It's nearly time

[chocoholic]

Hi I haven't posted since July (and all the posts from then seem to have disappeared), but some of you may remember that my mum had been diagnosed with aortic stenosis and that I was very anxious about it.

Anyway I had a terrible time trying to move her to a different NHS hospital, but finally managed it and she has now been given an op date for this wednesday. It may be subject to change if there are no beds or if they have emergencies, but at the moment that is the plan.

So I've tried to make her feel calm about the whole thing. We saw the surgeon back in August and he told her she has a 98% chance of success. She is still questioning whether she needs the op and that has been difficult for me to deal with as two hospitals have confirmed she has severe aortic stenosis and is likely to die in a a year if not treated.

They are planning to give her a porcine valve. The surgeon said that at her age 76, porcine valves can last up to 20 years as people become less active as they age. I guess it saves her worrying about warfarin, but then you have the prospect of another potential op in ten years because we know someone who had one ten years ago who has just had his replaced...its not really anything we have a choice in anyway. The surgeon said they do not like to give warfarin to people my mum's age as there is some sort of risk.

Anyway I bought her some things to take with her. A nice washbag and a new toothbrush and holder, a soap holder, facecloth, sensitive hand and face cream, some antibactrial gel, a small toothpaste. I wonder should I get her some handwipes too? I bought myself some earplugs as I sleep with them so I will put one pack in for her after reading some of the comments here.

The surgeon made it sound like she would be climbing mountains in a couple of weeks and would be able to do pretty much everything after a month. I somehow don't think this is the case having read the case histories on here. He also said in the letter to our gp that he spoke to her daughter (me) who is "very anxious about her mother's condition". This really annoyed me. Has anyone else had this kind of attitude from surgeons? I hate when doctors put personal comments like that in correspondence. Im sure most relatives feel anxious. Perhaps I just show it by asking more questions, but that's because I have an additional burden of having to translate everything for my mum as although she speaks english she does not always understand which is partly why I feel this is a burden for me. My brother and I have to go with her to any appointment like this. I felt very upset about his comment. Ive also felt very upset by the way the whole thing was handled by my own GP. He kept me waiting about three weeks for a re-referral letter. I need counselling for the trauma I went through trying to move her to a specialist hospital that would be easy for me to visit & was also recommended by a friend whose parents both had heart surgery there. Plus the other hospital is one she goes to for a benign tumour she has and it has negative connotations for her because there is always a potential cancer/operation cloud hanging over her when she has appointments for that.

Sorry to go on, I guess I just need to get this out of my system. For my mum this is in a way easier psychologically than it is for me because she has my support, but I have little support and part of my problem is that I do feel responsible for her happiness & peace of mind and Im trying to change but it's still hard for me. I can't believe how emotional I feel about all this despite all my efforts to be calm.

I was wondering what is a cough pillow? Is this something to hold when you cough to stop the chest that is healing hurting so much?

 

[deano89]

i am 4 weeks post op today sorry about your experience with your surgeon, my GP warned me that the surgeons are very blunt and matter of fact, but my surgeon couldnt of been better he put me and my wife at ease answered all our questions and gave us all the time we needed .
the cough pillow is indeed what it says on the tin and boy do you need it. its still painfull even with the pillow, but it definitely helps, tell her to keep it close at hand.
keep asking questions its important you and your mother are happy with everything after all its your mother who has to live with decisions made now good luck and best wishes for your mothers surgery hope it all goes well , i see people in there70`s & 80`s having these ops while i was in hospital and they just found the recovery a bit harder and longer than the younger ones

 

[Lynlw]

