200+ transfusions in two years! Rare strain of anemia...advice please

Dear Colleen,

Every time I try to get advice from all hospitals, I understandably get the same response.

We must diagnose. Make an appointment.

I find it almost impossible to reach any of them online unless calling on phone. Then the response is same as through online correspondence.

It is like facing a wall. I cannot put her on a plane both because she may bleed from cabin pressure and we cannot afford care in the states.

Thank you for the advice...I will continue my search for help...where? I have no idea!

Warm regards,
Ron

Ron, I’m sitting here shaking my head as I read your reply. Honestly, I just can’t wrap my head around what you and your poor Cilvia are going through with her having that many continual transfusions, nose bleeds, the lethargy, the uncertainty… One thing is for certain, she’s one heck of a fighter!
You mentioned that Cilvia is still in need of more blood ‘and’ plasma. That tells me the blood she’s receiving has been broken down into the separate components I talked about last time. So if she’s getting red blood cells and plasma, is she also receiving any platelet infusions to help with the clotting??

I’m tossing out a few question for you so we can break this down a little more.
What is her platelet level number on her blood tests?

How did her doctors arrive at the diagnosis of Hemolytic Anemia?
Did any of her other family members have anything similar?
When did this start? Can you think of anything that precipitated this event? Any illness? Hemolytic Anemia can be caused by Malaria, Quinine used to treat Malaria, HIV, Type H influenza.
Was she tested for Malaria or any of these diseases I mentioned?
Does she have an enlarged spleen or liver?

With her current hemoglobin of 9, at least Cilvia must be feeling a little more human, though it’s still low. How is she doing mentally through all of this? I’m amazed with her low blood counts that she had Covid without any serious issues! What’s her white blood count?

Giving you both a big hug of encouragement. ❤️

Hi @renaldo

I've been reading all of the posts about your wife's problems with anemia and my heart goes out to you both. You must feel that you are between a rock and a hard place and no one likes to feel like that.

I've read all the great suggestions, especially those provided by @loribmt and @colleenyoung. I have one other thought. I'm not sure what the cost would be, but could you consider a video visit with Mayo Clinic? You would need to send all of her test results. If this could be done they might be able to have a blood sample sent to their facility in Minnesota.

I live in the US and have a rare form of cancer. Although I live near a major university medical center, they send blood samples to Mayo Clinic in Rochester, Minnesota. From a recent visit to Mayo, I learned that there are two Fed Ex planes that land in Rochester Minnesota twice a day to bring blood and tissue samples for testing.

If this could be done, you would not have the travel expense, but you might get the medical help with a diagnosis that Cilvia needs so badly.

Is this something you can look into?

Hello Ron and Cilvia, I’ve been thinking of you both so much lately and felt it was time to check in to see if there’s been any positive changes. Has there been any improvement in the frequency of transfusions?

@renaldo Dear Ron, I’m very concerned that there’s been no recent news about your sweet Cilvia. You’re both in my thoughts so frequently and I pray everything is alright. Sending you a quiet hug… Lori

Lori. I have been very busy caring for her as she took a turn for the worse.

She could not stop bleeding for over 48 long waking hours. This not only depleted her blood levels but also caused her great physical pain as she must sit upright so as not to swallow the blood. At times she will fall asleep, lean back, and swallow blood. This comes out regurgitated later.

We are now trying to see if we can get diagnosis from The National University Hospital in Singapore. They have written back with a long list of requests before they can take any action. Mayo proved to be totally worthless. They should be ashamed of how useless they can be for international patients who cannot arrive personally.

That all for now. My wife comes home after 12 days in the hospital in the last 14 days!

Thanks for asking. Good to vent!

In Scottsdale Mayo has a patient relations office. I don’t know if other locations have that. It might be worth making a phone call.

I too am disappointed with the Mayo Clinic. In short, I had Covid 19 in early January, got abdominal pain and rapid heart rate late January. February heart rate increased went to GI. said I had gallstones. Had them removed in March, no relief. Had another CT. Had kidney stones removed in April. All this time taking various medications for indegestion, IBSC, IBSD , I had an endoscopy, colonoscopy, blood tests, UA, all negative. I am now 12 lbs lighter. One ambulance trip to ER shows I have a UTI(I told them this is not why my stomach hurts). May - still losing weight. GI says I have a torn abdominal muscle. Go to another GI he puts me on Nortriptyline. No help. Beginning of July start to feel dizzy, faint when I get up in AM to let dog out. Heart rate now rests between 117 - 124. Had nuclear stress test. All good. Cardiologist does not want to put me on Beta blockers because it can cause your blood pressure to decrease. Come back in 3 months. End of July had pre scheduled hip surgery. Non weight bearing for six weeks. Blacked out for nine minutes in garage. Went to ER. said I have another UTI. Sent me home. 2 weeks later, about pass out again. ER doc said I was severely dehydrated and wants me to be observed and have IV’s for 24 hours. Next day I can’t stand up without my heart rate going to 162. Cardiologist came in and said I probably have POTS (a result of having literally being in bed 8 months). I don’t think my doctors believed me when I said I had been literally in bed 8 months!! Electrophysiologist confirmed POTS diagnosis with the help of my 24 hour holster reading in July which showed my HR up to 165 at one point! Called Mayo MN after 3 specialist recommended I go there. They turned me down! Why?? UTSW Dallas can’t see me till August 2023. I am now 106 pounds, 57 year old who 9 months ago walked 18 miles per week and swam 4 - 8 hours per week. Who in the medical community cares?

Ron, I'm so sorry to hear that Mayo Clinic wasn't able to help virtually. I did say that it was a long shot. Given your wife's situation, I didn't want to leave any possible stone unturned.

I really hope The National University Hospital in Singapore can help. And most of all, I wish you and wife strength as you continue to seek answers and that she can do so from home.

Oh gosh, @ilean. You are going through a lot. I hope you have better luck being seen at Baylor. As you can see from the long wait times and lack of appointment availability, hospitals across the nation are really strapped. If you were seeking an appointment at Mayo Clinic's Post-COVID Care Clinic, the denial is likely due to capacity limits. There is simply more demand for appointments that availability. COVID has wreaked havoc on the health care system.

You've mentioned both GI and heart issues related to post COVID. You may wish to join these discussions:
- Covid Recovery: How can I manage GI issues? https://connect.mayoclinic.org/discussion/covid-recovery-and-gi-pain
- Anyone experiencing post covid heart issues? https://connect.mayoclinic.org/discussion/post-covid-heart-issues/