Category: The Family

Photo Challenge

Husband and I – January 1, 2019

I’m going to try the 365 day photo challenge again this year. So here is photo #1, my husband and I in one of our favorite places to hang out…in bed. I’m going to have to get use to having my photo taken, OY! This Prednisone face with bullfrog neck is driving me crazy, but it is what it is. At least my hair looks good. Thankfully, I won’t be on this dose of Prednisone forever so the size of my face will go back to normal, eventually.

I got the results of my December 27th right and left heart biopsy and blood tests. My white blood cells are back to normal, which means my bone marrow is finally doing it’s job. All of my other blood work was good, just needed some minor tweaks to my medication. I was finally cleared to drive, so I got to drive myself to cardiac rehab on Monday. My biopsy came back with no rejection…EXCITING! Even more exciting my Kappa and Lambda Free Light Chains which would be a measure of the amyloid in my system were the lowest they’ve ever been, meaning I’m still in complete hematological remission.

I’m so happy I’m starting to feel healthy again…

View the entire Gallery.

I Survived…

…and so did my family!

Detoxing off of Zoloft was definitely not what I anticipated, and I can’t help but feel a little misled. At no time did my Psychiatrist ever mention that in the event I had to stop taking the medication I should wean off over a 90 day period. And when my cardiologist gave me a weaning schedule of 28 days, no one mentioned I would nearly lose my mind from weaning off the drug so quickly. But hey, I don’t have enough going on, what’s a little extra crazy to add to my life’s entertainment value.

Thankfully the crazy has passed, as have the withdrawal symptoms, and I’m starting to feel a little bit more normal (hey no laughing!)

I’m off to Mayo in Rochester again next week…I pray this trip is better than the last.

My Sweet Dotty

It’s been a rough week going back and forth to the vet. It started with Dotty getting her teeth cleaned. She had a cough for about four days following but otherwise seemed ok. Upon calling the vet about the cough I was told this was normal and it it continued over the weekend to bring her back in. Yesterday we noticed that her breathing was very labored, then today she started shaking uncontrollably. Thor was already at the vet for his teeth cleaning so they asked me to bring Dotty in when I picked up Thor. After a thorough exam and a couple x-rays the vet discovered the problem.

Dotty is in Congestive Heart Failure and her heart is very enlarged. In addition she has pockets of water she retaining all over and she has a mass in her gallbladder that they aren’t sure what it is.

The vet has started her on some medication to help get the water out of her system as well as meds that will help her heart. The prognosis isn’t great though. If we caught it in enough time we may have 24 months with her, but if we didn’t it might be as little as 12 months.

I’m just heart sick over all this. She is my first dog that was all mine. I’ve had her since she was seven weeks old and she’s been by my side for over eight years. She’s such a sweet girl with an amazing temperment, always gentle, always happy to see you when you walk thru the door. She’s can be sassy at times and has a feisty little attitude. I don’t know where to put these feelings about losing my little four legged companion, but I do know that she has had a wonderful life, has been loved deeply, and spoiled like a princess. All of those things will continue until she takes her last breath.

Last Day As A Civilian

Leland’s last day as a civilian…

Today, Easter Sunday, was our oldest son’s last day as a civilian. At 6 am Monday morning he leaves for Boot Camp at Fort Leonard Wood, Missouri. It seems so surreal that my baby, who is not only 22 years old, but married, has gone off and joined the Army. As a family we’re so incredibly proud of him. We know he’s going to do great and that this is just the start of another incredible adventure in his life. It’s going to be a long four months without him but we’re excited for his future in the Army and with his new wife.

We love you Leland, we’re proud of you, pray for your safety, and are thankful for your willingness to serve our country.

GO ARMY!

Surprised and Thankful

Man and Freedom
“Man and Freedom” by Ivan Meštrović. The sculpture depicts the human desire for indepence and self-realization. He is mounted on the wall in the Nathan Landow Atrium between the Gonda and Mayo buildings.

We’ve been in Rochester Minnesota at Mayo Clinic since Monday. Tuesday and Wednesday were scheduled to the max and I had one appointment after another. By the end of Wednesday evening I had been stuck a grand total of eight times, either getting multiple injections for various reasons or having blood drawn. To say I felt a tad bit like a pin cushion would have been an understatement. Really Thursday was the big day, that was when I had to go into the hospital for my fifth heart catheterization. The cardiologists in the heart and lung transplant department fully expected my heart to be in worse condition than it had been in July and October as did we; we were told to expect it. In all reality my heart should be getting worse.

Because of my Primary Amyloidosis, I have amyloid buildup on my heart. It causes my heart muscle to not expand and contract as it would normally. I was diagnosed pretty close to stage 4 of the disease so the buildup on my heart was/is significant. I went through five rounds of chemotherapy and an autologous stem cell transplant (basically a bone marrow transplant with my own bone marrow) and I have been in remission since April 13, 2016. I was told very emphatically not to expect any recession of the amyloid on my heart. Although it was possible, it was highly unlikely.

A year after my stem cell transplant, April 2016, an echocardiogram was performed to measure the thickness of the amyloid on my heart and at that time there was no recession. Disappointing, but not surprising. Another echocardiogram was done in July, 2016 and again no recession. We hadn’t expected anything different.

Now we’re into March 2017 and I have yet another echocardiogram and this time, recession. I have a heart catheterization the next day and the cardiologists conclude that my heart function has actually improved since July and I no long need the extra medication (inotropic therapy) they anticipated I would need to get me by until a heart became available for transplant. As a matter of fact, I don’t need to be listed for heart transplantation at all at this time because as of right now, it looks like my heart function may be improving.

Of course they can’t give us a reason why because they simply don’t know enough about the disease yet. But we’re going to take this positive news and roll with it for now.

I’ll come back to Mayo in three months for another check-up by the heart and lung transplant team, and they will continue to keep an eye on me every quarter. We hope that my heart continues to improve and heal itself over time and I stay in remission. With any luck, there will be new drugs developed in the near future to help eliminate the amyloid on my heart. There are currently two clinical trials going on for drugs that do exactly that, one of which is looking very promising. Although it’s not a cure, they are at least getting closer to a treatment for Primary Amyloidosis with Cardiac Involvement.

Right now I’m thankful…thankful for all the prayers and well wishes. Thankful to my family and friends who has been helping me get through all of this, because, let’s keep it real, it’s been hard at times. Thankful to the doctors and nurses who have cared for me over the last five years. But most especially I’m thankful to God for giving me this chance to live a purposeful life, I won’t waste it!