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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
      Keymaster

      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
      Keymaster

      @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
      Keymaster

      @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
      Keymaster

      @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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      @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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      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
      Keymaster

      @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.

      • This reply was modified 10 months, 3 weeks ago by V.R. Peterson.
    • #24360
      Jen Cueva
      Keymaster

      @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
      Keymaster

      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
      Keymaster

      @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
      Keymaster

      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
      Keymaster

      @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
      Keymaster

      @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
      Keymaster

      @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
      Keymaster

      @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
      Keymaster

      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
      Keymaster

      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?

    • #26386
      Chris
      Participant

      Hi all!!

      I just got off the Ronacoaster and it was quite a ride. I am 61, diagnosed with IPAH July 2019 and am on O2 24/7, Lataris, Sidenifil, and a Phase III drug trial of Ralinepeg. We quarantined and wore masks, but still got the virus. Something to think about, my Portable Oxygen Compressor (POC) compresses air, strips the Nitrogen out and then squirts 95% pure O2 up my nose. It doesn’t filter the virus and there isn’t a way to filter the air going in without hurting the device. In retrospect, I might have been wise to use bottled O2 when in public places. I may be wearing a mask, but my machine is not and I can’t keep folks from sneezing on my machine…

      So here is my Ronacoaster ride…
      June 15th – started having gastrointestinal issues and diarrhea this lasted two days. Then came a fever of 102, a headache and fatigue. I started having angina on the 18th and went to the ER. Tested positive for COVID-19 (surprise to everyone). Since my O2 sats were in the low 90’s and I was already on O2 I was sent home. I isolated myself (we bought a baby monitor so we could keep in touch) and my wife and I started wearing masks whenever she was in the room with me, following all social distancing and hand washing ceremonies. I kept my room and bathroom sanitized. Regardless, she eventually got the virus too.
      I was drinking Pedialite with probiotics and watching for edema. I was always thirsty and would wake with the driest mouth so I drank lots of fluids (much more than I had since I was diagnosed with IPAH) and never had any edema problems.
      June 20th – fever broke but the fatigue and malaise continued. I lost my sense of taste and smell completely about this point and had anorexia. Only really hot (temp) chicken soup sounded and felt good in my mouth to me so my wife made a vat and I lived on it for the next 5-7 days. When it ran out she made beef vegetable and that was wonderful too. It needed to be really hot, and I would breath the steam deeply and that felt so good to my lungs and in my chest.
      June 25th – 10-days since I got the virus and I had been off Tylenol for 3 days without any recurring fevers. But, my O2 sats were dropping into the 80’s at rest. Back to the ER we went. They did a full panel of blood including blood cultures, but my chest x-ray showed pneumonia was setting in, so they gave me Azithromycin via IV and sent me home with a Z-pak. This helped clear up the congestion that was settling in my lungs and my O2 sats returned to the low 90’s. During the IV it almost felt like a claw that was gripping my chest released, Ahhh!!
      We spent the next week taking care of each other and convalescing. Each day seemed we seemed to be getting to the end of the Ronacoaster, but it just kept going with another turn and dip and turn and dip…
      July 4th – We were able to go out on our dock and enjoy July 4th fireworks, but I noticed that my feet were hurting. By the 5th the pain was so bad in my left foot that I couldn’t put any weight on it. I was struggling with my O2 sats again and they seemed to drop whenever I moved about. I turned up my O2 another liter and we watched my O2 carefully.
      July 6th – By the 6th I am sure that something is wrong. My wife massaged my painful foot and my O2 sats dropped to the 80’s. Since I am starting to think about blood clots in my feet (this happens with COVID-19) and pulmonary embolisms and taking aspirin I know it is time to go back to the ER and get some real blood work done. At this point I have been fever free for over a week. They ran tests and my D-dimer (usually under .4) was over 4. They ordered a CT scan and found Pulmonary Emboli on both lungs. So they started me on blood thinners. They did admit me to the hospital for observation and as a matter of protocol administered another COVID-19 test that returned positive so I was put into isolation. The blood thinners were miraculous and my O2 sats jumped into the 90’s, my angina went away. They only kept me overnight and I was discharged on the 7th with an oral blood thinner for the next 90 days. Since then I have been progressively moving forward. I am no longer in isolation/quarantine and have begun walking again (2-3 miles a day). My sense of taste and smell is about 60% restored and my O2 sats are staying stable in the low 90’s and I have been able to go back to 2l at rest on my O2. I think for both my wife and I, we are getting off the Ronacoaster, it has been quite a ride.

