when it rain it pours

[Beachgirl32]

I been doing really good on hemodialysis I have felt good . But now that m inactive on both transplant center . I had an echocardiogram my fraction rate is only 34 percent so they said it dangerous for me to get transplant years ago . When I was in hospital last year they took me off the medication that last heart doctor had me on when my ejection rate was 25 percent we got it up with carvediol but hospital took me off of that cause my blood pressure was way to low . I ask kidney doctor what I can do to bring it up he said walking can help walk where you can’t carry a conversation he said he will let the heart specialist decide on medication I go to new heart doctor at the heart hospital on 9/20 guess the one I was seeing they could not get me in soon and they said they want my appointment sooner than later.

Anybody dealt with low ejection fraction and other tips what you did to bring it up.

[horsie63]

Not a low EF but they put a stent in and put me on Billianta and while I'm on it I can't be on the transplant list. for at least 6 months. If it's not one thing it's another. Hope you can get the EF up.

[Beachgirl32 in reply to horsie63]

Girl one day it will happen for us. We will get a transplant. You are a lot younger than I so hopefully you have more of a chance they say I may be inactive for six months also but there’s a chance if it goes up way before that there’s a chance I would be active again, but think about six months they said

[Bassetmommer]

My first time having a stress test, I failed it supposedly because of having 6% ischemia. Which I then found out later was minimal and not a big deal. But, it took me off the list. I retested last year, and what ever they saw was gone. No heart issues at all. The reinstated me and gave me back my time. I have been working out two times a week in a water channel were we work against the current. It looks like fun and it is, but it is a hard work out. I had to build up to get good at it. It dropped my BP down as well. I also have a fit bit and I track my walking and shoot for minially 5000 steps a day. It also alarms me when I have been sitting too long. Really helps. I am so much better, my cardiologist discharged me from me having to see him.

[Beachgirl32 in reply to Bassetmommer]

That great and super cardiologist discharge you . I have an Apple watch where I have it tack my walk where I live it so humid and when we had 100 plus degree that made it hard to walk starting to get a little cooler I just took a walk was harder then I though cause it was still very hot I didn’t get my mile but got 3/4 of a mile I’m going to have to remember to do something inside

[horsie63 in reply to Beachgirl32]

I used to have a Garmin but since I have a graft on my left arm I can't wear anything there. I've considered getting a FitBit or another way and wearing it on my right arm. Right now I have a pedometer that I wear when I remember to.

Luckily I have a treadmill in the house that I use. It's been hot but this week the temps dropped into the 80's. I'd walk outside but after I tripped earlier this year over my own feet and bruised up my face I'm kind of leery of walking outside. I'm working on not having any balance issues and upping my walking speed. I have all the exercises from the PT I did a month or so ago so I need to keep doing them. I just get so lazy and unmotivated since it's just me and I have nothing to keep me going.

Maybe Beach you and I can post our walks/workouts and motivate each other? I did 5:45 minutes on the treadmill today.

[Beachgirl32 in reply to horsie63]

that good yeah we could keep each other accountable I’m not feeling good today so I can’t do anything right now maybe if I feel better tonight

[horsie63 in reply to Beachgirl32]

Hope you get feeling better soon

[horsie63 in reply to Beachgirl32]

Hope you are feeling better. I did 7:30 minutes on my TM today

[Beachgirl32 in reply to horsie63]

Great going still not feeling better doctor said I have a virus . I did do five minute brisk walk all that I could manage right now .

[horsie63 in reply to Beachgirl32]

I had something a couple weeks ago and was wretched for a week.

[Beachgirl32 in reply to horsie63]

Hope I get better soon I have my fistula surgery scheduled for 9/13 kidney doc told me not to cancel it I should be better way before then I still have the chest port and I know he want that out sooner then later I know the fistula has to heal before that come out.

[horsie63 in reply to Beachgirl32]

I hope your fistula works great…let it heal and grow before using it. Mine never worked so now I have a Graft. That works great.

[Beachgirl32 in reply to horsie63]

Ok what do you mean by grow? I haven’t heard that . The surgeon think he can do a fistula but I do have awful small veins he said my best vein is behind my arm he know that will be awkward he said he will study my vein napping some more to see if he can use another one.

[horsie63 in reply to Beachgirl32]

I guess I meant "mature" as I've heard it can take several months. I have tiny veins and I think that's why mine never matured. I did all the ball squeezes and kept it elevated on a pillow. I wish my surgeon just did the graft first. He knew my veins were tiny but he believes in fistulas. No wonder I really don't like doctors any more. They all seem so arrogant and set in their ways

[Lodilaker]

My mom had a kidney transplant when she was 74 years old. Her ejection fraction was only 25%. She did really well. She died from a fall 6 years later, but she could’ve gone another 10.

Karen

[Beachgirl32 in reply to Lodilaker]

That great to heal that she was able to have a transplant both hospital have put me on inactive

Sorry to hear she no longer with you she sound like an awesome lady

[horsie63]

How are you feeling today? I managed 10 minutes on the TM last night. My nephrologist was on a video chat today and I asked him about working out with my graft and he said as long as I keep it easy there's no problem with my little weights and the walking is good for me.

I hope you are doing better ☺️

[skmc619]

I went through exactly what you are experiencing. I was actually in the hospital for a scheduled transplant with a living donor when they decided to run an ECHO and saw that my EJ was 34% so they called the whole thing off and I was inactivated and given a chest port to start dialysis immediately. I was devastated. They ran a repeat ECHO 3 months later and it had dropped to 24%, more devastation.

But I was determined to get back on that list so I limited my diet to only heart healthy foods, took all the meds they prescribed (Carvedilol and hydrazaline) and began walking in earnest and carefully monitoring my fluid intake since they suspect fluid overload /high blood pressure caused the heart failure. Initially I could only do a mile or so as I was tired from the hemodialysis, but within a month or two I was up to 4-5 miles a day and by the third month was walking 7 miles a day (longest walk in the AM then shorter walks throughout the day) Many days I didn't feel like it, especially in the winter, but as I said I was determined to get back on the list.

By month 5 I switchehd to Peritoneal dialysis which did an even better job of removing fluids and my EF increased to 39% and I was in good (relative) health overall (I'm a 50 year old female by the way). By month 8 I was back on the list and in month 9( this past July) I received my transplant. there is hope!

[Beachgirl32 in reply to skmc619]

Great that you got a transplant congratulations to you you work hard to get it I think they will probably put me back on carvediol. But a low dose I was in it before but when I had terrible low blood pressure they took me off before when my ejection fraction went to 25 got it up to 56 but they couldn’t give me a reason the only conclusion they game to I had a virus and my heart I go to a new heart doctor on 9/20 you have given me lots of hope thank you