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

[mola-tecta]

My mother's blood numbers are looking great to day - Hgb 10.2, platelets 69, WBC are great. Creatinine went down to normal and eGFR is up. Liver numbers are okay too.

But the past few days she has been having a LOT of intense nausea, worse than before, enough to vomit and have trouble keeping things down. Today they tried giving her IV zofran and compazine but she is still feeling bad, so they are admitting her to the hospital for further testing and making sure she gets IV fluids and such.

I'm kind of beside myself right now, I don't know what to do. On one hand, it's good that she is being admitted so they can maintain fluids and nutrients, on the other hand they don't know why this is happening. Her temp is normal, other vitals are normal, no pain just the usual fatigue. I hope they figure something out.

While her WBC numbers look great normally, they actually jumped quite a bit from Monday's blood draw - ANC from 2.3 to 4, WBC from 4.8 to 6.1. Maybe this means a possible infection?

[Matthew42]

Originally Posted by mola-tecta

My mother's blood numbers are looking great to day - Hgb 10.2, platelets 69, WBC are great. Creatinine went down to normal and eGFR is up. Liver numbers are okay too.

But the past few days she has been having a LOT of intense nausea, worse than before, enough to vomit and have trouble keeping things down. Today they tried giving her IV zofran and compazine but she is still feeling bad, so they are admitting her to the hospital for further testing and making sure she gets IV fluids and such.

I'm kind of beside myself right now, I don't know what to do. On one hand, it's good that she is being admitted so they can maintain fluids and nutrients, on the other hand they don't know why this is happening. Her temp is normal, other vitals are normal, no pain just the usual fatigue. I hope they figure something out.

While her WBC numbers look great normally, they actually jumped quite a bit from Monday's blood draw - ANC from 2.3 to 4, WBC from 4.8 to 6.1. Maybe this means a possible infection?

Your mother's numbers are fantastic.

It seems that she does have an infection because of the big increases in ANC and WBC. But it's hard to say.

I hope that they get to the bottom of this. She'll be fine.

Please take care of yourself.

[Marlene]

Mola-tecta,

Make sure they check for a UTI. Urinary tract infections can be present without any of the typical bladder symptoms especially in the elderly.

Glad her system is responding.

[Shroob]

Mola-tecta,

Wanted to post a reply and let you know I?ve been keeping a watch on this thread and hoping the best for you and your mom. Everything will be okay. Keep us updated.

[mola-tecta]

Thank you all. My mother has been out of the hospital for a few days but I don't think they really did her any favors.

After a massive number of tests including a CT scan, stool and urine testing, etc their conclusion was that the nausea/vomiting was caused by some potassium pills that the clinic had been giving her. For a couple of months her potassium levels were slightly low so they would give her oral supplements, but apparently they can really tear up your stomach. She feels better and is able to keep things down now but can't eat very much.

I'm confused about the blood counts thing though. Before going into the hospital, my mother's hemoglobin was 10-something, platelets around 60+. The next day in the hospital they were 8.7 and 40+? At one point hgb dropped to 7.5 so she was given blood. Upon leaving the hospital her hgb was 8.1, platelets 44.

However the next day at the hematology clinic, hgb was 9.5 and platelets 65??

I can only think that maybe this is hemodilution? They were giving her tons of fluids in the hospital - saline, lactated ringers, IV potassium and magnesium, etc. They also didn't draw as much waste blood from my mom's PICC line when pulling labs.

They gave her a lot of electrolytes via IV and I'm worried she isn't getting enough on her own which was causing some heart issues in the hospital that became their new interest. They started her on a new medication (verapamil) that seems to be giving her some wicked side effects like swollen legs, which has made it very difficult for her to walk and a lot of fatigue which also makes things much more difficult.

Overall she seems worse off than before she went into the hospital...

I'm still just losing my mind right now. I don't know what to do or how to fix things. At least we have PT home visits coming. I hope they help. I hope stopping the new medication will help. I don't know how to get my mom to eat enough when she says she has no appetite. Maybe we should ask to start a small dose of Prednisone again to help with appetite? She can't stand the taste of Ensure, I found that she will tolerate Soylent but only small amounts at a time...

