Wednesday, March 30, 2011

It has been an interesting few weeks. My last transfusions went fine at the beginning of the month on a Monday. Blood pressure was in a normal range throughout. Wednesday morning we were leaving for our annual Mexico vacation.
Tuesday my blood pressure spiked, was over 200. during the day it went down to an almost normal 180, but in the evening went back up. Even in bed it was over 200. I developed a headache and chest tightness. What to do. I didn't want to make my wife miss vacation. I also did not want to have a stroke or heart attack tonight or on the plane tomorrow, or in the little Mexican town we were going to. Just before midnight I woke my wife to discuss what was happening and what we should do. We decided I should go to the ER at Virginia Mason, where they have all my records of heart disease and myeloma.
With some nitro and morphine they were able to get my symptoms under control and there were no enzymes indicating heart attack, but they wanted me to stay overnight. There went out flight to Mexico. They had me on heparin and kept monitoring my enzymes and had a heart monitor on.
Next day my headache was back and I became nauseas, vomiting and continuing with dry heaves. A pretty miserable day. By Thursday I was much better, actually had some food. Cat scan for pulmonary embolism and cardiac stress test were normal. An additional blood pressure medication had been added and BP was under control. I was discharged Friday morning, and we booked our Mexico flight for Sunday morning for whqat was left of our two weeks.
The entire time in Mexico my BP was great.
The transfusions have caused my iron level to rise to a concerning level, so a drug called Exjade has been prescribed. Among potential side effects are kidney damage, vision damage, and hearing loss. Great. So I had tests to establish a baseline for the vision and hearing. I already have quite a bit of hight frequency hearing loss, so I am considering hearing aids. Those are not cheap, and not covered by insurance.
BP has remained petty good.
I just started the Exjade yesterday, so will have to see what, if any, side effects I have. I seem a little dizzy, I'll have to monitor.

Tuesday, March 8, 2011

It was only 4 weeks since my last round of transfusions when I got 3 units yesterday. I would have had them at 5 weeks, but I will be out of the country for two weeks, so we went early rather than late. hematocrit had dropped only to 28, so the three units should bring me up to 37, higher than I have been for a couple years. I'm looking forward to increased energy.
Other good news is that total protein has remained unchanged, in fact all my labs are pretty stable, with the exception of ferritin. Rising iron levels are a side effect of transfusions. Too high can damage the heart and kidneys. So there is a drug called Exjade developed by Novartis which will bring those levels down. Apparently the drug is quite expensive, and the manufacturer has a program to help with the costs. I'm not sure how that is going to work out.
My other issue right now is blood pressure. I have controlled my blood pressure for over 20 years with various medications. Recently we have had to adjust dosage upwards due to higher pressure. I have had a sinus infection, on Amoxicillin, I don't know if that has any effect. But today my pressure was astronomical. I woke up with a headache, couldn't get my monitor to give me a reading. Thought maybe it was low batteries, so changed them, but no difference. I decided to inflate the cuff higher, and finally got a reading; 202/125. You kidding me? I laid down, to ease any stress and give my meds a chance to get into the system. An hour later reading was 211/121. Gradually it started coming down, and by 11:00 AM I was in the high-normal range at 137/96. It pretty much hung there the rest of the day until 6:30 tonight when I'm back up to 166/100, with a little headache.
So off I go, wishing I had a little longer to get this under control before I go to Mexico, but I did talk to my doctor, and we can adjust the med further. So I'm taking plenty to add a dose here and there to keep this down. The thought is that the transfusion yesterday added bulk to the fluids in the system, and therefor more pressure. And it should adapt and get back under control soon. I hope.