Who Is The Enemy?
I wish I had better news to report. But I promised you the truth and nothing but the truth. That pesky fever that got Harvey back into the hospital is back, with a vengeance.
When Harvey was discharged for the second time we were given the guidance to manage any ‘low grade fevers’ with a couple of Tylenol. That worked for the first few days. Last night was definitely not a case of “managing the fever” and it was by no means low grade.
Harvey has been getting slightly elevated temperature late evening almost each and every day. So we did not worry too much when he started feeling a little feverish around 7:00pm. Tylenol to the rescue, same as before, right? Wrong!
Two hours later the fever had spiked to 101.2F. I made a phone call to the transplant ward at the hospital, got the ‘fellow’ on training. What else can one expect on a Sunday night? After a inconclusive conversation the advice was to take more Tylenol and sleep, show up for our 9:30 am appointment at the outpatient clinic.
Sounded reasonable, and an additional dose of Tylenol did reduce the fever a bit and let Harvey get to bed. Around 4:30 am I woke up to check on him. The guy was on fire! The temperature was was 103.6F, and Harvey was shivering up a storm. Another dose of Tylenol allowed us to wait it out until dawn broke.
We decided to get to the clinic a bit earlier, try for 8:30am instead. After waiting 50 minutes for the shuttle service that is usually a lot quicker than that, we finally got to the clinic just in time for our 9:30am appointment. Soon enough, as the experts were examining Harvey, he obligingly put on a spectacular display of chills, rigors and high fever. I have rarely seen him this miserable.
He is back on triple broad spectrum antibiotics (Vancomycin, Ceftazidime, Tobramycin), no one knows what else to do right now. The second viral titre for HHV-6 came back, it had nudged up from 700 to just a tad over 800. Not enough of a change in the viral counts to jump on it, the difference was well within the possible errors of the measurement itself. As I said in an earlier post, drugs such as gancyclovir and foscarnet are tough on the patient and only partially effective against the virus. Local guidelines call for hospitalizing the patient before these two drugs can be administered.
Harvey is going through another series of blood cultures, another chest X-ray, another chest CT scan - the whole works. The hope is that now the infection has gained strength it is more likely that they can catch it in the act, put a name to this enemy. Fighting the enemy is always easier when you know what you are fighting.
A new symptom that is scaring me: Harvey is complaining of significant level of pain on the right side of his chest, to the point where he says it hurts when he breathes. The docs cannot hear anything remotely suspicious when they listen to his lungs and heart. What gives?
We are back in our home away from home and this time the advice is to take Tylenol regularly every four hours to try and get ahead of the curve. We are back in the outpatient clinic first thing tomorrow for another round of Vancomycin, Ceftazidime, Tobramycin, then off to get the chest work-up. We should also get the early (24 hour) blood and urine cultures, see if anything started growing in the petri dishes. As I said above, I wish I had happier news to report. But it is what it is, and we are dealing with it as best as we can.
Be well,
Chaya
29 comments on "Scary Times"
Follow-up comment rss or Leave a TrackbackChaya,
Truly scary times. I hope you are trying to take good care of yourself as well as “Harvey” through all of this. Although we are not there in person, many, many souls are with you in spirit. Be strong…be well.
Kathryn
We know how scary it can be just going through these hosp trips during the rugged chemo to get ready for the transplant. We are there right now. Hang in there and be strong, you will make it, we are counting on you. Each day will get better.
Di
“Tough Times Never Last, But Tough People Do!” was the title of a 1983 bestseller by Dr. Robert H. Schuller. Sometimes I find just that title very helpful.
Continued best wishes to you and Harvey!
Don
Cambridge, Ohio
I believe that the patient is usually right. Since Harvey was hiking vigorously in Sedona very shortly before his current journey the pleuritic chest pain is disturbing…don’t leave tomorrow without getting the reports of the CXR and CT scan. I assume that they have checked his O2 saturation, but if not, make sure that they do. I’m hoping that he feels better soon and that the mystery is resolved.
Harvey fight hard-this bump shall be overcome also- We are cheering for you & know that you will make it through this tough time. Chaya take a deep breath - we need you to be well also.
All our love & prayers are with you for a speedy recovery.
Chaya and Harvey,
If it sometimes feels crowded in your room, just know that it is all of us there with you. Keep up the good fight! We are in your corner all the way.
We are following everything almost as closely as the true love Chaya…all our best hopes and wishes and prayers…strength and energy and health and healing…Aaron & Gary & the Team Down Under
Prayers together with love and strength. The biggest mystery is life after all and the rest. . . details. Could this be a hospital based impact?
