New Blog

Today Scott started his own blog in his own words. I love his first post and I look forward to more! Maybe now I'll start a blog about being a mom instead of an unpaid nurse. Here's the link.

Life is Good

I have been lacking in the post department lately. It’s really nice to be enjoying life without medical issues getting in the way. The last few months have been great! Scott is feeling better than he has in a very long time! He is not suffering with any infections, colitis, kidney problems or heart failure right now. He still has energy after work and on the weekends to go out, clean the garage, hike, bikeride, drive kids around to activities and enjoy life. What a marvelous change! I have the new experience of occasionally wondering if I can keep up to him. He has been going to the gym regularly and building up strength and endurance. He has increased his work hours and is using public transportation. He is noticeably happier and so is the rest of the family.
I guess that’s why I haven’t posted lately. I just feel like I’m bragging! It has taken over 2 years but Scott is finally enjoying the full benefits of having a new heart! I have always been grateful that he survived his transplant even with all of the difficult times that came after. However, I am SO HAPPY that he now feels great!!! There were many times when I wondered if he would always feel unwell in one way or another.
We have many plans for the next few months. We want to enjoy the mountains. We are going to attend a family reunion and we have a trip booked to Italy! Can you believe it!? I am really excited. It will feel like a trip to celebrate how good life is. Life IS good.

Antibiotics and Bikerides

Last week we felt like a normal family. On Good Friday we went for a family bikeride. On Saturday we went for a little hike like normal families do. The new and exciting part was that Daddy came too. He didn't sit and watch or stay at home. He rode his new bike and kept up with the rest of us. At some point during those two days I said to Scott "I should be taking pictures and posting on the blog about how good life is. It's time to have a nice, positive post." Sometimes, when you get complacent, life decides to throw you a curveball. I guess I jinxed it.

Saturday night Scott spiked a fever. BOO!! He spent much of Easter Sunday in the ER or layed up on the couch. We knew that an infection in his leg was flaring up. He had the same infection over a month ago and it took a few weeks of antibiotics to overcome. We now know that he is prone to leg infections as this is the 5th one in the last year. After a second and third trip to the ER Scott is now on home IV antibiotics with tubes and a fanny pack of medicine. He has an extremely sore cellulitis in his leg and is limping or sitting with his leg elevated. So much for bikeriding and hiking.

The other problem with this turn of events is that I developed strep throat at about the same time Scott's infection began. This Easter weekend began so wonderfully and ended so badly. I feel like I should quietly enjoy the good times and not make any comments about how good things are so that irony can't turn around and kick my butt!

I do know one thing - I AM SO GRATEFUL FOR ANTIBIOTICS!!! They continue to save Scott's life. They have also almost cured my excrutiatingly sore throat. YAY FOR ANTIBIOTICS!! Hopefully we'll have more family bikerides and hikes before too long. Next time I'll keep my thoughts about blog posts to myself.

2 Year Anniversary

In two days it will be two years since Scott's transplant. It is still amazing. Although life continues on and our new normal is happening it still fills me with awe to know that Scott was one of relatively few people to receive this amazing gift.

Yesterday Scott had a biopsy. He recently changed his main immunosuppressent that was causing the colitis. It has since resolved!!! YAY!!!!! He is feeling so much better. The doc who did his biopsy commented on how good Scott was looking. He also said something that really stuck with me. He said that Scott has had a really rough two years since his transplant but he is much better than he was before the transplant. Sometimes I need that reminder when the medication side-effects are really difficult.

I'm grateful to have this anniversary to remind me of how far we've come. Looking back can be a faith-building experience. I still have little nagging fears about the future but I usually choose to focus on the present and enjoy every day we've been given together.

HAPPY NEW HEART ANNIVERSARY SCOTT!

A relatively short hospital stay

Because this blog is my place to vent when I'm worried and/or frustrated about the ups and downs in Scott's health I have a new post. Last week Scott ended up in the hospital for 3 days. It's been well over a year since he's stayed overnight in the hospital. It's pretty good that he went so long. It's also good that this stay was relatively easy and he felt pretty good.