I'm so lost. It feels so unfair that my mother's blood counts are finally, finally improving quite a bit (no platelets in two months!) But she is feeling even worse. What do I do??

[Hopeful]

Hi mola-tecta,

It looks like verapamil is used for the treatment of high blood pressure. I have friends who take blood pressure medicines and know that they went through a lot of trial-and-error with different types/brands to find the one with the least side-effects. Hopefully, her regular doctor will re-evaluate whether verapamil is the right medication for her.

I wouldn't take prednisone as an appetite stimulant. Is she still taking Exjade? Could the dosing be too high for her now lower weight?

When I had trouble eating, I had no desire for things that were sweet. You could try blending these drinks with ice, avocado, and/or milk to make them less sweet. Will she eat regular bland foods?

Hope you get to her regular doctor soon!

[Marlene]

Mola-tecta,

I can understand your frustration. Give her some time to for things to settle down and her body to recover.

John couldn't drink Ensure either. We've used Orgain in the past. Not as sweet as Ensure. Also, she may be able to tolerate it better by drinking through a straw.There are a lot of protein powders out there you can try. You can make your own shakes with it. Lots of trial and error though. For a while, John could only drink Auqafina bottled water. And Seagrams ginger ale. Any other brands just made him nauseated.

They tried to have John take those nasty Potassium pill. Too big and hard on the stomach. V8 juice or other vegetable juice will have as much, and more, potassium as the pill. There are fruit juices with a good portion of Potassium also.

Also look into electrolyte drinks. Most are too sweet too but you can mix them with a tart juice and sip on it throughout the day. Pedialyte might be a good option for her.

I echo Hopeful's concern regarding the Exjade. She may need to stop it until her stomach feels better and start back up on lower dose. John was always stopping and starting it. He could take it for about 3-4 weeks, and then would need to stop until his stomach felt better.

Hang in there....M

[mola-tecta]

Hopeful and Marlene, thank you both so much for the response. I appreciate it more than you know.

They started the verapamil because in the hospital her heart rate was being erratic, especially moving from laying to standing and walking. The cardiologists said it's not afib thankfully but something called multifocal atrial tachycardia. My research and what the hospitalist explained is that it's an irregular rhythm most often seen in people with COPD but can also present from electrolyte imbalances, anemia, etc. She has no symptoms from it, no trouble breathing or coughing.

They replaced a lot of electrolytes in the hospital which did seem to make it better but then decided to add the verapamil. My mom is now very worried about taking it and making the swelling worse. We have to call the cardiologist for follow-up but I'm also worried they are going to want to drag her into the office before doing anything.

Today the worst happened, my mother fell while trying to get into the car to go the clinic. It was due to leg weakness and the swelling making it difficult, plus it decided to snow today of all days. She is okay, I was holding onto her but due to her slippery coat she kind of just slid out of my hold and onto the ground. I'm so glad she is okay though, it wasn't a hard fall. I'm worried about the future clinic visits though.

She hasn't been taking the exjade in awhile now. She is pretty hardheaded and stopped because it was also making her sick. Thankfully her ferritin had gone down quite a bit. I actually even found a great article that Promacta is a decent iron chelator. Her ferritin was down to about 1400 last time they checked.

I'm trying to get as much nutrition into her as I can but it's very hard. I did get some protein powder and lots of bananas, frozen fruits and other stuff to make smoothies. She has been tolerating Soylent drinks (the chocolate ones taste a lot better than Ensure) and a lot of broths and some soft foods and juices. I did also get some Pedialyte sport drink powder because it's the only one I found that has a full range of electrolytes instead of just sodium and sugar.

It seems she can only tolerate so much volume though, and is struggling with lack of appetite.

It just feels so unfair, because her blood numbers today were also great. Hgb of 9.9 and platelets of 82!!! But why is she feeling so terrible? I can only think it's because she just hasn't been getting the right support and has just been circling the drain a bit with not eating making the nausea worse, not getting enough movement making her weaker, etc besides all the awful side effects of the medications.

They tried to cut down a few medications in the hospital like the levofloxacin but her hematologist was ADAMANT that it be reintroduced. I had hoped they could reduce the pill burden for her somewhat but instead they added one!

