Hematologist Dr For Anemia: What To Expect

[PrimeTimer]

What can a person with anemia expect at their first appointment with a Hematologist? Another Tiger tube draw? Do Hematologists administer blood transfusions in their office or must that always be done in a hospital?

[Cupcake]

Unusual for hematologist to transfuse in the office- most would refer you to an outpatient infusion clinic or where people go to get chemo. But unlikely they would transfuse someone unless hemodynamically unstable. Are you on iron or epogen?  Their goal would be to decide if a patients anemia is from chronic renal failure or something else.

[PrimeTimer]

Unusual for hematologist to transfuse in the office- most would refer you to an outpatient infusion clinic or where people go to get chemo. But unlikely they would transfuse someone unless hemodynamically unstable. Are you on iron or epogen?  Their goal would be to decide if a patients anemia is from chronic renal failure or something else.

The hematologist is at an oncology center. Hubby gets EPO and Iron at dialysis. He doesn't want one but if a transfusion is needed, he is hoping they can perform it at the hematologist and not have to go to the hospital. We think we know why he got anemic...his fistula had been leaking a lot during dialysis so went to see the vascular surgeon and had another angioplasty done -no more blood leaks from needle sites. He had asked the nurses to get him an appt for the vascular surgeon but it was only until he could speak to his neph that they took him seriously. A leaking fistula is usually the signal to have an angioplasty (at least for my husband it is). Unfortunately, by the time they decided to act on it, his hemoglobin is down 6.9 so his neph is sending him to the hematologist. No bleeding elsewhere, was just a leaky fistula and weekly blood draws. Vampires!

[Simon Dog]

Remain cognizant as to the import of alloimmunization, and be sure to discuss this issue with your hematologist if you are considering a transplant in the future.

[PrimeTimer]

Hubby's Hemoglobin went back up to 7.4 but 2 days later it's back down to 6.9. No blood leaks that we know of. So he is going for a blood transfusion at the ER tomorrow after dialysis. The nurse will be arranging it and the hospital will be ready for him. We hope. And hopefully he can come right home afterwards and rest. Can take several hours but may not necessarily have to stay overnite.

As for the Hematologist his Neph wants him to see....Beware, Hematologists are specialists and to see a specialist it can take 2-3 weeks to get in. But what the heck explains not being able to even speak to a human to make an appt? Actually, WE are able to speak to a human but apparently the Hemotologist staff is NOT. We've called and called begging but no one returns our calls. And a person with anemia may not have 3 weeks to spare. What a load of crap. And this part of not being able to speak to a human only adds to the simmering heap of crappola.    BTW, use your imagination but that is not a cookie. If hubby gets any worse my griping about it will reproduce at the rate a rabbit does. They will need to say their prayers  and beg for mercy! 

[PrimeTimer]

Good news/bad news. First the good...the hospital tested him and said his Hemoglobin is at 8.2 so no blood transfusion. The EPO must be kicking in. The bad news: he has pneumonia. Just a little. Was just a chest cold earlier in the week (so the clinic said). The hospital loaded him up on antibiotics thru an IV and sent him home with 2 prescription antibiotics. At least he gets to rest in his own bed and not at the hospital. Made sure he ate a good dinner and off to bed he went. Something weird tho, I noticed after we left the hospital that his lips were yellow. Not his eyes or skin, just the lips. Asked him if ate/drank anything at the hospital that may explain that but he says he didn't. And I believe him. But how weird. Anyhow, normal lip color has returned. He's resting but my day isn't done yet. Gotta go do laundry now. Want to wash the clothes he wore to the hospital. Call me paranoid but with all the flu going around those places are a germ fest. If I thought we could afford it I'd probably put his clothes in an incinerator. lol...juust kidding. I'm not THAT paranoid. But still going to wash them in hot water.

As for the Hematologist I am going to leave another message on Monday, asking them if they can recommend someone else that can return calls. No I suppose that won't score me any points but what the heck, might feel good doing it.

