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Has anyone been tested positive?
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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). -
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.
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@shannon4jk, how are you and your family doing? Thinking of you as I read the update from Chris above.
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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.
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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.
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@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.
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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!
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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 -
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.
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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!
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@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.
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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.
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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.
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@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.-
@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.
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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.
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@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.
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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.
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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!-
@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.
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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.
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@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. -
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?
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@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?
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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.
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@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?
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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.
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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!
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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.
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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.-
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.
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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.
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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.
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@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?
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@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.
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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.
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Hi@fhlsun, 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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Just a follow up on my anemia and Pulmonary Embolisms. I just got new blood work drawn and with the iron infusions and iron pills and vitamins all my numbers are back up to normal PTL! They haven’t tried to image the PEs lately, they are just keeping me on Xarleto for the time being. Thankful as well that I haven’t had any additional GI bleeding since restarting blood thinners. I am having and upper/lower GI series in May just to make sure there isn’t a ticking time bomb we don’t know about yet. It is spring here in NW Florida!! Living thankful one day at a time!!
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@b2testnav yay progress!! I’m really happy to hear that things are going in a better direction for you. How is you stomach handling all the iron? Any nausea and if so, what helps you deal with it?
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Good results on the upper and lower GI as no “smoking guns” were present and my last blood draw showed all my numbers back in the “normal” range so I am done with the iron supplements and glad to see them go. Yes, @colleensteele I did have nausea, but I just ate yogurt or a banana to calm it all down. It is interesting that both bleeding and anemia are showing up as COVID related issues. Prayerfully, with the blood issues now behind me and my one year anniversary of COVID just pasted I am done with it altogether. Yay!! Blessings to all!!
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