9/21: GOOD NEWS!!!

Typing this from Boston: I'm exhausted. Saw Dr. Cohn yesterday with Chest X-ray in hand (literally!). He was very happy: no sign of CHF (heart failure, extra fluid in lungs). For over three years I have constantly had some fluid in there, so this is big. Had my echo later in the day, saw Dr. Baughman today. He walked in the room with the biggest smile I have ever seen. "I just looked at your echo...." Everything looks as good as it could possibly look. Now, keep in mind, my heart will never be "normal". But with the metal valve and the repair of the tricuspid valve the pressures look the best they have since those started increasing after the first surgery. Everything is in the low normal range, which is better than ANY of us expected, especially so soon after the surgery. Even the left atrium, which was enlarged from the increasing difficulty squeezing through the narrowed area, has returned to normal--just by .02-.04mm, but definitely out of the enlarged range. Everything is so good that I don't have to come up to Brigham again for 10 months--the year anniversary. Beyond outstanding!

Now that the good news is given, I have to be cautionary. The echo was done at rest. This is important because it was looking normal at rest after both the other heart surgeries. The problem was with exertion, and then deteriorated into problems at rest. And there is another inescapable fact that I clarified with Dr. Cohn: the valve annulus, or opening, that the new valve is sitting in is still only the size of an 8 year old. He tried to enlarge it, but couldn't. So blood flow will still be restricted. There will always be issues.

They are both very happy that I am almost up to a mile on the treadmill. They both want me to wait to swim until at least 3 months out from the surgery. They both want my weight down by 20-25 pounds. They both agree that my fatigue is normal, and also cumulative from the past three years. It is ridiculous to expect that I am going to recover from this surgery quickly because my body has to recover from three open heart surgeries and a thoracotomy in less than three years. It's going to take time to rebuild my stamina and my atrophied muscles. Time will tell what I will be able to do long-term.

My stamina is getting better, and the fatigue is less than it was. It's hard to compare, because I haven't returned to work and I'm not living in the same house. The plan is for me to return to work in October, going in three days a week. I did really well yesterday with getting up early, the flight up, to Brigham for tests and appointments and then to the hotel: nine hours of being up and about, although with sitting a lot. If I push it one day then I pay for it the next couple of days. I'll see how things are in January, but I'm prepared for it to take longer to go in five days a week because of the aforementioned issues. Trust me, my checking account needs me to work full time. Have I mentioned that my eight year old car has about 145,000 miles on it? And my savings accounts are gone; no surprise.

I am extremely happy and relieved at such great results this quickly after the surgery July 12. It really gives me some hope that I can return to a life that is somewhat normal. Not working seven days a week, however. But having some fun and socializing besides working full time. What a concept. I do have to give up my dream of underwater archeology or being the first PA in space. But I coped with giving up the dream of becoming a bikini model, so I'll make the adjustment!

Thanks for checking, Laurie

9/16: Update

The happy news is that I finally hit 3/4 of a mile on the treadmill today! That took about 24 minutes; my goal is to increase to 30 minutes and then go for increasing the speed. I figure if I keep it at about 30 minutes then it still can be scheduled in, more than that and I start to make excuses.

The bad news is that now that I have been more active in doing things around the house (painting, moving some things, etc) the right back where the muscles were cut for the wretched thoracotomy has opened up again. The good news, relatively speaking, is that the pain from that keeps me from doing too much. Since this week is the one-year anniversary of that surgery I doubt it will get much better. I also suspect that the right side will remain weaker. This also meant that I held off on swimming, but I hope to try that in the future. I am going to try to get some rehab ordered with the intention of maybe getting my arms stronger.

My first follow-up in Boston is this next week. Chest X-ray and appt with Dr. Cohn on Thursday and echo and appt with Dr. Baughman (my cardiologist in Boston) on Friday. Everything scheduled, of course, so that I won't be able to do anything else! I'm going to try and change the echo appointment so I can get to a museum. I'm going to be scolded by Dr. Cohn. He wants me to lose 20 pounds on the basis that since my valve size is so small that it will do better lugging around less weight. You can't argue with the man's logic. Unfortunately I have gained 5 pounds. I will beg him for some lattitude! I'm ready to get down to business now--really. I just needed more brain cells so that I could use my steel-like will to defeat the calories. You all should know that is VERY tongue in cheek!

Still working on returning to my job. Will be the first week of October, but not sure of where and how much.

I returned to Fellowship last Sunday as well as today, it was wonderful to see everyone there again. I'm kind of geographically out of it now, so will have to find a closer one at some point. In other news, for those long-term readers, I am very happy to report that for the first time in three years Chester (aka devil's spawn!) has been spending a few minutes lying on my chest when we first settle into bed. This is a big deal, because either he hasn't wanted to or chose the times when I was too sore. He's been with me since he was a 5 week old kitten, and always napped on my chest, right over my heart. In the last weeks before the first surgery the murmer was so strong that you could easily feel it by putting a hand on my chest. He was totally freaked out, kept on reaching out a paw and then pulling it back because of the odd sensation. So having him crawl up and settle on my chest and purr happily for several minutes is a really nice return of behavior. Now if I could just get him to stop attacking everyone else....