      Some lessons learned from our experience.
      1. An oximeter is vital and watching your O2 sats is important. Don’t delay seeking medical attention if your O2 drops or you start having other cardiac issues.
      2. Keep in touch with your PAH team. Mine is 250 miles away so my treatment was not at the PAH facility. We (my wife is a great teammate) made sure that the docs that were treating me were familiar with my case and were able to contact my team. Have telephone numbers and email addresses ready so they can consult.
      3. Be thankful for each day you are given. The Ronacoaster has many twists and turns and may go on much longer than you might expect, but be thankful for each day you are given. In each day there is something to learn, someone to know, someone to be kind to, someone to pray for, someone to thank, someone to love. Don’t worry about tomorrow, tomorrow will take care of itself. You have enough strength for today, don’t waste it worrying. Trust the God who made you, the docs who are treating you, and your love ones and friends that are caring for you. Rest in their care and let the miracle of your immune system fight this virus off (supported by modern medicine).

    • #26392
      Jen Cueva
      Keymaster

      Oh no, @b2testnav, you and your poor wife both have truly had a rough time lately! I am sorry to hear all of your challenges with COVID, pneumonia, and blood clots! You are such a trooper and continue to remain hopeful.

      I am grateful to hear that you and your wife are almost done with this rollercoaster ride. I have told my hubby from the beginning; it’s like a rollercoaster at times. I am sure that y’all are not yet to your “norms,” but seeing some improvements each day is a blessing.

      Thanks for sharing your tips and your experience, although it has been a tough ride. I love this part, “In each day there is something to learn, someone to know, someone to be kind to, someone to pray for, someone to thank, someone to love.” I agree with this 100%! Thank you for this reminder! Take care, and I will keep you and your wife in my thoughts and prayers.

    • #26393
      Jen Cueva
      Keymaster

      @shannon4jk, how are you and your family doing? Thinking of you as I read the update from Chris above.

    • #26398
      Shannon
      Participant

      Hi Jen! How are you feeling? We are doing much better thank you. All my kids are home and we have moved into a 3 bedroom 2 bathroom house with plenty of room for everyone to spread out! Lol so that’s been a big blessing to me. My daughter is still slowly recovering and has lost a lot of weight. She’s so skinny. She’s always been athletic so it’s going to take time to gain all the muscles back. I am just taking it day by day and staying inside as much as possible. Scared to get it again! But everything else has returned to my normal routine. Thanks for asking and I hope your feeling better.

    • #26401
      Jen Cueva
      Keymaster

      Hi @shannon4jk, I am so happy to hear that you and the family are doing much better. That is so exciting to have a love large home with lots of space for you all.

      I hope that your daughter will gain more weight. I drink protein powder blended with ice cream sometimes to add extra calories on days when I have a poor appetite.

      Take care of yourself and pop in now and then. I’m sending you hugs from Texas.

    • #26425
      Colleen Steele
      Keymaster

      @b2testnav oh my gosh, I am so sorry to hear that you had to fight Covid on top of your PH! Thank you for giving a descriptive account of your symptoms and progression of the virus. Your advice regarding supplemental oxygen is very valuable and I hope all our members have taken a moment to read what you shared.

      How are you feeling now? Did your wife manage to avoid catching it? When you get a chance update us on how you are doing now.

    • #26426
      Colleen Steele
      Keymaster

      Hi @shannon4jk! Congratulations on your home and the happy news that your family is together again! I know there is still much to worry about but hopefully things will only continue to get better. It’s good to hear from you. Thanks for the update!

    • #26440
      Chris
      Participant

      Shannon, I am glad to hear you and family are doing well and together again.

      Jen, Thanks for you kind thoughts and prayers! I think the best news of all is that COVID-19 is not a death sentence for folks living with PH. It is still a dangerous disease, but so is the influenza and the upper respiratory infection that nearly ended my life before I was diagnosed. Having flown over 50 different aircraft in my 30 year AF career, including 20+ years in flight test, my life has been spared a number of times. I am thankful I have been spared once again and might use each day I am given for good and for God’s glory.

