So sorry to hear this. At some point the kindest thing can be sometimes is to let somebody go, not take extraordinary measures, as hard as that can be. But, only you know what your mother would want and what you can do. . It is very stressful at the end. You have been a very dedicated daughter. Your mother is so lucky to have you looking out for her. Take care of yourself as well.
4 Likes
We discussed this with hospice and donât view a transfusion as an extraordinary measure. It doesnât take time, can be done on an outpatient basis, and completely restores her for months. We would be glad to let her go as appropriate and her MOLST says DNR, no intubation, artificial nutrition or even transport.
3 Likes
I would add that despite dementia, she still has quality of life, sitting in the sun, puzzles, desserts, visits, and isnât in pain. Not sure why we âwould let her go.â
3 Likes
That is helpful added info. Every family deals with things differently. As I said , only you know what your motherâs circumstances are and what she would want and what you can do. All the best to you and your mom.
I thought it was pretty clear in my first post that I wanted a transfusion. I am a trained hospice volunteer. Not time yet. I honestly felt your post was inappropriate.
2 Likes
Iâm very sorry. I think you have been going through a lot for years. We went through years of decline with my mother and mother in law. It is so hard to know what to do and you are doing beautifully. Again , very sorry. It is so tough.
2 Likes
Chasing anemia can be difficult.
Totally with-it MIL (94) had shortness of breath and severe anemia (Hgb 6) in March 2020; had the transfusions and was sent to GI, Heme f/u to find cause. Nothing found. Neither iron supplements nor infusions helped. Cardio echo showed severe AS so in Sept 2020 at age 95 had a TAVR which totally reversed the anemia (Hgb 11.7). Seemed her stenosis was so severe it was chewing up those red cells.
2 Likes
Thank you for sharing this, TAVR sounds amazing. Helpful to learn AS could be cause of anemia if standard treatments of iron supplements or transfusion are not effective.
1 Like
My dad is pretty much back to normal- after adjusting his O2 Friday afternoon, he stopped having night confusion by Saturday night and the muscle spasms tapered off too. I spent Saturday through Sunday morning and my sister stayed Sunday through Monday morning. Very grateful they have been able to resume regular routine and be independent again, for now. (Well, I did IT support this morning âhow do you turn off the iPad?â)
1 Like
I hate that âtake them to the ERâ answer. So glad that the doc is going to make a facility visit today. Hopefully she will agree to doing the transfusion in house. There is no way that should require a 4 - 5 day hospital stay.
Please let us know the outcome of todayâs doctorâs visit and kudos for continuing to advocate for your mom. Itâs not easy!
Yes there are medical conditions that will lead to chronic anemia, and some cardiac conditions that could have different treatments to reduce the presence of anemia is one source among a number of potential sources of chronic anemia. It seems a reasonable request to have an iron infusion if not a transfusion for this current situation - having one 1 - 3 X a year and the QOL @compmom 's mother has seems reasonable. Having the infusion at an outpatient setting and going back to her assisted living apt. The MD may be concerned about the CHF and general decline, along with any other signs/symptoms/organ systems. Based on MD exam and review of medical tests/patient history, may have some conclusions about not only the sources of the anemia, but working out the plan of care. There are more options with the treatment of CHF. The Chronic Kidney Disease - kidneys slowing down.
Grandfather, who was nearing 97, and limited to bedside recliner and his bed at his skilled care facility bed, needed to have abdomen drained (Ascites) and frequent blood transfusions - most likely had a form of cancer. A few months before this, he had a hernia surgery, and that took a lot out of him. He was happy until the end - and with stopping the extra medical procedures that did not alter the course of his health, he died in his sleep peacefully. The care takers said he asked to sit up in his recliner a little longer that night, and he probably knew he was going to pass that night â he wanted to grab the last bit of his QOL.
From what I gather, causes could be bleeding (she has a colostomy with very large hernia), Kidneys (GFR 23), or the heard issue (chewing up red blood cells) mentioned by @mominva. Exact same numbers in March (6) but transfusion took her up to 11. Now she is 7.
We have not been chasing a cause since testing stool was difficult with a stoma that bleeds (a little). She does have congestive heart failure but recent test on that was encouraging for now (up and down of course). She does have a heart valve issue. So maybe it is the stenosis.
I will have to look up TAVR. I have no idea what that is. I am glad your MIL had one successfully @mominva.
I think we will continue with iron infusions and maybe transfusion if the interval is long enough. If the interval gets shorter we will call hospice (3rd time) and indeed âlet her go.â
She is a hearty jolly personality even with dementia and still has an old boyfriend visiting.
3 Likes
Looked up TAVR. Her cardiologist wouldnât do a valve replacement years and years ago, when my mother was in charge of her own care and didnât tell us anything! I think we might have pushed a little on thatâŠif we had known.
Doing open heart surgery, heart valve replacement on an elderly person is tricky . My mother was 81 when she had surgery. She had never been in the hospital before except to have her two children. Her long time PCP recommended against it but a surgeon was willing to do it. She was never really the same after that hospitalization and was in and out of the hospital for years after the surgery with one thing after another ( including anemia , which in her case , they finally figured out was related to Hodgkinâs lymphoma). You just never know sometimes what the right thing to do is, which is what makes all this so difficult. Good luck to you.
3 Likes
TAVR TAVI is relatively new, still in clinical trials for middle aged and healthier populations.
1 Like
@compmom in terms of the heart valve replacement issue, I think there might be newer techniques these days that donât always involve open heart surgery. But, were not available when my mother (and probably your mom since you said it was many years ago) needed surgery.
1 Like
Yes, this. TAVR is Trans-catheter Aortic Valve Replacement. Done similarly to a diagnostic cardiac catheterization. For my 95 y/o MIL it required an overnight in the cardiac procedure suite. There was never going to be an option for open heart surgery. TAVR is relatively new; it was approved for high surgical risk patients only in 2012.
3 Likes
Interesting about TAVR. Thanks all.
As you all know, decisions are more nuanced than you expect before you get there! Before her colostomy, I called the hospice house and they came to pick her to take her to their beautiful facility to die. Then they told me she would still have the nasogastric tube (which caused delirium) and do a surgical vent for her obstruction (she looked like she was having triplets). So surgery didnât seem worse and we went with it.
For the anemia, again, t sounds reasonable to do transfusions/infusions on an outpatient basis twice a year but I doubt that interval will continue. We will make decisions at each point. Just hoping the doc will go along and not require ER.
I am going to ask the cardiologist about TAVR (not that we would do it); more importantly will ask if the valve issue is a likely cause of what is going on. I would like to avoid a bunch of other tests.
It makes me feel better that it is new and wasnât available before. Her aorta is pretty narrow too.
She comes roaring back from the brink every time. One of these times she wonât. In the meantime today many calls about wanting gin! (No I donât bring it⊠but I tell her I willâŠ)
Have a good evening. Itâs beautiful here in MA.
2 Likes
They should actually be able to tell if it is iron deficiency vs hemolytic (chewed up cells) just by looking at the blood cells and a couple of other blood tests!
2 Likes
Her ferritin was low. Thanks for clarifying that the âchewed up cellsâ is hemolytic.
2 Likes