Thanks for checking, Laurie

9/11: It's my blog and I get to say what I want

It is the eve of the sixth anniversary of the day that changed our nation and our world. It saddens me that so few people feel the need to attend memorials. What happened on that day will affect all of us the rest of our lives as well as our children and their children. And, regardless of your feelings about the war in Iraq, the consequences will follow us for generations.

While that day brought horrible scenes of death and destruction, it also showed us the courage and heroism of many Americans. The passengers on Flight 93 gathered information, discussed it among themselves and acted to prevent another attack on our capital, knowing they would be sacrificing themselves. These were normal, regular people who responded, without any special training, recognizing the need for the sacrifice of the few to save the many.

Having spent 25 years in uniform I was most affected by the devastating losses suffered by FDNY, NYPD and PAPD. For, in Emergency Services, we are all brothers and sisters. Line of Duty Deaths are a reminder to those in uniform that it could have been any of us. This risk is mostly ignored by the public. It took the death of over 365 of our ranks for many people to recognize and appreciate the inherent danger of the job. They saved thousands by their heroic actions. And many are now dying as a result of the rescue efforts.

So please, don't ignore this day. Go to a memorial, light a candle, take cookies to your local Squad/Fire Co/Police Dept. 9/11 is not just our past. It is, sadly, our present and our future.

In Memoriam

The many victims of WTC Towers, NYC and the Pentagon

The Courageous passengers of Flight 93

and those that knowingly made the ultimate sacrifice

FDNY, NYPD and PAPD

NEVER FORGET

Sept 6: happy news!!

It gives me GREAT pleasure to announce to my readers the arrival into the world of Phoebe Louise Boger on Sept 4!! Regular readers will recognize Wendy as a frequent blog-poster. Many PA friends will recognize Wendy Whetzell as a fellow PA and phenominal gyn practitioner. It was a hard road for Wendy and Luke over the past several years, but perserverance paid off. Wendy and I were going to do dinner this week; she called me Tuesday morning and told me she wouldn't be able to do dinner that night because she was having a baby instead! Phoebe, Wendy and Luke will head back to western PA where they live now. Wendy called me this morning, which meant a lot to me. I can honestly say that I have rarely heard such happiness and contentment in anyone's voice. Phoebe is a lucky little girl to have been born to such a wonderful and loving set of parents. Laurie

Sept 2/3: Reality Check: long one

It's after midnight and I should really be in bed. I've been reading over my postings, with the positive slant of how much better I'm doing, improving weekly, able to do more. So those of you checking are, of course, happy that things are going so well. But in my attempts to be positive and always look on the bright side I have done myself a huge disservice. Because these improvements, while a very positive thing, are all relative to what I was not able to do following surgery. In focusing on the positive too much I believe I have given some false impressions.

I am still in pain a majority of the time. Doing certain things hurts less now but it still hurts. Sleeping remains an issue because turning over is difficult and I always wake up in pain. Even bending over to fill the cat's food is uncomfortable. The cleaning lady didn't show up. But the dust fuzzies were obscene, so there was no choice but to start cleaning myself, a little at a time. Pushing a vacuum hurts. The smallest kitty litter at Target was 20 lbs. It's still on the enclosed porch because I just couldn't go any further. I'm having problems breathing tonight because my chest and right back over the thoracotomy incision hurts so much. These are daily activities that just have to be done.

I'm dreading tomorrow night, because the trashcan is full and so is the recycling container--I didn't get them out in time last week. Even though the trashcan has wheels, it still hurts to pull it to the front of the house. The recyling bin I will drag to avoid carrying, but that hurts as well. I'm also dreading having to change the sheets on my bed, because it exhausts me for hours and hurts because of the tugging and pulling with my arms necessary to make a bed.

One of my main joys in my former life was being the one people called on for help. It has been incredibly difficult to go from that person to someone who needs help making her bed and taking out the trash. My mainstays have been Brenda, Bidge/Willard and especially Joanne. But Brenda has some personal stuff going on, Bidge has chronic knee problems and is still recovering from his heart attack and Joanne's father is still in the hospital (and back on the ventilator for the THIRD time). Everyone is busy with their own lives, their own families and their own problems.

Why haven't I called anyone? Because it's not a question of if I need help, it's a question of when someone is available. I'm here, day in and day out, with only a few appointments and errands to take me out of the house. If you have a little extra time and energy there will always be something I need help with. Everything is an effort, so I stay very close to home and rest after each thing I do. That doesn't exactly get things done quickly, even when it is something I can do on my own.

Yes, I am improving. Yes, everyone tells me I look great. Yes, I feel better than after the other surgeries. Yes, I can talk without gasping for air. No, I don't look sick. I will continue to increase my activities and stamina. But my chest has been cut open four times in less than three years, and each time has added an additional toll on my body. I am not just recovering from this surgery, but the past three and a half years. And while this surgery has helped the problem, I will always have a tiny valve opening which will cause fatigue, lung problems and circulation issues. I will always be a cardiac patient and I will always be compromised. My heart is not "fixed", it is improved.

I'm not complaining--it is what it is. And I remain grateful for all the positives I have written about previously. But please, please don't think that everything is wonderful, or that I am back to "normal". Because I am still struggling every day and will not know for at least a year how much I will be able to improve. It's a process.

So, thanks for checking in, although this was probably more than you bargained for! And yes, help is needed and gratefully appreciated. Laurie