      Colleen, We continue to improve, my taste and smell are almost all back and my 6MWT distance is coming back to normal. My wife did get it too, despite the isolation, PPE, and ceremonial handwashing and precautions. I think that it is very hard not to get it when you are quarantined together. Besides, we have been married for 39 years and we share everything. We live in a three story townhouse so my wife moved down to the first floor and I stayed on the third. We bought a baby monitor so she could see me and hear me while I slept without having to climb the stairs and dress up in her PPE and I could easily call her if I needed her assistance. She started getting symptoms about my 5th day. Her case stayed phase 1 and didn’t progress to stage 2 requiring additional treatments. For this I am greatly thankful and to God we both give thanks for His graciousness in extending our days!

      Many blessings upon you all!!
      Chris

    • #26443
      Colleen Steele
      Keymaster

      Thanks for more information, Chris! I have been wondering about how long it takes or even how well taste and smell return after Covid-19. The baby monitor is a great idea. Months ago we were concerned that my youngest son had it. He did not but for a while he stayed locked-up in his room. Wish I had thought of the monitor. It’s also helpful to know someone who can confirm that it is possible not to progress to stage 2. I will keep you both in my prayers.

    • #28675
      Anastasia Antonova
      Participant

      Hello everyone!I have PH and heart disease ( single left ventricle). I am 22. I am from Russia. I want to share my story with Covid.

      In December I was admitted to the covid hospital with lung damage 28%. I was there 6 days. All analysis are negative. Blood test is normal. Not a hint of inflammation.No cough. No fever. I just feel pain in lungs like I squeezed out a hundred times. And constant temperature 37 (celsius). And  weakness in the whole body. I just wanted to lie. Saturation was 70-75 without oxygen and with oxygen- 85-90. Doctors suggested that I had a coronavirus in the autumn and pneumonia appeared as a complication. Also I was tested for antibodies- 21 (g). I was treated with dexamethasone and blood thinning.

      Then there were 2 weeks of isolation. On New Tear’s holidays I went to Saint Petersburg (city with harsh and humid climate) and there I got complication. 55% lung damage. Symptoms are the same. Just weakness and pain in chest are stronger than before. Now I am in hospital, all analysis are normal. No inflammation in the body. Doctors don’t understand the reason of temperature and pain in lungs. Now I am treated just with blood thinning. Antibiotics and dexamethasone are not prescribed because there is no reason.

      I am very worried that doctors cannot determine the reason and find the right treatment. Today I will have another CT scan of my lungs.

      Did you have similar symptoms? What were you prescribed during the coronavirus? Have you had any difficulties with the selection of treatment? I would be happy to receive feedback!

      • #28680
        Colleen Steele
        Keymaster

        @fhlsun I have been fortunate that Covid, so far, has not hit my family. I can’t answer your questions but want to thank you for posting. Hopefully a few of our members might have something to share that will help you. My co-forum moderator, @jenc experienced Covid recently and is still dealing with complications from it. She might not be on the forums today but she will probably have a response to what you are going through when she returns.

        Please update us whenever you feel up to it. I hope you get answers and a plan that will help you soon.

    • #28682
      Jen Cueva
      Keymaster

      Hi, @fhlsun, I am sorry to hear about these complications. I was diagnosed with COVID in mid-November. I also developed pneumonia and a few other issues related to my other illnesses. I was hospitalized after trying to treat it at home for about a week.

      I was having increased fatigue, SOB, and chest tightness, and heaviness. My oxygen saturations were dropping in the 80s with my air on. I was on multiple IV antibiotics, and antiviral, and steroids. I did have one inhaler, Breo, that the respiratory therapist came to do daily. I was there and in bed all except the day before discharged home.

      I was discharged in the first week of December. Still, today with oxygen at 5 liters continuously, I have low saturations, but lately, I have noticed not as bad. I am still weak, extremely fatigued. My recovery has been prolonged, but I am grateful to have made it out of the hospital.

      Please update us once you get the results from your CT scan. I hope that this helps some.

      I do have a repeat CT at the end of the month, along with an Echo.

    • #28683
      Jen Cueva
      Keymaster

      Hi @shannon4jk and @b2testnav, how are your recoveries going? I was looking for this post last night, so thanks, @fhlsun, for sharing again.

      Please let us know how we can best support you.

