Wednesday, June 29, 2011

Poor Air Quality but Beautiful Out

For two days they have warned of the air quality. It has been beautiful and sunny though. In the evening it's been cool enough to enjoy the patio a bit. For me I love the patio and watching the bird feeder and bird bath. Our next door neighbor has ducks and some of the tiny babies keep wandering into our yard. Rob leads them back (they follow him like he is the Pied Piper) and I even got a few pictures of him holding one. They make so much noise for their tiny bodies. Our pets are intrigued by them. They are contained in our fenced in portion of our yard so no threat to them.

I have had so many phone calls from the Univ. of Penn. Hospital. They pay attention to the smallest details. I should be admitted a few days before the surgery as I will need to go off of the Coumadin but instead be put on Heparin.
For those of you who are latecomers to my blog, I have had this surgery previously, with my aortic valve. It's a big surgery and the normal procedure is for them to cut through the sternum and wire it back together. Some people say it is not very painful and others find it to be very painful. It seems that more people who receive tissues valves (such as bovine or porsine) have an easier time of it. I have a mechanical valve and will be receiving another. I ran into some complications with my last surgery and I ended up in CICU for over a week. (I had been told that I would be in the hospital for a week total.) After I left ICU I spent another ten days in a step down unit. I experienced hallucinations after being given a sleeping pill and ripped out all my ivs. I was confused and when their was a power failure and I was on a ventilator I became so panic stricken. It's not just the physical that you deal with. I do believe I am going to the best place and will be using top notch doctors. The doctor who will be performing my surgery performs heart and lung transplants. He is prepared to deal with problems.

I continue to do very well with breathing. For the first time in months I am able to leave my house without an oxygen tank and it is indescribable the joy I feel when I just walk across a parking lot without gasping for breath. I swear that I will never.....never ever....take breathing for granted again.

Thursday, June 23, 2011

Feeling Joyous and Grateful

I am hopeful, oh so hopeful today. My wonderful pulmonologist, Dr. Gilbert, did my pulmonary function tests and they were greatly improved. Numbers such as 43% changed to 80%! I don't know who was happier the doctor or me. She had to fax a note to my employer today. I won't be able to return to work until winter. Once I have the surgery which wouldn't take place before July's end, it will be along recovery, including cardiac rehab. I am so hoping that my company will allow me to be on long term disability until that time. Financially, it won't be much at all but what is my life worth? Certainly worth more than the money I would earn if I worked but watched my health steadily decline. There is a window of time a diseased valve can be replaced but once things happen that would make the surgery unlikely to have a good outcome, that option is gone. I cannot wait. This is a big surgery. I will go into the details at another time but they will be doing two or three things at once. What I have is serious, but there is a "fix" to at least make it much better if not fix it altogether. The people in the doctor's office were surprised when they saw me. In the past month I have lost 24 pounds. Most of that was fluid that had accumulated because of the heart problem. About seven pounds came out in the chest tube and the rest has slowly come off with medication. I had to buy new clothes which has been fun except that my short term disability money has been exhausted. No pay unless I get approved for long term. Even so, that will be a fraction of what I made. Over the past two years we have lost so much income and had so much medical expense. Thankfully, I have had some money put away for medical emergencies such as this. We'll get by and what good is money if you don't have your health anyway?

Even though I am facing another heart surgery (and it's scary) I am so thankful that I live in a place where I have this option. I am so thankful that Dr. Gilbert went the extra mile and brought in cardiologists so we finally learned what the real problem was. The glass isn't half full, today it is brimming with hope. :)

Monday, June 20, 2011

The Waiting Game

I am still waiting on the final word of whether or not the doctors in Philadelphia will proceed with the surgery. My last set of lung functions tests (taken while I had so much fluid in me) were discouraging and they want to see better results. Sometime in the next few weeks I must have those tests redone. I am also getting yet another CT scan with contrast to clarify something else they found. Today I am down about twenty pounds from where I was a month ago. I now weigh about sixty-five pounds less than I did when I had my heart surgery seven years ago. That is without any surgery or diet pills, just lost the weight, particulary over the last twenty months by not eating. Some of it was fluid.