Thanks for letting me ramble here, trying to get my thoughts together.

[Shroob]

mola-tecta,

Ramble on, we're all here for you. Apologies I can't offer more support in ways of knowledge (you are obviously a lot more versed in this than I am), but here to listen and offer comfort.

I'm really sorry to hear about the fall, I can imagine that being very worrisome with all she is experiencing. 82 seems so great for the platelets, though, along with other good results with the blood counts! She is very lucky to have you there with her. Just keep doing what you're doing, you are helping her more than you know.

[Marlene]

Mola-Tecta,

You are very much on top of things and helping your mom way more than you realize.

Like you, I'm surprised to see they still have her on levofloxacin. What's the criteria for taking her off it?

It wasn't until John was off all the "anti" drugs that his nausea started to resolve. Even then, it didn't take much to upset it. He too had to do smaller amounts.

Seems like each day brings a new challenge and it's exhausting. Stay strong...M

[Matthew42]

Today was a day of highs and lows: my mother's blood rose up to 8.4 from 7.5. She will have gone close to three weeks without blood now. Very excited! But, I found out her neutrophils went down to 200, which has never been the case in all these months she's had aplastic anemia (platelets are still very low, as usual). I am not sure what is going on, as her neutrophils were averaging 1000 for 4 months with a steady drop down to 500-600 (for a month). Nothing else to report! Not sure what is going on. Everything is normal in her blood report.

The only comfort I have is that is just a one-time reading. The doctor isn't that concerned unless they remain under 300 or so for weeks. Who knows? Hopefully, they'll go back up to 500 by next week. Her doctor also said that 500 and over is okay, provided other aspects of the immune system are working well. There is more to the immune system than just neutrophils.

All so bizarre...

[Matthew42]

My mother ended up getting 2 units of blood today. 10 days after a transfusion, she had a big rise in blood and then a few days later, she crashed down to 6.0. The hematologist doesn't have any answers, other than she does believe the bone marrow "gets turned on" (good thing), and then decides to suddenly turn off. She said the natural rises are good, but they are not holding. 6 weeks ago, my mother's blood held for almost 3 weeks between 7.5 and 7.7. The doctor thought things were looking bright and then she crashed again. She said the illness is a mystery and no two aplastic anemics are alike. We will just continue to wait, but she did say that unpredictability is a good thing because it means that the disease has not taken a definite course, even at a 1 year post ATG. I guess that makes sense. We were also told that any natural rise in platelets is very likely to signify recovery, even though that has never happened (even once).

My mother's neutrophils were at 900-1200 for about 4 months.. Now, they are averaging about 400. Again, the hematologist is baffled by the yo-yo'nish of her blood and neutrophils (platelets are always the same, however) She said it's still a waiting game. But if things don't improve in the next 4 months or so, my mother is going to do Campath, which is what Dr. Young has recommended. He says that is the best bet for her to make a recovery. But he still believes my mother should wait for several more months to see if horse-atg kicks in somehow. He's seen a few cases where it takes up to two years to get off transfusions on atg, although mainly in older people. We just keep on going.......

[Neil Cuadra]

Originally Posted by Matthew42

The hematologist doesn't have any answers, other than she does believe the bone marrow "gets turned on" (good thing), and then decides to suddenly turn off.

"I don't know" might have been a better answer than this semi-explanation. I don't think bone marrow "decides" anything. It's a biological process, admittedly very complicated, but there must be undiscovered factors that are causing these roller-coaster changes.

With all the past patient experiences and collected knowledge about aplastic anemia, it must be so frustrating to have so little idea of what's going on with your mother's blood counts!

[Matthew42]

Originally Posted by Neil Cuadra

"I don't know" might have been a better answer than this semi-explanation. I don't think bone marrow "decides" anything. It's a biological process, admittedly very complicated, but there must be undiscovered factors that are causing these roller-coaster changes.

With all the past patient experiences and collected knowledge about aplastic anemia, it must be so frustrating to have so little idea of what's going on with your mother's blood counts!

Thank you for responding. That is very kind of you.

You're right, Neil: I think the doctor meant that the immune system backs off a bit and then starts up its attack suddenly. I don't know, either. LOL. She is not an expert in the disease. She consults with Dr. Young to get info on further treatment.

