My HH Journey
I was diagnosed with Hereditary Hemochromatosis in December 2009. I had never heard of HH. Shocked is not the word. I felt like a rug had been pulled out from under me. I have the most horriable veins ever they are small and roll and blow. If I had a regular blood draw it would take 3 - 4 sticks and then they usually had a hard time getting what they needed. And thick. So when I was told what the treatment was I was devistated. At thatpoint my internist say I definately should get a port. I get set up with a Hematologist and he left the practice so I had to changed over to another. She had the head chemo nurse check my arms real good and she was in agreement that I needed a port, so I saw a surgeon and got scheduled for the surgery. I had the port placed on 7/28/2010. I have my first phleb on 8/12/2010. I am having extreme anxiety and am totally stresses out. My internist put me on Zanax Friday 8/6/10.
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On 8/12 the nurse could not access my port. Thinks there is a small clot at the end of the line. I agreed to let her try to do a regular phleb since I was there. She tried 3 times and could get nothing. The needles were larger then my veins. Kept blowing. I go back next week and she is going to put a clot buster in for 2 hours. Wish me luck. I am so depressed.
On 8/19 port flushed ok but no luck. Nurse put clot buster in stayed for 2 hours. Still having no luck. She said I might have to go to the hospital and they could put a dye thru line to see if there is a larger clot or the line could be kinked. She flushed one more time,and BINGO finally she got blood in the line. She was able to get 500cc, then gave me some fluids I felt pretty good. I am so glad, I hope it continues to work well. I am probably going to have to be on Coumedan but if that is the price I have tp pay, so be it.
I went today 8/26 for my 2nd phleb. Flushed OK. They nothing no blood. Put clot buster in again for 2 hours. Still nothing. No phleb today. I see the Hemotologist on Monday. She will decide if I have to go to the hospital and have a dye contrast scan to see if they can tell what is wrong maybe a large clot. If so the hospital can put in a much stronger clot buster then the Dr office can.
9/3/10 Had to put clot buster in again. Was able to get appx 250cc. Protime indicated blood too thin. Thats crazy. My blood is still very thick. I may have to go to hospital for dye study next week.
9/9/10 Had to go to hospital in Charlotte and hae a Port Dye Study. Showed a sheath on the end of port. They put a stronger clot buster in the port that took 4 hours to go in. Still did not work. Also the line was not straight is had some slack at the port. Well now I may either have a new port put in or they may have to go thru the groin like a heart cath and get hold of the line and take the slack out, but no guarantee that it won\'t do the same thing. I am so discouraged.
Went to surgeon this morning. I am going to have to have my port replaced. The line has a loop in it. Scheduled for next Friday the 24th.
Had port replaced on Sept 24th. 3 weeks later I went to try a phleb. Success flushed and blood, thank GOD.
then the next week Success
Now three times in a row I am so glad.
Well the port is still working great. However my joints especially my knees are killing me. I have had knee problems since my 30\'s and was told I would eventually have to have knee replacements on both. But since I have strated my phlebs regular I can hardly walk. I am using a cane. My knees feel like they are completely deteriated. When I stand I feel like I am going to fall. I can hardly stand long enough to shower. I struggle to go to work every day. I can\'t go shopping anymore, I am so depressed. My husband doesn\'t understand the pain I am in, he gets angry, I cry. I cry a lot. I miss going out with my daughter. I can\'t get any Christmas shopping done. I feel so helpless. I need to have the knee replacements but I can\'t afford to not work. I feel my job is in jeopordy due to my health problems. MY boss is not undersanding at all.