Hi, I can understand how you must be feeling, it can feel a bit over whelming having a loved one needing heart surgery. Both my Mom and son have had several.Chances are really good a tissue valve will last a 76 year old the rest of their lives. They last much longer in older people and has more to do with the chemestry than it does how active someone is. (kind of like how broken bones can take longer to heal in an older person)
I'm not sure what your Moms over all health is, but from our experiences if at all possible and there aren't any complications the best help you can be to help her to recovery is make sure she does any breathing excercises, walks as soon as possible little bits more each day is fine, Recovering well IS alot of hard work, you can't lay in bed and expect things to just improve, and for the doctors and nurses to be able to just make you better, the more you put into it the faster things get better. and remeber many/most people hit a bump in the road, don't let it freak you or your mom out if when she has a set back, especially since she is in a specialized hospital, they have seen everything and know the best way to handle it and help your Mom. Recovery isn't usually a straight lines, there can be alot of steps forward and then back, keep looking ahead to when the experince is just a blurry memory.
IF it helps, you you can be positive and pretend there are no worries in front of your Mom and then vent it here. it helps me get thru tough times doing that.

 

[Cris N]

I can only imagine how aggravating it has been for you to try to get her the care she needs. You should give yourself a pat on the back for persevering. You are a great advocate. Hope her surgery goes well and she has a smooth recovery. Take care of yourself too!

 

[chocoholic]

Many many thanks for your kind words of support and shared experiences.

Im worried about her recovery, because she feels fine now except when she overexerts and will obviously feel awful for a while after the op. Feels as though she is going to go through all this and feel no different from how she is now other than going through all the suffering & upheaval. Of course i have to keep telling myself that this is for the best, but do you see my dilema. If it was not for the fact that she may one day need major surgery for her benign tumour which she cannot have with this condition, I think I would feel much worse about the whole thing. She's been active all her life, she's very healthy never smoked or drank. Main reason she has this is the rheumatic fever she had when young. I am trying to be positive, truly I am...

 

[river-wear]

Bravo to you for being an advocate for your mum! Who cares what the surgeon wrote? You are taking care of someone near and dear to your heart. If he doesn't like the questions, it's just too bad for him. Take comfort in that doctors involved know that someone is watching out for their patient; maybe that will remind them she's an important person and not just another "body." Best of luck to you both on the big day!

 

[Lynlw]

Here's your old posts, if you haven't found them http://www.valvereplacement.com/forums/showthread.php?t=31864

 

[Bill B]

Understand that from the surgeon's prespective this surgery is VERY, VERY safe and VERY, VERY effective and that did not seem to reassure you, so he was letting the other doctor know there were still some concerns. His hyperbole about climbing mountains may not have engendered easy trust. Let him know that. He could be quite right about her recovery. A lot of how fast recovery occurs depends on condition prior to surgery. She appears to have minimal impairment now and that bodes well for recovery.

Congratulations on successfully moving your mom to a better setting. I understand this has been a terrible strain on you. It sounds like you are doing a fine job taking care of your mum.

Hope it goes well. It should.

 

[chocoholic]

Understand that from the surgeon's prespective this surgery is VERY, VERY safe and VERY, VERY effective and that did not seem to reassure you, so he was letting the other doctor know there were still some concerns. .

I think doctors assume the anxiety I am communicating on behalf of my mother when I translate her fears is coming from me. They see a smiling calm old lady but I know what she's thinking and what she will ask me when we leave. Ive had to spend hours calming her down about this and even had the friend whose parents had surgery come to talk to her.

It's really frustrating that doctors make so many assumptions about patients and their relatives and forget to put themselves in the patient's place. I guess that part of being able to work in the field means distancing themselves from any empathetic feelings otherwise they would be overwhelmed with emotion.

 

[Luana]

All the best for your mom's surgery next week!
Luana

 

[Lily]

Don't let the grumps rent any space in your head! You love your mum and have her best interests at heart and it takes a lot of effort and guts to get done what you're getting done. Good for you! And for your mum!

One thing I have found that helps in combating an unintentional intimidating air is a big smile when I first interact with someone new. Consciously try it and see if the grumps don't calm down a bit.

BTW, many years ago, my grandma was very close to death from a bad aortic valve. One hospital gave up on her. But my grandad wouldn't give up and found help for her elsewhere and she got a porcine valve and successfully sailed through the surgery. She was about your mum's age. Such a wonderful grandma! May things go so well for your mother.

