I have been on IVIG every 2 weeks for 2 years & feeling pretty good. I will be going thru a stressful several months & I know stress is trigger for me, I went to www.cliawaived.com to purchase a Hematocrit just as a precautionary measure. I wasn't able to create my account, so I called. I was told they didn't have any machines to sell to an individual household-medical facilities only. He recommended .I try a local pharmacy. I will ask the next time I'm at the pharmacy, but any other suggestions ?

I believe you mean that you would like to purchase the HemoCue 201+ blood analyzer in order to measure your hemoglobin concentration levels? Have a (young, more tech-savvy?) friend help you set up an account because it's really not difficult to do and, indeed, if you call and ask, you will be told that the device is for professional use only -- but they don't require you to prove it when you set up an account on your own. And no, pharmacies don't carry the device precisely because they're not supposed to sell it to the general public. The other way to do it -- the way I did it years ago, before Cliawaived came along -- is to ask your doctor to order it for him/herself, in which case you'll have to reimburse him afterwards for the cost of the analyzer and a supply of cuvettes.

I purchased as Arturo has recommended and it was quick and very successful. The added advantage is that you can also elect to get their special offers and they can be considerable savings on cuvettes etc.

I have also been on IVIG every 2 weeks for approximately 15-16 months. Doing pretty well. No major attacks. I receive my infusions at Beaumont Hospital over an 8 hour period as home infusions did not work out. In the past, I have been hospitalized with aespetic menengitis , and I have had allergic reactions and other complications from the IVIG. We now have the right combination of pre-meds and the correct infusion rate, and I am doing well with it, other than migraines and the occasional hives. Hydration the day before , day of, and day after, is key for me in minimizing my migraine heaches. I drink lots of gatorade, water, and coconut water . I have a question: I have been meaning to buy a Hemocue machine. I went on-line to the Cliawaived site and was wondering which one you recommend? Is it the 201 model for $499 $599, or $799?

The one you want is the HB 201+ analyzer plus a supply of so-called cuvettes, which are thin plastic mini-containers filled with the chemical agent that reacts with your blood and delivers a measurement of your hemoglobin once you place it inside the analyzer. If you are only going to measure your blood once in a while (say, on those occasions when you don't feel well), then I don't recommend buying the round canisters (vials) with 50 cuvettes each, because once you open the canister the cuvettes inside are good only for 3 months. (I used to buy the canisters when I was having frequent episodes, and I was testing myself at least once daily and several times during each episode.) Rather, you should get the individually packaged ones that come in a red paper box with 100 of them, because they're good for 2 years each. That's why the better choice for occasional users is the $599 starter package. You don't need to buy their Basic Connect software. (That's for blood banks and emergency rooms that use them all the time and want to store the information in a computer or other monitoring device.) You'll also need to purchase alcohol pads, gauze pads, a lancing device, and the lancets, whether from your local pharmacy or online. However, look for the thickest lancets you can possibly find (gauge 21 or 23, at least here in the USA). The most commonly found are very thin or fine-point lancets, but they are meant for diabetics to test their sugar. They don't yield enough blood to fill a cuvette. On the company's website (www.hemocue.com), you can watch a video showing you how it all works.

I was able to get the HB201+ ordered & I was thrilled. Now I recv'd an email from the company & now need to fill out a "Customer Use Certification Form" b4 it will be shipped. It is asking if this is being used for a Forensic Facility and/or for Professional use - add license # or for resale. None of the options apply - any suggestions ?

Mmmm...I guess that they're plugging the loophole they previously had, so your choices are (a) to go through your doctor and have him/her order it for you, as mentioned above, which is what I did 5 years ago, or (b) to check the "Professional Use" box and write in a fictitious license number, in the hope that they won't check it.

I've noticed most of the sellers of this machine have closed that loophole. There seems to be an official form they must have filled out prior to shipping to prove that you are a medical facility and not an individual home. It's too bad, because I just finally saved up enough to get one too. Arturo, is there a reason this is the preferred machine? I'm thinking of looking at other options for home hemoglobin analyzers. However, if there's a reason this one would be better, then I may approach my GP to see if there's a way she can help us get our hands on it. It would be so helpful for us. Jim and I have had two or three trips to the ER in the past few months that could have been avoided if we could just monitor levels at home.

The HemoCue device was the only portable one that was on the market in 2009, so that is why one of my doctors purchased it on my behalf. It's the only one I own and am familiar with -- and I can vouch that it works, is accurate (if you follow the instructions), and it lasts. Since then, other such devices have come on the market, as we can see in the Cliawaived website: the STAT-side M, which seems to be less expensive; the HemoPoint H2, which appears to be a little more expensive; and the Pronto 7, which is non-invasive (namely, you don't have to prick yourself to obtain a sample of blood) and is thus the most expensive. Blood banks, clinics and emergency rooms tend to use these devices to screen quickly for anemia -- namely, a low Hgb reading, which is the opposite problem than the one we face in an episode of SCLS -- so you might want to ask the opinion of nurses who work in those heavy-use environments.

