July 28: On my own, explanation of surgery

Well, it's Saturday afternoon. Beth decided to leave last night. I can't blame her; between vacation and me she's been away from home for over 6 weeks. Joanne came over last night and we got a bunch of things accomplished. It's mostly small stuff that you "normal" people don't think twice about but for me is painful. So, for the first time in 3 1/2 weeks I am alone. It's kind of scary. Not that I can't take care of the basics, but it has been good to know that someone has been right there to step in and help. But time to advance onward!

For clarification purposes (and for new readers) I wanted to explain some of the medical stuff. Since my case has stumped many board certified cardiologists & surgeons it is difficult to understand everything. The first heart repair on the mitral valve (opening or door between the top and bottom chambers on the left side of the heart) corrected one thing and left something almost as bad. The second heart repair corrected that badness and, for a few weeks, seemed to make me feel better. The the lung surgery (thoracotomy) was the result of the first surgery: instead of splitting my breastbone/sternum they separated the ribs on the right side about 4-5 inches for 10 hours and the ribs stayed spread too wide letting the lung come through with coughing, laughing, etc. So they put mesh on the inside of my chest wall to keep the lung from coming through the ribs. (Hernias--not just for the groin and belly!) That surgery caused the most pain. I continued to feel worse and worse after that surgery; testing showed that the valve area was too small, not allowing enough blood to flow quickly enough to meet the demands of my body. No one knew why.

This third heart surgery showed the reason: there was a huge overgrowth of tissue in the valve area causing the opening of the mitral valve to become increasingly small. It's like a keloid, or too much scar tissue just going wild. No one's fault--just my body. But the biggest surprise was this: my mitral valve was so small it was the size of an 8 year old child's. They couldn't tell until they cut the whole thing out. Dr. Cohn said it was the tiniest valve he had ever seen in an adult. So that kid-sized valve was trying to support an adult sized heart and body, while also being malformed. All of this is congenital, and worsened as I got older. While I always seemed to tire quickly and be out of breath everyone assumed that it was because I was pudgy and out of shape. (I wish I could tell a few mean gym teachers from high school about this!)

Because of the small size area and the over-growth of tissue, Dr. Cohn had no choice but to replace it with a mechanical valve. The tissue won't overgrow the metal, so while he put in the smallest valve he has ever used, it will hopefully be a larger opening. He then took out every piece of tissue he could in the left ventricle so that there was as much room as possible for blood, hoping that because the ventricle squeezed well that it would be able to handle all the supports being cut out. He also decided that he should check out the tricuspid valve (on the right side between the top and bottom chambers) because it was always leaking. It was assumed that it was because of the back pressure from blood not flowing through the mitral valve, but on getting in and actually seeing it he found that it was structurally abnormal and flopping all around. So, just like the repairs on my mitral valve, he put a ring and some stitches in to narrow the opening. (I like to think of it as a tummy tuck for the tricuspid valve!) So my heart and lungs have lots of new things to keep them behaving themselves for the first time in my life. While everyone is being very conservative about the outcome, considering the other surgeries, it is hoped that I will be able to do more and be less tired after I recuperate. Time will tell how much of an improvement, but to avoid disappointment I am keeping expectations somewhat low. Hoping for a pleasant surprise.

Well, I've rattled on long enough, but wanted to clarify some confusing stuff. I've gotten some lovely flowers and several more cards; both of these mean a lot to me. Thanks for checking in, Laurie

July 26: Home Again

Hi there! It's been two weeks since the surgery already! That means only two more weeks before I can at least do some local driving.

Got home on Tuesday. There is just nothing better than being at home when you aren't feeling perfect. Beth is still here with me, she is planning to leave Saturday morning. I've had several visitors: Bill (my contractor) & Alice (cat/house sitter) were here when we arrived. Joanne came over Tuesday evening--on her birthday! Brenda was over last night and Bidge came over tonight. The cats have made it very clear how happy they are that I am back. While Chester still feels the need to hiss at everyone he is much calmer. He rarely lets me out of his sight and is currently on the table watching me type. Tabitha is also usually present, and Zerla can't get enough petting. KC remains mostly wrapped up in his food, although he did come up on the couch with me yesterday while I was napping.