[Charlie B53]

Good point about doing laundry after any hospital visits.  That should maybe include even visiting, same for Dr waiting rooms.  I noticed a Lady the other day in Wife's Dr's waiting room.  She had the clip board with papers to fill out, took a pen from the cup, went straight to the hand sanitizer and wiped the pen and clip board then her hands.  I thought it strange at first then that it actually was a great idea as who knows what bugs may have been deposited on those things from prior patients handling them?


Many of the local grocery stores have hand sanitizer next to the shopping carts to wipe the handles.  Not enough people use it.

Renal Vitamins and a Vitamin C supplement aren't a bad idea.  I think both very helpful in keeping me as well as I am.  That and a certain amount of daily exposure to the elements helps build, or contribute to a reasonable resistance to things.  At least I Hope so!

Aren't certain trace minerals also important in bone marrow health?  Epo alone cannot be the only answer as IIRC Epo merely stimulates the marrow to produce.  If the marrowo is lacking some essential element it's output will be reduced.

This is part of why I Believe a diet that includes all the 'color's, as wide a variation of all things critical.  We don't know enough yet.  Even after all these years man is still stupid and does what he likes.  Not necessarily what he should.

I know here again, I am Guilty.

[PrimeTimer]

HA! Someone FINALLY returned our calls! Hubby has an appt to see the Hematologist this Wed. Being nasty may not score you any points but being firm and very direct seems to get their attention. Yeah right. Now just wait til they get my email....they emailed us a bunch of forms to complete. Well, their website had all the "new patient" forms to download and print so we did that. Afterall, their website says to be sure to do that PRIOR to an appointment. Except today they said the forms on their website are outdated. So they emailed us 27 pages of new forms to complete. Oookay. So I sent them back a nasty-gram about how they should update their website and not be wasting patients time and printer paper. I'm thinking about sending them a bill.

Meanwhile, hubby is having to take 2 antibiotics for the pneumonia. And guess what? Since it's the beginning of a new year and he has employer-issued insurance as his secondary for prescriptions, he has a new deductible to meet. He forked over $210 today for meds. If he had gotten pneumonia later in the year then it probably wouldn't have cost so much but darn it, nope, he has pneumonia right now, early January. Sheesh....told him "Hey honey, you weren't suppose to get sick this early in the year. You should've waited until at least April or May". Poor guy. He's coughing and choking and forking out the bucks for antibiotics and has a wife on the war path. Can't catch a break.

Folks, please take this flu junk going around seriously. Hubby is lucky to be home resting instead of in the hospital. When they discharged him they had him leave out the back door instead of walking back thru the waiting area of the ER because as they put it, "it's filled with sick people". I had to drive around and around before spotting him sitting outside in back of the hospital.

[Simon Dog]

I always ask MDs for their email address.   Sometimes, I get a login to a portal that provides controlled access (minions reading the docs emails  during business hours to see if it can be handled by lower level REMFs).   But, in two cases (Neph and hemo guy) the docs gave me their direct emails and have been very responsive.  If I email my neph at 10PM and put the word "stat" in the subject line I can expect my phone to ring within 5 minutes.   Hemo guy has been great - even though my hemo issues have been long resolved, he's still my guardian angel at his hospital (8 week wait for a specialist turns into tomorrow if I email him; he looks in on me when in his hospital and doesn't even bill it as a consult, etc.).   

The interesting thing is that in both cases, the docs don't offer their email addresses or mention that they provide that level of service unless you ask.

[Charlie B53]

The family Dr that gave me his email finally retired.  We'd gone to him for nearly 20 years.  He is our age and we will always miss him.  He moved back to our old area around Puget Sound.  He LOVES it!

REMF.  That is a Veteran's term.

With chronic sinus problems I've found a couple of drops of eucalyptus oil in a humidifer can make a huge improvement.  Wife doesn't care for it much at all, claims it's too strong.  So I most often add a couple of drops to the water tank of my CPAP.

Some days I stick a very light smear of Vicks inside each nostril.

Even if it doesn't work I THINK that I feel better.  Attitude is everything.  Just thinking he is getting better will make the body clear out the junk and actually get better sooner.

