Barbara's Journal

Friends and family, I am doing well. I know it has been a long time since I posted,but change is pretty slow at this point. I can do a little more all the time with a few setbacks and some tiredness. I think I have avoided most of the worrisome possible complications of surgery. I am still walking 2 to 4 miles most days. I am in cardiac rehab three days a week. The techs who run the program are pleasant. This particular program's goal is to become familiar with exercise equipment and exercises. There is very little individualizing of the programs. There are other heart patients, but no introduction to each other or any real opportunity to communicate with them. I have just started adding some shoulder exercises, rowing, wall pushups, and abduction. I was pretty sore after the rowing which I think started breaking up scar tissue around my sternum. I am also having some pain in my left shoulder which might be related to the shoulder abduction exercises. I am happy to be in the program while they add exercises, but I will probably switch to something else in a few weeks. I was also scheduled for a projected vo2 max test which I had over a week ago, but I am unable to find out results. I was eager to start this program, but I think it will not work for me long term. I have signed up for a class which goes from walking to running in about 4 months time and I am looking into other options for rehab, probably at our local YMCA. I can do some gardening now, but skipping the heavy lifting. I am doing some light swimming which hopefully I can improve on. No biking because I can't take the risk of a fall even though they are uncommon. I thank all of you for your support through this process. I really appreciate your comments, emails etc. I suspect that my communications through this site will become less frequent which probably means I am doing fine. It is just a slow process. Sending best wishes to all of those still on the recovery path and especially to those who are still very anxious about the surgery. It is definitely good to have it over with so each of us can deal with individual challenges and keep getting better!

I had surgery in California a little over three weeks ago and everything seems to slowly improve. I had an appointment with my cardiologist here in Tucson. I saw a PA first who listened to my heart and said she heard some aortic insufficiency. Not what I wanted to hear. The doctor came in and did not hear it. He scheduled an echo to get a baseline and blood tests because I had been anemic since the surgery. Blood work came back great. The tech who did the echo said everything looked great; I am still waiting for the doctor to read it and give me is opinion, but I am not too worried. I increase my walking each day and I am up to 40 minutes. I feel fine. People ask me if I feel better than before surgery, but I cannot say that I do. First, I am still a little sore and tired. Second, I was not short of breath before the surgery, so until I get the okay to really stress myself, I don't think I will know. I will say, though, that I am relieved to have the surgery behind me. I will start cardiac rehab next Thursday which I am really looking forward to. Cooking etc is shifting back to me. I will hold out on the cleaning. Really it is good to get back to that and Ron does need a break. I have the okay to drive. I can tolerate sneezes now. I have separated from my pillow, but I know where it is. Basically no drugs necessary now. I often take Tylenol at night to help with sleep. I can see the challenge will become continuing the sternal precautions when I feel pretty good. Trying to be a patient patient. I had a fun virtual coffee with friends from Alaska, you are the best! In about ten days, I will have a visit from both children and their loves which includes two month old Wilder, my grand daughter. Anway, I am getting past one hurdle at a time so I have no complaints. Just hoping to avoid setbacks and keep walking forward. Best of luck to all who are waiting for surgery and waiting to go home! Sending calming and healing thoughts your way!

Two weeks have passed since my valve repair. I feel like I am doing well. I have an appointment with a cardiologist here in Tucson tomorrow. My pain is minimal. I take Tylenol as need, usually about 3 pills a day. Once in a while I take a tramadol at night if I have some discomfort around the incision. I walk a little farther each morning so now I walk 27 minutes and I feel fine. The rest of the day I take it pretty easy, alternating walking, lying down and sitting. Mobility is good. My sternum lets me know if I stretch or lift more that I should. I am trying to be very cautious about the limits. Ron is doing almost all of the work, but I am trying to pitch in with some cooking. I no longer hear the very loud heartbeat which I spoke of earlier. My heart rate is still elevated about 15 to 20 bpm over my usual resting heart rate. Apparently that is normal. I am curious about the reason for that. At times I have a shallow dry cough that can be hard to stop. I don't know what brings it on. I have had some nice visits and gifts of food and garden work from friends here in Tucson. I have enjoyed cards and flowers and wishes from friends in Anchorage. Thank you to all of you. This recovery for me has not been physically more difficult than the other surgeries I have had (abdominal). I am pretty sure I have less pain than many of my friends who have broken bones, had back surgery, joint replacements, etc. That said there is an emotional component to heart surgery that surrounds me. I feel encircled by relief, joy, fear and love. I have found tears flowing for no obvious reason. All part of the healing process I suppose. Good luck to those of you awaiting surgery. I hope this offers some hope that recovery might be easier than you think. And it is definitely good to have the actual surgery over.

