denise K Thompson
      Participant

      I’m concerned we haven’t heard from Shannon, since her positive covid19 finding. Does anyone know how she’s doing, or ideally, Shannon, are you recovering?
      Concerned in Oregon.

    • #24770
      Jen Cueva
      Moderator

      @dinky1952, I am concerned as well about @shannon4jk. I have tagged her in a few posts to see if that helps. I am hoping that she is OK and just taking care of herself. You are so kind and considerate. How are you doing?

      How are things in Oregon with this virus? I have not heard much about y’all in the news. I am hopeful that you and your loved ones are staying safe.

    • #24783
      Denise K Thompson
      Participant

      @jen cueva, Thanks for the reply/comment. Things in Oregon are the same as most conscientious states, where we’re doing our best to stay alive & not spread this nightmare. We’re approaching 3,000 cases, for a mostly rural state with a few big citys. Care homes are a big concern. I have 2 stepdaughters & 2 stepgrandaughters who work in nursing homes & a case was just discovered where they work a few blocks from here. My son & daughter-in-law live in Cupertino, in Santa Clara Co., pretty much the epicenter for the country. I’m sure my son’s wife had it. All the testing came back neg for flu & strep, but since she was afebrile at time of visit, they would not test her. There was a death at her workplace. My son was also very sick, but was so worried about his wife, who has Addisons, he did not get checked. A couple of days ago Oregon was pinpointed as one of the 3 states for the least testing.
      Being a retired nurse, it’s maddening that we cannot pitch in, not to mention our comorbidities.
      I worry about states like Texas & hope the, “life isn’t as important as the economy”, political mentality down there does not put you at more risk.
      Stay safe.

    • #24785
      Colleen Steele
      Keymaster

      @dinky1952 I have found the most aggravating thing about this epidemic is the diversity in which people are dealing with it. I wish we were more united in how to protect ourselves and each other.

      @shannon4jk has been on my mind too! If you read this Shannon, just give us a quick shout out to let us know you are ok.

    • #24787
      Denise K Thompson
      Participant

      @colleen steele. Ya know, I still believe most of the population cares & I understand how difficult it is to be unable to meet financial needs. But best to be poor & alive than the consequences.
      I’m sure we’re all praying for Shannon, if not just keeping her in out thoughts. She is us & we are her.

    • #24788
      Shannon
      Participant

      Thank you everyone for thinking of me and praying for me. At this time I am still at home. Waiting to be retested to make sure I am negative. Unfortunately, 2 of my kids have been hospitalized. And I have not seen them since they left here in a ambulance. They are only 19 and 20. Both aren’t doing well. I am beyond exhausted, scared and mentally not well. I have been so selfish I kept thinking I would die from this but yet my kids are the ones laid up
      In the hospital fighting to survive. I should have been better prepared for them. I feel so bad and so helpless. And I am so weak. I don’t have any strength. And unemployment for everyone has never came ! It’s been weeks we check everyday! Nothing! And where is the stimulus checks? None of us have received a dime! So we are sick and broke. Not a good combination. Not at all. I am trying to keep my Faith because I am at my breaking point. All I hear is only the elderly or people with immune issues die from the virus! My youngest son has never been sick a day in his life! … Please stay safe

    • #24791
      Colleen Steele
      Keymaster

      @shannon4jk I am relieved to hear from you but so worried and sad for you and your family and what you are all going through! It breaks my heart that you think you have been selfish. The circumstances unfolding from this pandemic is nothing any of us could have predicted. You have been sick and focused on treatments and all the other elements of PH and underlying conditions, which is exactly what you should have been doing. My 2 children are also 19 and 20 and the youngest is always healthy and strong. He had a Covid-19 scare. The results was negative but whatever he had was still bad and it took him a while to recover. I had not prepared for the healthiest person in the house to be the one to fall ill. Sometimes things happen that you just can’t prepare for.

      Truly Shannon, I am so sorry that this has hit all of you so hard, physically, financially and emotionally. At least now you know how much we care about you here. We noticed that you have been quiet and we got worried. I hope it gives you a little comfort knowing that you and your family are in the thoughts and prayers of many.

    • #24792
      V.R. Peterson
      Participant

      Oh @shannon4jk, it’s not your fault your children got sick! I’m praying for your entire family. May your children come home to you soon.

    • #24793
      Jen Cueva
      Moderator

      @shannon4jk, I am grateful that you posted but am heartbroken with the news about your kids. My heart goes out to you, and I keep y’all in my thoughts and prayers. Please don’t be so hard on yourself. You did not cause them to be sick, although you feel helpless as a mom.

