update on my ma

[katie1234]

Hi there,

I posted last week about my concern over my mom being prescribed amiodarone. Turns out that we both (my mom and I) called her cardiologist separately and voiced our concerns. The cardio agreed to let my mom wait until her next appt to start the amio, which was on Tuesday. When she examined my mom, she found that she was in sinus rhythm and agreed to hold off on the amio for now.

My mom is seven and a half weeks post op and the cardio says that she is in diastolic heart failure. She said that my mom's heart is very fibrotic (I think stiff?) from the radiation damage she has, and that her recovery is going to continue to be a monster for at least a while.

It's very hard for my mom because the only symptoms she had before the surgery were occasional shortness of breath and lightheadedness, and she was extremely active (special ed teacher, super busy, went for 5 mile walks with her best friend everyday). Now she can make it around the block once on a good day and still has to struggle to get enough breath to talk sometimes. She is nauseas, exhausted, uncomfortable, and battles fluid build-up every day. She hates being out of work and she hates being in heart failure. At this point her docs aren't sure that she will get back to feeling like she did before. I am praying so hard that she will.

[Note for people in the waiting room: my mom has extensive radiation damage from cancer treatment in the early 1970s- hers is not a "typical" recovery.]

 

[katie1234]

Oh and PS:

Oh and PS:

Heart failure needs to get a new name. I can't think of a more depressing name. I wish that someone with a really positive-sounding last name (like Dr. Awesome or something fun like that) had discovered the condition and named it after herself. Then you would have an episode of Awesome Syndrome or something instead of HEART FAILURE. Ugh.

 

[Cooker]

Katie,

I am sorry that you mom is having such a hard time of it. I know it must be very disheartening for her. Give her my best and tell her that I'm pulling for her.

Tom

 

[Bina]

Katie, I understand what you and your mom are going through....I also had to watch helplessly while my mom had repeated surgeries and medical problems. It is hard on families....your mom is very lucky to have you pulling for her.
Best wishes for some improvement.

 

[Karlynn]

I too feel much empathy for your Mom. My recovery took a long time. Unlike your Mom, by pre-surgery health was horrible due to my valve issue and because of that it took me a long time to recover. It was about 2 years before I felt normal, and even then I was so cautious about taking it for granted. But I so understand her frustration and worry.

 

[WayneGM]

I'm so sorry to hear your Mom is having such a rough time. My thoughts and best wishes are with her, and give her the strength to pull though this. I hope she feels better soon. Both of you take care.

 

[Phyllis]

Prayers coming both your ways, Katie that your Mom's recovery, although longer, is complete. She's lucky to have your love and support and I know how much you feel lucky to have her. Stick with it and remember to keep us updated.

 

[ALCapshaw2]

Yep, Radiation Damage definitely prolongs the recovery period.

The GOOD NEWS from my recovery was that I continued to improve for 18 months post op.

The BAD NEWS from my recovery was that it took 18 months to reach my full recovery.

Did you see the Thread started by Adrian (a.k.a. Boo I need a Valve) entitled "Lessons Learned after AVR Surgery" (or something like that)?

It has EXCELLENT advice on how to approach recovery without (or at least minimizing) setbacks.

Bottom Line: SLOW and STEADY wins the race. On Good Days she could push *a little*. On Not-So-Good days, she should back off. Monitoring Resting HR was the key.

Believe me, I KNOW how hard it is to remain Patient and NOT get a little depressed that one's own recovery isn't going as fast and well as for the younger athletic types.

Tell your mom to try to look at things from a Week to Week perspective and not let the not-so-good days get her down.

Best Wishes to you and your mom,

'AL Capshaw'

 

[Susan BAV]

I'm sorry to read how hard it's been, Katie. I agree with you about the "heart failure" teminology too because it sounds like such an inescapably fatal sentence when in actuality many live with it for many years and enjoy a quality of life. But when the fluids build up, it is so miserable for the patient. I hope things smooth out for your mother soon. Probably your loving support is of greater comfort to her than you may imagine. Hang in there.

 

[hensylee]

Some don't have a quick recovery and with your mother's previous history, looks like hers is going to be not so easy. I hope she doesn't lose hope as she may improve steadily. Please keep us in the loop. Sometimes we can offer support that keeps one going. My thoughts and prayers are with her and your family while you stand by her. Blessins.........