My lab results from the draw yesterday show that my hemoglobin is up a little (I'm anemic from the surgery and the blood thinner) and my INR (the measurement of how thin my blood needs to be) is finally over 2.0 with the goal of 2.5 to 3.0. This will be for the rest of my life, because mechanical valves have a tendency to develop blood clots which then can break free and go to important places and cause bad things like strokes and kidney problems. Food affects the level, so I am trying to eat normally, but my diet will always be affected.

The good news is that I continue to feel MUCH better than I did at this point after the other two surgeries. I still get tired and short of breath, but less than before the surgery. Almost everyone who has seen me or talked to me has commented on how much better I sound. We did some errands today, and I got tired, but I'd been poking around the basement in the morning. As it cools off this evening we will go for a walk. I need to do that regularly to build my strength up. While I did walk about 6-7 blocks (big ones) last night I was sweating and tired. But that will take time. Dr. Cohn wants me walking, but nothing else for six weeks. I am going to look into somewhere with a pool as a way to get exercise for my whole body but not too strenuous on my upper torso. My upper chest is still painful almost constantly, and I wake frequently during the night when I shift in my sleep and cause pain. It will get better slowly, based on experience.

My next post I will try and explain more about the surgery findings and their impact. As usual, I'm unique!!

Thanks to everyone who has sent cards--I really enjoy them. I'll post soon, now that it is easier to do so from home. Laurie

July 22: Catching up

There has been some problem getting on line at the hotel, so that is why no recent posts. Joanne needed a break.



Have had a wonderful few days, including going up to Maine yesterday to my cousin's place on the coast where you sit on the porch and watch the waves crashing on the rocks. Then went out and had the most incredible fried clams--better than I have ever had. Got back to the hotel late and was quite tired. Today my cousins Lyle and Martha came to the hotel on their way back to NH for Lyle to go to band camp. Did one of the trolley tours of Boston, then got off and had dinner. Again, tired, but a good day.



The majority of my pain remains in the upper chest where the breastbone was newly cut open. There is also some pain in my left groin where there is a 4+ inch incision from catheters and monitoring equipment. It seems to be healing strangely, and is in a bad place. I am feeling tired, but am delighted at how much better I feel than prior surgeries. That being said, I am still out of breath, even with talking. I'm walking every day plus the activities, and when I get home I will try to do some regular exercise so that there is a direct comparison for over the weeks. My goal is to find a pool near P'ville that I could use in winter. Even the Pilates may not be possible with the chest pain and weakness that I have had since the second surgery.



Tomorrow I have a chest X-ray at 0800 and then see Dr. Cohn at 0900, but around his surgeries. I am afraid that scheduling will be the issue if he gets delayed, but I see no reason that I will not be released tomorrow. The echo was on Friday for him to review, and there is no reason to stay around for getting the coumadin level regulated. That can be done at my primary doctor's office. SO, the plan will be to leave here by about 1200 noon tomorrow and head for John and Martha's in NY, stay over there Monday night, then be in P'ville by Tues afternoon. It will be good to be home, although so much of my time away really has been enjoyable. It was just that middle part that stunk!!



Probably won't post until Wednesday. Thanks for checking and keep the prayers coming, Laurie

July 20: IT'S ME!!!!

Hello, all!! Sorry about the lack of postings--my computer has been really acting up.

While I am still in pain, I feel the best I have at this point compared to the other two surgeries. My breastbone (sternum) was only partially cut open before, this time it was the whole thing, so I have the full incision from top to bottom. It hurts the most in the new area that was cut open, and the chest on either side of it. My asthma seems to be acting and coughing is quite painful. There is also the left groin incision, where they had probes and things monitoring, which is a little tender. Sneezing is the MOST painful, however, because it just jolts everything in the chest. Mentally, I feel totally with it (as much as I did before), although I continue to have the same word finding problems that I have since the last heart surgery 8/06. I am walking every day but the humidity is difficult for me to breathe in. All in all, however, this surgery and recovery has been the best so far. I hated the phrase "Third time is the charm", but it seems to be true so far.

It's Friday am, and Beth and I are still at the Holiday Inn in Brookline. I am scheduled for an echo this afternoon at Brigham. Visiting nurse tomorrow am for coumadin check (INR), we are still getting the dose regulated. This is the blood thinner I will be on for life now, so blood tests to keep the levels correct will be a forever thing. I see Dr. Cohn Monday am, and if all is well, Beth and I will leave Boston to go to my cousin John & Martha's in New York, then getting back to P'ville on Tuesday.