This morning I got up early and went grocery shopping. I am trying to eat a diet of mainly vegetables and proteins with some dairy. Eating little bread, low carbs and low sodium. I just bought an ice cone machine so I can make them and have them with sugar free blue raspberry flavored "syrup". It seems that syrup should be thick and instead it has the consistency of water but is flavorful. I also went to a local farm and bought three hanging baskets. My yard seemed naked. I won't be doing a lot of planting I have in the past. While I am breathing much better, bending over is a bad position for my lungs.

Yesterday was my first Father's Day without my Dad and I dreaded it. We bought a nice wreath for his grave that had a ribbon that said "Dad".
Tomorrow I go to the cardiologist here. I now have duplicated doctors in Penn. Sometimes I have to put myself on autopilot to do what I must. If I begin thinking of all that could happen it's overwhelming. One day at a time.

Monday, June 13, 2011

Home Again (Finally)

I was admitted to Univ of Penn Hospital on June 8th and was discharged last night about 5:30 p.m. I wanted to sprint my way out the door but Rob insisted I leave in a wheelchair as it was a hike to the parking garage. He was so right!

I had the cardiac catherization on both sides and another procedure done which I won't go into. I was awake for the entire nearly two hour ordeal, but the staff was wonderful and comforting throughout. I was given lidocaine at the sites where the incisions were made and a mild drug to relax me. The doctor spoke with me immediately, confirming what we thought to be so. My mitral valve was damaged with the infection in 2009 and now meets criteria to replace it. It is causing the pulmonary artery to have high pressure and my body is making a lot of fluid to compensate. Most of the fluid removed was already being replaced. They gave me some great drugs to get about ten pounds of fluid or more off of me. I feel wonderful again (except for soreness and fatigue.) Now a team at that hospital has to examine my hospital records to see how to proceed. My lungs must be determined to be able to stand a surgery if necessary. There is no point in trying to make one thing better if in turn another organ will be injured. Whatever they advise me to do, I will do.
One very disconcerting thing that happened was on Sunday morning. My roommate (whose lung was filled with fluid) passed away. I was talking to her a few minutes earlier. They rushed me out of the room into a private room. I think I went into shock and the rest of the day I was just barely functioning. I was so happy to come home. I keep thinking of that dear woman though and feeling that perhaps I should have done something more to help her. I kept reassuring her that when I was full of fluid I was in the same distress. They tell me she might have had something more wrong with her.
Well, I am beat. I went to the local hospital for a blood test, made phone calls all day and made a run to Target after getting my oxygen delivery.
Time to relax now. All in all it was a great day to be alive today. Thank you God.

Friday, June 10, 2011

Update from Rob

As you may know Nelle has been struggling with some health issues. On Tuesday she was admitted to the Hospital at the University of Pennsylvania.
She has asked me to let you all know that the procedure went well and she expects to be home. Sunday.
Thanks for all your good thoughts and prayers, they are much appreciated.


Wednesday, June 08, 2011

Lend a Helping Hand (if you can)

There is a cancer blog that I found via way of Susan's blog. She had a link to help you this woman who needs to raise funds to go for cancer treatment. If you can help her that would be great! Jeanne can really use a donation to help her get the treatment she needs. Please check her blog out and think about whether or not you might be able to help.

Waiting for my call from Univ of Penn Hospital telling me to come. I am going to be admitted today with the procedure tomorrow, Thursday. Nervous but eager to have it done with and know exactly where I stand as far as repairs or future surgery. Please keep me in your good thoughts and prayers and I will post when I can, most likely not before Saturday. Stay cool in this heat wave!

