Nancy's Heart Valve Journal

One week since discharge...feeling new aches and pains

June 15, 2012

Hi all,
I'm doing well since being discharged a week from today. Anything is better than being in that hospital room!
The weather has been spectacular and I find myself wishing I could do more outdoors but realizing I'm in recovery mode.
I'm taking short walks around the yard and keep getting attacked by bugs that I'm too weak to swat away. I'm using one of those OFF clip on repellents, I need to add a hat to my "look" of unwashed hair, loose fitting clothes and krocs.
Pain control has bee one Percocet at night and ES Tylenol every four hors during the day. I was pretty comfortable until yesterday when I started to get a pain on my right side. Its between my waist and armpit and feels like a baseball is jammed in my side. I tried adding an Aleve with the Percocet last night and might look into adding ibuprofen during the day.
I do have numbness of my right breast, but it's really not that troubling so that's low on the list of complaints.
I still have this sticky residue from my neck to my knees that's driving me crazy. I keep trying to scrub it off in the shower but it won't dissolve. Someone told me they paint you with betadyne, I'm not sure if that's what it is because there is no color to it.
I've been getting ocular migraines several times a day. I always got them before, so I know what's going on. I dont usually the them several times a day door days in a row though.
I've been cleared to drive on week after discharge. I'd love to go out to the store but don't think I have the energy yet. Maybe next week.
Today I'll be content sitting on the deck listening to the birds, taking a couple of walks, napping, reading and attempting supper for my boys (who are being spoiled by having meals in the fridge any time they want to dine).
If it gets too hot outdoors, I'll have to start doing more in the morning and resting in the afternoon.
Hope everyone is doing well!

4 days since discharge....doing well

June 12, 2012

I've been home now for 4 days since my MV repair.

I'm very weak and tired but thanks to this site, I know that's normal.
My BP has been low and I've had some dizzy spells upon standing. I'm seeing those lights in my eyes too.
I've been sleeping well. I have a good pillow set up (my nurse said my hospital bed looked like a pottery barn ad). I take one Percocet before bed an ES Tylenol during the day.
They say I can drive beginning Saturday. That's great, but once I'm where I've driven myself what will I do if I don't feel well enough to walk around?

All in all, I feel good for where I am in my recovery. Rainy day tomorrow, I guess I'll be laying low.

Nancy B

I am SO happy to be home!!!!

June 8, 2012

I have to say...I work in a hospital and have for many years. I'm not clinical...I work in the IT department and part of my job is supporting the clinical staff using the software for order entry and documentation.
being a patient is a totally different experience than working on one. I felt like I was going in with more information than most. In reality I think knowing whats going on in the background really bugged me. I finally lost all semblance of politeness by today.
The big controversy was over whether or not I had moved my bowels. My dr said when he made his rounds in the am..."well, if you have not moved your bowels, maybe you will go home tomorrow, eh?". He has a heavy Lebanese accent and is very strict. The staff seems scared of him. So my nurse said "She refused a suppository yesterday (like she was afraid she was going to get into trouble if I hadn't taken a dump). So I gave into the suppository, which was not immediately successful. In the meantime, my husband showed up raring to get back on the road (we live 1 1/2 hrs away). He was being hassled by customers and was "tired of being in the hospital". In other words....he had used up all of his "nice" earlier in the week and was annoyed.
They still hadn't removed the pacer wires, although they assured me that would only take a half hour......well, it ended up taking more than three hours! We were both ready to loose it at that point. So unfortunately, the end of my hospital stay did not go very well.
The excellent new is that I'm home and took a glorious shower and ate a piece of peanut butter toast that was heavenly. Tomorrow I look forward to a hot cup of (decaf) coffe. I will be a very happy camper.
I am so grateful to have this behind me. I have to agree with Kate, that the surgery was harder than I expected.
however, I am so thankful to be alive. it makes me feel rotten to think I'm complaining because of a delay when some of us never made it home. I hope this will be a lesson learned that lasts the rest of my life.

Take care everyone.
Thanks for all of your well wishes. This forum has been invaluable.

(and yes DVB, I do think they shoved a tub inside me....I think I heard them mention they ran out of tubes that day:) )

Feeling much better

June 7, 2012

Well you were all right.
They took out the drainage tub and I feel SO much better!
I'm taking some walks and coughed up some bloody disgusting yuck which made a hugh difference.
I think I mat just live!! Yipee!!

