Haptoglobin RBC major issues

@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......

Good morning, @jerrysgirl3. Wow, after reading this post, my had went to my heart!! I’m so sorry you have to deal with that lack of medical professionalism where you life. I’m had to admit I’ve been spoiled with the care at Mayo. So if you can at all get to Rochester or Florida, which ever works better for you, I really hope you can do so!
I’m with Mayo-Rochester though it’s 4.5 hours from where I live. But their collaborative approach has all the specialists that you need on one team. They’re brought in as needed. In my case, I had issues after my bone marrow transplant that required a neurologist and a liver specialist, all brought instantly with a request from my transplant doctor. So all 3 of them would be in my room talking together.

Your poor body is in a hyper response mode right now with the hives developing just being around flour! I also hope your issue with constipation can be resolved soon as well. That’s just an awful feeling! I think I mentioned yesterday about the one and only time I had an enema…it was actually while I was in the hospital for 5 weeks. Omg it was hilarious between my oncology nurse and myself. I wish I could share the entire story here, but suffice it to say, my experience was legendary in our chemo ward and anytime I go up to visit all of the nurses and I just crack up…

Our husbands are real troopers aren’t they? I always felt badly too that I was the one that took advantage of the “for better or worse”. But these aren’t health issues that we asked for nor are they our fault. I only hope you can find a larger clinic where your doctors can work together to make you whole again!
Let me know what you find out from neurology today. Hugs

MRIs were both good - no sign of stroke YAYYY! However .... then what is it ? Had some labs done today to test for anemia. I wish he had done a retest of my tick borne ehrlichia 🙁. I just took some Phillips Milk of Magnesia. If that doesn't work then on Wednesday I'll try a Fleets enema. My fear is that the stool is so hard that it won't be able to soften enough to actually come out 😳.
Rochester is the closest. Wait. Is that Rochester MN?? Or NY? I have Cancer Resource Services that will pay for hotel food and transportation 100%!! That's a long way always and well away from family.

Ohhhh that’s wonderful news that there’s no evidence of a stroke. I’m wondering if you are still having side effects of the tick borne illness?! That can be so pervasive!

Good luck with the Milk of Magnesia. That name conjures memories of my childhood…my mother swore by that stuff and I was a frequent flyer. Ugh… The enema’s tend to work rather well. So I wish you a healthy delivery. 🙃

Unfortunately, I’m not talking about Rochester, NY.
Mayo Clinic has 3 main campuses. Rochester MN, Phoenix AZ and Jacksonville FL. They are all world class medical facilities where people do come from all over the planet to be treated. They are mindful of the fact that patients come from great distances so quite frequently, if you’re diagnosed at a Mayo Clinic they work with your local clinic for you to receive care closer to home. I had my transplant at Mayo, still return for routine followups, but blood work, infusions and such could be done locally so I didn’t need to travel back to Rochester.

However there are Centers of excellence who partner with Mayo Clinic and share the same vision of Patient’s needs come first.
I know you’re out east, here’s the map of the Centers of Excellence. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

This might be an option for you.