About 4 months out from my mom's aplastic anemia diagnosis...

[Hopeful]

Hi mola-tecta,

In addition to calling the Cleveland Clinic, I'd call her current clinic and request a second opinion with the expert doctor. Don't say you are considering switching doctors, just say that you are seeking a second opinion from an expert in this rare disease.

I was also initially treated at a clinic where the doctors collaborated. However, in my experience, there is a difference between listening to a case and owning it. I found that doctors would not interfere with the treating doctor's protocol unless they were called in officially for a second opinion.

If you like the new doctor, ask at the appointment if they would take your mother on as a patient. If you don't like the new doctor, just continue on with the old one after the appointment.

If you get both appointment requests (Cleveland and local expert) rolling at the same time, you can always cancel one if the other works out.

Good luck - I know this is not easy!

[mola-tecta]

I haven't posted here in awhile. Things were not great for quite some months and I didn't have the energy to try and write anything. I still don't really feel like I can properly explain everything, but now that things are looking much better I can finally make an update.

The quick, dirty version is that once my mom came home from rehab, she was still very ill and fragile, and still barely able to eat. Her mobility quickly degraded again and she ended up in the hospital again. There a doctor we've seen before (who I genuinely like) was going to run some various tests on various deficiencies, start involving other practices like neurology to see what was going on, etc. Unfortunately he was off-service after a few days and the hematologist who took over dismissed all of it and said she just needs to go back to rehab.

They also tried adding medications to stimulate appetite, except they caused florid hallucinations and extreme somnolence in my mother. They first used Remeron and then when I complained about her somnolence they tried Marinol, which wasn't much better. She was sent back to rehab this way.

After only about a week and a half of her continuing to degrade and still messed up on medications, they somehow dragged her to the hematology clinic for a routine appointment and immediately sent her to the ER with blood pressure in the 80/60s, Hgb of 6, electrolytes critically low, blood sugar very low, and unable to move from bed. I had no idea they had sent her to the ER because my mother wasn't able to communicate with me and no one contacted me due to confusion between the hospital, hematology clinic and the rehab facility. I only found out the day of because I happened to be checking her online medical record to see if she had an appointment coming up and saw the notes from the ER physician pop up.

Anyway, from there a couple of doctors took over her care in the hospital and I genuinely appreciate and respect them, because they actually listened to me, took all of my concerns seriously while also doing a great deal of research and keeping me in the loop with everything. Both of them are internal medicine but they only practice with inpatient hematology/oncology. Dr. B and Dr. M, if you guys are out there you are a model of fantastic, comprehensive medical practice.

Quite a few tests were ran, including a lot of vitamin, mineral, neoplastic, infective and endocrine panels, as well as a full MRI on brain and spine, a nerve conduction study and an echo of the heart to find the cause of my mother's spiraling.

Thankfully the MRIs and other tests actually came up clean, which is very reassuring that there is no other sinister disease lurking. What did come up, and I think surprised the doctors as well as me, is quite a few vitamin and mineral deficiencies associated with severe malnutrition, the biggest worries being thiamine, zinc and copper.

Copper was surprising, and I'm sure that we have all read the heart-crushing story of Chirley here. Copper deficiency is very rare and can cause serious hematological and neurological problems. Thiamine (vitamin B1) deficiency is also called beriberi and can also cause serious neurological problems. Zinc also causes neuro problems as well as things like loss of appetite.

My mother received IV copper and thiamine for multiple days in the hospital and then was continued on oral supplements. Still unable to eat, it was agreed upon with a dietitian to start her on nasogastric tube feeds. With these, she started making quite a bit of recovery.

Once her electrolytes, blood pressure and blood sugar stabilized she was sent back to rehab again and this time has made a fantastic recovery. She was able to build a lot more strength and coordination and has fully regained her cognitive skills. She still walks with a walker (she used nothing before all of this) but has been getting PT at home and is getting stronger and stronger. Her appetite is back and she is eating far more normally.

We also FINALLY, FINALLY got rid of the levofloxacin, fluconazole, Exjade and verapamil. Her blood pressure has been perfect and her ferritin is currently in the 500s.

Most of all, as of her last hematology appointment, her Hgb was 10, ANC 6, and platelets were 156!!! This is the first time they have been a NORMAL count since long before this all started. She has also been taken off of Promacta to see how her counts will do without it.

I am really hoping that her numbers will continue to improve and stay stable. She is also finally feeling much better with no more swelling, heavy bruising and petechiae, low blood pressure or screwy electrolytes.

I don't really know the reason why things like her copper and vitamins were so depleted, the doctors were unsure of how long the deficiencies had been there, and if any of the medications she was on were seriously depleting them too. I hope that being the crazy daughter that researches everything helped point the doctors in the right direction, and they seemed to actually appreciate my input and would talk to me at length every day (how many doctors will make time to call you personally and talk for 20-30 minutes every day?)

My sad news is that my grandfather, who had been on home hospice for a surprising 16 months, passed away. In the past few months my mother had been far too weak to see him, even though she primarily took care of him before she got sick. She was, however, able to go to the funeral, and did really amazing for how much we were running around all day.