Look atguestbook

June 7, 2012

I just posted as a guest in my own guest book. Look there for an update.

My turn

June 3, 2012

Received an automated call from Yale University Hospital that I am to arrive at 6:30 tomorrow. I'm assuming that means surgery is at 8:00 or so.

I'm ready...mentally and physically to get this thing done and over with.

Karen Campo called me today. She sounds great. It was very reassuring to speak with someone who so recently went through the same experience. Thank you so much Karen!

I won't have anyone posting for me until I'm ready to do so for myself....so don't worry if you don't hear from me for a couple of days.

Take care everyone!

Expensive electronics

May 31, 2012

What did you all do with your iPad, phone, etc while you were in the hospital?
I wanted to keep mine with me...at least after I'm out of ICU, but am afraid of it being stolen while I'm out of the room (in body or mind).
Did you just stow it away in the night stand or was it a non-issue?
Thanks!

One week count down

May 28, 2012

I booked my surgery so far in advance, I feel like I've been waiting forever.
I'm as ready as I'll ever be to get this over and done with.
I had a little scare on Friday when I received a confirmation from my insurance company for the surgery on 6/12......what? My surgery is scheduled for 6/4! I had a bit of a meltdown (indication as to how close to the edge I am) and then contacted my surgeons nurse. She assured me the surgery is booked for 6/4 not 6/12. hwe secretary does the insurance authorizations and must have messed up the date, it will be corrected tomorrow.
I can only imagine how the people who have their surgeries bumped the day before....I think I'd loose it!
Sounds like it wouldn't be a big deal...but it is if you've been waiting and planning. Oh well, false alarm for me.

Take care everyone!

Second blood donation scheduled for tomorrow

May 20, 2012

Hi all,
Thought I'd check in for an update.

The hives have gone away. Thankfully, it was only hives and not shingles. I never figured out what caused it, but it's gone and I'm happy for that.

Tomorrow we travel to Yale for my 2nd autologous blood donation. The first one went fine, so I'm not as nervous as with the first.

Surgery is two weeks away. I've had my ups and downs. I thought I was doing well until I figured out the bad dreams and talking (okay, yelling) in my sleep are likely due to my stuffing my emotions or being overwhelmed with heart surgery thoughts.
I'm trying to stay positive by taking inspiration from those of you who had successful surgeries with relatively few bumps. I've had a few interactions with my surgeons nurse. I've asked her some questions via email and she's responded quickly. It turns out that they use the On-q pain pump that Kerry Thomas' surgeon used. I'm really happy for that as Kerry said she experienced no post operative pain.
We had a beautiful weekend here in New England. We opened the pool and got a lot of planting done. I'm creating my post operative recuperation nest. I look forward to pampering myself as I heal.

Take care everyone!

I'm so itchy, I could scream!

May 12, 2012

I broke out in hives yesterday. Pretty much all over my body...mostly on my stomach and chest.
My cardiologist doesn't think it could be a reaction from the contrast dye used in the cath last week, but the surgeon's nurse does. ???
Has any one ever broke out in hives during your heart experience? Is it nerves? I'm still 23 days out from the big event.

Is it normal to get shooting pains after cardiac cath?

May 5, 2012

I had my cath done yesterday. Like I mentioned in my last post they applied an angeoseal (collagen plug) to seal the artery.
Everything was going fine until a few hours ago when I started to get severe shooting pain in my groin. It almost feels likes cramp. It lasted about five minutes or so and then went away. It happened again when I was eating dinner.
I hadn't taken any pain med today so I took two advils.
There is no swelling,bruising or lumps.
Thought I'd ask you guys asthe majority have had Caths.

Thanks!

Cardiac cath. --- Done!

May 5, 2012

Had my cardiac cath yesterday. My arteries are clean as a whistle.
The procedure went well. I slept through it all. I felt the dye but it didn't phase me. It felt like warmth through my chest and yes, it does feel like your wetting yourself. But at that point I really didn't care. :)

They used a collagen plug to seal the artery. Has anyone ever had that? It's supposed to dissolve in 90 days. Geez, my surgery is in less than 90 days, I hope the don't try to go through the same whole for the bypass...I guess I'll have to ask about that.

I'm going to spend the next two days trying to stay still....I'm not very good at that. I have a ton of housework to do. Living with 3 men who have a different idea of what "clean" means leaves me lots to do.

Take care everyone.

Do right thorocotomy patients benefit from a bed wedge?