Oh, one more thing -- was it mentioned? -- your mum will need the cough pillow for sneezes also. Otherwise, a sneeze also can momentarily be quite painful . (As I was thinking about the cough pillow, I recalled my first extremely painful post-op sneeze. . . )

Best wishes .

 

[Marcia58]

Im worried about her recovery, because she feels fine now except when she overexerts and will obviously feel awful for a while after the op. Feels as though she is going to go through all this and feel no different from how she is now other than going through all the suffering & upheaval

If your mum's experience is anything like mine (and I believe, that of many others around here) it may be a pleasant surprise how much better she feels, and how quickly. Because my symptoms had crept up so slowly until the crisis hit, I had thought I was asymptomatic--until after the surgery! Once I was past the initial phase of healing, I was amazed at how much less easily I fatigued.

Also, to encourage you in the difficult task of advocating for your mum....
I once had a doctor tell me, "Every patient needs an 'obnoxious' relative. It keeps the staff on their toes!"

Prayers for your mum--and you!

Marcia

 

[escargome]

Having been the "obnoxious" relative that Marcia mentions, I applaude you for asking the questions that you know your mom has, but will never verbalize to the doctor. I was my mom's advocate for many years and doctor's/nurses had names for me but I didn't care one bit. As long as they gave my mom the very best care they could (and would be replaced if they didn't) I let their perceptions of me fall by the way side. Hang strong, you have already come a good distance by moving your mom to a healthcare setting that will help her to survive. I shall look forward to your posts about how your mom does after the valve replacement. And tell your mom, yes she will feel better once this surgery and recovery is over. Don't forget we are here to lend support and help you to remain committed to the ultimate goal of better health for your mommy.

If your mum's experience is anything like mine (and I believe, that of many others around here) it may be a pleasant surprise how much better she feels, and how quickly. Because my symptoms had crept up so slowly until the crisis hit, I had thought I was asymptomatic--until after the surgery! Once I was past the initial phase of healing, I was amazed at how much less easily I fatigued.

Also, to encourage you in the difficult task of advocating for your mum....
I once had a doctor tell me, "Every patient needs an 'obnoxious' relative. It keeps the staff on their toes!"

Prayers for your mum--and you!

Marcia

 

[chocoholic]

aww thank you so much for the encouraging posts. I'm feeling all emotional now as I type. This has been such a tough ride for me. Being an advocate for a parent is no fun at all. But yes just as escargome mentions I'd rather be unpopular and have my mum feel safe and happy than not say anything and let the medics do as they please with her.

I bought my mum a lovely fluffy white nightgown and some slippers she wanted today. She was quite chuffed as they were exactly the style and fit she wanted. Even if she doesn't wear them she will hopefully have some comfort having them to hand. She's quite lucky as she rarely sneezes, but she does have a cough. I'm, hoping it will go by weds. thanks again

 

[netmiff]

you are doing a grand job for your mum, keep it up! I too did not think I had symptoms before my surger, ust though I was overweight, middle-aged, smoked and did not exercise enough. But there was a big improvement after surgery! Sounds like your mother is in decent health, he shouldn't have too many problems.

It is important to get your mother up and moving as soon as possible after the surgery, her appetite and everything will be off for a while, but she needs to move to get the anaesthetic out her body, and keep her musces toned.

Also, she will cough afterwards, there is a lot of gunk in the lungs after surgery, as they are "shut down" with the heartwhile on thebypass machine (I believe). Deep breathing is recommended, and I am sure she will be seen by some kind of physical or respiratory therapist shortly after, if not before, her surgery.

And yes, speed bumps are common on the road to recovery. However, the staff knows of the most effective ways to treat most of them, and you should not be too alarmed if something develops. Me, I was kept knocked out for 2 full days, due to some fluid build-up in or around my lungs, and they wanted me on the breathing machine.