Friends and family, I am pretty proud of myself (and Ron and Emily) for writing in this journal consistently. I have found journal attempts through various stages of my life and they usually contain only one or two entries. It is good to be home. I am starting to see a few people. I am walking 20 minutes in the morning and the rest of the day I basically rest, walk, breathe and repeat. I have gotten my inspirometer back up to presurgery level so I just have to remember to breathe deeply. I am hoping that the next few weeks will pretty much continue like that, so there is really not much to write about presently. I'll try to keep you up to date with changes on a sporadic basis. Thank you for all of your notes, your encouragement and your presence in my life. The top of the guestbook says something like "please write something, it would mean a lot to me." Those are not my words, they are part of the website. They do, however, turn out to be very true. I would love to get emails etc to let me know how you and your families are doing! I have been pretty focused on myself and I am kind of tired of it. I plan to follow orders and hopefully make slow progress for the next month when I can start cardiac rehab. Love to all. Barb

I have a suggestion for one simple thing anyone do before surgery. It was helpful to me. Practice getting up from various chairs and surfaces while clutching a pillow or just with arms across the chest. It does take a little strength, but if you have the timing right, not that much. Sit on a chair with knees about shoulder width and feet on the floor. If you are seated far back in the chair, scoot up. Bring your feet a little bit behind your knees. Now just bring your chest forward until your feet are directly under you and stand. Your chest will be just over your knees when you stand. Okay you still have to figure out getting up from a supine (backlying) position, but this little motion can really help with hospital mobility. Try it on various height surfaces at home and practice! Good luck!

In some ways getting back home is like any other return from a trip. You unpack, shop do the laundry and figure out what should be done. I am slowly working on unpacking and Ron has done the rest. My limitations are no lifting or pushing more than 5 pounds and no reaching overhead. All of these are to protect the sternum which is wired together, but still subject to external forces. So it is something we can work around, but takes some getting used to. I also can not drive for four weeks. At times my heart feels incredibly loud to me. I have read this could be from cutting the pericardium which decreases insulation. Supposedly that will go away. While I was in the hospital, I could hear my pulse in my head when I laid down, but that has gone away, maybe after they took the last IV lines out. I walked for 17 minutes outside this morning and have walked a fair amount inside today. I survived my first sneeze actually my first four!! I am glad they waited until today. I was actually caught without my "cough pillow" but still it was okay. The cough pillow is an interesting thing. They give you a little pillow to hold to your chest to brace for coughing exercises. Emily picked out a cute pillow case made and donated by local volunteers. I have been musing on how children become attached to a particular blanket or toy, wondering if it gave them just the needed comfort at just the right time. I think I will be able to let this go, but it do feel somewhat attached to it at the moment :) Pretty good day. Did some wading in the pool. My energy is decent. Thinking about great friends and family everywhere. Barb

We made it home! The flight was delayed for over two hours so it all happened slower than we wanted. I am pretty tired but very happy to be home. There is a rainbow over the mountains, but it is sunny here. I know there will be a new set of challenges being home. I should say though that I really do not have much pain. I take two tylenol every six hours and most days I take one or two tramadol (50mg) for pain. I am happy about and kind of surprised. I am pretty sure that having the ministernotomy has played a big role in that. We had a nice surprise of flowers and food when we got home. Ron is super efficient (to the surprise of no one). Nice to know that people are checking in an sending great wishes! Just wanted to let you know we are actually back in Tucson. More later.

Today went surprisingly well. We took a short drive through the countryside, a few short walks also a few rests. Heading out to dinner soon. Hopefully the flight home will go well. One more obstacle. It will be nice to get into a routine at home. It is lovely to share these little triumphs. Thank you!!

