Since April Peter has been losing weight. He started at 205 lb; today he weighs 146.5 lbs. We noticed weight loss when the new jeans he got for his March birthday started falling off by April. Then he began passing blood, having diarrhea, and severe abdominal and back pain. With the pandemic in full swing, he could not get in to see a doctor until May.
He returned in June when the meds did not work. His blood work came back fine except for low iron. They did a CT scan and found lesions along his digestive tract. He was referred to a gastroenterologist but, again, with medical services in a crunch due to Covid, it wasn't until October that he could be seen.
By the October gastro appt. his symptoms had abated and he had stabilized at about 160-165 lb. They arranged for a 3 month follow up.
He met with his heart doctor mid December and weighed in at 168 with his boots on.
In late December he began experiencing problems again.
By the time he had his 3 month gastro appointment last week (JAN 2021) he was down to 155, passing blood, suffering abdominal cramps and diarrhea, with intermittent low grade fever. They did blood work. He had a dozen tests come back abnormal indicating kidney and liver function problems and infection and inflammation. He is also clinically malnourished.
Since last Wednesday's appointment, he is down another 8 lbs. He is still passing blood. His diarrhea continues. He has extreme pain in the abdomen and lower back where his kidneys are. His heart is acting up. He should be in the hospital at this point but with Covid, that is not an option. He is now on rehydration fluids. Peter had a CT scan today. Tomorrow he begins a clear diet and purge to prepare for two procedures on Friday: colonoscopy and endoscopy.
Peter has been working up until Monday though he was out several days last year. Fortunately his company's leave policy is more permissive with the pandemic. Coupled with the fact that his store had a major Covid outbreak with 50% of the 16 person crew out including two in the ICU for weeks, the managers are really cool about his absences---so far. He is still on our insurance even though he graduated in May, 2019, because the ACA hasn't been overturned yet. So he is fortunate in that regard as his employer doesn't offer insurance to the 90% of their employees.
Friday Update:
Wednesday's CT scan showed healing from the June CT scan, which had lesions along his digestive tract. However, he was diagnosed with a fatty liver. Friday's endoscope confirmed the healing from the June CT scan.
Today's colonoscopy finally gave us a definitive diagnosis of Ulcerative Colitis. It is an autoimmune disease which he will have for life. With an autoimmune disease, the body fights against itself. Unchecked as it has been, this would provide a plausible explanation as to why his liver has been affected. Fortunately, UC is treatable with daily medicine and requires no dietary change.
However, there is another problem which must be ruled out- which would require a major dietary change. The doctor was also able to take samples today to follow up what one of the blood tests indicated: Celiac Disease. It is a difficult disease to diagnose and confirm. At his June appointment, the internist tested for Celiac and it came back negative. Last week's blood panel only had one of the tests come back indicative of it. The doctor thinks the samples he took today will help make some leeway in determining if Celiac Disease is in play. For now the doctor wants him on a full diet including gluten. Gluten must be present if additional tests are needed.
For now, Peter is on UC medicine, steroids, and an antibiotic. Test results will come in over the next two weeks. He sees his PCP, an internist, at the end of January. His follow up with the gastro doctor is shortly after that. He has a week off to try regain his strength, add some weight, gain energy, and rehydrate.
Twice in the past year there have been occasions when I thought I would lose Peter forever. The entirety of this week, I have lived in dread that he would die. Tonight with this diagnosis in hand, medicine in his system, I feel less fear. At the late January appointment one of the questions will be addressing increased risk factors associated with Covid and his autoimmune disease.
This is a picture of his bent knee. The hollow at the back of his knee reveals the drastic weight loss. He is a walking 6 foot tall skeleton. His shoulder bones jut out. Embracing him, I feel all his ribs front and back. His eyes are sunken and his cheek bones hollow. He is a shadow of himself. I can't bring myself to photograph anymore of him. His thin wrists are apparent in the picture above. He has lost so much muscle mass that it will take months to regain.
Our family has been through so much over the past decade: my five surgeries in three years, then my ulcers and blood transfusion; Lance's recurrent brain tumors, surgeries, radiation, seizures, and automobile accident; and now Peter's illness. It feels like talking about it only burdens people. It feels like people just don't want to hear it. It feels like no one really gives a shit unless it happens to them.
Worse, we're now living in a pandemic where a large number of people just don't give a damn about the hundreds of thousands dead Americans, and the millions seriously sickened from it. People have the attitude that everyone will get it so "big whoop-ti-do!" Worse, some people get a mild case and become dismissive of the problem, ignoring the fact that they may have made others sick, some much sicker than they were, some dying.
Some people just don't give a damn and carry on with Thanksgiving and Christmas celebrations ignoring the fact that people like my Aunt's mother won't be there for next Thanksgiving because she and my aunt went to a multi-house Thanksgiving dinner that gave dozens of family members Covid: causing mild symptoms for most, but hospitalization and death for others.
I was sickened to hear of a friend who works in a nursing home where some of the nurses go without masks, employees go to family holiday gatherings, and in turn cause more outbreaks including dozens of deaths just since Thanksgiving. And my dear, sweet friend, he has to write letters to the families and handle disbursements of funds on behalf of these Covid victims, the victims of willful ignorance and callous disregard for others.
