Weird Polycythemia Symptoms Story - Need Professional Advice Plz

Hi,

I'm new here and have decided to become a member, to ask for help with understanding some issues with my condition.

I suffer from a few conditions and symptoms, that appeared together at the same time (a few of which confused the docs). My story is long, but I'll try to keep it short and ask only one or two questions at a time. Better this way.

First off, I've recently been diagnosed with Polycythemia Vera (I'm 30 years old). This was after fluid started accumulating throughout my whole body, starting with the legs, going all the way through the abdomens and filling one of the lungs. My abdomens became huge and round due to the fluid retention.

The fluid in my lungs, especially one of them which was semi-full, caused me to suffer difficulty in breathing for around a month or so.

Then came a worse symptom. Every time I breath, I felt severe pain at my lower left side of my back (like at the kidney region) accompanied with severe pain at the left shoulder. I learned later on it was because of an enlarged spleen I had which the diaphragm now is in contact with and possibly scratched or something. (This problem of the enlarged spleen was solved later and my spleen is shrinking back to normal size each day. No more pain.) But back to the main issue:

Turns out I have Polycythemia (high hemoglobin levels, high TLC and high Platelets.. the other symbol for white blood cells was lower than normal.. I forgot what that symbol was, but the TLC, Hemoglobin and Platelets were high).

I went to hospital emergency and got approved to check in and stay at the hospital for treatment. Stayed there for around 10 to 12 days.

What they did to me when I was there:

- Gave me Lasix (the diuretic medicine) along with vitamins through vein, twice a day, which helped me get rid and pee off all that excess fluid. I lost 9 kg within like 3 days or so. All was water. My stomach (or abdomens) shrunk to normal size now, lost all the water from my legs and was able to breathe normal.

- Gave me some other medications (Spironolactone, Pantoprazole, and Allopurinol).

- They wanted to take a sample of the fluid from my abdomen before all the water was drained out due to Lasix (they'd do that through injecting a needle/syringe in my right side below the lungs). When the doc did that, he was surprised that all that came out was blood and not fluids. He mentioned something about Platelets to the other doc next to him but I couldn't hear properly.

- They did venesection (phlebotomy) of one unit, but were surprised my blood was stubborn and my haemoglobin only decreased by a very low fraction. It was also very thick blood and they had a hard time making it fill the one unit (I believe it already clotted in the needle or something).

- They did CT scan and said there was some evidence of thrombosis in the veins between the liver and spleen or something. The part in the CT report said this:

"Hypodense shadow noted at the lower end of th einferior vena cava just before the bifurcation and iliac veins extending to the femoral veins which could represent query thrombus formation for further investigation".

I don't know what that means, but they said because of my Polycythemia, thrombosis occured and was possibly responsible for the fluid accumulation and the enlargment of the spleen. (liver was also enlarged at early stages but now is normal).

- Then they explained to me that they will have to give me warfarin to make my blood thinner, plus 2 injections to my abdominal skin of some similar medicine that makes the blood thinner. They explained that when I go back home, I will have to continue on the warfarin pills (but the injections will stop).

- They did another venesection after like 3 or 4 days.

- They took a sample from my blood and sent it to Germany for JACK 3 or something test (I live in the middle east, and they don't do that check here, so they had to send it over to Germany... still waiting for the results of that test).

- They wanted to do bone marrow biobsy. I refused. Then, the head doctor and chief of staff arrived and explained to them that they shouldn't do anymore venesection as haemoglobin isn't that important in this case. He also said that no need for bone marrow biobsy before the JACK3 results from Germany. If they are positive, then good. If negative, then they should do the biobsy.

- Then the dreaded part came: They explained to me that I will have to start taking Hydroxyurea (which I've read many negative things about with regards to side effects, especially it's link to converting polycythemia into leukemia). I strongly refused at first, and asked them to give me time to think. I then did a lot of online research on my laptop which my brother brought to me at the hospital.

It seemed there was no way out of HydroxyUrea. It was the only mild thing available. I am scared of chemical medications and I know that anything that messes with my bone marrow can cause cancers down the road. They also explained to me that I will have to take it for the rest of my life (maybe only lower the dose in future)!

They wanted to give me 4 caps in the morning and 4 caps at night (500mg). High dose at first then they will lower it as they explained. I refused and said let's start with only 2 in the morning then 2 at night, and do it for a coupla days then check the results. They agreed.

The 2 at morning and 2 at night weren't doing it for me, so they asked me to take 4 at morning and 4 at night. It worked and my platelets, TLC and hemoglobin count started to lower (although the hemoglobin was still stubborn and only lowered by very small fraction, unlike the platelets and TLC).

The two warfarin pills (1mg each) a day that they put me on in the hospital, plus the two injections of the similar medicine, made my INR relatively high (2.1 or 2.2 can't remember). So they asked me to that when I check out, I should take only 1 and a half pill a day at home.

Time for me to check out. I am at home now. I think they forgot that I will no longer get the injections, which resulted in them surprised that my INR became lower than expected again. (I did blood tests at the hospital again after 2 days of checking out). After noticing the low INR, they asked me to go back to 2 pills of warfarin a day. They also put me on 2 caps of hydroxyurea in the morning and 2 at night. Effect was low so they asked me to increase it to 3 caps in morning and 3 at night. Effects were good. TLC, Platelets and the rest dropped to normal. I remember when I checked in, my platelets were in the 600 range. They dropped down to 400 after hydroxyurea, then now they are around 140 which my docs say is the normal range.

Everything dropped to normal, EXCEPT the hemoglobin. It went back from the lowest count it became (17) to (18.4) my normal high hemoglobin level before treatment.

My Questions are:

1- Is hydroxyurea supposed to lower the hemoglobin as well? I read online it increases it. But maybe they were referring to only fetal hemoglobin and maybe that's diff. What's the truth?

2- I want to get off this hydroxyurea thing as soon as possible. According to my docs they say if I do that, I will develop the same probs and risks as before. I DO NOT want to stay on that thing for the rest of my life. Even with lowered doses. Please tell me there is a way out!

3- I used to be fit and do sports. Like weight lifting. Also used to take protein powders (shakes) and powder creatine supplements (no steroids though). I asked the chief doc if I will be able to do that again and lift weights. He said no, if I gain weight, I will risk bleeding because of the warfarin. Do you have any advice on that? Warfarin and weight lifters?

Apologies for the very long post.

I appreciate you going through my post and appreciate any kind of advice or tips you can offer.

Thanks in advance,

Sambi

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