Thanks for that background info Arturo. The FDA website lists only two anemia checking systems for home use, and neither seems suitable (one kit requires you to mail in your sample to the lab, the other kit doesn't seem commercially available and is a single-use product). I'm currently taking a look at this machine: http://www.hemoglobinhometest.com/. However, I have no idea if it would suit our needs or if it's even very accurate. If it's not too expensive, I may just bite the bullet and try it (or something like it). I can always take it with me the next time Jim has an episode, and compare results to what the ER gets back from the lab (of course, they won't be exact, but if it's close enough it may be worth it). I donate blood as frequently as possible, so on my next donation I'll ask the nurses there for an opinion. If I manage to locate a device that works for us, I'll certainly share the info here.

Oh, and I would caution everyone about the machine I posted a link to in my previous post. The machine does not have FDA approval, and it monitors you for low hemoglobin. I've messaged them asking if there is a cap on how high of a level the machine can read, and also if they are pursuing FDA approval. I just wanted to let everyone know that so they don't run out and buy this machine, and potentially waste their money. Update: I am also considering the URIT-12 Hemoglobin(Hemospherin),HCT(Hematocrit) Test Meter Kit which has a measuring range of 4.0g/dL 24.0g/dL(g/L optional) and a memory of 250 test results. I am currently favouring giving this machine a try.

I found a new sight that carries the Hemocue machine. It is www.preciousarrows.com As I was placing my order, I didn't see any "professional use only" disclosures, so I'm hopeful. I will post again as soon as it arrives !

Thanks for this. Raleigh is about an hour away from my home. When I get over that, I will try and get by there, as they have a storefront as well. Maybe I can talk with the owner and learn a little more - might be a good resource to have.

I did receive my meter & strips without having to complete any provider forms. It cost about $180.00 more, but I also feel this is another "control" I have with SCLS along with the biweekly IVIG treatments ! Take care everyone.

Thank you for letting us know! You'll see, measure yourself now that you are healthy, and then measure yourself whenever you are not, and you'll know whether it's the SCLS or not that is the problem. There is an instructional video at _http://www.hemocue.com_, then go to Hemoglobin, then to Video.

I recently found, and successfully ordered Hemocue-related supplies, from another online company which doesn't ask many questions: _http://allmedtech.com_

I see that the HemoCue 201+ is very popular. Are there any views on the Stat Site M Hgb Hemoglobin Analyzer.

Hi Gene, I ordered my hemocue from the USA via fishpond.. Cost about Aus$800 , but was only a day before a reply came to suggest the cuvettes were out of stock... Yeah right! Still, it arrived with a transformer which coped with either 220 v or 110 v...all good. I then ordered to cuvettes and pricker from hemocue Australia.. Cost $250. All is good and working well, but I have reservations. If you squeeze your finger too much, you raise the error level.. So my readings while well range from 14.2 to 16.8. Also, close to an attack, I become hypovolemic, and my peripheral circulation is very very poor... So I will have to squeeze my finger more, therefore causing false readings. Perhaps an ear lobe... But then if I am shutting down, I am unwell, and it already too late. Has anybody had to cope with this dilemma? John

John, I'm glad you bought the HemoCue, so you can get yourself an instant Hgb reading whenever you don't feel 100% normal. Yes, follow the instructions and do not squeeze your finger too much -- certainly not close to the tip. If your readings range from 14.2 to 16.8 then you are doing something wrong, because the analyzer is extremely accurate. The way to get better blood flow from the lancet's insertion is to use a wider-gauge, higher-flow needle -- the wider, the better. Thin needles (say, for diabetic patients to check their sugar levels) are no good for us. Aim for gauges closer to 20 than to 30. As to how to measure your Hgb close to an attack, when you "become hypovolemic, and peripheral circulation is very very poor" -- forget about it! Head immediately to the hospital for professional management of your episode. The episode you try to nurse at home could be the first you don't survive.

Thanks Arturo, I agree with all you say totally. Especially the bit about fiddling around while your Rome burns! The lancets I am using are the hemocue supplied ones, and they recomend pricking the side of the finger. This produces far too little blood flow. I really believe that it is all a learning curve.. For instance, pricking further proximal into the pulp of the finger seems better. John

I get consistent (and I believe accurate) readings around mid 12's. Anybody else down at this level when they are not having an attack?