    • #28697
      Anastasia Antonova
      Participant

      @colleensteele Thank you for your support! I’m glad that you and your family feel good!

      @jenc
      Thank you so much for your reply! Unfortunately, we need more time to recover. But I hope that everything will be certainly great!
      Do you use oxygen during sleep? Did the temperature rise anymore?
      Today I have been discharged from the hospital as CT scan showed less than 20 % lung damage…I was very surprised by such a difference. I think it’s a miracle. Or that time the doctors were wrong)) Anyway, I’m happy with the results. However, the temperature is still high.

      • #28699
        Colleen Steele
        Keymaster

        @fhlsun that is good news that you were at least able to go home today and lungs are showing improvement. Hopefully the temperature will subside and you will be on your way to a speedy recovery. Thinking of you.

      • #28712
        Jen Cueva
        Keymaster

        Hi @fhlsun, I am grateful to hear about you going home and the low lung damage. I have a follow-up CT next Friday. I am hoping that I do not have much damage. If so, I can not start a new treatment that was planned.

        I am still recovering at home. I am much improved but also still not to my norm yet. I have not had any fever but stay cold, and the pain is intense. .I was discharged home on 12/4. Give yourself grace. I hope that you will recover slowly at home. Do you have home health or anyone to help you at home? Take one day at a time.

        • #28714
          Colleen Steele
          Keymaster

          @jenc I am concerned about the intense pain that you mention. Can you tell us more about that? Where is the pain and what is there anything that helps relieve it? I’m so sorry, Jen. You are always in my prayers.

        • #28771
          Jen Cueva
          Keymaster

          Thanks, @colleensteele. My chronic pain is usually back, shoulders, legs, and chest pain. Some are related to PH meds and side effects; some are because of my PH and my kidneys. COVID just intensified it that my pain doctor doubled my pain meds. I am grateful for that, and my heat vest and blanket helps. I also do warm soaks to help my legs. Others with COVID have mentioned back pain.

          I am grateful as always for your kind heart and prayers.

    • #28702
      Chris
      Participant

      Hello everybody!!

      Thankful for a beautiful day!! Quick update – Just had my followup CT scan to see if my Pulmonary Embolisms I developed from COVID last summer are gone. Unfortunately, they are not and now I have more. After the blood thinners worked to control my clots my PAH docs wanted me to stay on them indefinitely (I am idiopathic, but had a suspect shadow on a Ventilation Perfusion test but they weren’t able to identify any PEs in the high-res CT scan so didn’t start me on them right away). Since my COVID started I have been dealing with chronic GI bleeding and the blood thinners made it much worse so we had to stop. I have been chronically anemic since and we have been trying to get my blood production back working again. Anyway, so as of a couple of days ago I am back on blood thinners since the docs figure they can give me blood easier than breaking up PEs.
      Other than that we are doing well. Coronavirus seems for some to be the “gift that keeps on giving.” Blessings to all!

      • #28704
        Colleen Steele
        Keymaster

        @b2testnav it is so frustrating and concerning to hear how much COVID affects people differently. I’m so sorry that it’s been extra challenging for you. Thank you for the update because what we share about this from our own experiences might help others. Please keep us updated on how you are doing.

    • #28715
      Jen Cueva
      Keymaster

      Hi @b2testnav, I can imagine how frustrating and draining this must be for you. It is so crazy how this virus affects everyone differently. I cannot even begin to imagine how low your blood counts must be.

      Did they have a back-up plan if the thinners do not resolve the clots? I love that you can keep your humor with all going on. Thanks for sharing, and please update us as things improve for you.

    • #28793
      Anastasia Antonova
      Participant

      @jenc Hello! Yesterday I returned to my hometown. I hope everything is going to be good and you’ll start your treatment. Tell me please, what is home health?
      You talked about pain in the legs, shoulders and back. Occasionally I feel the same. However recently I was diagnosed with cervical and thoracic osteochondrosis. I think that because of this such symptoms.

    • #28811
      Jen Cueva
      Keymaster

      Hi @fhlsun, I happy to hear that you made it back to your hometown. How are you feeling?

      Here in the US, home health is where nurses and other medical staff come I and check on you often after a hospital discharge. You may have something similar there, do you?