My mother's counts are very, very mysterious. "Roller Coaster" changes is really an understatement here. In fact, her hemoglobin shot up to 12.8 from 7.8 and crashed down to 7.7 in 5 days. The nurse thought the rise in hemoglobin was a lab mistake, but the RBC amount was 4.2, so the doctor says it was indeed her real hemoglobin level. Highly unlikely of it being a lab error when hemoglobin and RBC match. What is even more mysterious is that her neutrophils went down to 200 when her blood went up to 12.8! My mother's doctor just is more than baffled, but really everything is just "I don't know really." But do know that her platelets have never shown any improvement (no rises or swings).

We're just going to wait a few more months or so.

Also, Dr. Brodsky from John Hopkins thinks that Campath might not be the route to go if things don't improve. He recommends high-dose Cytoxan, and believes that it has the highest chance of getting her over the anemia. He says he has had great success with this drug in patients with refractory/relapsing SAA. We might go with this doctor, too. , even though Dr. Young recommends Campath. Dr. Brodsky is a big fan of high-dose Cytoxan, if you read about him.

It's an emotional roller coaster for me. I don't know what to think anymore. She has been getting less blood these past few months because of the big rises (she holds longer), but it makes me very nervous as there is no stability. It's just all so bizarre.

[Hopeful]

Hi Matthew,

I remember that my hematologist what occasionally do a manual count to confirm the numbers. They also would view a sample of my blood under the microscope to look for changes. You may want to request this at your mom's next appointment, if they aren't doing it already.

Does your mom feel amazing after her blood transfusions? Going from a hemoglobin of 7 to 12 is big, and she would feel the difference.

I use to be able to tell when my hemoglobin was below 10 with a simple test: look up at the ceiling and then look straight ahead. If this made me dizzy, I was below 10. It was uncanningly accurate for me.

Just some random thoughts.

[Matthew42]

Originally Posted by Hopeful

Hi Matthew,

I remember that my hematologist what occasionally do a manual count to confirm the numbers. They also would view a sample of my blood under the microscope to look for changes. You may want to request this at your mom's next appointment, if they aren't doing it already.

Does your mom feel amazing after her blood transfusions? Going from a hemoglobin of 7 to 12 is big, and she would feel the difference.

I use to be able to tell when my hemoglobin was below 10 with a simple test: look up at the ceiling and then look straight ahead. If this made me dizzy, I was below 10. It was uncanningly accurate for me.

Just some random thoughts.

Hi Hopeful! Nice to hear from you. How are you?

Yes, my mother did have way more energy the day her hemoglobin jumped up to 12. But it was all short-lived (just a day or two).

As I said before, it's all so bizarre, these "roller coaster" numbers (except for platelets).

Please take good care.

Bye!

[mola-tecta]

I haven't updated in awhile, things had just gotten very overwhelming for me and I couldn't even think clearly.

To sum up, my mother wasn't getting any better at home even with home PT and was still refusing food, etc and extremely weak, barely even able to make it to the twice weekly clinic appointments without immense effort. She was extremely dependent on me for everything. I don't think I slept for more than 20 minutes at a time for a week.

After another fall at home, I made her go to the ER. From there the ER doc made sure to check for any acute problem like breaks or fractures, and was ready to send her back home since she had no immediate issue. I somehow must have gotten my fears of her condition through to him and he contacted the case worker who was able to get my mother checked into a rehabilitation facility.

So far this seems to have been a very good idea. They are keeping her well cared for, taking care of food, medication etc while she is receiving PT and OT 2 to 3 times a day. They will even do the twice weekly bloodwork (I don't think they are very good at it though, they seem to be intimidated by her PICC line) and arrange for transport to the hematology clinic as needed. In a week she has made some good progress in getting stronger but is still probably a good 3-4 weeks out from being able to go home.

Food for her is still an issue. Some of the nausea has abated but she still has absolutely no appetite and is extremely sensitive to food tastes and textures, some of them even make her immediately gag and throw up. Speech therapy has been with her as well but I am not sure if there is any structural problem causing this or more of a taste, texture psychological one. She even gags on the pills sometimes. Exhaustion seems to make it much worse.