I am so sick and tired of ignorance- willful, inexcusable stupidity.
I am so sick of the dismissal of science.
I am sick of some people thinking that Covid is a political issue.
I am so sick of this shit-all of it! The shit ton of misfortunes our family has faced. The shitty people not giving a damn whether others have health insurance and access to medical care. Maybe if some of you had to face mounting medical bills even with insurance, maybe, maybe you could see why everyone needs medical insurance and a better medical system.
I am so damned sick of idiots not wearing masks. Sick of idiots thinking masks are an infringement of their rights- rights to what? right to be a Typhoid Mary? Right to be an asshole? The right to embrace stupidity?
I am sick and tired of all this shit!
UPDATE JULY 2021
BECOME AN ORGAN DONOR, PLEASE.
It's just too much to deal with. My son is dying and there isn't a damned thing I can do. In 12 days he has lost another 18 pounds. In the past three weeks, he has been in the ER three times, at afterhours urgent care once, and hospitalized twice. It's all too much.
When he was diagnosed with Ulcerative Colitis, an autoimmune disease, in January, 2021, I thought we had the answers. I thought we knew the direction. He had lost 60 pounds from April 2020 to January. He was put on steroids and gained back 20 pounds. He went off the meds to get vaccinated against a virus which could kill someone in his condition. But his symptoms returned. Then the pain began, a pain so fierce he was writhing in agony for over an hour waiting in the hospital ER. Hospitalized, a procedure performed to clear his bile duct, returning a day after release to be readmitted with more pain, new and old symptoms. Now he has been diagnosed with Primary Sclerosing Cholangitis, another autoimmune disease, and it is a step too far. It will destroy his liver in the end IF he can stay alive now, malnourished, and in pain, on heart meds as well.
We are waiting in a crazy holding pattern as I watch him waste away before my eyes. We are waiting to see if he can be approved for a special biologic medicine to address the UC. A medicine that is so expensive some drug companies exclude it from coverage. A medicine that costs thousands of dollars every month even if your insurance company approves and agrees to pay a little of the cost. We are waiting for a liver biopsy. We are waiting for a meeting with a hepatologist who works at the transplant center in Atlanta. We are told that after the biopsy THEN they can tell us where he stands in terms of Stage 1- Stage 4 disease. We've been told that a transplant may not last with his auto immune disease waiting to attack that transplant when, if that happens.
We wait and my son wastes away before my eyes. This sweet little baby who nursed constantly, his mom's big eater. This boy who lit up my life and with whom I have one of the closest relationships with, a friendship with. We wait and wait and worry and wait.
I haven't broken until now and now I am so completely broken I feel myself dying inside. I think, "How can I live without him?" And a moment later, I think several things all at once. I still have a daughter to live for. I have to survive this crushing sense of loss, of grief to be there for him. My biggest fear is that I won't be there when he dies. The shear impotence I feel overshadows all the fears and rage about medical costs and treatment options. They are there lurking and nagging in the background coming out in those moments of my worst fears when the tears are uncontrolled.
I think of all that I have stood through and remained unbroken. A marriage begun dealing with my husband's alcoholism, then drugs, then his endless illnesses. (As if my illnesses, my heart among them, weren't enough.) My husband has been through five brain tumors, three surgeries, 6 weeks of daily radiation, and more radiation via radiosurgery. And my husband's seizures remain. Seizures that began with nearly drowning in the tub in 2017. And in 2020 left him in a totaled car wrapped around the dividing road barriers. Seizures that continue to prevent his driving. My 5 hour daily commute to take him to and from work every day is impelled by my knowledge that without that job, none of us have health insurance. And now that health insurance will fail us in its inadequacy, driven by a bottom line, for profit. It is all of this that has broken me so utterly and completely that I live in despair aching for my poor boy's suffering.
My poor sweet boy. I have to be there for him. I have to survive this horror knowing that in the end I survive and he does not.
Thoughts and prayers are useless. Support universal healthcare.
Demand an end to for-profit health insurance.
Become an organ donor.
AUGUST 2021 UPDATE
Wanted to let you know Peter has been approved for assistance for that insanely expensive biologic medicine Entyvio. When he met with the transplant surgeon / hepatologist early August the doctor heartily supported the GI doctors assessment. This medicine helps control his UC; the UC flare up can trigger the PSC. (Yet PSC flare ups can act alone but just not as often.) Control one, lessen the risk with the liver disease.
Peter has been approved for the dosing by the insurance company but they won't pay for the medicine itself. After 3 initial IV doses over the next 6 weeks, he'll then go in every 8 weeks for the IV infusions. BCBS will pay part and Peter is responsible for the remaining balance for administering the medicine.
Here's hoping it works for him.
How expensive is Entyvio, you ask?
Google searches brought up these prices...
Entyvio costs roughly $6,700 for a supply of one 300 mg vial of powder for injection. This drug is usually given in a doctor's office or clinic.
Biologics can be extremely expensive. According to research from 2018Trusted Source, this type of treatment costs $10,000–30,000 per year, on average, and the more expensive types can cost more than $500,000 annually.
