Today’s good information: I arrived to meet up with everyone (Tom, Kim & Lee) after 10am at the hospital. They were already in visiting and Jenny the nurse didn’t want more than 3 at a time with her, so Lee left. The lasix has certainly drained off enormous amounts of fluid from her system, probably placing her into a more normal realm. Her legs and feet were also back to normal in appearance. According to Dr Amean her heart and kidneys are functioning well. Can you tell I’m feeding you all the good information first?
Bad information: Unfortunately there is a lot to swallow. Yesterday the loaded her system with 2 units of whole blood and a “six pack” of platelets. This raised her platelet level up to 30k and in two hours it was back down to 19k. In addition to her body killing off the new platelets, it has also started destroying the red & white blood cells. The fancy name for this process is autoimmune hemolytic anemia and thrombocytopenia (for the platelet problem). Nothing like having your own immune system try to sabotage your body. She is also experiencing bleeding in her lungs. Her “sucky stick” (a suction tube she can place in her mouth) was showing the remains of what had been coughed up. To top it all off she has a gallbladder stone blocking the way which is causing a low grade infection. How much more can her little body take? Holy crap!
So she is receiving antibiotics, IVIG (intravenous immunoglobulan which helps replace her depleted antibodies), glucose, and a multitude of other drip system goodies. Her appearance is not good (sunken eyes doesn’t look good on anyone). However Dr. Amean said that “on paper, she could come through this one”. But Evelyn has not done things according to books. Her body/mind has certainly not taken the easiest route through the past many years. The good doctor wants to wait until Monday for steroids and IVIG to take effect. If it doesn’t, then we will make her as comfortable as possible with medications until the end comes.
Tom headed back to Bend, Lee was off for his second visit and Kim was going to take a nap. I drove back to Albany to get this posting in and try and decipher all the terminology Dr Amean threw out there today. If you have further questions on the autoimmune problem or immunoglobulan, give google a try. There is certainly loads of information out there. I just wish I wasn’t learning it under these circumstances.
8 bald eagles today on the drive down.
3 thoughts on “Autoimmune hemolytic anemia and other fun stuff”
Hey Gale! Checking in often as we send blessings to your family.
Does Evelyn have an advance health care directive in place? She absolutely has the right to refuse tests that are not in sync with her view of quality of life, to discuss options through a health care advocate etc. If she is unable to do so, then her durable power of attorney should be legally able to advocate on her behalf.
Benton Hospice is an AMAZING resource for support to navigate your way through this maze. They offer a lot of wisdom and kindness which can be a real blessing. The services are free. 541.757.9616
Know that it’s okay to ask E. directly what her wishes are hour by hour and to give her permission to go when she feels the time is right. Reassurance that all is well and will continue to be well, will be a comfort to her. Even people who are taking medications or unconscious register this conversation.
It’s hard to know how to balance activity with stillness. One suggestion I can offer is to bring in family photographs for story telling. Again, let her energy level guide you but the laughter and memories shared within your dynamic will ease the situation for all.
It is entirely normal to be experiencing every emotion on the spectrum, know that there is also a great deal of beauty to be revealed in this sacred time.
Cherish every moment. Know that you are cherished as well!
Gale we want to thank you for keeping us posted on Aunt Evelyn’s condition. We pray she is being kept as comfortable as possible during these difficult days. Its nice to know that she has such a loving and supportive family.
Bob & Gayle
Love to all of you. Words only scratch the surface of what we are feeling. Evelyn is dear to us and we remain positive she will rally. Give her a smile from us and a hug. With you in spirit. She knows we are giving her all our support. Take care of each other and stay well. Love, Marilyn, Ron, and Sparky dog