Monday, March 29, 2010)
“Orthostatic Hypotension”
Yesterday I titled the post “I have goals.” Today I was reminded that I may have goals and plans, but ultimately I am not in charge. “If you ever want to make God laugh, just tell Him your plans.”
After a good weekend, we were scheduled to go to Moffitt this morning for blood work and a consult. It looked like it would be a pretty easy and quick day. As you probably already surmised, nothing goes quite like we planned. Patra and I got to Moffitt about 9:00 a.m. and back to the apartment about 4:45 p.m. It was a long day.
The problem continues to be fluid levels which result in orthostatic hypotension. The amyloidosis is causing me to retain fluid, primarily in my lower extremities. Unfortunately, at the same time, I am losing fluid in other parts of my body. So I get to the point that I feel “a quart low.” It has already caused me to pass out on several occasions.
The quick diagnosis is made by doing orthostatic blood pressures. The nurse takes my blood pressure while lying down, then while sitting at the side of the bed, and then while standing up. As I move from one position to another, my blood pressure goes down but my pulse or heart rate goes up rather significantly. I get dizzy and light headed. The significant increase in heart rate indicates a compensatory effort by the heart to maintain cardiac output.
That’s where I was when I got to the clinic this morning. Unfortunately, the blood test results are not showing the type of improvement we had hoped for. My white blood cell count and basically every other important number was low.
So today ended up being busy and long instead of short and sweet. Several additional blood tests and blood cultures were ordered to make sure I don’t have some rare virus causing my numbers to remain low. (When you have amyloidosis, which is very rare, you don’t consider anything else too rare, so I will feel better when these tests come back and hopefully rule out any rare virus.)
I was also given a shot of Neupogen which hopefully will stimulate my white blood cells. (Unfortunately, the Neupogen previously seemed to exacerbate my nausea so I am praying that I will not relapse with respect to the nausea.)
Thank you for praying and keeping in touch!
Additional picture from Emily:
Grandpa, Megan (5 months) is completely exhausted after hearing about your long day at the hospital. Keep getting better. We all miss you at home!
Yesterday I titled the post “I have goals.” Today I was reminded that I may have goals and plans, but ultimately I am not in charge. “If you ever want to make God laugh, just tell Him your plans.”
After a good weekend, we were scheduled to go to Moffitt this morning for blood work and a consult. It looked like it would be a pretty easy and quick day. As you probably already surmised, nothing goes quite like we planned. Patra and I got to Moffitt about 9:00 a.m. and back to the apartment about 4:45 p.m. It was a long day.
The problem continues to be fluid levels which result in orthostatic hypotension. The amyloidosis is causing me to retain fluid, primarily in my lower extremities. Unfortunately, at the same time, I am losing fluid in other parts of my body. So I get to the point that I feel “a quart low.” It has already caused me to pass out on several occasions.
The quick diagnosis is made by doing orthostatic blood pressures. The nurse takes my blood pressure while lying down, then while sitting at the side of the bed, and then while standing up. As I move from one position to another, my blood pressure goes down but my pulse or heart rate goes up rather significantly. I get dizzy and light headed. The significant increase in heart rate indicates a compensatory effort by the heart to maintain cardiac output.
That’s where I was when I got to the clinic this morning. Unfortunately, the blood test results are not showing the type of improvement we had hoped for. My white blood cell count and basically every other important number was low.
So today ended up being busy and long instead of short and sweet. Several additional blood tests and blood cultures were ordered to make sure I don’t have some rare virus causing my numbers to remain low. (When you have amyloidosis, which is very rare, you don’t consider anything else too rare, so I will feel better when these tests come back and hopefully rule out any rare virus.)
I was also given a shot of Neupogen which hopefully will stimulate my white blood cells. (Unfortunately, the Neupogen previously seemed to exacerbate my nausea so I am praying that I will not relapse with respect to the nausea.)
Thank you for praying and keeping in touch!
Additional picture from Emily:
Grandpa, Megan (5 months) is completely exhausted after hearing about your long day at the hospital. Keep getting better. We all miss you at home!
Comments
We will keep on praying that the fluid situation can be rectified soon and that the numbers will come up.
It must be discouraging at times to see the two steps forward and one step backward. However, we must believe that God is doing HIS work even though we don't understand the process of that work.
Seeing the photos of those precious grandchildren surely gives you such a boost. They are such precious angels.
Bob, thanks for explaining the process a bit more to us. This helps us to understand somewhat better what the doctors are doing to try to solve the problems.
Remember, we love you and hold you and Patra in our hearts.
Lex and Linda
I would tell you to just hang upside down and let those fluids balance themselves out, but I guess you have had enough hanging around stuff going on lately. Seriously, our prayers continue to go out for you. Your blogg inspires me each time I read it. Looking forward to a time when we see each other face to face again.
- Bob.
You & Patra get a good night's sleep and take care.
Ted & Carol W
From Dave Q. -We appreciated your humor about your 'lake trip'.We humans naturally want to 'get up and go'. I was pleasantly surprised to read that yesterday-- to walk around that lake - almost a mile!! For crying out loud!!! You had the will and strength!!!
We will continue to pray for you & Patra ,specifically that God meets your needs.
In Christ's love,
Ruthie & Dave Quarles
Hope you're resting after a long day at Moffitt. Praying for you guys tonight. We love you!
Bob, You are an amazing man and give so much to others, this blog is just one more example. You and Patra both inspire me and always have. We're praying for y'all and send love to you and your family. Thanks to all the Buggs too for the updates and pictures.