 

[katie1234]

oh you guys

oh you guys

You are the best. Thanks so much for all of the wonderful support. I always read the comments to my mom and she loves to hear them.

She had a blood test this morning to check her kidney functioning, because she hasn't been peeing on the diuretics and her fluid isn't going down. We should hear from her cardiologist sometime tonight to see what we need to do. She is very worried, and I am pretending that I'm not.

I'll keep you posted.
-Katie

 

[Debster]

Hi Katie! My mom's recovery was super slow. She waited too long for her valve job and almost didn't make it. She had a-fib, infection in her incision(6 weeks with a picc line-wooohoo!) She even now has bouts of chf and battles fluid, and has a bivent pacemaker. But she is tough and it sounds like your mom is too. She has good and bad days. I know it is SO easy to get discouraged-but slow and steady wins the race Best wishes to you and your mom-please keep us posted on her recovery! Debbie ps-My mom has kidney issues too...it is such a tightrope to keep the body/meds in balance!! It will happen!!

 

[maka]

Katie

I sympathize with what you and your Mom are going through, but I believe she is doing better than both of you think.
I did not have symptoms before my operation either but at 7 ½ weeks after my mitral valve repair I could hardly walk a block.. I was extremely discouraged so I made my self count the step, yes the steps, when I walked and write them down every time. Once I started doing that and seeing myself going from 400 to 425 to 500 etc. I starting feeling better as I knew I was making a little progress every day.
It takes time, a year before you can star feeling as your old self and then afterward is a day at the time.
Cheer up, today is worse than tomorrow

 

[katie1234]

Counting steps is such a good idea, Maka! We just went for a walk and counted 460 steps. Now mom is resting, and we are planning to go for another walk later today. Great suggestion!

We were supposed to hear from the cardio last night to tell us the results of mom's kidney function tests that she had yesterday morning, but the lab didn't send the results to her (the cardio). Hopefully they will have the results for us today.

The cardio increased her diuretic last night, and she has peed several times since then, so that is good.

Thanks everyone, so much.
-Katie

 

[Bina]

If you get to the point where counting so many steps becomes hard to remember, then you can walk as far as a certain telephone pole or tree, etc. Best wishes for more bathroom trips too.

 

[katie1234]

Saw another cardio today

Saw another cardio today

Hi there,
So my mom went to her local cardiologist today, who(m?) she hasn't seen since before her surgery on 7/30/07. We went back to him because the cardio in nyc that has been taking care of her since her surgery keeps telling us "I don;t know why you don't feel better; I'm really worried; I don't know what's wrong; etc." She is real sweet and everything, but we need some answers.

And it looks like we just might get some answers! The cardio today spent a long time with us, answered all our questions, and is already starting to think about what might be causing/exacerbating the nausea, absence of appetite, and recurrent abdominal fluid build-up.

She is going to have an echo on Monday and meet with him next Friday to go over the results. He suspects that the inflammation and fluid issues may stem from a hardening of her pericardium (essentially constrictive pericarditis). He also lowered her toporol dose, because her HR was 52 and he thinks that it being so low might be contributing to her recovery problems.

Although constrictive pericarditis would definitely be difficult and I'd feel even worse for my mom, I do feel good that at least we are now actively testing hypotheses and working toward really figuring this out and getting her on the road to recovery (rather than being pulled over on the side of said road).

Alright then, I'lll keep y'all updated.
-Katie

OH AND: her kidney function is good, according to the tests, so that is wonderful news!!!

 

[Kathleen]

Katie I am glad you posted that she saw a different cardio. Good for both of you to get some answers. I had constrictive pericarditis after my second surgery but it was many years after. I would be suprised if it was that in such a short time after her surgery. The echo will help determine some things and a ct scan should show more. I had a battery of tests ruling different things out before the diagnosis was made. I did not have nausea and abdomen swelling. I did have a pericardectomy. I hope she does get some answers and feels a bit better soon.
Kathleen

 

[Phyllis]

Glad you are seeing your old cardio and hope you get some good news- an easy solution and your Mom starts on the road to a complete recovery.

 

[Karlynn]

It has to be some relief to feel like you are going to get some answers. My prayers are with your Mom.

 

[hensylee]

wishing your mother all the best in getting some answers - and treatment. We are thinking of her - be sure to let her know she is lifted in our prayers. And do keep us posted?

Thank you for the update.