Ileostomy, Aspirate Pneum, CHF, Renal Fail Bills

Well, as June comes to an end Karen is in the hospital again. Ironically she was scheduled for a cardiologist appointment this morning but the onset of chest pain with left arm pain got her next door to the ER. They are keeping her for more testing. She is still battling CHF, congestive heart failure, and the numbers are worsening quickly. Her BNP a hair under 1,400 which is dangerously high. Please don’t be confused regarding hospice care and going to the hospital. Karen is on palliative care so she can be able to get treatment. We are so grateful for all that has been donated and now we have more bills coming and we are struggling financially, so any and all contributions are so appreciated. If you can give that’s amazing and if you are unable, would you please share this ? May God bless you tremendously.

If Tl;dr ~ Karen’s physical multi-system failure is deemed by hospice as likely/potentially imminent. Karen is requesting that anyone who might be able to help with the remaining hospital and surgical costs to consider any donation. Tremendous gratitude. May God bless & keep you. ❤️‍ Your prayers would be so incredibly appreciated. ♥️ ~~~Before I say anything else, please know that I had hoped so dearly, to be able to avoid reaching out with our needs. Yet, we simply can’t avoid ~ at least asking for help at this point. Thank you for understanding the gravity of our situation, and that I am mortified of even needing to ask for your help. Yet I also Thank You. Most of you are acutely familiar with my myriad medical challenges that ALL are due to my Genetic Connective Tissue Disorder, Ehlers Danlos Syndrome. However, I’m going to give a brief update for anyone who might wish to kindly share this with others. It’s incredibly humbling to be in this position again. When my beloved husband had his spine, essentially broken in 2 places three years ago, we had nearly zero income for almost a year. Aside from a very small amount of Social Security disability. The Love and Generosity from those who were in a position to help financially ~ blew us away… in the best of ways.We survived! So here we are again, facing the onslaught of bills, that (despite some grace due to our lower income, with both being on disability now) still adds up to a daunting amount. We simply ask help from those who are in a position to help with any amount of funds, or to please share this with others, who might be in that position. Thank you! SO, Ehlers Danlos is a beast. I wouldn’t wish it on anyone. I was diagnosed late in life, but its effects were evident even in my childhood. Having defective collagen, and therefore defective ligaments, tendons etc led to having far worse “wear and tear” than most critical care nurses experience on the regular. By age 32 I’d had multiple spine fusions. In fact, I was scheduled for my seventh spine fusion in February 2023 ~ that has now been put off due to the “present” I received at Christmas. That’s a bad joke. For Christmas 2022, I had my first small bowel obstruction. By February 2023, with another small bowel obstruction, things were much more serious. The imaging showed that my colon had stopped functioning. The colorectal surgeon stated that I was too malnourished to sustain a lengthy surgery (so that a brief loop ileostomy was done). It was a three week stay in the hospital with TPN, a type of nutrition that goes through the venous system aside from going through the usual gut process. I recuperated best I could, but came home on hospice. As many as you know, I have been on hospice, previously, then graduated as they call it, to Palliative Care. It looks like I will not graduate again. I will remain on hospice due to my multi system failure. Frankly, I was shocked that I did not have an aspiration while in the hospital for that lengthy stay. (Mind you I’ve had 3 different hospital stays since December). Due to my connective tissue disorder, I have a very rare complication, that is called tracheobronchomalacia, or TBM. My case is the worst my particular physicians have seen. Despite being on hospice, I remain in touch with my pulmonologist. It blows my mind that the original recommendation (in 2018) was to attempt to surgically attach my floppy, collapsed trachea to my cervical spine. This type of surgery was only being trialed in Boston. I had no interest in doing such a Garish surgery. As a critical care nurse, I have taken care of so many patients who have aggressive surgeries like this. I recall specifically caring for patients who had “radical neck dissections”, usually due to cancer. They would have 6 to 8 drains surgically placed in the surgical area and tubing hung to the wall suction. I hate to say it, but the patients looked like Spider-Man with extensions of webbing, if you will. Their mental state and depression was so difficult to help them over come with. The tracheopexy which was recommended to me, would have a very similar postoperative picture. It’s not some thing I choose to go through. And so far, the outcomes of this experimental surgery are poor to “fair”. Back to my ileostomy surgery and getting home on hospice. I cannot say how elated. I am to be home every day. I’m so thankful!! This is why when I experienced another one of my unfortunate nighttime aspirations of stomach acid into my lungs, I absolutely was not going back to the hospital, and hospice helped me with steroids and antibiotics. I very slowly recuperated, although each episode of this type of aspiration pneumonia worsens my pulmonary status. Sometime ago, one ER physician, saw my chest x-ray and asked how long I had been smoking. I was blown away, and my husband told him I’ve never smoked in my life. So, that might give you an idea how badly my lungs are scarred. The biggest two reasons I have aspiration of stomach acids only at night when I’m asleep is 1) I have one fully paralyzed vocal cord. 2) the TBM causes my airway to collapse at night, thus I have no control/capacity to protect my airway. This I’ve had dozens of Aspiration Events. This recent time, my fever spiked to 105 Fahrenheit within a couple of hours. I was delirious and didn’t know much, except that I would NOT go to the hospital. I’m grateful I did not.  Another quirk, that is part of my body‘s response to the tapering off of steroids is that I have gone into congestive heart failure. It’s been a little over two weeks now that this has been the case. It’s not getting better. Unfortunately, we don’t really know what to do. But Hospice is a pretty clear answer. I’m sure you get my meaning. The latest effect of the Congestive Heart Failure is that my kidneys are failing. Early Stage 3 at this point. If this were to worsen further in Stage 3, Dialysis would be indicated (although I would not choose to go through it). This is another reason I simply just am begging that my husband not be left with these expenses of mine? I welcome any questions. And I thank you for even reading this far if you have. We were told in 2018 that my death would be eminent. It blows my mind that for whatever reason my maker, has chosen to keep me among the living. Yet, it’s pretty clear that my systems are now shutting down, in all seriousness. Thank you. Love, Karen