Tick Tock Tick........

[Richard L]

Hi
Gulp......My Operation is scheduled for 14th Feb. I'm going in on the 13th. (pre-op tests on the 5th, Gastroenterologist- to check out my crohns condition- on the 6th and my counsellor on the 7th)

I 've just slugged my last glass ( ok so it was a bottle ) of wine to celebrate....
well actually I'm scared..... There i've admitted it. No more of this macho bullshit.

I'm being "cooked" by Prof. Gilles Dreyfus at Harefield NW of London.UK

The final choice of op. to rectify my congenital bicuspid arortic valve is still open to debate,and could still change at the last minute, but my current preference is for a new procedure - a stentless autologous preciardial valve, with the Ross procedure as plan B

I can't keep defering the date as I have been for the last 12-15 months. My Aortic Valve is Just going to get narrower and my heart tissue increasingly thicker and less competent.... so here goes..... scary!

it just seems such a short period of time yet also an endless wait.
it's hard to explain but 've spent the week trying to "let go" - my family, my friends my music making.

I'm as worried by the post op stay at my parents, as I am by surgery. I tried desperately to find an alternative place to recouperate. but my options (and finances) have run out so I've no option but to put up with them. They mean well but i've had too many bad experiences as a youth in their house and fought too many recent battles with them, so that the thought of sleeping just one night at their house is getting me down.

There don't appear to be any (affordable) convalsescent /recovery centres in the UK (unless any UK members can advise me differently).

Can't wait to get back on my own two feet again

 

[hensylee]

Well, guess you are off on the trek and sounds like it could be a bumpy one after you get out of the hospital. I am sorry you are not looking forward to that part but you have to be somewhere that you can get help if you need it. If you just appear to be sick enough, maybe they will let you be most of the time. Long as you get plenty of rest and food to get you by, you ought to be able to go to your own place in 2-3 weeks. I stayed w/my nurse cousin and they were very good to me, but I sure did pine for my own digs. From the beginning, I was up before they were, making the coffee, catching the TV news and reading the newspaper while they slept. Took lots of naps during the day. Waited it out for a month, but finally just said "I am going home" and then I went. I know I could've gone before that - just didn't do it. If you can fix yourself coffee or tea, soup, toast, eggs, you will get by. You will know when you are able to fend for yourself and it might be sooner than you now think.

The time before surgery is a most anxious time and can be very scary. If you look all around this site, you will find that 99.9% of the members were just as scared as you - but look at all the survivors! Still here - still kickin - all grateful for their surgeries. You are going to be fine. Keep checking in here and you will find so many are here to lend support to get you through the next period till hispital time. This is the hardest part of all. God bless

 

[Bill Hall]

Rich - Those last few weeks can be really bad. You have to keep busy and your time will be here quickly. One thing I did was to look ahead to the time off after the surgery and things I had opportunity to get done and enjoy. Regarding the recovery, I was in the hospital for 10 days and was in really good shape when I made it home. I was 47 and I think your time with your parents could be short. Your time with your parents could also be an opportunity to make amends. They will at least be sympathetic to your condition and you should think about it. Good luck with your surgery and please keep us informed.

 

[terry40]

I was home during recovery

I was home during recovery

but my family alternated "baby/adult sitting me, I was surprise how attentive my parents were, even my parent-in-laws came in for 2 days, while my dad was having a procedure done. My in-laws constantly agrue with each other when they are together, but they were on their best behavior for those 2 days.

I thank God for all the help I recieved, my family came through for me when I needed them most.

I was glad when I was finally left on my own, they were holding my progression back. Trying to do everything for me.

The wait is very hard, I just had a 1 week wait, I had list of things to do to keep me as busy as possible.

I was most worried about the recovery too, I knew i'd be asleep during surgery, and that I had the hospital's best surgeon doing the operation.

My prayers are with you,

Terry40

 

[Richard L]

Hi
Thanks for all your support

Hensylee, ....I was supprised when you said only 2-3 weeks. The hospital told me to expect about 6-8 weeks for my bones to knit back and not to try an lift any weight before then (Shopping cooking, house work etc...) and aprox 12 weeks before bones are back to near weight bearing strength.

Terry,... my folks are always arguing when I go over to them. I suspect that without the aruing there would be too big a hole left. They are not the best at listening and I don't really want to have to fight to be heard when I get out of hospital. I've really tried talking to them about it, but they couldn't help but interrupt and get defensive. They really can't listen / hear.

Bill,... I've had quite a while to myself as I was made redundant and had a lot of thinking time. I used to be a slave to work and Its made me think about what I really want to do afterwards. but I can't get past "making music" and realistically that won't pay the rent!

