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what are the very first signs of a leak in blood work.

erintaylor Message
17 Jun 2011, 01:53 PM

I've read a lot about this syndrome on this site but I am unsure of the very first sign of a attack. Ive read the section how to know for sure if your having a attack. But it talks about what to do when your hemoconcentration is already high . Is there something you could look for besides that in blood that would be a sign for things to come ? I'm currently staying in the hospital with my son . We have been here over night for observation and are doctor has noticed a drop in albumin of about 10 % but is still just barly below normal range I think it was 63 . Besides this one thing he's absolutely fine . Hgb 112 sodium 138 . Anyways I was just wondering if there was any earlier signs to look out for.
alapenna Message
17 Jun 2011, 02:20 PM

Regard to my daughter experience, these were (in the order of appearence) the very first signs that an attack was arriving: - eye puffiness - stomach pains and vomit Only in acute cases, there were the syntoms that are well known in scientific literature: - hemoconcentration, many blood test values out of range and albumin drop (I don't know what was appearing before, probably they appear together). I am quite sure that when the first signs appear, there is no evidence of hemoconcentration or other clinical evidence, because in 2 cases my daugher was observed in the hospital and constantly monitored. She had a case in which there were only first two signs and nothing more happened (doctors supposed because we gave corticosteroid at the very first signs). I hope this is your case. Please keep us informed about how is it going.
aporzeca Message
17 Jun 2011, 03:46 PM

In my experience when I was having episodes of SCLS (late 2005 to late 2009), the symptoms sometimes were the commonly reported ones (runny nose, flu-like, or stomach problems) but sometimes they were not: towards the end, I had no early warnings at all that an episode was underway -- and I was getting them more and more often. Therefore, my smart doctors got me a HemoCue device so that I could monitor my hemoconcentration on a daily or half-daily or even hourly basis -- just like diabetics check their sugar levels to see how they're doing. (There is no easy way for a patient to check his/her albumin, so that is not a practical alternative.) That way, I would know with prompt and scientific certainty what was going on inside my body, I could phone or email my doctors about it, and we could do something early on -- before I passed out -- whenever the readings were abnormal. So I started to monitor my Hgb (hemoglobin) and to keep detailed records of the results, and did so for over a year during which I had episodes (six months) and also after I stopped having episodes (another six months), thanks to monthly IVIG infusions. I have stopped measuring myself since mid-2010, because after going on IVIG, my readings were absolutely normal day after day, month after month -- so there was no point in pricking myself. The monitoring of my hemoglobin for over a year provided a treasure of clinical information about SCLS. For example, while at the beginning we would take every upward departure from my normal hemoglobin range as the start of an episode of SCLS warranting a medical response and hospitalization, we discovered that there are cycles of hemoconcentration that reverse themselves on their own before reaching clinically significant levels, so they can be managed at home by taking Prednisone or nothing at all, depending on the HemoCue readings. This is consistent with reports from other patients at an advanced or uncontrolled stage of SCLS of frequent, self-reversing cycles of swelling, limb pain or dizziness that they endure without requiring hospitalization. Therefore, we came to redefine what constitutes an episode of SCLS warranting hospitalization and intravenous medications -- in my case, as one where the hemoconcentration reached 20 gr/dL. (The trigger would be much lower for a child, of course.) Thus, my recommendation is that, if you really want to know what is going on with your son -- when he has a cold but not an episode of SCLS, or when he has an episode but no cold, or when he has a mild episode that can be monitored and treated at home, or a severe one requiring hospitalization and IV medications -- then get yourself a HemoCue and start monitoring his Hgb every day, or twice a day, and more often whenever the instantaneous results you get are higher than normal. Yes, you do need to draw a big drop of blood with a lancet each time, and it does hurt, but kids and adults get used to everything. Your family will finally have peace of mind, and you will taking him to the hospital only when he really needs to go there. Think about it: no more wasted hospital visits "for observation" like the one you are describing -- and, at the other extreme, no more instances of keeping your son in school or at home when he _should be_ in the hospital.
claude53 Message
17 Jun 2011, 05:00 PM

