Connect
← Return to Loss and Grief: How are you doing?
Discussion
Loss and Grief: How are you doing?
Loss & Grief | Last Active: Apr 7 12:18pm | Replies (932)Comment receiving replies
I was asked by Teresa, Volunteer( https://connect.mayoclinic.org/member/95110aa007ad79b253a017a5ebcc51b86505f8b82/ )
to move from https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/?pg=2#comment-116386
We knew it was inevitable that the Blood transfusion were only biding time - that there could eventually be a reaction to them or they would no longer work.:-
I knew something critical was happening with 6 in the last four weeks May 29-June 19 and a count of 6.5, 7.2, 6.4, 6.8 - like i said on the other thread what irked me was his comment of giving 6 units of blood all at once if he wanted them; then the trip to the ER on June 21-22 really topped it off I have no idea how I kept my cool and my thoughts to myself.... Tho its not in same location and under different name my mother worked in that hospital from 1954-1974; and her sister moved up from southern Indiana and started working there from 1968-1974 I was appalled at he being refused transport to I U Medical Center or Methodist given excuses that did not hold water - even after I said we would pay for the transport fees in necessary!
I feel we done our best on Monday June 25th getting him out of the house and down to I.U. Methodist E.R. I transported him myself in my personal vehicle with the heip of the son-in-law and son... we probably done the unconscionable in the son told him he was going if I called him back over as he and the son was physically going to carry him out I told the son-in-law to be back at 11:30 and we were gone... we had talked with son's oncologist research nurse and she had laid the ground work for our arrival at Methodist ER so we would not be refused and she talked to him what she said i am not sure but he called me back and asked about if paper work was ready he was sitting up in bed I faked that as I was not sure what he was talking about he acted like he was goign to start saying something and I just looked at him a told him the decision was his - he had to decide one way or another as his son had given up and was no longer willing to fight his lung cancer and walked out of the room - son-in-law came shortly after i told him what i had done next thing i knew he was frantically waving at me to get back there he had his pants up to knees but son-in-law could not hold him steady enough to get them up rest of way I had bought a rollator after son was diagnosed with lung cancer as I knew a wheel chair would not always be available they rolled out of beddroom inthat down the hall and when got to kitchen door of all things HE WANTED TO WALK DOWN THE THREE STAIRS and probably out to the car but he got lifted down it and rolled to the car in it.... he slept all the way to Indy tho he claims he only had his eyes closed...he made no attempt to talk so I know he did sleep all the way....
We are doing okay except wondering what we will do come winter... this place is a 1975 mobile home with major problems and a "dead horse" there are things in the works but he dragged his feet on proceeding till Feb. it could be as late as Oct. or Nov. before anything solid is known.
I have managed to get the cremation done and paid for... got into a fiasco with graves owned by his mother and him the township trustee claimed still owed money on and would not show son-in-law the books so after basically having a gun held to us and blackmailed I just went elsewhere to buy grave sites for the creamery house monument for him, his wife & 2 sons; the grave sites and the foundation is paid for... The grave sites ate up some of the monument money and I paid for the foundation out of my household money (SS) as not to cut into it anymore so will be very short on money this month but what the hell (oops) have been ever since all this started with him in Nov. 2016 and then add the sons trips to Indy since Oct.
We do expect to hear him yell for something.... miss him on the trips to Indy as he really was a real trooper with all going on with him he never refused to go until the last one for the CT-scan on the 25th he told us on Sunday we could go and he would stay home alone - but I canceled out immediately leaving a message on the oncologist research nurse cell phone.
The past two years he never really gave up but he did not want to go places only to the drs office; i did get him out to Walmart if i went but other than that he preferred to stay home.... before that we would go to the Eagles, American Legion and hear the local bands.
Like I said it was inevitable and I knew it... It was his time and he is relieved out of his suffering.... he never complained about health issues maybe he should of more... Its been a rough rough almost 2 years (all started Nov 7 2016) but so far we have managed to survive... I got to survive I promised him I would take care of his son, get him to his cancer treatments.... God will take care of us and provide for us...
Replies to "I was asked by Teresa, Volunteer( https://connect.mayoclinic.org/member/95110aa007ad79b253a017a5ebcc51b86505f8b82/ ) to move from https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/?pg=2#comment-116386 We knew it was..."
Hello reibur1951. Almost sounds like a disease that my #3 Son has. Doc's give him xx, but no pain pills. He hurts about one hour of his medicine. disease is called "Jak2) and can turn into leukemia. So takes the medicine and then within 30 minutes he is sweating so bad and the pain is just hi. I have to hide my pain pills. I have two kinds of cancer. One is just plain old cancer, othe is mesotelioma. I have received information that medicare will not pay for my blood work or chemo. I have lost my husband of 67 years and my #2 son has just lost his wife with lung cancer. His first wife died of melanomah. I am almost at the end of all stress stuff. I just can't take any more. I am 85 and am trying to live as as quite as possible. (Just not Happening.) These last months have been so stressful, I just don't know, what to do if any thing. It's hard. Nancy shortshot.