The hematologist has been absolutely no help in this... no help in trying to fix the lack of appetite or reduce the pill burden. The only one he was willing to go down on... was the Promacta??? I have no answers as to why she is still taking B12 and folic acid despite the blood levels being off the charts high. Nor do I have any answer as to why she is still on levofloxacin or fluconazole still.

He keeps harping on her to get a PCP, which isn't a bad idea, but what is a PCP even going to do when no other doctors have been willing to change my mother's medications because of him? The doctors in the hospital were aghast she had been on levofloxacin for 9 months and tried to cut it out but the hematologist adamantly refused and they followed because it's "his protocol".

The verapamil seems to still be causing swelling and other issues but no one is willing to touch it without her seeing the cardiologist, and god knows how long that might take.

I guess... the good news is her blood numbers are still staying mostly steady? She was given a COVID booster which seems to have dipped the numbers very slightly, but her Hgb is still 9.5, platelets 68, ANC 3.4, retics at 3%. Creatinine and eGFR still fluctuate but are better than they were.

I am really hoping the time at the rehab facility will help my mom. She seems to be doing better than she thinks she is, and is able to push a tiny bit further every day. The eating issue is really messing things up.

I'm exhausted, frustrated, confused and still frightened while trying to balance a sense of hope for improvement. The anxiety is eating me alive every single day hoping she will try to eat a little more, try to drink a little more, hope she doesn't gag taking her pills and throw them all up, hoping the PT/OT won't exhaust her so much she'll refuse to eat, etc...

[Marlene]

It's disheartening to hear this. The lack of compassion from your hematologist is inexcusable. Quality of life needs to be considered. What good is it to keep her on prophylactic meds to prevent something that may happen when she has problems that need to be addressed now. A PCP may be able to negotiate with him around the meds. Protocols can be modified. If it's causing more harm than good, then something needs to change. The problem with specialist is that many are very narrowly focused and are only concerned with their piece of the puzzle. I hope you can find a PCP willing to take on your mom's case and advocate for her.

[Matthew42]

I am sorry to hear this, mola-tecta. She will get stronger in the weeks to come. The main is for her appetite to return.

Yes, it is a hard to find a PCP: no one wants to treat my mother, either. She has to really on her hematologist for everything. But, thankfully, the only medication she's on is prescribed by said doctor (2 medicines).

Your mother's levels are fantastic, though, at this stage. Congratulations! Keep your head up. May this path upwards continue for her.

My mother is not doing so well, but we just keep forging ahead every day. She is getting wild swings in blood levels (big rises and then big drops), but no one knows why. No purpose in asking anymore. Her platelets are always the same. And her neutrophils used to be 1000 or above, but now they're back at 500 (sometimes less). The hematologist told us last time that there is a lot more to the immune system than just neutrophils. I just don't want them to go and stay under 300.

We just watch and continue to wait. We were told that she did respond to immuno-suppressant therapy because of her neutrophils rising to over 1000 for a several months, as well as the increased cellularity in her bone marrow. So, ATG was not all in vain at this stage. The wild swings in blood, again, are a mystery. But if nothing were working, her blood would only continue to drop a few days after a transfusion -- it surely wouldn't rise 9 days or so after a transfusion (natural rise). Who knows? LOL. Strangely, two months ago, her blood held for 3 weeks at 7.7. Go figure!

All the best.

Take good care of yourself.

[mola-tecta]

Just offering an update. My mother is progressing well in rehab, pushing a little further every day. They will probably keep her through next week, hopefully. I want her to be at least somewhat close to where she was before she went into the hospital in terms of independence.

One thing I am not sure I ever mentioned was that at my mother's first clinic appointment after being hospitalized for ATG treatment, we met another patient there who had aplastic anemia. It was interesting, she had heard the nurse mention HLA-matched platelets to my mother and came to talk to us. (Is platelet refractoriness more common in AA than other blood disorders or cancer? Hmmm ) We exchanged phone numbers but didn't really follow up with each other any more.

However I was feeling kind of hopeless about things so I finally reached out and we had a nice conversation. I asked about who her hematologist was at the clinic and if they liked them or not. I also asked about what kind of treatment they got, including the supportive care side.

