Amy's Journal

Today is my 43rd birthday and 12 weeks since my surgery. Reaching Out: I have been working to strengthen my arms and upper body. I need to be able to lift 40+ pounds and manipulate building materials before I can go back to work. I should be close to this by the end of Jan.(at least I want to be). I am ready to start \"doing\" more. I can now reach up and stretch my arms with only minimum discomfort. Yeah! Stepping Forward: I am walking 1.5 miles at a fast pace nearly every day. I had to take a few snow days friday and saturday. I will bundle up and go back out on Monday. I saw my Cardiologist last week and he said my heart sounded strong and my EKG was normal! It seems we have finally found a combination of drugs that control my blood pressure with out making me dizzy. He is not worried about my BP because he no longer thinks it is linked to my heart surgery. (I have always had high BP). I go to MA General next month for a final check up and CT scan. Quietly Listening: I have had alot of alone time in the last month. Some days I enjoy the quiet pleasure of doing every day chores. Some days I am depressed and have to force myself out of the house. Some days I am simply bored. And some days I am thrilled to have the time to read and learn. I realize that in each of these days I have been healing physically, emotionally, and spiritually. This surgery and healing process has changed me. I am not the same person that walked into MA General Hosp. 12 weeks ago. I can not describe the change with words. I can feel it and I am excited to see where it takes me. Thank you to my family, friends, and fellow HVJ\'s. You have lifted me through this time. I am glad to finally have the energy and strength to pass on the love and support.

Today is 8 weeks since my surgery. The night before my surgery my parents, my son, and I had dinner at one of his favorite restaurant\'s before I headed to MA Gen. Hosp., Boston. Ironically, last night we celebrated his birthday at the same restaurant. I did not see this parallel until I was preparing to leave. All of the anxiety and emotions I held in the first night (before surgery) came flooding in. I stood in the bathroom and just cried. It is the emotional part of healing we don\'t talk much about. A good friend told me, it\'s best to let the tears come and then just keep them company. This time I did enjoy the dinner and the company of family and friends. Two very different nights!

I am starting my 7th week and I am flying solo. Mom and Dad went home Sunday. The house is quiet and I realize I have not really been alone since before the surgery. It is good and alittle lonely. I drove my truck for the first time and it actually felt good. I have definitely turned a corner and am ready to physically do more. I am dying to reach up and stretch my arms! I am not there yet but I can bend down and tie my own shoes! I have said this before but I am still amazed by the power we have to help each other. To step outside of your own personal chaos and do something as simple as send a supportive message is powerful. To do the same and allow the help is equally powerful. Recuperation definitely brings out my philosophical side.

I saw Dr. Spooner (her initials are AES just like mine)the thoracic/aorta specialist yesterday. My right lung is almost back to normal about 98% and the left lung is 100%! Yeah! My EKG is normal. Yeah! My incision and \"blow hole\" are healing nicely. My BP is still a little unstable but that might take awhile to balance. Still waiting on blood work because of a periodic low grade fever. Over all I am healing well. I have permission to start driving a little but I am still having dizzy spells so I will wait alittle longer. Besides, I can not get into my truck or completely turn the steering wheel with my right arm!!! I have a follow up with the surgeon next week. I have one suture sticking out of the incision. It looks very weird!

I will admit that recovery is moving slower than I thought it would. I am also learning I have more patience then I thought! Everyday the small things get alittle easier. I made my own coffee today. I have been making my own dinner (even though it only involves nuking something). My big milestone this week is I took a shower and got dressed (yes even my bra!)on my own. The small things give you mental courage and energy! I will wait for the physical changes...patiently.

While I was in the hospital the nurses told me I would have days when I only had energy to use the bathroom and eat. Of course I grinned and inside said \"yeah right, not me\". Well I must eat my hat, they were right! I am (and according to my mom have been since birth) fiercely independant. I am learning that it is very difficult to allow others to help you. I am sometimes overwhelmed with tears, frustration, and guilt. I have to constantly remind myself that it is ok to accept and allow the help. But it is hard. Special thanks to Jean, you are an amazing woman and dear friend. I have always taken great pleasure from helping a friend build a deck or other small project. I now understand their side and am honored that they allowed me to help them. what a deep sense of peace and pleasure there is in helping and allowing help.

The first time coming home felt great. The second time feels even better! I am home with new med combinations and less meds. We will have to see if it works. I am sure they will have to adjust things again. Our bodies are giant chemistry experiments. I seem to be a good example. They stopped all but a small blood pressure med and they want to see just how high or low (with in reason)it goes. Since I have had problems with high blood pressure my entire life, it is not surprising that we need to readjust things. Thank you so much for everyones thoughts and prayers again. It is a tremendous lift to my spirits to turn on the computer and find everyone\'s wonderful notes.

It was a tough week. I found myself back at Mass General last night and again tonight. I struggled with black outs, dropping blood pressure and a bad cough. After ruling out fluid in my lungs and around my heart they did some med adjustments and things seem to be feeling better. The good news is they did an echo and my heart likes the new plumbing! Hopefully this med adjustment will bring steps forward.

I am settling in to being at home. Mom and I took a magnificent walk in the park this week. The sun was out and the leaves had great color. That gave me more energy than any drug. Mom, I am so blessed to have you here. To just say thank you is not enoughe. Any one close to me knows the humor of the \"Szalony Boobs\" No one, not the best docs and nurses at MA General prepared me for the painful transition of the surgical bra. At some point the bra they send you home with is too big and worn out because you are losing the fluid and inflamation. My breasts are simultaneously pulling the incision down and apart. Then the weight of the breast is putting more pressure on the incision. Now add the fact that all the wounds from the tubes land directly at the band of the bra and you truly have a new form of torture. I was in tears. Thank you to the woman at a specialty lingerie shop who patiently worked with us until we found a bra that worked. The only problem is I can not get it on and off by myself yet! This is a serious pain that some of us have to deal with. I will be making this my personal project to resolve for others!