That's it for now. I am thinking of all of you and how much help you have been to me, and hope you are also doing well. Take care.

[Marlene]

Dear Mola-tecta,

I was so glad to read your update. Your mom's recovery has been one crazy journey. I can't help but feel her hematologist was a major impediment to her progress. I am glad you found two doctors who were able to work with you to uncover the underlying problems preventing her from healing. The elderly are easily dismissed especially if they don't have anyone advocating for them.

Maybe now you can take a breath and relax for a day or two.

Wishing your mom's continued healing.

Marlene

[mola-tecta]

Marlene,

Thank you so much. I'm really glad you commented and are still reading the thread. Dealing with these things can be very isolating...

I wish I knew exactly what was causing the problems for my mother that were hindering her recovery. Was it really the copper deficiency and malnutrition? If so, why was she so copper deficient? Was one of the medications causing this effect?

Most importantly, what can I do to prevent this from happening again? If it all was really related to profound malnutrition, like the hospital notes said, then there is a deep need to be vigilant about eating enough. I do agree that her hematologist became a hindrance in her recovery by ignoring a lot of her reported problems until they became too overwhelming.

In better news, as of her last appointment at the hematology clinic, her Hgb was 11, ANC 4.2, platelets 191! There is finally talk of slowly tapering down her cyclosporine and removing the PICC line she's had since July 2021. She is doing very well and is able to completely care for herself again.

It upsets me so much to think that she was allowed to spiral down so far into becoming so weak and dependent without any curiosity or desire to figure out what the problem was.

[Marlene]

Mola-tecta,

Your mom's counts look really good. I'm so happy for you both.

Regarding her nutritional status...yes, you will have to keep an eye on it. Having a baseline of her nutritional status prior to treatment could be helpful. They should have, at a minimum checked her D, B12, Folate, iron and Copper. So if you know that information, you can look at it and compare it to what they checked when she was in the hospital.

There's a good chance it's a combination of both, prior insufficiencies and then the treatment/medications. Her nutritional status could have been in the low-normal range or sub-clinical levels. A low-normal B12 serum is suspect when having blood or neurological issues. But since it's "normal" most won't look any further. Add to that, all the medications and she was bound to be nutritionally compromised.

John's nutritional status was in the dumpster too. The medications took a toll on him. They told us the antibiotics, antifungals and antivirals could cause issues and they did. And when you are in recovery, your body needs more help.

If she's eating well, I suggest follow up testing to check her nutrients to see if her current diet is sufficient. You want to get things into an optimal range and if she can do it with food/diet, even better. It usually takes a couple of month to restore things. We included supplements along with a good whole food diet. You can get nutritional testing done outside of the medical system. It's out of pocket though.

I too find it hard to believe that her doctor had no interest in working with her. It happens all too often, especially to the elderly. I guess I shouldn't be surprised though. John's recovery once we got home was on us. We got the standard, eat a balanced diet, get some exercise and give it time. While there is truth in that, it's still lacking on many levels.

Hang in there!

[mola-tecta]

I realize it has been nearly two years since I posted anything here. I know this forum is pretty dead for the most part but I wanted to give an update anyway, because reading through the past threads here was SO valuable to me. I thought an update might be encouraging to anyone that happens to find this thread.

My mom is doing great. She has been off cyclosporin for over a year and had her PICC line removed about 11 months ago. The only medications she is on right now are metoprolol, a small dose of atorvastatin, and a multivitamin.

Her hematologist has graduated her to being seen every 6 months now - and her last bloodwork 2/26/24 was Hgb 15 (!!), WBC 7, Platelets 174. All other blood tests were within normal values. She has been able to return to doing all daily life activities without much trouble, and no longer needs a walker. She was even cleared to start driving again!

Last year she needed to have her gallbladder removed due to sudden excruciating pain. I wondered if her medications had impaired the gallbladder at all, surgeon said it was possible but there is no confirmation. The surgery was intended to be laparoscopic but ended with it being open due to a nicked bile duct.

I was concerned at the time about the trauma of surgery causing a relapse, and of course post-surgery her blood values dropped, but they returned to normal within a month's time. The incision healed well and she hasn't had any issues with it since.

I am very thankful for the support here, the doctor who listened to me in the hospital that something wasn't adding up, the dietician who advocated for the NG tube feeding, the physical therapists, the hematology nurses, and to everyone out there who has donated blood and platelets.

My takeaway to anyone reading this thread - it's okay to ask questions about treatment efficacy, it's important to have a doctor who you feel listens to you and provides answers or is willing to find an answer for you. It's also very important to be able to advocate for yourself or to have someone you trust be able to advocate for you. Being able to accurately describe symptoms and their onset, duration, and physical effect is also probably the most important thing to learn when speaking with doctors. Learning more about the way doctors approach and evaluate problems really changed how I thought about medical care.

Best wishes to all of you going forward.

[Marlene]

I'm so glad your mom made it through all that chaos and things are looking better. You both were put through alot.

Thanks for sharing an update and hope things continue on an upward path.

Marlene

[Hopeful]

Thank you for sharing the wonderful news about your mother!
Wishing her continued good health!