Chaya.
If the CT and CXR are normal, pleurisy or pleurodynia (group B coxsackieviruses) might be the culprit. I am sure the docs there are all over this
The virus that causes roseola can also, as you are aware, cause other infections including pneumonitis. See below.
Stay strong. Get well.
Brian (another doc with CLL with a transplant 2 months away)
TI Human herpesvirus-6 and -7 in transplantation.
AU Dockrell DH; Paya CV
SO Rev Med Virol 2025 Jan-Feb;11(1):23-36.
Infections with the beta-herpesviruses human herpesvirus-6 (HHV-6) and human herpesvirus-7 (HHV-7) are ubiquitous in childhood. The immunosuppression secondary to organ or bone marrow transplantation together with posttransplantation management may favour viral replication and reactivation. HHV-6 and -7 induce immunosuppression by targeting lymphocytes, natural killer cells and monocytes. HHV-6 is commonly detected posttransplantation but variability in definitions of clinical syndromes related to this virus and detection methods have complicated understanding of the clinical relevance of HHV-6 posttransplantation. Clinical symptoms associated with HHV-6 include febrile illness, pneumonitis, hepatitis, encephalitis and bone marrow suppression. However, the majority of HHV-6 infections are asymptomatic. The incidence of HHV-7 infection and its clinical manifestations posttransplantation are even less well characterised. In addition, HHV-6 and HHV-7 are related to CMV disease or acute graft-versus-host disease and, indirectly, to increases in resource utilisation. Based on the potential relevance of these two beta-herpesviruses in transplant recipients, further studies are required to establish their real impact in transplantation. For this, sensitive and specific molecular diagnostic techniques allowing for the rapid detection and quantitation of virus and for the analysis of susceptibility to current antiviral agents are required.
AD Division of Molecular and Genetic Medicine, University of Sheffield Medical School, F-floor Medical Microbiology, Beechill Road, Sheffield S10 2RX, UK.
PMID 11241800
Quite a roller coaster ride you guys are on … Hold on tight.
Sending lots of patience and best wishes your way,
Diane MacKinnon
Give our best to Harvey! Times like this are scary but as one who has “been there done that” it is likely this too shall pass. FWIW, I think Harvey has done extremely well given the circumstances. Get another 4-6 weeks under your belt and lots of things will improve. When you hit 100 days it will be like getting out of prison!
Dear Chaya,
You may want to check for “Fungal” infection in the chest. My first cousin had sct at MDA. He spiked a fever, was in and out of consciousness for a considerable amount of time before they were able to figure out it was fungal.
I think it was pretty hard to detect, and also where it was located.
Prayers are with you,
Trying to help!!
Raymond Parker CLLer
Thinking of you both!
Dearest Chaya and Harvey,
My heart and prayers are so with you. My constant prayer is this is the birthing pains of a new life. That this will all pass and Harvey will have a new immune system and a new life. xoxoxo Always Nancy
Chaya,
Our best wishes to Harvey, and speedy recovery. You might google Pleurisy, in requards to Harvey,s chest pain. Thank you, to the both you,for the wonderful work you do.
Chaya,
May answers come quickly and may Harvey get back to a feverless recovery path.
You are both in our thoughts. This too shall pass.
We are thinking about both of you. Stay strong, we hope for better news soon.
My prayers are for you both. Keep it going Harvey.
You are both in my thoughts and prayers. I am a frequent reader of your website and have CLL myself, untreated at present. You are both heroes for all you have given to help the CLL patient community. Be strong, and know that many are remembering you in prayers.
Chaya, I had similiar chest pains that hurt when I took a deep breath, and I was in the hospital on Vancomyacin IV and Clindamyacin iv. Maybe that is affecting him?
Chaya:
Be Strong. Be Happy. Fight the insidious disease.
I am in Pallative care after going a different route than Harvey.
Hoping you come out the otherside with no major secondary diseases.
Yours Truly:
Bob McVeigh
St. John’s
Newfoundland
Canada
Chaya and Harvey
My thoughts and prayers are with you both.
I am praying. You are strong, Harvey is strong. It will be okay. I wish I was there to give you a hug. Beth and John
Just hang in there and be positive—-the bumps in the road will smooth out in time. Hoping for an update with good news soon—-
Marilyn & John
Thinking of both of you and hoping for good news.
Chaya - praying for you and Harvey. . .and hoping for good news.
I am thinking of you daily. Elaine
You guys have to hang in there… I’m counting on you!