Got out of the hospital at 1:00 pm. Had a nice visit with some old college pals just before we left. So nice to feel fresh air! No more tubes attached! First order of business was a shower which felt so great. After talking to the doctors, we also decided to change our flights to Arizona to Wednesday instead of Saturday. Lots of precautions for the next six weeks but hopefully all will go well. My pain is well controlled but not absent. This whole experience has such a life altering feeling to it. I may find a way to talk more about that later but not now. Emily is going back to Boston tomorrow. I am so lucky that she could be here. I will keep you posted. Barb

This morning started out a little rocky. I could have used Anita or Chuck to advise. They are trying to sort out lasix and beta blockers. I might have gotten too much lasix so I was dehydrated and did not feel well. It also could have been the beta blocker they gave me once more and which I do not seem to tolerate well. Anyway, both of those drugs are discontinued now and after some rest and a quart of water I feel much better. I am sure it is a fine line getting the meds right. My heart rate is running a bit high but I guess that should improve. On the positive medical side the lasix helped to normalize my hematocrit so I will not need another transfusion. Hoping my body will figure out how to maintain a balance. Tomorrow I will have some little pacer wires removed. They just pull on the wires to remove them. They have been in place in case there is a need to use an external pacemaker. I guess you need to lie down for an hour or so after since they are attached directly to the ventricles. The rest of the IV lines in my neck will be taken out just before I go, looking forward to that. I will stay at a place called the Sequoia House where I stayed before the hospital and where Ron and Emily are staying now. It is a somewhat dated but adequate living space and very close to the hospital Ron and I would both prefer to be in Oro Valley, but it is a good idea to see how the first few days out of the hospital go, so we plan to stay until Friday, Emily is out biking 100 miles or so today, and she will go home Tuesday. So glad she was able to help here. My breathing is improving I think; I can take deeper breaths. I am feeling very happy to have this shorter incision right now. I am really looking forward to being outside!! Sending love to all. Barb

I have more energy today which almost feels odd. I spent some time reading through notes from great friends and family since I was a bit spaced out the first time through. Thank you; I am so lucky have you in my life. Please imagine that I am responding to each of you because I am thinking about you. There is also another group reading this journal and they are mostly people wondering what to expect when they go through their own journey. I hope I can provide some insight for you as well. No more high heart rates detected which is good for me because I don't need to take the beta blockers which left me with low blood pressure and lightheadedness. My gut has finally cleared which helps my general feeling of well being. If all continues to go well, we should leave the hospital Monday. Mostly I will be very glad about that. A slight worry about that change. For those of you about to go through this, an odd surgical effect that I guess is very common is to see strange light flashes. I doubt everyone gets that, but I guess your fluids get really out of whack which is the cause. I feel pretty good except for coughing exercises and breathing exercises which I know are important but painful. Stay healthy! Barb

It seems like I slept a lot yesterday but I am getting all of the walking required. My pain level is pretty good except for breathing exercises and coughing. Those are pretty difficult. I take tylenol 4 times a day, tramadol as needed. They also give me lasix and potassium plus beta blockers. I guess I had an episode of arrythmia last night which is fairly common. My heart rate is also runnng high, but they seem to think all is well. I still have a few tubes in my neck for blood draws and lasix, The docs and nurses are all attentive and friendly. I am looking forward to feeling well enough to go home. I'm especially excited to hear that the monsoons have started in Tucson. Thinking of all of you. This is not easy but it is tolerable. Love to all.

I walked a fair amout today and slept a fair amount today. I had a couple visitors this morning which was great and some beautiful flowers. I am healing well and very tired. Thank you for you kind thoughts! -Barb

Barb had a remarkably good night, she slept well. Up and out of bed twice this morning, ate breakfast and not in significant pain. She received one unit of blood overnight which is not alarming. The chest tube is coming out now, then a transfer out of ICU. We expect she will be writing her own posts after this. Emily and Ron

Barb is in good spirits, drifting in and out of sleep, and is recovering more rapidly than expected. She is doing fabulously well, sitting up and chatting with pain well controlled. She enjoyed her lunch and dinner of ice and is looking forward to a real breakfast in the morning.

Barb is safely situated in the ICU, with a great team of nurses tending to her lines and tubes. Just to clarify, the whole surgery took about 90 min, she was on the heart machine for about 40 and "cross clamped" for about 32. She slept under sedation for ~4 hrs then was weaned off the sedative. She slowly woke up, able to open her eyes and wiggle her fingers/toes, but not able to speak yet because of the breathing tube. She was quickly weaned off the vent and extubated around 2:15. Barbs voice is not yet back to normal yet but she clearly stated "I am happy to be alive." She is alert and oriented, and resting now as she gets ready to do some serious recovering.