Sorry to sound moody, I'm in a bit of a temper because I had booked a short holiday this weekend to Norwich in East the of England, to catch up with friends and play music. A sort of last outing before the big day.
I had to cancel it however as London and the East of England came to a stand still because of a big freeze. We were snowbound and transport couldn't move.


Richard

 

[sylviayasgur]

hi richard!
oh you poor thing, i remember the waiting was the worst for all of us!
we'll keep you company here while you wait though, ok?

about staying with your parents....
if you can manage to, nap and sleep as much as you feel you need (and that will be plenty), your parents may keep the arguing down when they see that you are taking all those naps. i remember joey sitting in his recliner all day and just dozing off every hour or two for awhile.
in addition, i believe that seeing your child in the condition you will be in will probably shock them and they might quiet down a bit.
you will be walking a lot, little by little, and they will probably be so concerned that it may really keep them re-focused.

in any case, you will be feeling so much better as time passes. only you will know when you are ready to go home. each person heals at a different pace.

try not to think about it and worry. think of it as just having those extra hands to help when you need them most.

wishing you all the best, sylvia

 

[hensylee]

Richard, I didn't mean you are going to be able to lift weights and clean your house in 2-3 weeks. I only meant that you will be able to take care of yourself at home - no lifting or anything hard - even no driving for awhile (several weeks). But you CAN fix your own foods, take showers, laze around whenever you like - in general, just recuperate but don't do anything the least bit strenuous. I did little exercises that they taught me in the hospital when I got home and that was the extent of my 'labors'. All the housework and lifting will wait til you are able. It will take your sternum a long time to heal. At first they say 5 lbs - then few weeks later it's up to 10 lbs and progresses from there with time.

Sorry about your weather. Heard from a friend over the pond that snow had set in - then it was on our TV news and you are completely at a standstill from what I could see. People sleeping in airports, cars in ditches off the roadways, etc. But the kids seemed to love it. Sorry you missed your outing - it was important to you and would have given you a good send-off.

 

[Zipper]

Hi Richard,

After my aortic valve replacement and double bypass I spent 5 days in the hospital. On the 3rd day in hospital I was demanding a shower and wanted to wash my hair...they said 'NO'...4th day..I was allowed with attendant and chair in shower...felt sooooo good.

Upon coming home....I requested that someone be in the house when I showered. My family was in and out...(husband and son). Other than that I was most happy to rest/watch TV/read/listen to music...by myself. My phone was nearby if I needed help. I could get up and fix toast/take a piece of fruit..whatever. I kept my cell phone on my hip. The guys popped in and out checking on me...I did fine.

My husband had a quad bypass..upon coming home he devied all orders and simply acted like he was all better and went about his business..I was very upset..but he was fine.

So..it's very individual. Some need someone there 24/7 and others don't. Your needs will be met from what you've said...and if it's overdone...just thank them and say bye-bye, I'll call you...LOL!

You'll be fine...try not to stress..it's not good for you! Take a deep breath and trust your God to take care of you.

Zipper/Joan

 

[Mb]

Hi!

Just thought I would pop in and add some words.....

1. You do not have to go to ever fight you are invited to. You can just not attend. Just say, with a LOT of kindness, "I am not well enough to attend this fight." and leave the room, and relax.
2. Your parents' fighting does not mean they do not love you. They do. A lot. It is not a matter of love.
3. You can be as happy as you make up your mind to be...even under circumstances that previously made you unhappy. You can control your own actions and reactions, but not anyone else's.
4. Say what you mean, mean what you say, don't say it mean.

Best wishes to you during your recovery. Peace.

Marybeth

 

[sylviayasgur]

marybeth,
that was so well said!
-

 

[joy]

Hey Rich, I can relate to you! Only it wasn't MY parents, it was my in-laws. My mother inlaw came out to visit us when my sone was being born and watch the older son(he's 4) , and she drove me NUTS! She slept until like 11AM, on my couch, and then tried takin over how I raised my kids, and ARGH! Drove me nuts! I just retreated back to my room and took a nap. While she was out here I let HER watch the kids while I rested. THen she pissed me off and I got into an arguement with her, and she left the next day. THANK GOD! Two weeks with a psycho in your house is TOOO much!

 

[Richard L]

ThanKs everyone

Marybeth. I've just "invited myself to a fight" with my internet connection - the gremlins seem to have gotten at it just as i've been trying to read and respond to the kind contributions you've all been sending.... very frustrating! - but I like what you've said.

I've been talking to people who've been through heart surgery and also read on this site how spontaneously emotional- tearful or angry they became, so I'm a little worried how much control I'll really have, especially as I've had several occasions with my folks over the last few weeks when I've had to 'count to 10'. ...but I do know that it can't be easy for them.