      Don’t hesitate to reach out. We are here for support, and I hope and pray that your kids improve and can come home to you soon. I want to share this Rare disease fund with you, that I just read about. I also recently shared a financial assistance link in the COVID-19 information that I can link here, too. I am hopeful that someone can help you financially from these sources.

    • #24794
      Jen Cueva
      Moderator

      @dinky1952, I did not realize that you were a nurse previously, too. I find that how they tend to share the stats with this virus is weird. As you mention, Oregon as just as vulnerable and precautious, too. So many states are not discussed. It has been quite a mess.

      I do tend to agree that the majority of people do care. IT is the rest who make things difficult for everyone else.

      I hope and pray that your family stays safe. It certainly is scary when working in healthcare. Nursing homes have been hit hard, unfortunately. I am sending you hugs from Texas.

    • #25062
      Jen Cueva
      Moderator

      Hey @shannon4jk, I was thinking about you on Mother’s Day and meant to post. I am worried about you. I have been keeping you and your family in my prayers. Please know that we are here and update when you can—sending you hugs and prayers from Texas.

    • #25068
      Colleen Steele
      Keymaster

      Same! I think of @shannon4jk often too! I hope she is recovering and managing ok. Update when you are able, Shannon. We are here for you whenever you need us.

    • #25275
      Shannon
      Participant

      Hi Jen and Colleen and everyone else who has left a message. Thank you for thinking of me and my kids. My Son is now home and doing well. He never needed to be on a life support. We have learned he has diabetes and high blood pressure and Doctors think that played a big part in why Covid-19 made him very sick. But he’s learning to manage his health conditions and will be fine. My daughter got life supported to the Children’s Hospital where she receives care for her Lupus and heart defect. She was on life support (vented) for 16 days and it was life changing. She has a long road ahead for recovery but is stable and doing well. I am not sure when she will be home. But hopefully soon. She is in good hands and I have to say every medical personnel that I have came in contact with has been extremely helpful and kind. And they have saved my kids lives. When I said earlier that I feel bad my kids got sick. Yes I do feel bad but I do no it’s not my fault. I just need to stop being self centered and always concentrating on my own health when my kids have needs to be taken care of. And to ask them what they want (life support?, CPR) those types of things. Because they are young adults and deserve to decide what they want when it comes to life and death. As morbid as that sounds . And I had to make decisions that I am
      Not sure my daughter would have wanted. But I am glad I chose the way I did. She has a whole life ahead waiting for her and she will get stronger. As for people not taking Covid-19 serious, stay away from them. Seriously, this virus is not a game. My other sons have gone back to work and that scares me
      To death. But bills need paid, and food needs to be bought. What a awful situation this has been. So stay strong and stay safe and please stay home if you can. Let’s hope they find a vaccine! My sons have all donated plasma and will keep doing so for as long as people need it. Thank you everyone for your kind words. Stay safe!! And I hope everyone is doing well? Mentally and physically this is hard times for everyone. Take care

    • #25276
      Jen Cueva
      Moderator

      Oh @shannon4jk, just seeing that you are safe and posting made my day. I’ve been thinking of you and your kids so often. I’m happy to hear that while not at their best, both kids are stable. That’s a blessing!

      Learning of your son’s diabetes and high blood pressure is tough but so happy those are things that y’all can work with his doctors to control. It must have been so very difficult for you during these long weeks. I’m grateful that your daughter is getting the care that she needs. I’m sorry that you had to make those decisions, but you did great!

      This reminded me of why I wrote out my Advance Directives. It was after a traumatic hospitalization when my family made decisions that they should not have. After that I spoke with them and my medical team to do my Advance Directives. It’s complicated but needed when we think it’s not.

      I hope that you’re taking care of yourself the best you can. Bills can wait, you and your kids come first. Are there any food pantry’s or schools giving food there? A case manager at the hospital may have some resources, too.

      You’ve been through so much, take it easy on yourself. Please know you’re thought of often. I’m praying for you and your kids. Take care and keep us posted on your daughter, too. I hope that she will be home soon.

    • #25285
      Colleen Steele
      Keymaster

      @shannon4jk I seriously take a big sigh of relief every time you update us. You have a lot going on and we have been concerned for you and your kids. I’m sure I don’t need to tell you this but taking care of yourself is also taking care of your kids. You are an amazing mom and it sounds to me like you have made good decisions for them. It’s not easy when they become young adults and you need to allow them freedom to make decision, even serious ones. I’ve been through this with my own son. Just try to encourage discussion to help them really think big/difficult decisions all the way through.

      So, how are you doing? How is your health?

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