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Polycythemia Vera – Ed’s Recent Update

Ed’s Polycythemia Vera Update

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Joking - We love Ed's nurses, they are great!

Yesterday was Ed's monthly “blood-work check” up. His doctor ordered monthly visits again after the last clinical visit.

We started our morning with “temperature checks”, (as we do many times throughout the day/night). It is typically, “honey, how are you feeling this morning/tonight? How did you sleep, babe? How is your body feeling? Baby, are you tired?

We both ate breakfast, catch up on our social media, converse with one another, have a few laughs. Then the countdown to Sentara Medical Center in Charlottesville, Virginia begins. A little over an hour's drive to reach the infusion center.

After showers, I fill up the water cups, double-check with Ed to make sure he does not want to take snacks with us. I look at him one last time before we head out the door, he looks miserable. These appointments are dreadful to him. I just say “babe, are you okay?’, he guarantees me that he is. I kiss him and hug; we are out the door.

Arriving earlier than anticipated to the infusion center. Now, by this time, I have prayed about 7 times already. I pray a minimum of 3 times a day. I pray for Ed’s health, needs, safety, our children’s safety, their needs and both of our families. God hears prayers.

Okay, back to the appointment! We wait no longer than 15 minutes, he is called back. His blood is taken (2 tubes as usual). His nurse informs us additional orders were placed for updated tests not related to the phlebotomy. Those specific results will take a few days to come back. Swiftly, off to the lab they go.

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Waiting for results feels like an eternity. I sit there patiently, trying to make sure Ed is comfortable while holding my breath, figuratively speaking, inside I’m praying for good results.

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                 The nurse returns with great news                          

              Ed does NOT need his phlebotomy this month                    

 6-months phlebotomy free!!!!! 

YAYYYY

His numbers are in line and improving. The additional test results are pending, we will know later this week.

Ed is happy about the results; yet, he is confused. Questionably if the blood-work remains stable, exactly how is it, he feels incessantly fatigued, aching, unhealthy, and suffers from itching?

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These are quite frankly the symptoms of Polycythemia Vera, that is the answer. On each Facebook group, I have joined, nearly everyone complains of the same thing symptoms. Their blood-work shows stability, they do not need the phlebotomies, yet they have each of these symptoms, which Ed deals. I’ve read their stories. Some express worse symptoms. Stories of PV sufferers receiving phlebotomies that experience absolutely zero symptoms exist. This is a tricky illness.

Symptoms include:

Fatigue, general malaise. Dyspnoea. Intense itching after bathing in warm water. Abdominal pain. Purple spots or patches on the skin. Nosebleeds, gum or stomach bleeding, or blood in the urine. Throbbing and burning pain in the skin, often with darkened, blotchy areas. Headache and problems with vision. High blood pressure. Blockage of blood vessels. (Infarctions) This may cause heart disease, stroke, or gangrene of the arms and legs.

I have decided it may be beneficial to journal daily a list of Ed’s symptoms. I believe at this point; it would be a great idea to present these results to his doctor in March during the next follow up visit.

Ed’s next “blood-work check” is in January 2020, I continue prayers for even better results along with fewer symptoms.

Until that time arrives, we will resume as normal. Living as simple as possible. I will do my best to ensure he eats healthy (one cheat day a week), acquires enough sleep, strives to increase activity on his days off, laugh a little more, stresses less, most of all, loves harder, loves himself and loves the life we presently have.

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February 2020 marks Ed's one-year diagnosis date. Polycythemia Vera changed our lives. WE (Ed, I, his parents, his sister, and his son), have been living with this type of blood cancer. It continues to puzzle us. It impacts Ed in many ways. Physically, emotionally and mentally. In turn, this awful diagnosis impacts us. We are dealing with it mentally and emotionally. He is not alone in this. He will not be alone. This is a family journey. He will survive it; he will begin to live a normal life again.

I believe in miracles and I believe in the power of prayer, I also believe in Ed!

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One never knows what tomorrow brings, hold today tightly, as it is sure to pass.

Cherish each blessing.

 

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