Tuesday, June 07, 2011

Now For Something Completely Different

It's been awhile since I made a blogging post that wasn't about my current health issues. I just read my friend Cynthia's entry and it got me thinking about forgiveness. When I was younger it angered me when people told me I needed to forgive others. Being raised with Christian values, this was a great source of conflict. I always felt this righteous indignation and for some reason that seemed to give me strength. Then I clung to the belief that forgiveness would only be granted if I received a request for it (even then I had difficulty granting it.) I began reading books and watching therapists on television who spoke about forgiveness. I began to realize that there were times I needed to ask forgiveness and never had. Oprah talked about how forgiveness was actually good for yourself. I began to see the other side of the coin. I began to think of things that had been done to me. One of the best examples was a childhood friend I used to have. I called her when I had cancer. She had a baby girl about a year younger than my son and I asked if she could watch my son some of the times I went for radiation treatment, maybe once a week. When I began to explain to her about the cancer she cut me off and abruptly said "I have to go. This is too depressing and I can't be your friend or help you." I heard her hang up. I sat there in shock and disbelief. I had known her at time for about twelve years. I carried this hurt for the next twenty something years. I was actually afraid to ask other friends for help for fear I would lose their friendship too. About twenty years later she called out of the blue acting like this had never happened. Over time, although it was never asked for, I forgave her. About five years after that she stopped speaking to me again one day, no explanation was ever given but I heard that she was upset with me because of a comment I made regarding her daughter's wedding we had attended. It was a buffet and our table was never called. Other tables were going up for seconds and I went over to the table and told them our table had been skipped. By that time there was nothing left but salad. It was very disappointing. Looking back, I have to laugh at this. I realize now that she has major problems that have nothing to do with me. I forgive her again, not for her (because she doesn't care) but for myself. We are all flawed individuals. Myself included. In life, it's just so ridiculous for someone to end a friendship over such petty things. REAL friendships endure those things. I think more than anything, I have realized that we use the word "friend" too often to describe an acquaintance. If someone hasn't been in your home in years (when they have been everywhere else they have wanted to be), is never avaialable when you need them, or never makes time to stay in touch they're just not really a good friend. In life we have so few really good friends. Ironically, so often the friends who are never there are the very ones who tell you over and over that they will be. I have learned not to count on people. In the end, I count on myself and if anyone else is there for me it's a bonus.

Thursday, June 02, 2011

What we have here is a failure to communicate....

Good night! I have waited home for three days to get everything squared away with Univ. of Penn. The doctor's secretary has been trying to set it up but she had no medical knowledge and was not able to answer ANY questions (although she was a lovely person.) My doctor didn't give the doctor ALL the information from the report and there is something that I think might deter him from proceeding. Yesterday I spoke with his nurse who assured me she would get the answers for me. Still waiting. I did take my cell phone and go out and have a pedicure and lunch (salad with avocado and a freshly made balsamic vinegar dressing that was yummy.) I felt pampered. It was a good day. So I still wait for the answers to a few questions but for right now it looks as though I will be admitted June 8th with the procedure on June 9th. The mere thought of this makes me feel faint. A girl's gotta do what she has to do and I have to do this. My back is so achey where the chest tube was. It's badly bruised. Give me a minute to get a little cheese for that whine. Baby Bel. :)

It was GORGEOUS today. Sunny with a breeze and high was just under 80. WE might have dinner on the patio. It needs a little cleaning first. I have to have meals on the patio in this weather, especially anything on the grill. The other night Rob made the most delicious peppers on the grill. Cutting carbs from my diet was not nearly as difficult as following a low sodium diet. It's in everything. The only way to avoid it is to make everything fresh or frozen vegetables. I love tomato sauce and that is loaded. Trying to find some with low sodium but so far no luck. There has to be a market for this. I love Hebrew National 99% fat free franks but they are way over the top. I don't know if I will ever enjoy a grilled dog again. Maybe an occassional bite. Eating out is even more problematic since they don't give sodium information on menus. When watching the cooking shows they are so liberal with the salt. I do use sea salt but still I am so restricted.

Have I mentioned lately what a wonderful spouse Rob is? Yes, like me, he is not perfect but he tries. He has been giving me my evening belly shots. They hurt and I hate them. It's easier for someone else to do it. Rob gets along great with my son. He doesn't try to parent him but gently explains at times why I do things. My son worries about me like a mother hen. He wants me to follow his rigid vegan diet (which doesn't include fish, eggs or dairy.) I try to explain we all have to do what is right for us and respect the choices others make for themselves. He wants me to drink coconut milk. If I'm having coconut milk I want a pina colada not cereal!

I'm here and I'm doing okay. This will pass and I will get through it. After all, I am bionic.