I wish, Wazza, My lowest for ages was 14.1, and attacks send me to a high of 22.0 ! John

Warren, The "normal" range for Hgb goes from 12.5 to 17.5 g/dL, depending on a variety of factors. A low hemoglobin count is generally defined as less than 13.5 for men and less than 12.0 for women. Readings that are only slightly lower than normal aren't considered significant and cause no symptoms. However, if you are concerned about possibly being anemic, do discuss it with your physician.

Arturo. Many thanks. I was just wondering if others went to the lower end of the range when not having attacks. Seems like I might be the odd one out.

Hi Wazza.. Do you take aspirin?

Hi John. I take nothing other than IVIG.

Is anemia a 'side effect' of chronic capillary leak?

No, I have no knowledge of SCLS causing anemia.

Hi windows, Haemolytic anemia can be a side effect of IVIG... But then I recollect you are not using it? John

Thanks John. I am not having IVIG now although did for 6 months. It must be unrelated

Hi Everyone, I just have a quick question about what you are testing for with this hemocue machine? Specifically what the levels in your blood will tell you?

The HemoCue analyzer gives you an instant reading of the proportion of red blood cells (hemoglobin) circulating in your blood. Therefore, whenever said proportion rises from your normal range, you can be said to be "hemoconcentrated" -- the higher the reading, the more severe the situation -- and that is a tell-tale sign of an episode of SCLS. (The blood pressure tends to drop markedly several hours later, once the episode is further along, so it's not a good leading indicator.) It sure beats going to the hospital's ER for a mere blood test which will take a couple of hours to process. For additional information, go to the tab "Disorder Details" and click on "Lab test for hemoconcentration" under "Diagnostic Tests."

So basically it's a measure of red blood cells circulating in your blood? I have so little knowledge about my disease it is scary. My doctor measures my leaks by taking my blood pressure, which is sometimes high even though I am really sick and know that I am definitely having an episode. My blood pressure meter at home sometimes can't measure my blood pressure because it's too low. I get an error message. At the hospital if I go in through the ER, the doctors on staff just give me IV fluids. Even though I am receiving IVIG treatments every twenty one days I am still sick often. I've been ill since November. Maybe I should get a meter. In answer to the anemia and SCLS my hemoglobin or iron levels were low for a while and white blood cells were high. I found out that my gallbladder had been bad since 2006. Not one doctor could find where the low iron levels were coming from, not even Mayo Clinic. The doctors that did know just neglected to inform me. I was basically septic and bleeding internally from 2009 until 2013. Have them check everything, *don't* just let it go like I did that could be dangerous and life threatening.

Hello kimber.... I had a blood test which showed 3 week intervals were too far apart, and I have not ad an attack since changing to 2 weeks apart. The meter has been no help to me. John

Thank you John, I will talk to my doctor again about why I am still sick while receiving IVIG treatments. I was doing very well for the first six months and then the fatigue returned and I experienced an episode that lasted for three days. As time passes the symptoms become worse. Now I am sick all the time. I thought the problem may be the infusion rate. They are slowly increasing my infusion rate and as they increase the rate I suffer. Now following an IVIG infusion I sleep for two or three days.and when I am able to stay awake I feel good for a week or so and then back to bed I go. Once again thank you for the advice. Kimberly

I found out why I am still very ill. I rode in an ambulance to the ER last week. My hemoglobin was 6.3 the opposite end of the spectrum when it comes to detecting a capillary leak. My BP was 76/32 on the ride to the ER. I was experiencing a capillary leak just combined with internal bleeding, "pneumonia", and a c.diff diagnosis. My iron level was actually zero. The conclusion and diagnosis of my pnemonia was extreme GERD. so bad in fact the GI decided I aspirated during my sleep? I had an endoscopy which did not reveal any problems in my esophagus or stomach, but a 4cm diverticula? in the distal portion of my duodenum. I have to wait until the c.diff is completely clear before they can perform a colonoscopy to look for the source of my internal bleed. Anemia is a very serious condition, so once again I am pleading for anyone who is anemic to pursue the cause until your doctors find out why. I came close to dying and if my son had not called 911 when he did I may not be here to implore anyone with anemia to seriously look for the cause.

I am so glad you survived this terrible ordeal. It sounds as though you were fortunate to have caring family around. I am anemic too despite being on iron tables for over a year and now have organ problems with my liver enzymes being very high for apparently no known reason. I will be having a CT scan of my GI tract tomorrow so hopefully this will find the cause of the anemia. I wonder whether all the leak episodes can damage the internal organs? Take care and I hope you feel better soon

I am praying that they find out the cause and hopefully the CT will give the Dr. the information they need to help you. For me it is a waiting game. My levels are stable now. Hopefully the colonoscopy will provide all of the answers to my anemia. Best of Luck and please keep us posted on your progress.