For the past many months Scott has been suffering with some difficult symptoms that have caused weight loss and a general feeling of BLAH. He was recently diagnosed with Colitis which seems to be the cause of these symptoms. I understand that there are many causes of Colitis and we don't know for sure which one is causing Scott's. Quite a few causes have been ruled out so the docs think it is medicine-induced. The problem is he takes so many meds and some are absolutely essential to keeping his heart from rejection. We don't know what they'll do about it yet. We're waiting for an appointment with a specialist in a few weeks.

That brings me back to the hospital stay. Scott has been feeling generally poorly for awhile. He's cold most of the time(he has no insulation), and he could sleep anytime(he sometimes does). Last week he came home from a day of work and started shivering and he felt awful. I took his temperature and he had a significant fever. When Scott has a fever and no symptoms of cold or flu we assume he has an infection and to the ER we go.

He had the shortest, most efficient ER experience to date and was admitted to the hospital in a few hours. After IV fluids and IV antibiotics he started feeling better very quickly. He had to stay for 3 days to complete the course of IV antibiotics. They never found what the infection was but he feels better so that's enough for me.

I am actually very happy with how this turned out this time. It's not nearly as hard to leave Scott at the hospital when he feels pretty good and can take care of himself. It was much harder the other times. I sure am glad he's home now though!!!

I keep hoping that a time comes when Scott is energetic, feeling great and back to all normal activities. Although he's not there yet he really has come a long way! Every day I'm grateful to still have him here.

Vacation!

We made it! It was a wonderful vacation. We enjoyed Disneyland, the beach, the Birch Aquarium, San Diego Harbor and a relaxing, private house with a pool. We were gone for two weeks and we could have stayed longer. It was really nice to not have any commitments including work, school, lessons, or appointments.

Scott did have a few medical incidents while we were gone though. He noticed a small sore on his leg the night before we left. During our first day which included our flight and a drive he noticed the sore getting more tender and a redness growing around it. We were discouraged because that was looking a lot like an infection that needed taking care of - especially for the immunosuppressed! So we spent a long evening at the Emergency of the local hospital in Anaheim. I was impressed with the care Scott received - he was seen by an Infectious Diseases specialist and prescribed 10 days of 2 different antibiotics. They also took a sample of the sore and later told us that is was MSSA(the more easily treated staph infection).

Although Scott received excellent care I am really grateful to live in Canada with universal health care. I don't want to jump into the debate regarding private vs. public health care but I really appreciate that I don't have to worry every time we need medical care that it might bankrupt my family. I know that we sometimes wait longer here and sometimes the staff is overworked and sometimes the system is overloaded but I also know that I don't worry about co-pays or whether or not my insurance covers this or that and I don't have to sit down with a hospital administrator to explain how we'll pay every time any of my family needs medical care. It's good to know that during times of medical crises my focus has been about Scott and his health, not how we are going to pay for his medical needs.

I certainly don't understand all of the issues the US is facing regarding health care but I have seen my brother-in-law's family in Utah struggle with paying for life-saving medical needs while unemployed and uninsured. I have wondered if we had lived in the US when Scott needed his transplant if we would be drowning in medical debt right now. I guess I'm glad I don't know the answer to that question.

Scott did have another trip to a clinic to have a presciption filled for another $200 that would have been completely covered at home but I know that's small change compared to what others deal with. We also had to get our son, Sam, new glasses when the ocean waves stole his only pair right off his face. Another $160 gone. Despite those small incidents we really had a great time!

My Turn - to a very small degree

We've had a nice summer. We've spent time with family and friends and stayed close to home. The weather was crummy in general but we still found ways to have fun. We are looking forward to extending our summer soon by taking a trip to California for some sun, Disneyland and family time. I can hardly wait!

The last few days were an interesting change from the last few years. I had a little turn to be the sick one while Scott held down the fort. I had some stomach bug that made me stay in bed for nearly 3 days. I know it's nothing compared to Scott's solid 6 months in hospital and all he's been through but it did give me a tiny glimpse of how he felt - and vice versa. It really is best when everyone is healthy!!! It's hard being the sick one - needy, useless and whiny(in my case only). It's also hard to be the healthy one and take care of the family, house, and the sick person but Scott did a great job. I think he was truly relieved to be on the other side for a change.

Our current goal is for Scott to stay healthy not get that awful stomach bug before or during our upcoming trip! Wish us luck.