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Need caregiver support

Gosh. Where to begin? I am the caregiver for my husband, who was diagnosed with CMML in 2018, went through decitabine chemo therapy through that winter, into the spring of 2019, then was going to have a stem cell transplant done at Seattle cancer care alliance in April 2019, but during the work-up, they discovered he also had prostate cancer and since it had not been under treatment, they sent him back to his hematologist. The hematologist in Seattle, called his hematologist in Minneapolis and they decided we should come and talk to her and her husband, a urologist. So, we came home to Minnesota, and did that, they did a work-up, and decided that they could put him on a hormone deprivation therapy and proceed with the stem cell transplant, then, after the stem cell transplant had been successfully completed, they would do radiation for the prostate cancer. Well, in October of 2019, Bob had the stem cell transplant, and due to GVHD and other things that kept popping up, he was in and out of the hospital that winter, and pretty much through the summer of 2020, finally leaving the hospital in about July. During treatment for gvhd, he’d gotten steroids, and so the muscles in backs of his legs and gluteus were weakened. In addition, his septum had a pre-existing hole in it, and being weakened by the steroids, in the course of putting on cpap mask, the cartilage collapsed, leaving him with a saddle nose deformity. So, he couldn’t breathe well. He had a successful stem cell transplant and as of latest bone marrow biopsy, leukemia free. He had gotten to the point where he had recovered his strength and was able to walk with hiking sticks, and then he had a 25 day course of radiation for the prostate cancer, and towards the end of that he started having less and less energy, and fluid retention and then he had surgery at end of July for the saddle deformity of his nose, was supposed to be in and out surgery and they became worried over his heart rate and atrial flutter. He was in hospital about 10 days, he went into hospital at 230 pounds, and due to fluid loss came out at 179. During the time he was there he had cardio-version. He was out of the hospital about a week and had just had the splints take. Out of his nose that afternoon and had gotten up in the middle of the night to use the restroom and tripped and fell against a TV tray and cut his face, needing stitches, so at 230 in morning we drove to emergency room. He said that until he fell, he was breathing the best he had in 40 years! At the emergency room, they stitched him up and were worried about his heart rate and blood pressure, saying that he needed a cardio-version. So, since they didn’t have a room in hospital and university hospital where he had just spent 10 days didn’t have a room, he sat in emergency room until about noon, when both hospitals had open rooms, we decided he needed to go to university hospital. Well, he spent Thursday afternoon, Friday and most of Saturday in hospital, he came home and started having a rash, which with cardiologist we decided was due to amioderone. Dr said to not take that. We saw cardiologist on Monday and he said Bob needs a cardiac ablation. So, we are waiting to get that scheduled.  WOW! He has home health therapist coming for it and pt, and we are waiting to get the ablation scheduled. 

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It sounds like your husband is having a real bad time of it. I can understand that it is stressful for you as well. A lot of your sadness could be because you are watching a loved one suffer. It is not easy being the caregiver, you have to sacrifice every day and each decision seems to ne er be for yourself. Take some you time if you can to recharge. 


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Regular Contributor

I had an RF ablation years ago. They had to do it twice before it took. Now I am in sinus rhythm and it is great. What kind of caregiver support do you need. It is good that you are doing such a good job taking care of your husband. My mom and dad are both in the nursing home on hospice and I'm going to visit them today. 

A friend in need is a friend indeed.
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