Turns out the hematologist is one that was also recommended to me by the AAMDSIF when I emailed them about more AA specialists in the area. He seems to be well liked. She got the same treatment at base that my mother did but she was not kept on steroids for 6+ months, nor was she kept on antimicrobials.

I spoke to my mother about this, urging her that this might be a good time to consider switching physicians. After all, her current hematologist seems to kind of be "done" with her. I don't know if he is just swamped with other patients, or if there is some kind of critical disconnect going on but he just doesn't seem as interested anymore and is a lot more rude. Maybe he considers my mother non-compliant just because she has had a great deal of trouble with side effects?

In any case, my mother said she would think on it but wasn't ready to try and change doctors, especially within the same practice. I know for her "not ready" means "this is frightening and I don't want to deal with it." I suppose she expects that there might be some kind of blowback due to switching doctors within a practice. I don't have any clue on that but there isn't much more I can do but hope she comes around.

I tried calling the main nurse for the hematologist to see if I could ask a few questions but she hasn't gotten back to me. Phrasing is difficult but I wanted to try and ask: first what his "protocol" is, especially with maintaining prophylactic antibiotics when someone is no longer neutropenic. (most research I've found advises no further prophylaxis is needed once ANC > 0.5 or 1. )

Second I wanted to ask, in the most neutral language I could muster, if she had any tips on how to better communicate things with the hematologist and his PA. Because right now the flow goes: my mom talks to the PA about issues > PA talks and writes notes and then steps out to speak with the doctor > doctor comes in and scolds my mother?? For what I assume is either thinking she is non-compliant or asking him to fix non-hematologic problems (when the problems themselves are caused by side effects of the medications he prescribes?)

It's driving me crazy that there seems to be some kind of disconnect here.

This... turned out a lot longer than I expected, there's just such a jumble of thoughts in my head but there's no action I can take to do anything about anything.

[Matthew42]

Originally Posted by mola-tecta

Just offering an update. My mother is progressing well in rehab, pushing a little further every day. They will probably keep her through next week, hopefully. I want her to be at least somewhat close to where she was before she went into the hospital in terms of independence.

One thing I am not sure I ever mentioned was that at my mother's first clinic appointment after being hospitalized for ATG treatment, we met another patient there who had aplastic anemia. It was interesting, she had heard the nurse mention HLA-matched platelets to my mother and came to talk to us. (Is platelet refractoriness more common in AA than other blood disorders or cancer? Hmmm ) We exchanged phone numbers but didn't really follow up with each other any more.

However I was feeling kind of hopeless about things so I finally reached out and we had a nice conversation. I asked about who her hematologist was at the clinic and if they liked them or not. I also asked about what kind of treatment they got, including the supportive care side.

Turns out the hematologist is one that was also recommended to me by the AAMDSIF when I emailed them about more AA specialists in the area. He seems to be well liked. She got the same treatment at base that my mother did but she was not kept on steroids for 6+ months, nor was she kept on antimicrobials.

I spoke to my mother about this, urging her that this might be a good time to consider switching physicians. After all, her current hematologist seems to kind of be "done" with her. I don't know if he is just swamped with other patients, or if there is some kind of critical disconnect going on but he just doesn't seem as interested anymore and is a lot more rude. Maybe he considers my mother non-compliant just because she has had a great deal of trouble with side effects?

In any case, my mother said she would think on it but wasn't ready to try and change doctors, especially within the same practice. I know for her "not ready" means "this is frightening and I don't want to deal with it." I suppose she expects that there might be some kind of blowback due to switching doctors within a practice. I don't have any clue on that but there isn't much more I can do but hope she comes around.

I tried calling the main nurse for the hematologist to see if I could ask a few questions but she hasn't gotten back to me. Phrasing is difficult but I wanted to try and ask: first what his "protocol" is, especially with maintaining prophylactic antibiotics when someone is no longer neutropenic. (most research I've found advises no further prophylaxis is needed once ANC > 0.5 or 1. )

Second I wanted to ask, in the most neutral language I could muster, if she had any tips on how to better communicate things with the hematologist and his PA. Because right now the flow goes: my mom talks to the PA about issues > PA talks and writes notes and then steps out to speak with the doctor > doctor comes in and scolds my mother?? For what I assume is either thinking she is non-compliant or asking him to fix non-hematologic problems (when the problems themselves are caused by side effects of the medications he prescribes?)