Arturo's suggestion to measure the hemoglobin (Hb) is quite correct. I think that this should be repeated more often (every 6 hours) when a SCLS-Patient presents, in the absence of signs of infection, an abnormal fatigue, loss of appetite, nausea, vomiting, watery diarrhea, dry cough, abdominal pain and a sensation of thickened skin. The hemoconcenration and fall of proteins (albumin) occur several hours later. Remember that a leak engages progressively and that the mechanisms of pressure regulation, circulation, etc. hide the first signs of a capillary leak. Only when these mechanisms are overwhelmed has the Patient obvious signs of systemic leak with blood pressure drop and schock. Edema appear more later when resuscitative measures are undertaken (infusion fluid). Claude Pfefferlé
erintaylor Message
17 Jun 2011, 05:17 PM

Well we just got blood work back and is albumin is up at 70 so all is well. Our doctor was just being cautious. Thank you all for the quick replies and more valuable information .
WazzaACT Message
18 Jun 2011, 01:42 AM

Thanks to all the responses. This was very helpful for me also.
Josephite Message
23 Jun 2011, 07:01 AM

Hi Erin. Jim can display the following symptoms up to two months before an attack: - swelling in face, especially around eyes - swelling in neck - swelling in feet and legs (comes and goes) - shortness of breath - sudden sweating - dizziness - nausea - loss of energy - elevated pulse, even if the blood pressure is good. This one is our biggest indicator. When a leak happens Jim's blood pressure will eventually drop. But before that happens his pulse will speed up in an effort to maintain a normal blood pressure. So anytime we see Jims pulse speed up into the 80's (60's is his norm), we start doing daily blood tests. These symptoms don't all appear at once, they come and go. Sorry for the length of this post. (his normal range is in the 60's, we start getting blood tests if it goes into the 80's as this indicates his blood pressure is trying to drop, so the pulse speeds up to keep your pressure in a normal range. - dizziness - nausea - loss of energy
Josephite Message
23 Jun 2011, 07:08 AM

I should also mention those pulse rates I mention are resting heart rates. We let him rest a bit before taking his vitals.
aporzeca Message
23 Jun 2011, 12:14 PM

Dear Liesa: I'm so sorry to hear that Jim has had renewed episodes of SCLS! If he still cannot tolerate theophylline and the terbutaline is not helping -- no great surprise, by the way -- I recommend you guys wage a battle to get him on IVIG as soon as possible. Your quality of life and eventually his survival are at stake. I realize that in Canada you are stuck with fewer medical care options that in tne U.S. because of the government healthcare system you have, but do what you can to get other doctors involved in his case (try internal medicine and hematology specialists, possibly at a hospital affiliated with a medical school) if your assigned one is not supportive, Write to me at _aporzeca@american.edu_ if you'd like to receive an updated package of materials for you to submit to your existing or other doctors in support of IVIG treatments.
josee Message
24 Jun 2011, 02:02 PM

Bonjour, vous pouvez aussi demander à votre médecin de communiquer avec le mien... il a vu le changement drastique depuis le début de mes traitements. j'habite au Québec et je reçoie des traitements d'immunoglobulines (sans problème) depuis près de trois ans. depuis, tout va très bien. voici mes coordonnées: foresteriesdj@tlb.sympatico.ca bonne chance.
maryjane Message
24 Jun 2011, 03:44 PM