      I have chronic pain, but also, my kidney disease causes lower back pain. My PH medications are most to blame for the leg pains. I hope that you have something to take when your pain gets worse since you have a diagnosis.

      I cannot imagine juggling all of this at such a young age; how do you manage? How do your family and friends react?

    • #28825
      Anastasia Antonova
      Participant

      @jenc Hello Jen! I am generally good, but severe weakness and shortness of breath appears in the evening, and saturation when walking drops to 50. Today I am going to my cardiologist to decide on hospitalization as covid gave heart complications and I may have to switch to selexipag (now I take opsumit) . What medicine do you take? Did you have CT ? What are results?

      • #28830
        Jen Cueva
        Keymaster

        Hi @fhlsun, I am sorry that you are still experiencing that low energy and saturation. My oxygen saturation still has not been back to my norm, even with 5 liters of oxygen all of the time. I hope that your appointment today will offer you more answers.

        I have a repeat CT scan on Friday and an Echo to see what COVID is left with my lungs. One PHriend had minimal scarring and inflammation from COVID; I hope that we both get some positive results.

        I am grateful for your parents, boyfriend, and other close friends, who are supportive. I cannot i imagine how difficult this is for you as a young adult. It certainly can limit your activities.

        I was diagnosed with PH when I was about 30. I will be diagnosed 16 years next month. So, keep the hope up; you can do this. Thanks for sharing and update when you can.

    • #28826
      Anastasia Antonova
      Participant

      @jenc I still inspire myself that I am not sick so I undertake too much. My parents worry and take care of me too much. Friends are already used to my condition, they support me, but the parties are calmer now:D I am also very supportive of my boyfriend, I don’t know what to do without him, and close friend from the pulmonary hypertension charity in Russia.

      Of course, sometimes it makes me very sad that I cannot live like all people at my age: have fun, go snowboarding, skate, work hard, stay awake until the morning when you went to a nightclub to dance or all your friends got together … But I’m holding on)

      However, if you monitor your condition, you can live very well) This summer I cycled 300 km and felt good enough,but now everything is different

      At what age did you begin to feel the symptoms of the disease?

    • #28831
      Jen Cueva
      Keymaster

      Hi @b2testnav, I wanted to check in on you and see how things are going for you this week. What has your medical team decided to do for your clots? Please let us know if we can be of any support to you right now.

      Hey @shannon4jk, how are you, and when is that new grandson due? It must be soon. Please update us when you can on how you are feeling and, of course, that grandson’s arrival.

      • #28834
        Shannon
        Participant

        Hi Jen! How are you feeling? Is your husband’s cough getting better while eating? I tend to cough more while eating. I also have Interstitial Lung Disease and that seems to make it harder to eat and breathe. Eating takes a lot of work! Lol My Grandson ( I love saying that!) is due March 11. Unfortunately, my sons girlfriend has to have a c-section so he might come sooner. I am ready for him. I still have to show my son how to change diapers and give a baby a bath! I have been slowly preparing him for what yo expect. I remember how first babies can be very overwhelming the first few weeks! My Pulmonologist wants me to start Subq for PH but I keep fighting her about it. Ugggg I just am so tired of doctors and the side effects of meds are horrible! And I use Covid as a excuse to keep putting all my tests and procedures off. I still keep my video appointments. I hope all is well with you Jen and your family! Thanks for asking about me! I truly appreciate that!

        • #28842
          Jen Cueva
          Keymaster

          Hi @shannon4jk, I am sorry that you still have the coughing. ILD would certainly impact chewing and make eating a struggle. PH alone does that, so I can bet it requires a lot more energy for you to chew and eat. I can relate somewhat. My hubby is still having that cough after he eats. Last night just after he ate, I remember telling him that it still lingers.

          I am excited for the grandson. I hope and pray that he won’t be too early. I know for me, my mom was a huge help as I had no clue when KK, my daughter, was born. I mean, sadly, babies do not come with an instruction booklet. My mom’s guidance and just reassuring me was a huge help. I know that your son and his girlfriend will appreciate all the help and instructions you can offer.

          I am sorry that you are so frustrated with doctors, feeling bad, medications, etc. Some do not have an issue with subq treatment. Others, of course, do. What about IV? Do you not want either? It sounds like during COVID, with all going on, you have some depression. YOu are not alone in this. Let us know what we can do to better support you.

