Category: The Family

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!

If You Felt Like This…

…you might need to sit down.

If the average healthy person felt like I felt most days, they may need to sit down. They may even need to lie down. Maybe call in sicks to work? They may say, “You know, I’m not feeling so hot today.”

For the person that is chronically ill or terminally ill, lying down is not always an option if we want to live as a fulfilling life as we can. That’s not meant to sound dramatic or grim, it’s simply the truth of my reality. I don’t want to live the rest of my life lying in bed!

So, I get up, and I brace myself. I try to make sure I shower when there’s someone home because I’d hate to slip, fall, or pass out, wet and naked, while no one is home to help me. I hold on going down the stairs because the last thing I want to do is take a header down those things and crash into the wall below (done that before…ouch!) I try to prepare dinner for my family as many nights a week as I can. I make menus and elaborate grocery lists. I drag my poor, dear, husband with me to one store after the next gathering all the groceries I need for my plans.

The truth is I need to keep moving; that’s what reminds me I’m still alive. I simply can’t lie down each time the room was spinning, my stomach was upset, or my chest felt like an elephant was sitting on it. If I did that I would spend the remainder of my life in bed, and that’s just no fun!

Really what’s happened is I’ve gotten use to it over time. I never feel 100%, that doesn’t exist for me anymore. So, I adjust what feels normal on a regular basis as my heart continues to fail. I would guess that most people in my similar position do the same thing. We get use to the room spinning, the endless stomach upset, and the pressure in our chest becomes more manageable. We adjust to needing people to help us do simple things like taking a shower, or running to the grocery store.

I guess the up side to all of this is I get to spend a lot of time with the people who mean the most to me. Those are the people who are here to give me a hand when I need one, or are the voice on the other end of the phone motivating me to get up and move!

Relieved and Disappointed

I should be in Rochester Minnesota right now, but I’m not because I’m sick. With what, I have no idea. It started Christmas day. I was tested for flu, strep, and pneumonia, but everything came back negative. Two days later I had a lovely ear infection in my left ear. That led to 7 days of antibiotics. Still not a lot of overall improvement, other than my ear infection being gone, so they tried some antiviral medication. I’m currently 4 days into that and so far I just seem to be getting worse…go figure. Yesterday I went in for a blood and urine test along with a chest x-ray, which all came out normal. So the bottom line is I must have some weird creeping crud that is causing one heck of a cough and generally making me feel lethargic.

After talking with the heart transplant team in Rochester we decided it would be better to postpone my visit for about four and a half weeks to give my body some time to get over whatever it is that seems to have taken over. Airline tickets have been changed, and hotel and car reservations have been cancelled for now.

I really wanted to go and get this stuff taken care of and off my plate so I could stop worrying about it, but then again I’m so glad that I didn’t get on a plane feeling the way I do now, not only making everyone around me feel miserable but feeling twice as miserable myself. This is just like me to get sick at the most inconvenient time!

If a person could will themselves to get better I should be a picture of health. I’ve been doing everything I can to make myself better. Seeing the doctor in a timely fashion, taking my medication as I’m suppose to, not laying around and letting whatever this is turn into pneumonia, trying to eat as much as I can, drinking plenty of fluids, etc… As of today I have an immune system that is a whole 21 month old, and we all know how often toddlers get sick, I’m not different, with the exception of the fact I’m a 44 year old woman.

This 4 and a half weeks gives me some extra time to get some things done. Help my youngest son finish writing some essays for a few scholarship applications for college. Put together some furniture for my mom’s new sewing room, well at least read the directions if I can’t do the assembly. Buy the new robe I want for the hospital, plus a few new pairs of yoga pants. Finalize a few more things for the oldest sons wedding in August. Get to see my middle son and daughter in-law a couple more times; have that dinner we planned but had to cancel. And maybe see my sister and her man one more time before we go.