Yes! they said the xrays looked very good and my lung is out of danger so, they through me in the shower, easily walked the stairs and there I was sleeping in my own living room. I wont lie, as great as being home is, there is alot of trust and safety at the hospiptal. Especially since all of my hospital staff was easy to trust. I experience sudden onset of very sad feelings and I can not control my tears. I have spent the last 7days sweating and pee\'ing fluids out, I guess now it is time for any other lingering fluids! More Later

One full week and I am still here. These small set backs are minor but very important. My lung is still draining a significant amount of fluid and my Pottasium levles are low. I can not go anywhere until they clear this up. The good news is each day it gets alittle easier to walk and move. I can not predict my homecoming, when my lung has decided it is ready then we move to the next level. Everyone at this hospital is wonderful and helpful. I am at a good place!

They opted on the side of conservative action and left the chest tube in one more day. They will remove the tube Monday and provided I go 24hrs with out any new fluid build up they will release me on Tuesdauy. Thank you all for your words of support. Everyday I feel alittle stronger!

It has been a long week with a few set backs. Irregullar high heart breat on Wed night but it eventually worked itself our with the aid of drugs. Last night they had to put a chest tube back in because my right lung still had fluid. That was not fun! They say both set back are \"normal\" Better they deal with everything now. It is really hard to wright on Perkaset but it is good pain medicine! I will probably go home on Monday. More later. Thanks for everything Mom and Dad!!

Surgery is over and I am doing well. Two more hours and most tubes will be removed and I will be conscious. I move to step down tomorrow and begin the five day count to be dismissed. Thank you for all of your prayers and thoughts. Amy

Monday is now coming quickly. I am ready. I am at peace with myself, the hospital, and the doctors/nurses that are taking care of me. Thank you all for the positive energy/thoughts/prayers. Please include the same to all those who will be in the waiting room for me (remember to breath Mom)and my wonderful son. Someone will post updates for me on Monday. The surgery will be between 4-6 hours. They say I will be in ICU until sometime Tuesday so you will not be able to reach me. Once I am in my room I can take phone calls. The main number for MA General Hospital is 617-726-2000. I will be in the Ellison building somewhere on the 8th floor. MA Gen.Hosp. has a very good web site. Not only am I living the miracle of life but the amazing gift that humans can give each other!

Today is my pre-op testing. I am ready for this to be over. I will have someone update this when I am out of surgery on Monday. I will also post hospital information (phone number) when I know more. That\'s all, time to try and sleep.

Oct. 18th is quickly approaching. I just got all my paperwork for my pre-op appointment on Oct. 13. The reality of this event is becoming clearer in my head. Some days I am totally at peace and other days I have so much nervous energy I want to jump out of my skin! At least I am getting some things done around the house. I have a strange \"nesting\" feeling. It is amazing how aware and in-tune with my body I am right now. I realized something while talking with a friend; this process is a strange partnership between my self and my heart/body. I need my heart to keep on living. My heart needs me to get the medical help needed to keep on working. Many thanks to my friends who have patiently witnessed the chaos of my nervous energy...I will be sitting still soon! Steve and anyone else my home e-mail is aszalony@comcast.net

FINALLY! I have been sweating the last week as I waited for the insurance company to approve my surgery at MA General Hospital and the letter came today! My surgery is scheduled for Oct. 18th. I have a strange sense of peace knowing the date is set. After so much waiting and anxiety it is good to be moving forward. I went to see Dr. Gus Vlahakes at MA General Hosp. The first thing he did is turn the file folder over and started drawing pictures and diagrams of what he would do during surgery. Any one who knows me can appreciate how important pictures and drawings are to me. I immediately connected with the man and the doctor. MA General felt comfortable also, I guess the city girl in me felt at home. Dr. Vlahakes felt very confident that that my aortic valve did not need to be replaced. My stenosis is relatively low and the valve is pumping fine. He felt it is better for me to have my original parts. It means we may have to address the valve in 10+/- years but we would have to do that anyways since I did not want a mechanical valve. Who knows, in 10 years they will have some creatively brilliant way to replace a heart valve. I have to say my cardiologist, Dr. Mark Casey has been fantastic during this process. He has spent so much time patiently talking to me and answering my questions. I am so lucky to have him as a guide and healer. More news to follow.

Thank you to everyone who sent messages of support. I have found myself reading them many times. Each time a smile grows on my face and I am filled with peace. I have spent the weekend shifting gears and realize that the extra time is needed. This surgery is not a challenge I can plow into and break apart. This part of me has a rhythm I have never known.

Yesturday brought a small set back and a lesson in patience. My appointment with a surgeon at MA General was delayed due to an emergency and then the surgeons vacation. This means my apointment with my \"second opinion\" is delayed until Aug. 31. I am resisting the urge to just get this done. This is a tremendously difficult decision but I will trust my cardiologist and wait another month.

This is my first entry! As I sift through the thousands of issues and emotions in the last couple of months I have found this site to be a wonderful resource. Such a simple concept, sharing your story with others, yet how many of us are too busy or reluctant to do it! To those I have invited, I will update this as I go and look forward to hearing from you!