This was a fundraiser initiated by Bergen Junge and members of the class of 1970 for their classmate, David Glenn.
I’m offering you a lot of information here to explain what is going on with David. I am posting this with permission from his daughter, Elizabeth, who has chronicled his journey here: https://www.caringbridge.org/visit/davidbruceglenn/journal
A YEAR AGO, July 2020:
On Friday, July 17th, one day after his 69th birthday, my Dad woke up like any other day. He drove to the pharmacy to pick up medication from the drive through. He cooked breakfast. It seemed like any other day. After breakfast he started feeling under the weather and lay down for a nap. Around 1:45 I had just gotten home from a doctor’s appointment for my 3 month old. I had been home for about 5 minutes when my mom (who lives with my dad in the in-law apartment portion of the house) ran to me and said that something was very wrong. My father was unable to stand, had a sudden onset of fatigue, and was losing mobility in one of his arms. I immediately dialed 911 for what we believed to be a stroke.
The paramedics came and were they ever heroes without capes! As my dad is not known to be great with technology and he was losing mobility of his arms, the paramedic took down my phone number and promised to give the number to the hospital or phone himself if we didn’t hear from my dad.
My mother, husband, my two daughters and I waited anxiously. Around 3:30 we received a call from my dad with the help of a nurse. He told us he was being admitted, that he’d lost mobility in both of his arms, and that he could no long sit up. The admitting doctor then got on the phone with my mom and informed her that there was an infection in the fluid of his spinal cord that was causing him to lose mobility. The said it was likely something called Guillain-Barre or GBS. At this time they also informed us that his rapid COVID test came back positive. At this point in his journey, COVID was the worst thing we could hear. It was our biggest fear when he was taken by ambulance that he would get a positive test. COVID is terrifying, especially in older people. My mom is at risk so we were scared of her exposure. It was scary because it meant that we all needed to be tested, including my 3 year old and 3 month old. It was scary because we knew it meant we would not be able to visit him. It was the worst outcome we could think of at that time that we didn’t even register the GBS. Little did we know that COVID was the least of our concerns.
3 hours later when we still had not heard anything, we called again. We spoke with a nurse who told us that dad was unable to move his arms still, but that he was alert and OK. Around 10:00, Dad called us. Only—it wasn’t Dad. It was his doctors. My dad’s voice was weak and hard to hear. He asked the doctors to make sure that I was with my mom and that her phone was on speaker so we could both hear. Then the doctor told us that he had to have a very difficult conversation with us. Mom and I locked hands, preparing for what we were about to hear.
The doctor informed us that my dad had a very rare disease called Guillain-Barre Syndrome or GBS. This is a very rare neurological disorder where the immune system attacks the nervous system. They told us that at this point my dad was mostly paralyzed. He could wiggle his toes but that was about it. He was having trouble speaking, swelling and breathing due to the paralysis. They informed us they were having difficulty regulating this mechanisms safely without assisted breathing and that he would need help. They told us it was likely he would need to be put on a ventilator overnight. They said once out of the life-threatening portion of the disease, recovery would be lengthy. They told us he was in for a long hospital stay–at least weeks. We did not know how much longer he would be awake enough or physically able to communicate to us, so the Doctor said Dad, in true Dad fashion, had prepared us a list. His voice was very weak, but he told us he loves us. I promised him to take care of mom and that I would see to it that everything on his list got done. Even lying in a hospital bed, his first concern was for his wife and family. With him, it is always others before himself.
For those of you who know my dad, this list was such a “DAD” list to create. The first part of the list was where to find passwords for accounts such as health insurance and financial information–which was a very sobbering conversation to be having– but the rest of his list was just so DAD!
1. Pay the contractor for the next installment
2. Green and Brown paint for the fence and wood at the old house is under the porch.
3. The moss has to be removed from the stones in the back yard.
The doctor chuckled at this last item on the list, remarking that it was such a dad thing to remind someone of.
Before I move on to his treatment and updates, I want to say a little about GBS. GBS is very rare. Only 1-2 people in 100,000 get this disease. It is even rarer to be triggered by COVID. Baltimore Washington Medical Center only gets about 5 cases of GBS a year, and they have had zero cases of it with COVID. GBS is a sudden onset of paralysis that generally is ascending. It usually starts in the feet and works its way up. It has a decent recovery rate, but recovery varies and is an extremely lengthy process. There is no cure for this disease, only recovery from it. The acute phase of the disease, which is the life threatening portion of it, lasts 1-4 weeks. Full recovery can be months to years and involves physical therapy, occupational therapy and speech language therapy. Some patients have permanent mobility issues, some recovery fully within in 6 months-3years.
The doctor indicated that my dad had thrown them for a bit of a loop. They’ve treated hundreds of COVID cases, but my dad is asymptomatic, and they have treated GBS, but not together. Additionally, my dad’s case of GBS is descending, beginning in the upper extremities and working its way down, instead of ascending which is typical. As you may or may not know, my dad was the first baby to survive a certain medical procedure when he was a baby. My husband joked “leave it to your dad to need to be the exception again–who has the chance to be written about in a medical journal twice in their life!?”