Let me see if this actually gets up before writing anymore. Thanks so much to Joanne for an outstanding job with her postings! Hope to write more later.

Thanks, as always, for checking in as well as the prayers and good thoughts. Please keep those coming, because there is still a lot of healing and unknowns. Laurie

FIFTH DAY POST SURGERY UPDATE - JULY 17TH @ 4:00PM

Awesome news...I just got off the phone with Laurie...she has been released and is back at her hotel!!!
She sounds great, she hung up with me to have some milk and cookies...she's hoping to be back home in Phoenixville on the night of July 24th...it would be the best birthday gift that I've ever received!

I asked her if i could tell people that they could call her but shes still pretty tired most of the time. She did say that she'd appreciate emails or cards sent to the hotel, the address is:

Holiday Inn (room is in Laurie's name, should be Rm. 315)
1200 Beacon Street
Brookline, MA 02446

Thanks again all,
Joanne

FIFTH DAY POST SURGERY UPDATE - JULY 17TH @

Greetings everyone, I have very exciting news to announce... Lauries is currently in the process of being discharged from the hospital....I'll update again when she answers my text!


Thanks,
Joanne

FOURTH DAY POST SURGERY UPDATE - JULY 16TH @

Happy Monday all!

Brenda flew home yesterday and arrived safe and sound. I spoke with Laurie's cousin Beth & Mom yesterday. She was moved into a semi private room and she now has a phone. Laurie's been getting up regularly and walking around her unit, slightly tired but starting to recover nicely. Because nothing goes smoothly, she has a room-mate thats having constant visitors and phone calls in the middle of the night which after 24 hours caused her to go completely BALLISTIC on them. The nurse manager finally had to come in and get the visitors under control.

I'm on the phone with her right now, its the first time I've talked to her since the night of the surgery. She sounds GREAT, her voice is almost completely back to normal. She says hi to all and that shes feeling alot better in comparison to the two previous surgeries. FYI that it ended up being a double-valve repair, repairing the tricuspid and replacing the mitral. She says hi to all and thanks for the continuing well wishes.

Unit I post again,
Joanne

2ND DAY POST SURGERY UPDATE- JULY 14TH @ 4:40PM

Greetings to all on this beautiful Saturday.

Better news on the blog front today. Laurie got out of bed yesterday and sat up in a chair for a few hours, two or three times. Her Physician had decided that she didnt need any more pain management meds but that didnt last long...understandably so. She was and is being given pain meds. I couldnt talk to Laurie yesterday due to her not being able to use a cell phone with the temporary pacemaker in place.

I've spoken with Brenda twice today. Laurie went for a walk (great progress) and the pacemaker was turned off. She's doing well and making some serious efforts to move around as much as she can. Brenda flies home tomorrow.

Thats all for now, keep reading and keep posting and I'll keep all updated as soon as i get more news.

Thanks as always,
Joanne

DAY 1 POST SURGERY UPDATE JULY 13TH @ 12:00PM

Hello everyone. On behalf of Laurie thank you for all of the well wishes on the blog.

Last night around 7:oopm I received a phone call from Brenda. She told me that she had me on speaker phone and that she was in the room with Laurie. I spoke with her for about five minutes. Although she didnt sound anything like herself (from the tube) it was great hearing her voice, it put my mind at ease. Laurie joked with me and thanked me for holding down the blog updates.

I just now received a call from Brenda. Apparently Laurie didnt have a good night. Her pressures went low and long story short they had to install a pacemaker. When Brenda arrived to see Laurie this morning she was sitting up in a chair, stating that she didnt feel well. The staff got her back into bed and Brenda left so that she could take a nap, thats when she called me.

The first day is always the worst, she's feeling the full impact of the surgery today. Please keep her in your prayers during her rough road to recovery, this week will be especially hard for her. Brenda will call me again in a few hours to give me another update.

Thanks all,
Joanne

DINNERTIME UPDATE - JULY 12TH @ 6:15PM

Well, Brenda just called me. They just left the room because Laurie wanted to take a nap.