Nancy shortshot, I am profoundly saddened for you. I truly cannot imagine your physical and emotional pain. The stress must seem unbearable. You must be an incredible woman! May you feel God’s love and presence today.
Yeah probably is he was also diagnosed as JAK2 V617F Mutant but that was never fully explained and I am not sure if it was fully delt with unless it was via the blood transfusions; the Aransep he was badgered into with the attitude "side effects be dam" never listened to him really did not examine him during the office calls maybe once or twice but never fully like i said he had 95% of the side effects and the longer he was on it the worse he was getting it never brought the blood count up as we were told it was to do during that 8 months it transfusions every 2 weeks at some points after he was able to stretch to 3 weeks occasionally after Medicare refused to pay for it tried to put him on a 28 day pill REVLIMID® (lenalidomide) its side effects mimicked the Aransep plus said it effected he heart rhythm - he already had A-Fib since 2009 when he had heart valve replacement & minor artery bypass at the same time plus is had another side effect a skin disease that could cause peeling of the skin and send you to a burn center bottom line on the teaching sheet was it may cause Anemia and you may have blood transfusions it was like WTF the medication is very costly - besides the motto is you do no more harm than already is there or been done when I asked for explanation of side effects that's when I got told I did not give a dam only about money I was nice i bit my tongue and i have no teeth and kept my mouth shut The Aransep also effected the heart rate and the whole entire 8 months he was in out of A-Fib Mar/April 2017 he gave him Prednisone (steroid) because he was not eating and sleeping - he went into instant foot edema and would not listen or address the issue he could not even get regular shoes on - on May 16th 2017 he finally put him on a water pill but I had to ask him if he was going to do anything about the feet swelling (they were near 3 times normal size) as he walked out of the exam room the following Monday 22nd he had his regular primary care dr appointment - his feet were still swollen 2-3 times; he was in A-fib at 135+ we came home and Dr. called via his nurse and said if no better by mid-afternoon to get him to ER I told him figured it would be battle I came in here just had sat down & his son told me his dad was in truck ready to go to ER!!!! He spent a week in Intensive care, they pumped gallons of water off him, had to changed his A-Fib medication and he was in or as near as you could get to Congestive Heart Failure (that was one of the diagnostic codes used for billing) Nothing was never talked/explained he loved analogies - I told the ICU floor dr. about it and looked at him and told him I was not blond/dumb/stupid nor a 6 year old kid and analogy talked did not cut it (he about lost it) he must of told him what I said as he cut the crap out for a while but did have a tendency to go back int to
Sorry most of this was /is over in the other discussion group - but this is where I have come from - besides my mother and her sister were registered nurses and I am an ex-EMT
Connect
thank you @shortshort even tho it was inevitable since he was not making red blood cells blood not cancer so so round about way was told - his bone marrow just stopped producing no real answers the whole two years, just a bunch of analogy talk "goign to the gas pump filling up" etc. no straight answers, pushing drugs with bad side effects with the attitude "side effects be dam" not listening to him; me being told I did not give a dam except for money... the list goes on his count hit a high of 8.8 once after a transfusion during the 2 year period normal range was between 7.0 and 7.9 when discovered it was 5.8 and bottomed out once at 5.5 it was basically a transfusion of 2 units every 2 weeks he was on Aransep for 8 months (the last shot he fell in drs. office & hung on banister by one arm/hand) all they done was vitals and shoved him into wheel chair & wheeled him off to the scheduled transfusion - but his life during that time consisted of side effect 95% of them he did not want to do anything but come home go to bed get up to eat & bathroom would not get out of house except for Dr. visits 🙁 he would go once a month to Walmart with me but sit in the car because i refused to leave him home alone In Aug. 2017 Medicare refused to pay for it because his EPO was to high - he snapped back to basically normal self getting up wanting to eat etc. The transfusion just finally failed to do any good like said 8 in the last 5 weeks and 2 being on day he died with bag of plasma... Those last weeks were the hot humid weather too and he was having a hard time breathing....
The last 2 years was not "quality of life" and he was miserable; was un-happy that he could not do what he use to be able to do, seeing me do things he should be doing and bitching about it I did not mind I knew he was unable to do as he was once able to do... who would with not making blood and operating at basically 1/2 of capacity normal count should of been 12 at the lowest to 16.
You take care of yourself and prayers that things get better.