          I hope that new grandson gives you that extra bit of life and excitement that I bet you will welcome within the question. Have you been on most oral PH treatments already? Did you discuss your concerns with your PH team? You are also not alone with using COVID to slow down on appointments; I think that we all have. I know that you and your family had many added stress events within the last 6-9 months.

      • #28837
        Chris
        Participant

        Hi Jen,
        I am sitting here right now getting an iron infusion for my anemia. Good news my lab numbers are headed in the right direction. The docs put me back on Xarelto for the blood clots and PEs. So far so good. I see my PAH team again on 2 Feb so I will have more labs and a 6MWT to see where we are. I feel better in the last few weeks than I have for awhile and have noticed that my heart rate is on average about 20bpm lower than it had been while walking the dog. Thankful as always for another day to serve.
        Shannon, grandparent is the best job ever!! Praying for a safe delivery and quick recovery.

        • #28843
          Jen Cueva
          Keymaster

          Hi @b2testnav, thanks for the update. I have a delayed iron infusion that I have to schedule in the upcoming months. I hope that yours helps you, some too. I am so happy to hear of your positive news that things are improving. I hope that you will keep us posted next week on your PH appointment.

          I know it feels good seeing that light at the end of the tunnel. I wish you luck on your 6MW test; please do keep us posted. Your update makes me smile as I know we will get there. I am a tad impatient, hehe.

          Thanks for the kind words to Shannon, as I am not a grandparent yet. I know that she, too, will appreciate that. Keep up the positive steps ahead, and let us know how we can help support you.

    • #28840
      Jennifer Beaty
      Participant

      The Sunday after Christmas, I started feeling achy with a low grade fever. Monday I woke up and was experiencing some diarriah (but that’s nothing new with my PAH meds). That continued for a day or two but then my sister-in-law tested positive. She insisted I get tested and it came back positive. But by then (Tuesday) I was feel fine with no symptoms at all. Then I woke up around 4AM having trouble breathing. My pulse ox had dropped to 60. My doctor sent me to the emergency room. After a few tests, I was transferred to another hospital closer to my Pulmonologist and put in isolation. Still feeling fine. I got up to 5 liters of oxygen for a couple of days. Treated for pheumonia. And Sent home. The Doctor said that my PAH meds probably kept me from getting it worse than I did. The hardest part is trying to get my strength back. Going to the grocery store literally wears me out.

      • #28844
        Jen Cueva
        Keymaster

        Oh no, @jenniferbeaty, I am so sorry to hear that you, too, tested positive. I am happy that you seem not to have too many complications from it. Recovery is the toughest for me. Are you still on 5 liters of oxygen? I am thankful that you were only in the hospital a few days, but that is still enough, I know.

        Besides the fatigue, what do you think was the most difficult symptom for you? I know it is so easy to blur the lines between PH symptoms, ore med side effects, and COVID symptoms, for sure.

        I hope that your SNL and other family members did OK afterward and are recovering, too.

    • #28850
      Anastasia Antonova
      Participant

      @jenc Hello! Next week I’m going to go to the hospital and do sounding (to measure pulmonary artery pressure – I am not sure that it’s called “sounding” in English).

      Keep my fingers crossed for you! Good luck!

      It must be difficult to accept when you were healthy for the other 30 years?

      • #28851
        Jennifer Beaty
        Participant

        @jenc, they sent me home on 2 liters of oxygen (my normal). Besides the fatigue, I do have dizzy spells. But those are the only 2 remaining effects of covid. I pray you’re doing well after your bout.

        • #28865
          Jen Cueva
          Keymaster

          That is good to hear, @jenniferbeaty. I am on 5 liters 24/7 still. I am not yet back to my norm, but getting there. Thanks for your concerns and support. I hope that the fatigue and dizziness decrease for you soon.

          How is your subQ going? I think @shannon4jk did not want to try it as suggested by her PH team. I thought of you. Maybe you can offer her some tips. She has a grandson on the way, too.

      • #28864
        Jen Cueva
        Keymaster

        [email protected], it sounds like you are having what is called an Echocardiogram or Echo here. It is like an ultrasound of your heart. Is this what you are having or a heart cath? Please do update us, and yes, positive thoughts and prayers are with you.

        It did take time to adjust for my normal life then to my new normal with PH. The best thing for me was talking to others going through the same or similar things as I did.

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