It's driving me crazy that there seems to be some kind of disconnect here.

This... turned out a lot longer than I expected, there's just such a jumble of thoughts in my head but there's no action I can take to do anything about anything.

That's the feeling I get: there is nothing I can do about anything. LOL

I am so happy for your mother in recovering from AA. Congratulations!
As far as changing doctors goes, I think it's about time for her to do so. Your mother should never be scolded by a doctor. WHAT????

My mother's hematologist is not good, either. She's not rude, but gives very little information. She did consult with Dr. Young about what treatment to give her if things don't improve (he recommended Campath).

My mother's neutrophils dropped down to 100 and then back up to 300-400. She was over 1000 for 5 months. Even last summer, she averaged 600-700. I don't know what is happening. No purpose of asking any more questions. I'd just like them at 500 or above, on average. The research says that averaging under 200 is when very dangerous infections *can* settle in.

There are two men I know who have severe benign neutropenia: one man's neutrophils have been averaging 300-400 for the past 6 years; the other has his neutrophils fluctuate between 0-400 for 7-8 years. Neither has gotten an infection. Hard to believe. One got a little infected sore on his lip, but that's it. Anyways, they went on to say that there is more to the immune system than just neutrophils. If other aspects of your immune system are working well, that does help. As we know, people can have what appears as a very normal immune system and die from an infection.

They told me that my mother averaging 300-500 just really increases her risk of bacterial infections that can be somewhat easily treated (urinary, skin, etc.). The longer you go with low neutrophils without an infection shows a stronger resistance of the body to getting infections.

It is what it is. I can't change anything. My mother is currently fine, except she is still transfusion-dependent with even lower neutrophils. I am still grateful. She is not worried about her condition. It is I who is. LOL.


Please take good care of yourself and your mother.

[Hopeful]

Originally Posted by mola-tecta

Just offering an update. My mother is progressing well in rehab, pushing a little further every day. They will probably keep her through next week, hopefully. I want her to be at least somewhat close to where she was before she went into the hospital in terms of independence.

One thing I am not sure I ever mentioned was that at my mother's first clinic appointment after being hospitalized for ATG treatment, we met another patient there who had aplastic anemia. It was interesting, she had heard the nurse mention HLA-matched platelets to my mother and came to talk to us. (Is platelet refractoriness more common in AA than other blood disorders or cancer? Hmmm ) We exchanged phone numbers but didn't really follow up with each other any more.

However I was feeling kind of hopeless about things so I finally reached out and we had a nice conversation. I asked about who her hematologist was at the clinic and if they liked them or not. I also asked about what kind of treatment they got, including the supportive care side.

Turns out the hematologist is one that was also recommended to me by the AAMDSIF when I emailed them about more AA specialists in the area. He seems to be well liked. She got the same treatment at base that my mother did but she was not kept on steroids for 6+ months, nor was she kept on antimicrobials.

Hi Mola-tecta,
I would call the clinic and ask for an appointment with the recommended AA specialist at the clinic. Consider it a second opinion.

I have switched between doctor's within the same clinic. There are no issues with doing this. The new doctor will take up her case and treat her as if she were a new patient. It is likely that you will be happy, and your mom will be happy. The old doctor won't be notified that you are switching. Maybe they'll remember a few months from now that they haven't seen your mom in awhile, but that can happen for a variety of reasons. If they are not an AA specialist, they may be relieved that she is under another person's care.

Consider your talk with the other AA patient as a sign to make a change!

[Marlene]

Mola-tecta,

Your post brought back a memory from our experience early on during diagnosis. I think you may be on to something regarding the communications getting lost in translation between your mom, the PA and the doctor. You never know how the PA is relating the information. They may be adding in their own spin on things.

John's first BMB was inconclusive so a second on was scheduled with sedation. The doctor told us he suspected SAA and if so, he would refer John to either NIH or Hopkins. On the day of the second biopsy, we asked the nurse if NIH/Hopkins would do another biopsy and if so, do we really need to proceed with this one. She stepped out to speak with the doctor and when he came in he was not happy. He said " I understand you want a second opinion". She completely miscommunicated our conversation to him. After clarifying what we were asking, he understood our concern and said yes they will want another biopsy and it didn't make sense to one now.