Brenda says that at 4:15pm they turned her over, lowered the respirator & raised her head off the pillow. Brenda said that the nurses exact words were 'her stats are perfect'.
At 5:05pm they took her off the respirator and had her try to talk. they told her at this point that once she coughs she'll get ice chips. (its the little things)
She talked a little bit but she REALLY wanted ice chips so she told the nurse 'Will cough for ice chips'...pretty much along the lines of 'Will work for food' huh?
She told Laurie that she had talked with me throughout the day and that i was holding down blog-duty, which made Laurie laugh. I intstructed Brenda to get get some dinner and that i would talk to her later.

Stay tuned,
Joanne

VISIT WITH LAURIE UPDATE - JULY 12TH @ 4:20PM

Well, i just got another phone call from Brenda. They've been in with Laurie for the past hour or so. Brenda says that shes doing well, she's in and out of consciousness right now. When shes conscious shes squeezing their hands to give them encouragement. Of course, as soon as she woke up she immediately started motioning that she wanted to write. She wrote 'feel like i cant breath'. Right now she is breathing on her own with the respirator still in place. The nurses told Laurie that this was normal due to the tube. Her vitals look good and they hope to get the tube out soon!
Brenda said that she cant believe how much better she looks Post OP in comparison to the last two surgeries. She said that she looks as if she only had a minor surgery! The nurses asked them to leave the room so that they can wash her up and reposition her so that shes sitting up. Right now Laurie's just really trying to stay awake...I'm sure the reason for that is so she can ask questions!

More to follow,
Joanne

ADDITIONAL UPDATE - JULY 12TH @ 2:30PM

I just received another text from Brenda. Brenda says that she was mistaken in regards to the size of the mechanical valve, a 23 was put in, not a 21. Bigger is better!!!
Brenda is on her way in to see Laurie now. She is going to call me as soon as they make her leave the room.

Stay tuned, more to follow...
Joanne

SURGERY UPDATE - GOOD NEWS!!!!

Hello all in Laurie's Blog-land! Joanne here with your friendly surgery update.

I've spoken with Brenda numerous times today. She just called me to tell me that LAURIES OUT OF SURGERY and doing well. (I breathed the big sigh of relief as well.) Per Brenda Dr. Cohn just came out to her, Beth & Mrs. Brooks and said that she came through well. As is par for the course where Laurie is concerned, there are positive and negatives. What Laurie will see as a BIG negative is that they did in fact have to replace the valve with a mechanical one, not the prosthetic which she was desperately hoping for (Coumadin's the big negative for her). Laurie was hoping for a valve size of about 28-30. Dr. Cohn attempted to put in one ranging in that size but due to the extremely small size of her heart  valve he was unable to, so he put in a 21. Dr. Cohn stated that she literally has the smallest valve opening that he's ever seen. In his vast experience in his field that's saying something. Brenda was told that Laurie was currently being stitched up and that they would be able to go in and see her around 2:00pm.

I told Brenda that now she HAS to go eat something and settle down before she goes in to see her, she hasnt eaten a thing today. Brenda will call me after she sees Laurie and give me more of an update. I'll repost again as soon as I know something further.

Be back soon,
Joanne

Pre-Surgery & During Surgery from Joanne

SURGERY UPDATE 7/12, noon:

i woke up this morning to emails and texts from Laurie on my cell phone...apparently she couldn’t sleep last night. the last text that i got from her was at 5:44am and it said 'i just called to say i love you' which pretty much sent me into hysterics immediately. ive been off and on with the crying jags which made me work from home today, my nerves are completely shot with this surgery go-round.
i received a text from Brenda on Laurie’s cell phone at 7:41am that said 'hi, just left Laurie in preOP, she was getting groggy. She’s in surgery now. will talk later.' i called Brenda’s cell phone around 10:00am, her, Beth & Mrs. Brooks were all in the waiting room and hadn’t heard anything yet. she said that she didn’t expect it to be for a few more hours. i want to say that they come out with an update for the family about half way through the surgery, which will put the update to get to me sometime around noon or so. as soon as Brenda calls me ill post the report here.


i just got a text from Brenda. it says 'no news yet. surgery started at 8:58am. scheduled for 4 hours.' So, of course, i called Brenda. she said that they hadn’t heard anything yet so she went to the desk to ask about her progress and that’s what she was told, they don’t know anything else yet. when i asked about the 'scheduled for four hours' part she said that per the OR schedule that’s the timeframe that Dr. Cohn has allotted for the surgery. she said that she’s hoping to hear something around 1:00 or so. I’ll post again as soon as i hear something further.
Joanne

July 12: after midnight

Myt computer is acting up, so this is shorter than anticipated.

