Well, I went the whole month of March without blogging about hemochromatosis, more specifically, my wife's hereditary hemochromatosis or HH. However, March brought good news on the HH front: The blood-letting has begun!
(BTW, I trust people "got" that the image which accompanied my February post on phlebotomy was the barber's chair from Sweeney Todd.)
No fancy graphics this time, but I am hoping to capture video of what happens when the phlebotomist draws Chey's blood, so read on. Early in March a hematologist prescribed a course of 4 weekly blood draws (part of the delay was the fact that Chey collapsed on the way to her first appointment with this doctor).
At this point, 2 of the 4 have been done. We don't yet know the effect on her iron levels, but I'm guessing there is still a long way to go. Why? Because the phlebotomist has to brace herself against the chair to draw the second and third vial of blood.
That's right, even though Chey has been fitted with a port to facilitate the process, the blood is so thick it is hard to suck out. As far as the phlebotomist, a.k.a. nurse-with-big-needle, is concerned, this is a likely sign of excess iron in the blood.
In the meantime, efforts to assess, fix, and/or compensate for, the damage that HH has done to Chey's endocrine system are ongoing. Unfortunately this is very hit or miss at the moment. Some days she feels almost okay, but many more days she feels extremely fatigued, emotionally dizzy, and prone to hot flashes of Biblical intensity. This emotional dizziness means going from frantically alert and in danger of sleep drepivation, to mordantly comatose with generalized body pain, with outbreaks of uncontrolled weepiness in between. In other words, no fun at all, not to mention a real strain on the washing machine.*
But we're not giving up home on the phlebotomy treatment. The hope is that reducing the iron in Chey's system will enable some of the damaged or under-performing organs to rally and return to normal. After all, this is the year of Hope.
Ed: Sorry if the washing machine reference was a bit obscure. It comes from the fact that Chey has to change clothes many times a day when she gets these soaking sweat attacks. Think of cartoon sweat, squirting from a person's head...it's like that only for real. I kid you not.
My nurses used to need 5 or 6 big syringes each phlebotomy but now they have 'Vacuum Bottles'. They jam the needle in my arm, it has a long clear tube running to another needle that they poke into the vac-bottle. Works great. Now they don't have to wear out thier thumbs pulling on syringes. As far as thick blood goes, it's not that it is packed with iron but you need to drink lots of water. Especially the days leading up to phlebotomy. Amazing what keeping the body hydrated can do for your well being.
ReplyDeleteHi Stephen,
ReplyDeleteI thank you for the information about haemochromatosis. I have just been diagnosed with 'IT" about a month ago. After researching every symptom, stressing, feeling like crap and wanting to know what the h**l has been wrong with me for the last 8 years!! I finally have an answer. I have an appt to see a Haemotologist in...June and have a good doctor at last. One that believes me and does not think that everything was in my head. I was even starting to think that..as if you would want to feel sick and tired all the time!! The most frustrating thing is that my father also has HH and even though i told my last doctor that, he never did do any follow up about it! And of course I did not know about this disease until now.
I did not realise how this iron overload can make you feel, but after reading people's comments and blogs, I now know that some of these conditions are exactly what I have had.
You are right. Waiting for the tests on liver, kidneys, etc to come back is a very stressful time.
Your wife is lucky to have such a supportive husband by her side. I wish her and you the very best for the future.
BTW I am a 'kiwi' but now living in Australia.
Thanks again for your help..
Kim
And...just something that was funny. My Dad's nickname is Scob and my son's name is Shaye. I guess that is pronounced the same way as Chey. Just a coincidence! i just noticed.
ReplyDeleteKim
Got to this site looking for thick blood. The last two times they tried to get my blood the nurse also told me my blood was too thick. Yep--you guessed it, told to drink plenty of liquids and take an aspirin before coming in. I've had approximately sixteen of these phlebotomy and it has been the last two that have caused the trouble. Maybe my veins have constricted like herion users???. My numbers are now normal and I have to have blood drawn every six months to keep things in check. JIM M
ReplyDeleteHi folks: My husband got to searching the web while I was at work. He was trying to find info on therapeutics via a port a cath. I was diagnosed 1/7/93, no symptons but a brother with it and I had a ferritin of 800. I have terrible veins and in 2003 they just could not handle the large needle. Then a sweet young thing at another blood bank had the bright idea to use a 21 butterfly on me and then she filled 70 red top tubes. Took only 20 min and was way less stressful than the big gage needle. This lasted for 2 years but then the veins gave out again. Had a port placed and for the last 4 years have been having half phlebotomies via the port. My ferritin is in the 20's but iron saturation stays high and has done lots of joint damage to hands and toes. But my gal is retiring this month. Just talked to the replacement this morning and after hearing "my story" has agreed to continue this way...thank heavens.
ReplyDeleteIf you have not contacted the Iron Disorder Institute in Greeneville SC than I strongly suggest you do. They have an on line discussion group and loads of good info. NIH is doing double phlebotomies with replacement fluids going on at the same time and ferritin levels are dropping twice as fast. Web site for IDI is : www.irondisorders.org Margaret
I just had to join this blog, since there is so little information about HHC and the treatment, and diagnostic protocol is so different depending where you live in North America. Most of my family lives in Canada. Half of my 10 siblings have HHC and half of my 4 kids.
ReplyDeleteMy saturation levels are high although my ferratin is normal. Any input on this? We should have a patient's group on Fcebook........or a website!