I've been invited to a holiday in France in June which I hope I'm able to get to. - hope that not too ambitious!

Richard

 

[Richard L]

Hey Joy You should talk to my sisters and compare notes.
They've all spent hours on the phone to me with a few rich and unprintable tributes to my parents (on one occasion I actually had to hold the phone at arms length).

When their kids came along my parents diverted their attention and efforts to them, but the spot-light is back on me.... I need a decoy!!

(I've talked to my sisters about staying with them. They offered to helped me out but other things beyond their control got in the way)

Richard

 

[pegne]

Post op

Post op

Richard, After my last surgery I was home by myself all day. My daughter played sports after school and my husband worked overtime. Right after I returned home from the hospital friends and family brought dinners in but it wasn't long before I was cooking myself. You should certainly not vaccum or do laundry or scrub. Anything that may be too strenuous. I made the mistake of scrubbing the kitchen floor two days after I came home. I was on steroids for rejection and they made me feel like I could do anything. Boy did I pay for it later. After about a week of being home I was able to go to my daughters softball games. It was early spring so I stayed in the car to watch but at least I was getting out. You should be able to do alot of things that aren't too strenuous after a short period of time. The most important thing is to listen to your body. It will tell you when to slow down. Good luck to you and remember that things will take care of themselves.

 

[Richard L]

A Serious RANT...

A Serious RANT...

OK so thought I was sorted .... and then I went for my pre-op tests today. Only 8 days out from my op..... aaaarrrgh doctors - I hate them. Now i'm feeling very scared.

The tests themselves were ok - XRAY, Echo, ECG, Blood, ( I counted 8 not so little vials of blood although they promised me it was only 2 tablespoons worth!), even an MRSA swab. i've already had an MRI and an angiogram.

Interestingly student doctors were present at my echo (which I had no problem with) and the Echo-meister gave a running commentary on what was being displayed which helped me confirm and accept my problems. - Narrowed bicuspid valve. Rgurgitation, turbulence.... "Jet Leision" damage to my aorta

but then came the pre- op "interview" with The Senior House Doctor (SHO). Professor Dreyfus was in Surgery so the SHO deputised......
"Why was I going for a tissue and not a mechanical valve"? .... Mechanical is better for someone of my age who is active. Tissue valves generally only last 10 years".

I thought I'd already resolved this issue.
I would have preferred a mechanical valve. Potentially a one op only solution BUT, I Have Crohns disease and I've been told that Warferin could exagerate any bleeding and inflammation.
The SHO Disagreed and thought it needed more investigating ..... This is seriously doing my head in.

So I go home ready to postpone and re-evaluate only to find
Prof Dreyfus has left a message. saying that he didn't get a chance to discuss my case with the SHO before my "assesment interview" and that he had been advised against long term dependence in my case on warferin.
So now i have BIG BIG (HUGE) doubts again.

I had decided to go for a new "semi untried" option, (PLAN A) - a stentless autologous pericardial valve.

Stented version have been tried before in the aortic position but there were a number of failures caused by shear stress accross mis-aligned stents so they were discontinued.

However not so well reported is the fact that where the stents were properly aligned there have been very good results so far. Also perciardial tissue has been used successfully in mitral valve repair.
The more conventional option suggested was a Ross Peocedure (Plan B) however this involves a non autologous pulmonary valve replacement. A deciding factor for me was that I could go from Plan A to B but not back the other way

Anyway...
Tonight was my last night out with friends and musicians (as I've got to semi quarenteen myself in order not to pick up any bugs or infections).
We made some really good music and every one was great, I felt embarrased and close to tears. I sooooo want to get back to playing my violin again.

Richard

 

[Johnny Stephens]

Richard, this sounds very frustrating, but rest assured you are not alone in this. Several people on this board have had to deal with the last minute curve balls in their valve selection. Others have had the surgeon encounter something unexpected during the procedure and have to shift gears on the fly.

It must be very frustrating to have your first choice waved in your face again.

Let us know how it goes....

 

[ccrawford]

Richard - I'm not experienced with the giving of expert advise on alll of this, but a couple of thoughts come to mind. Calm down- they have done a bunch of these operations, and a lot of things you are probably anxious about have no real bearing on the facts if you knew them. Re concerns about post surgery- figure out how to educate those in the house about the pain and discomfort you will experience, and let them know you need some time to hibernate and heal with a minimum of uproar. I'm sure they will understand and be helpful. By the time your surgery is due, the topic of type of valve will have been all resolved, and you will receive the proper valve for your conditions. It WILL all work out, it just doesn't seem like it at the moment. you have a lot of cyber friends rooting for you and we are a special bunch. Did you know that only about .005% of the population experiences this problem. Hey -- we're elite ! Get a good nites sleep. Chris

 

[Bunkenmeyer]

Fellow crohnie - hang in there.