From Emily and Ron: We just received an update from Dr. Castro, Barb is out of surgery and on her way up to the ICU. His exact words were "it went beautifully" Barb did not need the ascending aorta replacement. It may need to be replaced in the far future, but it not a worry now. Turns out she had a bicuspid valve that was very stenotic but minimal calcification. She was in the procedure for ~40min. Barb will be sleeping for the next 4 hrs or so, then will be weaned off the vent if she is ready. She will likely be in the ICU for one night, then transferred to the cardiac unit tomorrow. Thank you everyone for your kind thoughts and support. We will continue to keep you posted!

I was very relieved to have good coronary arteries ! They highly suspect that the valve is bicuspid which means it is a congenital problem. There may be some dilation of the ascending aorta which may require some replacement as well. Apparently this is more common with a bicuspid valve. It does not add much time to the surgery. It does mean that the smaller incision will be higher, near the top of the sternum. I am trying to enjoy feeling pain free for the rest of the day. I am ready to just get this done. Ron and Emily are great. I get daily updates on Wilder. Thanks to all of you for your concern and love. I will write again when I can.

Coronary arteries are clear and looking pristine! Good news this morning from Dr. St. Claire. He reports her aortic valve looks bicuspid. She may have ascending aortic dilation which will be determined tomorrow. If necessary the aortic root will be replaced with a fabric sleeve and only takes an extra few minutes.

I feel a bit better after appointments with the cardiologist, Dr. St. Claire and then with the surgeon, Dr Castro. Both were very encouraging and happy to answer questions from all three of us. We all appreciated their clarity and patience. Both say it is likely that I will not have coronary artery problems which is reassuring. I will go in for a heart catheterization tomorrow morning (done by Dr. St. Claire). I'll stay in the hospital overnight with surgery Wednesday morning. I will be in ICU Wednesday, maybe overnight. We will post tomorrow with the heart cath results. Planning a nice dinner tonight at a restaurant owned by the cardiologist's brother. Emily and Ron are taking good care of me. Thank you again for all of your support. I hope I can be half as strong as so many of you seem to believe! Sending a hug to each of you.

Barb has asked me to address some of the data about her aortic stenosis which involves calcification and narrowing of the aortic valve. As this layperson understands it the healthy aortic opening is about 3.5 cm2. When the left ventricle pumps, and the aortic valve leaflets open, the pressure gradient across a normal valve is small (it is a big hole). Because the valve is narrowed, the pressure in the ventricle is elevated as the heart attempts to squeeze the same volume of blood out the smaller hole. The velocity of the blood as it is ejected is correspondingly increased. With the magic of ultrasound technology it is possible to look at the heart and its function in remarkable detail. With the Doppler function the speed of the blood flow is measured and (thanks to Bernoulli) the size of the aortic opening inferred. Valves are visualized flapping away. For Barb the recent studies have shown the aortic opening diminishing (at an accelerating rate) to about .6 cm2, less than 20% of normal. The pressure gradient across the valve has increased to the point it is more than 72 mmHg at peak and more than 41 mmHg on mean. At these pressures, the heart is clearly working hard to keep up circulation. Eventually this extra work results in thickening of the heart wall. We understand that as the disease progresses the heart muscle thickens, becomes less elastic and at some point damage may be irreversible. We have decided to have the surgery now for several reasons, principally: (a) the surgery is inevitable and very near at hand in any event, (b) long term outcomes will be compromised at some point, there is no road sign when you get to that point, and (c) there is no perfect time to plan a surgery, but this time works pretty well for both of us. -Ron

Last night I planned to get myself organized, but instead I spent a couple of hours outside watching the mountain colors change as they do every evening in the desert. Watching made me feel grateful for my many friendships, my family and my comfortable home. I want to thank everyone for your kind comments. I won't reply too often, but I do appreciate all of them! Today we are cleaning up and packing. I really will get on that plane tomorrow and we will meet Emily in SF and this adventure will begin. Wishing we were headed back to visit WED (Wilder, Erin, Dean) Just slowly moving forward now. More later.