Haptoglobin RBC major issues

Good morning, @jerrysgirl3. Let’s get you in contact with Mayo. Here’s a link to get you started: http://mayocl.in/1mtmR63

If you click on there it will take you to Mayo’s page for requesting an appointment. Follow the prompts for selecting the campus you’d like to visit and make the call! That will get the ball rolling. You don’t need a referral, though I’ve heard that it can help.

Are you seeing a hematologist oncologist and having any treatments for your CLL?

@loribmt i'm sorry I haven't responded sooner to thank you for the link. I haven't gone on yet as now I'm having brain issues and testing. I am terrified of what they will find and at the same time would look forward to some answers which I am certainly not getting from current specialist. Things not looking good and am highly constipated and have tried everything 🙁🙁😵‍💫

Oh my goodness, @jerrysgirl3, you’re dealing with so much right now. I’m such a hugger and wish I could reach through the ‘puter…
Knowing your past history with your perforated bowel, I’m sure you’re feeling pretty stressed with the current constipation. If ‘things’ aren’t moving, it can congregate in one area causing more of an impaction. Sometimes that’s where an enema can be very helpful. (I’ve only had one once when I was in the hospital for 5 weeks on chemo. As much as I dreaded the thought, it was a godsend, didn’t hurt and totally did the trick!) But with your bowel history issues, lupus and the CLL it would be best to check with your doctor to see if it’s safe for you to try. If you’re on immunosuppressants and have a low white blood count, that can be dangerous. No pun intended… I hope things come out all right! 🙁

Having brain issues sounds serious. Are you having loss of memory, balance, that type of thing? What type of testing will you be having? Please keep me updated. Is this testing happening soon?

@loribmt I had MRIs (results not back yet) with and without contrast and an EEG. Problem with the EEG is that I was responding to their commands (eyes closed to stimulate sleep (!) eyes open) by focusing on memories of my late mom and dad, and my grandson video of him walking) - I was focused on these! There was no REM sleep! I was staring at my memories not running around with them! I know I have left sided issues but I think they were not clear to me in how I should respond. I thought the more quiet my thoughts are, the more clearer brain wave activity they would get! Not the opposite! This is what report said :
Description Electro cerebral activity consists of well modulated 8-9 Hz background activity that attenuates symmetrically with eye opening. Low amplitude faster frequencies are seen frontally. Sleep Drowsiness is characterized by attenuation of the background, intermixed diffuse slowing and slow lateral eye movements. Activation Procedures: Photic stimulation induces no abnormalities. Hyperventilation was not completed. Abnormal Potentials: There are persistent bifrontotemporal 4 to 5 Hz large amplitude waves seen in the recording. Also noted are infrequent left frontotemporal sharp waves. Electrocardiogram: A single EKG rhythm strip performed during the recording reveals no significant arrhythmias. Impression: This is an abnormal awake and drowsy EEG because of the persistent bifrontotemporal slowing indicative of bifrontotemporal cerebral dysfunction. Also noted are infrequent left frontotemporal sharp waves that may be potentially epileptogenic. To further delineate this abnormality, evaluation with 24-hour ambulatory EEG is recommended.
And yes. I am terrified of prior abdominal issues and constipation!! My Gastro doc next appt is in Oct! I got it in August and out myself on the "cancellation list". Thank you so much for understanding my concerns 🙁

@lorimbt I am on no meds and my wbc is over norm. Last one was 44,000. Prior was 67,000. Goes up and down. And even with that. If I have an infection my wbc will go up as well as with CLL!! But you need to look at MY OTHER NUMBERS!! Which no doc has done.
I have done several Fleet liquid glycerin suppositories and they sometimes help. But I'm having this massive low sodium issue, with primary having me take salt hydrating packets and I'm only doing a little bit of that (not the 1000 that each packet has but I use a little bit in a glass of water) but I don't think thats helping the constipation issue considering salt is used to dry things out and that's my issue. Hard and dry.