April 23, 2012

I'm looking at new pillows. I hate the one I have and currently have a raging pain in my neck. While I'm pillow shopping I thought I'd get a bed wedge. Thought I'd check with you all to see if it's only necessary to sleep somewhat upright if you've had a sternotomy and not a thorocotomy,
.
Any input would be appreciated. Thanks

Cardiac Cath Scheduled

April 22, 2012

I saw my cardiologist on Thursday. We scheduled my cardiac Cath for May 4th.
So at this point, I think I have all my necessary apps scheduled....
Cath, 2 autologous blood donations, pre-op appt & the actual surgery.
I'm not sure which one I'm looking forward to the least! :). I hate giving blood, I always pass out and get a massive headache.

I do have to say...my cardiologist was so wonderfully supportive. He did a really great job explaining the recovery process and letting me know he'll be there for support during my recovery. He does want me to go to cardiac rehab. It's funny, I work at the hospital where I'll have the rehab. I pass by the department on my way in in the morning and see the old farts waiting outside before they open. Little did I know, I'd be one of those old farts!! :)

Surgery scheduled for June 4th

April 4, 2012

my husband and I met with Dr. Hashim at Yale medical center yesterday.
He agreed with my cardiologist that myMVregurg is severe enough to require surgical repair.
He is 99.9% sure he can repair it via mini thoracotomy...so that's what we're going with. He thinks all ill need is an annuloplasty ring to tighten the valve. The leaflets do not look like they need repair.
He's trying to get my insurance to approve a cardiac CT in place of an angiogram. Has any one had one? My cardiologist doesn't agree and is going to call him....I'll let them discuss it.
They also have all their patience do an autologous blood donation of two pints and give the blood whether you need it or not. I'm not sure I heard anyone mention this.

Lots going on in the next two months.
I'm pretty happy with the way things are going.

I guess this is really happening

March 27, 2012

I had me TEE on 3//20...cardiologist said the regur looked more severe than mod/severe. He's referred me to a surgeon at Yale and I have an appt next Tues.
I have to get my TEE on CD and mail it to the prior to the appt.
They're scheduling me for a chest X-ray and CT scan before seeing the surgeon.
It's all moving pretty fast right now. I guess I'd rather just get it all over with rather than sit around and think about it.

Scheduled for TEE 3/20

March 13, 2012

Had my appt with my cardiolgist today. He said my echo still showed mod/severe regurgitation and no real changes from my last echo done this past December.

He wants to refer me to a surgeon at Yale, New Haven. First he'd like to get a TEE and an Angiogram.

The TEE is scheduled for next Tuesday at the hospital where I work (nothing like being seen in a johnny by the people you see at the salad bar in the cafeteria!).

Cardio says the TEE will get a better view of the valve and give a better idea of how the repair will be approached.

I feel better getting more information even if the surgeon decides to wait on the surgery until I'm fully in the severe regurg category.

Echo on 3/8

March 10, 2012

Hi all,
I had an echo on Wed. as a 3 month follow up to my newly diagnosed mod/severe MVR. When I orignally was referred to a cardiologist for heart palpitations I was pretty much asymptomatic. Since then, I've been having chest pain, some shortness of breath and lots of fatigue.
I was surprised to hear that my MVR does not appear to have progressed. I haven't talked to the cardiologist yet (my appt is next Thurs) but the tech said everything looks the same. What's really strange it she said the only thing I have wrong is the regurgitation. All other aspects of my heart appear to be very healthy. I guess it's unusual to not have a reason for the valve problem....I do not have a history of heart murmur, never had rheumatic heart or anything to explain what may have caused this or explain how long I've had it. I'm perplexed. Here I am preparing myself for heart surgery and now I hear nothing has changed in 3 months (even though I have more symptoms than I had prior.....am I imagining them?). I don't know what to think.
I guess I just wait until I see the dr. on Thursday. I can't imagine going through this every 6 months until they give you the go ahead for surgery. Ugh....

Looking for others with newly diagnosed MVR

February 27, 2012

I have looked through most if not all of the journals for people in my age range (53) that started with newly diagnosed severe MVR. I haven't been able to find anyone.
I have been waiting for almost 3 months for my next echo to see if my MVR has progressed. I was somewhat asymptomatic (went to the dr. originally for heart palpitations....that's what started this whole ordeal). I'm now having some chest pressure, shortness of breath and occasional heart palpitations.
My next echo is on 3/8.
Look forward to any responses or thoughts.

Nancy B.