Had pre-admit stuff today. Had to go through the whole story, because everyone wants to hear it "from the beginning" instead of reading the chart. I was kind of stunned when I looked at my chart, which was 2.5 inches thick--that looked right. Then I noticed it was Volume 3. Kind of sobering. Anyway, the nice nurse practitioner (I forgave her for the sin of her training!!) presented my case to anesthesia. They made her go to the Chief, of course. Anesthesia was "very impressed with my numbers!!" And I don't look like I'm that sick...

Today was complicated by a GI bug--probably food poisoning from either BK Sat or TGIF on Monday, salads at both. Anyway, lots of times to the bathroom, but better today than tomorrow. Wouldn't that be great in the middle of open heart surgery?! Even Dr. Cohn may not have run into that one.

Bracing myself to wake up with a mechanical valve. Multiple reasons. Stay tuned. We'll see. I'm really being my usual prosaic self--it is what it is. My minister told me tonight that I have "spiritual vitality". New phrase for him, but strange circumstances deserve strange phrasing!

Mom is here, Brenda is here, obviously "Aunt" Beth is here. Took a shower and washed my hair tonight. For those of you who haven't had surgery, you have to wash the night before and the morning of with antiseptic stuff to start decreasing the germs. But then you wear your clothes.

Anyway, have to be up in four hours. But then I get to sleep most of tomorrow....

Thanks for all the prayers, good vibes and positive thoughts. Brenda and/or Joanne will update every few hours tomorrow, and then other days as needed. Can't really relax until I make it out of CCU, and I always seem to do something to delay my quality time in there.

Thanks, as always, for checking in. Laurie

July 9: Vacation Over

Hi there! Busy day. Couldn't access up at the lake, which was probably just as well. Not contacting the outside world can be very pleasant. So I had time with my family in a beautiful setting with no outside contact. I walked two times a day to the dining hall, usually took the car for dinner and to whatever event was in the evening. Saw a great display of fireworks on Tuesday night. I was also able to do some of the activities that I enjoy: a little kayaking on calm days, a little canoeing (although Lyle did the bulk of it!) and jumping in the lake. Nights were spent playing card games. The rest of the group (14 in all) had climbed my favorite mountain on Sunday, which was before I got up there. The weather was perfect that day, but I suspect that not having to leave me behind influenced the timing as well. My goal is to climb in 2008, but I said that in 2005 & 2006 as well. Sigh. It was great to see everyone and catch up on the doings of all.

Saturday five of us went to a friend's house, and yesterday we had the most glorious day on their 30 foot boat. The weather was perfect and we sailed for several hours. Slathered myself with sunscreen and had a wonderful time. I was thoughtful enough to send a picture of myself stretched out on the deck with a wonderful view on the water to Joanne with the caption of "my current location"! Then we left to get Emily, Mirko and his friend Filippo onto their flight back to Italy. That wasn't so much fun, because all of us wanted them to stay longer.

So, back to reality. Beth and I are checked in at the Holiday Inn in Brookline. That was after a visit with Dr. Cohn. After some back and forth the following was decided on: he will put in a bovine valve if he can, but with my abnormal anatomy it may not be possible. Both he and the cardiologist disagree with my decision and would rather put in the mechanical valve. But I want to avoid coumadin as long as possible. As my local cardiologist says: "Being on coumadin is like having a whole new disease." Having the bovine valve put in would avoid that, but would mean another surgery in 10+ years as it wears out more quickly in the mitral position. They are concerned about a fifth chest surgery (including the lung surgery) and the increased risk of infection and lack of sternum (breastbone) union. And a fourth heart surgery (for those of you who may have lost count!). My comment was that I would do anything to delay being on coumadin and if I could cope with three open heart surgeries in three years then another one in 10 years sounded like a picnic. (Cohn roared at that!) I figure by that time they will have little nanotech robots that get released into you and go and do the surgery without ever cutting a patient open. He said OK, but again warned me that because I'm "unusual" (hold the comments folks!) and my mitral area so small that mechanical may be the only choice.

So that's the up-to-the-minute report. Suspense builds....

Thanks for checking in, Laurie

P.S. Sign on the bed: "Caution! Comfy pillows may cause drowsiness. Avoid operating heavy machinery while using." I think stupidity has hit a new low....