Pbc and Corona virus

[Ackie123]

Morning all, just wondering if anyone with PBC has had this awful virus and how it affected you?

[blubelle]

Thankfully I’ve not had it so far and I’d also be interested to learn how anyone with PBC has been affected too.

[littysgirl]

Hi all. Yes, I was diagnosed with PBC about three years ago. My gastro doctor has always suspected that I might have an overlap with Autoimmune Hepaptis but the liver specialist that he consulted thought that treating with Ursodiol would be sufficient. So far, so good. My liver tests generally are slightly over the normal numbers.

I also have diabetes and allergy-induced asthma so I have known that I was at risk to be sicker if I picked up the corona virus. I really did everything I could do to protect myself. Before our area was really hard with the virus, I had anticipated issues and ordered disposable gloves and a case of alcohol wipes from Amazon when they still had them available. I still got my hair cut and my nails done, went to the grocery store and the post office - and saw my grandchildren. But that's it. No other exposure to any crowds or out to restaurants or any other gatherings. I kept the disposable gloves and alcohol wipes on the front seat of my car. Wore gloves if I left the car and took them off as I was getting in. Then I used hand sanitizer and wiped down all my knobs and the steering wheel with the alcohol wipes. I got the virus anyway. I will probably never know where I picked it up because I don't know any one else who has been sick and been aware of it.

I was already coughing because it's allergy season so that confused the issue for a while but I started running a low fever. I called my pulmonary doctor the next day. His opinion at that time was to keep an eye on it. They used this new "telehealth" method to "see" me. They had already stopped seeing sick patients in their office. They had me connect with the doctor over the internet and we could both see each other. I gave him information like what my fever was, what my blood pressure was and I happen to have already had a finger pulse oximeter (that little thing they put on your finger and it tells you what your blood oxygen level is. They are now hard to find but I recommend everyone having one. It truly tells you how you are doing.) so I gave him my oxygen level. At that time, he said it would be best for me to stay away from the hospital and just keep reporting to him. After four days with a low fever, I called again, spoke to one of his partners. That doctor put me on arithromycin. Talked to my primary doctor the next day - he too said stay away from the hospital if you can. When I hit 9 days with a fever and was much more out of breath, although I don't think I realized it myself because it came on gradually, I spoke to yet another pulmonologist from my doctor's practice - also over this telehealth. He told me that he thought at this point, they needed to know what they were dealing with and that He thought I should get tested for the virus. That was another problem. No one I knew knew where to go for testing. This doctor knew and I called and went. They did it all outside. I never got out of the car. They checked my temperature, oxygen level and then did the swab test. All this was done by technicians but there was a doctor at the end of the line who looked over the results. They said I wouldn't get the results of the actual test for a couple of days but they didn't feel comfortable sending me home because my oxygen levels were too low. Did I feel capable of driving myself to the hospital? Yes. I was so unprepared. It all happened so fast.

This is too long. Bottom line. I was admitted to the hospital that day because of the oxygen. Two days later I learned that the corona test was positive. I was in the hospital for 9 days. My primary issue was my lungs. Other people have such different symptoms. Some people have high fevers and severe muscle pain. I had none of that. Other people - it goes straight to their brains and they are disoriented. I think those are the people who are not surviving but I'm not positive. It's very upsetting to be in the hospital and see from people's eyes that they are afraid of the germs that you are carrying. It's disturbing that when you ask a question of a nurse or doctor, they shrug their shoulders and say "no one knows yet." It's unsettling when one day they are telling you to do one thing and the next day, they're saying, no, that's changed. Now we're doing it this way because they're still learning what to do for you.

My fever stopped after about a total of 14 days. I was released from the hospital after I was able to maintain my oxygen levels for 2 days on room air only. I have a visiting nurse who checks on me now that I'm home. I have been home now for two weeks today. I don't really remember the first week. It's a blur of lots of sleeping. My breathing is almost back to normal. It will be a while before I have my energy back. I have not left my house except to put out garbage and take in mail. I will probably continue to live like this because while I have survived this virus, I feel like I'm probably very vulnerable to any other kind of germ right now.

As far as my liver functions, unbelievably, they are showing up as normal in all the blood that has been drawn from me during these past few weeks. I assumed it would screw up my liver but it didn't - at least for me. I had some issues with my kidney tests so now I have a kidney doctor that I'm talking to but they seem to have returned to normal as my lungs improved. Who knew that the lungs and kidneys were so connected? Not me.

Well this has turned out to be a novel. But I saw the question and that no one else has responded.

[Aracel in reply to littysgirl]

I’m glad you’re doing much better. Take care of yourself 🙏

[Ackie123 in reply to littysgirl]

Thank you for replying , you really went through it . Thank god you came out the other end . Xx

[Odieweb in reply to littysgirl]

Glad to hear that after your challenging journey you have recovered. Take care.

[Roz49]

Yes I had about 4 weeks ago I picked it up from the nursery children at work the first week of lockdown it is the weirdest virus I have ever had it started off with a headache, not being able to taste and smell and weird cough and being wheezy , then fatigue and aching limbs , lack of appetite.

I was quite breathless at times especially at night. I am sure it will inflamed my liver too, I had some liver pain.

I recovered 3 weeks later, I still have cough and fatigue went away gradually .

I am lucky it didn’t get any worse, but I wondering if there will be any scaring on my liver as I am low risk as I have inflammation with my PBC.

But is scary as you don’t know if it will result in breathing difficulties.

Take care everyone, stay safe and well

[Ackie123 in reply to Roz49]

Thank god you are recovering now xx

[Roz49 in reply to Ackie123]

Thank you , I am recovered now but still have the cough

Stay well and look after yourself

[Odieweb in reply to Roz49]

Oh dear, I am so pleased that you are better now. Take care of yourself and like ninjagirlwebb says, replenish your energies with good nourishment.

[ninjagirlwebb in reply to Roz49]

Happy you are on the other side of this. Rest up & stay well!

[ninjagirlwebb]

So scary...so glad you are fine now. Make sure you replenish your energies with nourishing meals like bone broth & plenty of fruits & veggies.

Stay well.