Jun 21, 2020 Latest post:
Sep 24, 2020
Nathan was diagnosed with acute systolic heart failure, non-ischemic dilated cardiomyopathy, and severe left ventricular systolic dysfunction on 05-23-20.
Let me start from the beginning...
In early March Nathan and I started feeling very run down, almost like we had the flu, but we were still able to function. My sickness seemed to come and go, but Nathans’ did not. Nathan continued to have a severe cough, sore throat, shortness of breath, fatigue, muscle aches, rapid weight gain, and congestion. Nathan had several telehealth visits but was ultimately told the same thing each time… “You might have COVID-19. Isolate yourself and manage your symptoms.” Nathan would seem to get better for a few days to a week but then begin to get sick again. This continued until May 15th, when Nathan finally went into urgent care to figure out what was going on with him.
Nathan was seen on May 15th at the St. Luke’s Hospital in Two Harbors. The doctor who treated Nathan took blood samples, did a chest x-ray, and a COVID test. Ultimately, he was diagnosed with bacterial pneumonia. He was given a z-pack and sent on his way. Nathan took the 5 days of antibiotics and they seemed to help except for on the final day, this is when he really began to go downhill.
On the afternoon of May 23rd Nathan went into Miller Creek Urgent Care in Duluth to see about getting another antibiotic (because we were under the impression the z-pack was not strong enough). He was extremely exhausted and struggled to breathe even when sitting down. Nathan underwent the same tests that were done in Two Harbors, but this time the results were not the same. The doctor took off his mask and told Nathan that he does not have pneumonia, he is not contagious, but that he is in severe heart failure and needs to get to the emergency room immediately.
Nathan drove home to Two Harbors to pick me up and inform me of what was going on because I had been taking a nap. Nathan woke me up and told me that we had to leave now. He could barely get the words out, but when he finally did, I was devastated. We got our things together and headed to the hospital.
We walked into the Emergency Room at the St. Luke’s Hospital in Duluth and were met by a security guard who asked us why we were there. Nathan looked at the man and told him, “If my wife isn’t able to come in with me, then I will just go home and die.” The guard asked again why we were there, and we told him Nathan was in severe heart failure. The man said okay and checked Nathan in to be seen. Nathan was then taken back into the emergency room and was immediately seen by the attending physician. He was given a diuretic immediately and tests were ordered. A nurse came and got me from the waiting room and said that he is breaking the rules today. He wanted me to see Nathan and help calm him down since he was already having a hard time breathing without panicking. I was able to spend about 15 with him before he had to be taken into CT for a chest scan. He was very delirious and confused. He was not sure what was going on.
Nathan was admitted into St. Luke’s hospital that evening. He was poked, prodded, drugged, given tons of information. He was seen by several doctors while he was admitted. One of these doctors told Nathan that his heart was only functioning at 13 percent and if the drugs don’t work then he is going to have to have a transplant, he then tapped him on his foot and left the room. That same doctor called me shortly after and informed me of the same information. He was very disoriented his entire stay due to the drugs he was being given. However, he did lose 23lbs of fluids and was able to finally take a deep breath. On Monday, May 25th Nathan had an angiography and was discharged later that day.
Upon his discharge Nathan was given very generic information about his new diagnosis. There was no information about what he should or should not do, how much to drink, when to be seen before things get to where they were, etc.… The information was so generic that we later found the same Google site it had been printed from. The information about angiography was much more informative and included information about what to do, what not to do, how to care for the wound, etc.... He was never scheduled to meet with a cardiologist but was told to meet with his primary doctor in a week or so.
During the week Nathan was having a lot of different symptoms but we had no one to ask for help. On May 28th Nathan had a telehealth appointment with his old Primary doctor from Essentia. During that appointment, the doctor agreed that he needed to be seen by a cardiologist and put in an urgent request for cardiology. We waited for their call for several days until I had had enough. I finally called and began yelling at the woman on the phone after she told me that since COVID started they are not calling people to schedule appointments for about 2 weeks after they receive the request. Nathan received a call back 15 minutes later and was given an appointment on Wednesday, June 3rd.
On Monday, June 1st, we met with his primary doctor. When he came into the room, he immediately told us that he is not a cardiologist and will not answer any questions he may have about his test results from his hospital stay. We received no help that day.
It was finally Wednesday the 3rd and we could not wait to see the best cardiologist Duluth has to offer. Essentia came through for us when we needed it most. The doctor went through all his tests results with him, answered all the questions we had, and created a plan of action. The meds that Nathan was put on in the hospital were a very generic cocktail that they would hand out to anyone with heart failure. The doctor changed some one his meds and planned to see Nathan every week to manage them. The plan moving ahead was for weekly visits of medication management, blood tests, and managing symptoms until September 9th. On that day she would decide the best plan of action moving forward. This depended on if the medications were doing their job and his heart was healing or if we needed to explore a surgical option, including a transplant.
Nathan has had more bad than good days. His symptoms have gotten worse on certain days and because of that he has had several medication changes. The diuretic he was given (Lasix) stopped working for him and began damaging his kidneys so that medication has since been changed. We discovered that Essentia only treats their cardiology patients with medications. They will continue to increase the dosages and change the medications until the patient is able to sustain the perfect “cocktail of meds”. This was not acceptable to me. I watch my husband struggle more days then not to do basic things and I could not watch it anymore. The fact that his kidneys were damaged already from his medications was unacceptable. We decided to call the Mayo Clinic in Rochester MN.
Nathan was given an original appointment on Tuesday June 23rd but that has since been changed after the Mayo received his medical records. He now has a series of different appointments beginning Sunday, June 21st until Friday, June 26th. These appointments include blood tests, urine tests, chest imaging, electrocardiogram, evaluations, education, exercise tests, and a consultation with the heart transplant team.
And now there is noting to do but wait and make sure my husband is well taken care of.