Your insights may be spot on regarding the PA.

I hope you can encourage your mom to switch doctors. I too would be worried about keeping her on the antibiotics for so long. It can take months for the digestive system to recover.

[mola-tecta]

On Friday I spent awhile on the phone with the nurse to try and answer some questions. She was no help in knowing what the protocols are for giving antimicrobials, other than she said it's not uncommon in the practice to be given them long-term. I don't know how to feel about it.

For my second question, I asked about communication issues. The answer was... somewhat not helpful for anything actionable but at least gave me a much better idea as to how the doctor and clinic are reacting to my mother when she complains about side effects or symptoms, and why they keep trying to pass it off to a PCP.

To them, a complaint of a symptom, even if it's not new, must be worked up as an entirely new problem and evaluated from scratch to make sure there is no new disease process going on. Other things must be ruled out before they assume it is due to a medication side effect, I guess. While this makes sense, I don't know if I fully agree with it, but it might be because I am around my mother a lot more and am way more familiar with her symptoms and complaints, so I know a lot of them aren't new, they have been there for many months, but have never gotten better or had something else exacerbate them.

As an example, I talked about my mother being in the hospital and getting a very thorough workup from GI for her stomach trouble. They did not find any evidence for a new acute disease process and it was their opinion that the potassium pills they had been giving her in the clinic were causing the problem. However, my mother has been having stomach issues for awhile now, and I think the potassium pills just exacerbated the problem into an uncontrolled one. In my logic, she was cleared of any new disease processes and therefore the symptoms are likely caused by the medications. The nurse didn't have anything to say on this or have any suggestions for help, that's just how they approach things. I suppose the best my mother could do would be to try and talk about the symptoms as closely related to the medications as possible.

I also called the main line for the heme/onc clinic and tried to give no details while simply asking if seeing another provider in the same clinic was possible. At first they told me no, because all of the providers in the clinic are supposed to be a collaborative practice where they all talk to each other about the cases. (Hmmm.) However I mentioned my mother having a rare non-malignant disease and that another provider was suggested to have more experience. The nurse on the phone somewhat acquiesced to this and that you can just call to ask to see a different provider for the next appointment.

Okay. But my mother is the problem here too - she does not want to deal with the potential anxieties and fallout for switching physicians in the same clinic. It doesn't matter how much I think it might help, or how much my mother is sick of dealing with her current hematologist, the idea of change is too frightening to her.

She would be more open to other clinics if there were any. I found there used to be a benign hematology section of the hematology clinic which moved to another building; I spent a lot of time trying to get ahold of them to talk to *someone* about if any clinicians there treat aplastic anemia. I've had no luck with it so far! Phone trees that give 0 options to actually speak to someone are garbage. They don't seem to actually have a front desk of any sort to speak to.

My last option is to see if the Cleveland Clinic would take on my mom as a sort of virtual patient - but I have no idea how that would work too if she needs to have bloodwork done.

My mother is supposed to come home from rehab this week. I am happy for her to be able to go home but there is a deep pit of anxiety inside that is telling me things are just going to get bad again unless something changes. And there isn't much I can do to force the changes, I just have to hope my mother will allow change to happen.

Please wish me luck, I'm sick with anxiety over all the possibilities and the fear that nothing is going to change and everything will happen all over again...

[Marlene]

It?s so frustrating to navigate all of this. Your anxiety is shared and understood by all of us. I would suggest taking a leap and call the Cleveland Clinic for a consult. Getting lab work done, depending on what they want, can be done. And that can be worked out after the consult. I would think you should be able to share her medical records and past lab result electronically. If the clinic takes you on, then you have the option to switch to another local practice since the need for AA experience would not be as crucial.

When John got sick, his hematologist had never cared for anyone with SAA. But Hopkins did. His treatment was done at Hopkins with 3 month follow ups the first year. His local Hematologist handled the day to day issues and consulted with Hopkin as needed. This arrangement went on for years.


Marlene