Being a PSC patient puts you in a category of higher risk for things like the Corona Virus. Your immunity is not as good as it would be with a healthy liver thus the possibility. If you find yourself in a position to have to be tested for the COVID19 virus, be prepared to enjoy long days at home getting cabin fever as the days go by waiting for the test results. That’s where I found myself this past week after running high fever, chills, dry cough for several days. Finally was able to get my transplant center to get me priority tested Wednesday morning. They did test me for the flu and I tested negative for that. I certainly hope I don’t have it. I’m feeling much better now and only the dry cough remains, not constant but just there. I hope to get good news in the next couple of days. I’ve even checked with the provider who did the testing twice and they say my test is still pending. I hope everyone will take this virus seriously and keep your hands clean and avoid contact with others, touching doorknobs, anything out in public. Stay safe and make sure you are prepared for a long shut-in should you end up with it. Take care all!
I have wondered about how this virus has effected those with major /chronic diseases, and the quality of care they receive if they need to go to their doctor/hospital.
I usually get my blood work quarterly, in the middle of March… I chose not to do so, to delay it for a while. My sister in law, who is an NP at the same hospital told me that was a great idea, as the hospital is in crisis mode, meaning they don’t want elective walkins…
If I had to go the ER, I’m sure they are already swamped. I have been in the ER and have not been able to get a hospital room, and they did not seem that busy.
Has anyone else had to do anything differently?
Best of luck to everyone out there. Be safe!
Mark, it sounds like you are getting over this thing (whatever it is) on your own. You can do it. And remember it is safer for all of us to stay home and have a phone consult with our doctors, if we end up with symptoms. Please do what you can to avoid going into the hospital.
I work in health care as a dentist in a large group practice, and the limited supply of PPE (gloves, masks, gowns) is no joke. As of last week, we have ceased all dental care other than telephone triage and emergency patient care so that medical can use our PPE. We need to limit the use of our supplies to those with the most severe symptoms.
Our courageous, generous health care workers have been & are being exposed to COVID, so, in addition to potential virus particles being stuck to an elevator button, some of us/them could be infected without symptoms and, although standard precautions are being taken, we/they could potentially spread this to you if you go in there…
(For example, in the dental office, we have been working as normal over the past few months, while COVID was out there, with aerosols and droplets splashing all over the place.)
Stay safe and healthy everyone! I am rooting for you!
- Lisa (parent of 14 yr old with a recent diagnosis of PSC in addition to Chron’s)
- Mark, Is it okay for me to be on this thread as a parent? I feel like there is a lot of good information on here, and knowing there are others out there dealing with and living with PSC makes me feel like we are not alone.
Mark I’m glad to hear you are recovering and I hope the final results come back negative.
Lisa and Tala thanks for your kind words. I am doing well. The only lingering effect of whatever I have is a sore throat and dry cough. Today is day 6 and still no lab results. LabCorp is taking a long time to get my results. I’ve been thankful to be able to work from home but I can’t do everything from a computer as you could imagine. Lisa you stay safe for your 14 year old PSC patient. And yes, you are most welcome to be on this thread as a parent. We are here to share and gain information from one another, so all input is appreciated. Take care everyone and have a good evening.
Happy to hear you are feeling better. You got me worried there…Mind yourself, we need you:).
Hope your family and your loved ones are well and safe.
My very best wishes,
Geez Mark, keep us posted, you are in thought and prayer.
I work for Carilion Clinic, we have a large footprint centralized in Roanoke VA (35 mins north of Virginia Tech). We have 7 hospitals and 174 provider offices. We had our first confirmed Covid case last week then several others to follow. Carilion is taking this seriously and have moved patient office visits to phone calls/tele health. Employees who can work from home have been advised to do so. We reduced the number of visitors to the hospital and are opening sites just for Covid testing. I’ve been in healthcare (radiology) since 1986 and don’t recall anything like this epidemic. I am fortunate I no longer work on the floor, I am an application analyst for multiple medical applications. I also feel blessed to have an essential role/income during this dark time. I am in a clinical trail for PSC at University of Virginia, which is only a 2.5 hour drive from Roanoke, however they have “paused” office visits as well. If you can stay home, don’t risk it, ride it out, this too shall pass.
Thanks DB1 and Lonivision for your comments. This too shall pass and things will hopefully begin to return to normal sooner than later. I know this virus is very serious with folks dying, but it still in no way touches the number of deaths from the flu in the USA alone each year. I hope our leaders will have wisdom and not take this so far as to affect the liberties we hold dear in this great land. We must be proactive I understand, but there’s a balance that is needed where we do not cross that line and we end up without any freedom. Much to ponder over in these days.
Good luck Mark & let us know your results
Rallying from CA for a speedy recovery, Mark!!
Stay Strong, Big Hugs, oop, I mean fist bump!
Thank you MimiLuna and Gloria for your comments. It’s Day 8, I’m feeling fine but am a prisoner in my own home. These test results for this virus test are coming back really slow here in North Carolina. But if you are a politician or someone important you can get yours done in 1 day. Go figure.
Doing well, got out and mowed my lawn this evening and sat on the back porch. I’m really feeling fine, but have to either get my results or wait out the 14 day quarantine period. We will get through this. Everyone stay safe and well.
Just to give you all an update, I got a call from UNC this afternoon late and my test came back negative! I am very thankful that I didn’t contract this virus. Thank you, everyone, for your thoughts and prayers. After 1-1/2 weeks of quarantine, I am ready to get out. Unfortunately, our North Carolina Governor issued an executive order today that will put a stay-at-home order in place at 5 PM Monday for the entire State for 30 days. Everyone stay well out there.
Mark, are you able to work from home? I started that two weeks ago. It is a different mindset.
Thank you Mark for sharing. I often wonder what if I will contract the virus myself. But to be safe than sorry, I am taking steps to ensure burdens on my sons are not daunting. It’s nice to hear that your symptoms have simmered. You and yours are in my prayers always. I look forward to hearing the results are negative. Tracy
I emailed my liver specialist about this a few weeks ago. He said those of us with PSC pre cirrhosis have an over active immune system.
Thank you for the update, Mark! My family and I appreciate you so much and would hate for anything to happen to you! We send our best vibes your way!
Stay well, big hugs,
Mark glad you had a negative result. I too am worried about this virus and what it means for those of us with liver disease. I am not on immunosuppressant, but when I called my Doctors they said I needed to be more worried about my immune system overreacting. Also, they gave me a round of Cipro to keep in my medicine cabinet so if I get symptoms of an infected duct I won’t need to go to the ER or hospital. Stay safe everyone!
My wife gets pretty mad when I tell her I want to go out somewhere. That thought usually does not last long.