How much water do you drink during the day? That can also play a huge role avoiding constipation. The lack of sodium in your system can be a very serious issue. If if you’ve been given sodium to take, try upping your water intake but make sure you take more of the sodium so that you’re not flushing it from your body. It might help you to have a large pitcher full of water on the counter. Dump in the packet of sodium. Then over the course of the day, drink several 8 ounce glasses of that sodium water. Do you also take magnesium? How’s your potassium level? These 3 all work together in the body to keep things running efficiently.

You’re limiting the salt intake but are you also limiting water?

@lorimbt I have always had lots of water. Usually by 10 am I would already have 6-8 cups! However with the low blood sodium level (which was critical and almost killed me 😳) I was told to limit my water intake to 4-1/2 cups a day !!! No way to that! I have to drink water whenever I eat because of botched thyroid cancer surgery 2012 and nicked vocal cord nerves. I'm going to try no extra salt and just eat more salty things, which I rarely used to do. My magnesium and potassium levels are fine through diet. I call myself a medical miracle and wonder why no doctor wants to treat me. They could write a thesis on me and have it published !! 😁

Hi @jerrysgirl3. EEGs and their results are way out of my area of experience. I think it will be helpful to talk with them about what you felt you needed to do during the tests. You have have done everything just right. ☺️ But don’t read too much into results you receive. In fact it’s better if you don’t go looking at Dr Google to interpret your results. Some reports can put the heebie geebies in us and we find out they’re actually benign comments.
But I still feel, with all you have going on with your CLL and Lupus, that you would do well to find another hematologist/oncologist who will take your situation seriously. I know I gave you the link to Mayo Clinic. But even if you sought treatment closer to home with a larger teaching hospital that would be valuable. You need a place which will use a collaborative, bringing in different specialists on one team such as an hematologist for you CLL, a rheumatologist for your Lupus, etc.

When will you be having the followup with the doctor who ordered the EEG and the MRI?

@loribmt we have a massive issue with hospitals out here where I live. The local one everyone knows will kill you, they're affiliated now with a university hospital which I think has gone down hill since hooking up with our local one. My hematologist is 100 miles away in NYC and I asked in 2015 about an endo at the same hospital (at that time) so all docs would be under the same roof. He wouldn't do it. The other hospital is also 100 miles away but you can only drive there (where current doc is is accessible by bus but it's a 13 hr round trip which I can't do anymore) No other way. Actually my PA mentioned the other day that it's time to get the CLL and lupus docs on the same page. I can tell you with 100% certainty that it's never going to happen. I have to call tomorrow to make Neuro appt. Probably not til November even tho results are serious. I'm just disgusted.
And now, today. So I suddenly have milk wheat soy and egg food allergies since lupus diagnosis. Hubby baked some lemon cookies for himself, using wheat flour. I was upstairs resting. I came downstairs and was by the sink where he prepared and baked, and came down with my bad hives rash 😳. Contact allergy now too. Imagine if just by breathing I could inhale the flour in the air? I can't even eat food that doesn't have those ingredients in it but was processed in a factory that also processes those ingredients!! I get the same reaction - bad hives but not as extreme as if I actually ate those ingredients! Poor husband😢😵‍💫 I've changed his world as well......

All of the Chemo and stress gave me a rollercoaster or stomach and bowel problems. Metamucil every day helped some, and of course drink plenty of water. But after dealing with it for years a month ago I started eating about a 1/4 cup of Kimchi (Korean fermented cabbage) every day. My situation is now better than it has been in many years. (knock on Wood). Many people don't like Kimchi at all, but as it turns out, I do. You need to make sure that the one you get has all the natural probiotics in it. Some Kimchi brands have been treated/heated and no longer have the active probiotic. I had tried taking over the counter probiotics in the past with limited success, but the Kimchi has made a big difference for me.