Hello everyone, I wanted to pass on some information that was just given to me. I know it will be of some help to you. Knowledge is power. I just returned from NIH. I was there for study of SCLS. While doing the contrast MRI of my heart a couple of flags went up. That prompted a contrast CT Scan. That scan showed lytic lesions on my spine. Completely discovered by accident. The follow thru was a bone marrow and pet scan test. The results of bone marrow as well as lytic lesions on spine confirmed diagnosis of multiple myelnoma. Very early stage. So early that if the contrast CT Scan was not performed they would not see it. Given the nature of this SCLS, we all know that this can be a possibility regarding our health. Unfortunate, but possible. I was speaking with Arturo, and we thought it may be a good idea for you to discuss with your physician having these procedures done. Early detection can make all the difference!!! I believe it is a miracle mine was found. I have a great prognosis. Yesterday I started on an IV of Zoledronic Acid Injection. I am still consulting with doctors regarding my best plan of action. Dr. Druey at NIH had me speak with leading multiply myelnoma doctor. Dr. Ola Landgren. They do have a study available in Aug., or Sept. starting for newly diagnosed patients. This can be delicate situation, because we also have the SCLS. Will keep updated, good luck to all. Blessings, Mary Jane
maryjane Message
24 Jun 2011, 03:45 PM

Hello everyone, I wanted to pass on some information that was just given to me. I know it will be of some help to you. Knowledge is power. I just returned from NIH. I was there for study of SCLS. While doing the contrast MRI of my heart a couple of flags went up. That prompted a contrast CT Scan. That scan showed lytic lesions on my spine. Completely discovered by accident. The follow thru was a bone marrow and pet scan test. The results of bone marrow as well as lytic lesions on spine confirmed diagnosis of multiple myelnoma. Very early stage. So early that if the contrast CT Scan was not performed they would not see it. Given the nature of this SCLS, we all know that this can be a possibility regarding our health. Unfortunate, but possible. I was speaking with Arturo, and we thought it may be a good idea for you to discuss with your physician having these procedures done. Early detection can make all the difference!!! I believe it is a miracle mine was found. I have a great prognosis. Yesterday I started on an IV of Zoledronic Acid Injection. I am still consulting with doctors regarding my best plan of action. Dr. Druey at NIH had me speak with leading multiply myelnoma doctor. Dr. Ola Landgren. They do have a study available in Aug., or Sept. starting for newly diagnosed patients. This can be delicate situation, because we also have the SCLS. Will keep updated, good luck to all. Blessings, Mary Jane
tiggrrr027 Message
25 Jun 2011, 12:45 AM

Mary jane, Thank you for passing on that information. I know it must be difficult to do so given the circumstances and we are grateful. I also know that you are in good hands with dr druey and the other doctors at NIH and early detection is very important. When my brother went to mayo and was first diagnosed with scls I think they did a bone scan,etc. but I don't think he has had one since. I thought they told us that if the number associated with the igg protein in the blood went up then you were more at risk for multiple myeloma so he has always kept an eye on that. I would think a bone scan or other test every so often would be helpful in early detection. Best wishes to you during your treatment. Your positive outlook will get you through this ! Linda
Josephite Message
25 Jun 2011, 09:28 AM

Thank you both Josee and Arturo. I may contact you both as we have an appointment with someone in hematology in the fall. Our main specialist is in internal medicine and associated with the local university. He's been very helpful and we get IVIg as needed, when Jim goes to ER and is hemoconcentrated. Although I agree with getting monthly IVIg, Jim isn't quite convinced. And free will being what it is, I'm unable to force him to seek it (nor would I try to, although he does know how I feel about it). Jim's reactions to IVIg go far beyond the normal headache others seem to get. He also gets extreme migraine (with light sensitivity), racing heart, sweats, and up to nine days of nausea/illness that pretty much keeps him bed-ridden. While I can argue with him that it could help keep him alive longer, I'm unable to argue that it improves his quality of life. For him, it's like having to have chemo..for life. Not too appealing. He's going to give Theophylline another try to see if his body can tolerate it. Thank you both though. I will likely contact you as you suggest, as having more info available when we see the hematologist would be helpful (and I would LOVE to have a second opinion from another doctor).
Josephite Message
25 Jun 2011, 09:41 AM

Maryjane, I'm sorry to hear of your diagnosis. But I'm very glad that it was caught at such an early stage. Thank you so much for this very important reminder. Jim is to have yearly scans to monitor his MGUS and look for signs of myelmona. It hasn't been done yet this year, so I'll have to follow-up. Keep us posted on how you're doing, and I hope all goes well.