The doctor’s told us that my dad would be put on IVIG, which is intravenous immunoglobulin therapy, and plasmapheresis . Plasmapheresis is essentially where they remove your blood, separate the plasma that may have the antibodies that are causing your nervous system to be attacked, and replacing the blood so that the body makes new plasma that does not have antibodies that will attack the peripheral nerves. IVIG is where a sick person is given blood from donors that contain healthy antibodies. The doctor mentioned many other things — catheters, central lines, and numerous other things my dad would be hooked up to to help him get better. They said if in two weeks on a ventilator, his lungs were not strong enough, they would do a tracheostomy, because being on the breathing machine with a tube down his throat for two long has its own set of complications. Additionally, renal failure can be a side effect of some of his treatments so they said there is a possibility he may need dialysis at some point.
We then asked the hard question — what is his prognosis? The doctor said that the recovery rate for GBS is good. Things are complicated by the COVID, but thankfully my dad seems to be asymptomatic. They mentioned in particular that it was positive to note that most people with COVID are placed on ventilators because the infection in their lungs prevents their lungs from being able to get enough oxygen. However, my dad’s lungs are working just fine in that regard, but because of the paralysis his lung muscles are just not strong enough to work on their own, but his lungs are working just fine to keep his oxygen levels up. They said of course they cannot say for certain, particularly during the acute phase of the disease, but that the most likely scenario is he survives. They will not be able to make predictions about the extent of his recovery or how long it may take until later. Please keep my dad and mom in your thoughts and prayers. In 35 years of marriage they have never been apart for more than 1-2 weeks, and this is likely to be much longer.
MOST RECENT UPDATE:
July 9, 2021
Journal entry by Elizabeth Glenn — Jul 9, 2021
I wanted to give everyone an update–because it’s a biggie!
FIRST— my dad turns 70 on July 16th! My mom and I will be going to visit him that day, but my dad’s sister wanted to request if we could get try to get him 70 cards for his 70th birthday! I’m sure it would cheer him up to hear from all his loved ones! His address is: 1500 Pennsylvania Avenue, Hagerstown, MD 21742.
Now for the not so great news: My dad’s insurance denied him staying any longer–despite the fact that he cannot complete any activities of independent living and despite the fact that he still has about 100 days of coverage left in his policy. Basically the insurance wants to stop paying when he can “survive” at a lower level of care—which would be at home with in home PT/OT. It doesn’t seem to matter to them that this could negatively affect his long term recovery. There is an appeal process, but the risk of that is if we are denied, we are on the line for any extra days he stayed waiting for the appeal to be
For a number of reasons this is not the best option for him right now, the number one reason being that we are not equipped for him to be home yet. We are waiting for installation of the wheelchair lift, but it has been a lengthy process of getting bids, reviewing the best options, finding contractors etc. We wanted at least three bids because these wheelchair lifts are expensive — like 30K– and we wanted to make sure the estimates we were getting were consistent and trustworthy. However, this leaves us with not current way to get him in and out of the house and there are a number of other things still in process.
Another reason we would like him to stay longer is that the level of therapy he is getting in rehab is far greater than he would receive at home. At this stage, physical therapy is the most important piece in his recovery, along with time and we do not want anything to affect his progress.
They did a review of his progress where the physician from Western Maryland called the insurance physician basically to plead my dad’s case. The insurance physician granted him another 2 weeks, with an update to be done on the 20th. At this point, we have no idea what the future holds, but it seems like the beginning of the end of his stay at Western Maryland.
We are scrambling to have as much done as possible. He needs a large amount of medical equipment to help him with activities of daily living (transfer board, commode, shower wheelchair, etc.) in addition to the wheelchair lift. The bathroom also needs to be remodeled to widen the shower and lower the floor to make it wheelchair accessible. We are lucky that our stellar neighbor put us into contact with her dad who is a contractor and is going to help us get the bathroom and the work needed to install the wheelchair lift done quickly, so we can get the lift put in as quickly as possible. Finding a contractor during COVID has been a nightmare. They are all so busy from being halted for so many months last year. We were about to give up hope when, AWESOME NEIGHBOR FOR THE WIN!
If he does come home on the 20th, it is going to be a huge adjustment and a very hectic and busy time. I want to thank everyone who has reached out with advice on dealing with insurance and coordinating in home care, providing contacts for medical suppliers etc., offers of donations towards his medical equipment, offers to make or send meals when he comes home, offers to come help get him settled or be on call if assistance is needed, and well wishes during this time over the last year! We could not have survived this last year without you all and we feel so lucky to have so much support!
As nervous as we are about his long term progress and how being sent home now might affect him, as well as the fact that we are not ready for him yet, the thought of him finally being home is so exciting!
Thank you ALL!