Fellow crohnie - hang in there.

Richard -

I think we exchanged a few posts a while back before my surgery. I also have Crohn's and was worried about some of the same issues with my surgery. Just as a reminder - I had an ascending aortic aneurysm and moderate regurgitation. They did a valve sparing aortic root replacement which means they sewed in a dacron graft in place of my aortic root and then remodeled my valve to near perfect shape. My crohn's has (thankfully) been very well under control for the past three years with no major flares. I'm on 6MP (purinethol) and asacol.

As I think we discussed, my doctors had felt comfortable reccomending a mechanical valve as my back-up plan (if they could not repair the valve). I was worried about this option but my gastro told me has has patients on coumadin and although it complicates things, he felt it was an acceptable option compared to re-operating in 15 years. I spoke with another gastro and he was more skeptical and urged me to have a colonoscopy before surgery to make sure I wasn't actually bleeding or ulcerated despite feeling fine. I followed this advice and was pleased to hear that after three years of remission everything looked great with no signs of bleeding whatsoever. Of course, it this was not the case I might have reconsidered my option. As it turned out they were able to keep my valve so at the end of the day, none of this mattered I guess. But the takeaway for you I guess is that there is no clear answer on any of this so there is no right and wrong answer just the one you are most comfortable with.

I hope it will help you to hear that the surgery did not have any effect on my Crohn's. I went off my medication for two days after surgery and then they started me up again. I didn't notice any problems. The only issue that arose was a question around whether I should take aspirin after the surgery which is standard, I believe. They wanted me to take an aspirin a day for three months which I protested and got switched to an alternative blood thinner. The nurses and my surgeon didn't seem to realize that even "just a baby aspirin" could cause a real problem - inducing a flare. I didn't push back until I got home and started to worry that the aspirin was going to cause a problem.

Recover was a long gradual process but after about three weeks my wife went back to work and I was able to take care of myself for the most part. If you're home alone I would suggest having friends and family bring you dinners which you can freeze and heat up - preparing meals might be too much work. Breakfast and lunch weren't a problem.

Now the good news - its been nine weeks and I feel great. I went back to work this week. I'm going to the gym and walking faster everyday on the treadmill, even breaking a sweat. When its warm I walk outside for an hour or more. I know how scary all this is and its tough, don't expect otherwise but you WILL get through it just fine and the really hard part doesn't last that long and isn't constantly difficult - just some times.

I hope this is helpful.

Bunkenmeyer

 

[Richard L]

Hi all

Bunknemeyer......It's great to hear that it went well for you. I'm also due to get a dacron patch for damage to my aorta.

I went to see my Gastroenterologist (Who's in a different Hospital to my Cardiologist) yesterday. He confirmed that dependence on Warferin was a risk for me, (although not absolutely predicatably certain). He did a Colonoscopy in the summer and there was some internal ulceration and minor bleeding. he also noticed how even minor contact & irritation could cause my gut to start bleeding. - my crohns also has elements of ulcerative colitis. I insisted that he communicated and co-ordinated with The heart guys at Harefield. you've made a good point about asprin, I should check that out also.

Chris......, I really apreciate your advice. -actually I think that you are an expert because you're in the same boat and having to go through this as well.
I've decided to have to sit my folks down tonight and have a final "heart to heart" (couldn't resist that one-sorry!).
I've been reading your thread about "tubes" with great interest. It was a concern to me as well, but forwarned is for armed and will in itself help me to relax and reduce any discomfort.
I've started to build up some relaxation images and hope that they can be there when I come round. Do you know when your op is due?

I'm having a real problem avoiding people with coughs and colds. everytime I go out people seem to be sneezing and spluttering in my direction. I've picked up a minor cough although it might just be a nervous thing. I'm dosing up on vitamin C but suppose I have to be careful and not take any cough/cold remedies. I hope I can throw it by next week or else.???????.

Some of my musician friends have threatened to come down and serenade me at the hospital on Thursday night before my op. I don't know if the hospital will allow them in?

Do you know in those films where the clock on the wall winds forward hours and days in amatter of seconds, well wouldn't it be great if we could make that happen for real.

Richard

 

[Ross]

Do you know in those films where the clock on the wall winds forward hours and days in amatter of seconds, well wouldn't it be great if we could make that happen for real.

Sometimes yes, but for the most part, I'd take it slow and easy. Enjoy the time and try not to worry yourself too much. It'll be over in it's own time, so don't rush it. If you do catch a cold or something, have surgery put off until your over it. You'll need all the health you can get getting back on your feet again.