Then there have been those times when my lungs were soo bad that I thought I would drown if I laid back in bed.  I put a pillow in the dinning room table, sat in my chair, leaned forward into that pillow and slept soundly.  I could breath OK sitting up.  Wife has learned, don't mess with me when I'm sick.  Just leave me however I am comfortable and can breath.

Hope he gets better soon!

Take Care,

Charlie B53

[Simon Dog]

REMF.  That is a Veteran's term

The only thing I am a veteran of is the computer industry.

I use that term to describe anyone not doing front line work in their profession (officer workers in MDs offices, billing people at Fresenius, etc.).  I think it aptly applies.

[PrimeTimer]

My husband's appt with the Hematologist went fairly well. Doctor was very thorough. Gave him a sort of mini-physical. As for lab work, they only took 1 Lavender tube. His Hemoglobin now went from 8.2 back down to 7.2 but the doc said it can fluctuate like that. He said it looks like he is producing plenty of red blood cells but too large of cells and has a B12 deficiency. Iron level looked fine. He started him on B12 supplements. Follow-up in a couple weeks. If not better, might need a bone marrow biopsy to look further into the type and cause of his anemia. Meanwhile, the anti-biotics are kicking in so seem to be clearing up the pneumonia. He has more energy and color coming back but still some coughing. He's been thru hell but slowly perking up again. He's back at work already couldn't talk him into taking another day off to rest. Well, he's got the weekend now to do that. Hopefully the most he will do is go to the bookstore and watch tv. He's not into napping and has to be begged to do that. Sometimes I think that's why he gets rundown. Refuses just to sit and do nothing and well, sometimes people need a good rest.

[MooseMom]

I am so glad the appointment went well.  Thanks for letting us know!  I hope you both have a restful weekend.   

[GA_DAWG]

Glad everything seems to have gone well. It can be nerve wracking when the numbers get off and no one seems to have an answer.

[PrimeTimer]

Thanks everyone for your concerns and kind words. He is taking 500 mcg's B12 supplements a day now. Hopefully this will resolve the problem. I read that some patients only need the extra B12 until they are no longer anemic while others need the supplements for the rest of their lives. The Hematologist said that compared to most patients he sees, all his other labs look pretty good. That was a relief.

My husband is a little different in the way that if his hemoglobin drops even just a little to anything below 10 he feels it. He really feels wiped out if it's down to 7 or 8 and feels like death warmed over if it's around 6. So they like to keep him a little higher than they do some patients up and closer to 11. The clinic gets a little squeamish about keeping him at 11. They seem to put everyone in a one-size fits all box. But if he isn't kept at over 10 and close to 11, his Neph gets a bit upset with them and THEN they do as they are told. Kind of maddening, shouldn't have to be that way. They should follow the Neph's orders in his record. Especially when my husband reminds them. One time even another Neph who was filling in wanted him kept up to 11 and a nurse tried reminding him of "Fresenius' policy" but he raised his voice and repeated his orders. That was that. Apparently it can be dangerous to get over 11 but in my husband's case, he needs to be kept close to 11. But gosh darn it, it's like you have to constantly remind these people of what the Neph ordered and of your symptoms. If you don't then you take the risk of becoming worse off. You really do have to speak up for yourself and get ahold of your doctor. TELL your doctor how you are feeling. Anyways, he's resting and feeling better but as we all know it takes a while to bounce back from anemia. After this I almost wish I could take a black marker pen and write "Keep my hemoglobin at 11" on his arm. 

[PrimeTimer]

Labs were done at Hematologist again today. Hemoglobin holding steady at 8.2. Turns out, no B12 deficiency but doc told hubby it won't hurt to continue taking the B12 supplements. If his hemoglobin dips again then he will need to have a bone marrow biopsy. Doc said all his other labs look pretty darn good. Keeping our fingers, ankles, wrists and anything else crossed along with saying a few Hail Mary's (we're not Catholic but can't hurt) and a lot of prayers. Not going to walk under any ladders or look at a full moon thru tree branches or let a black cat cross our path.

      "Dear Lord, please hear our prayers because I don't want to have to do anything silly".

[cassandra]

Fingers crossed here too.


Love, luck and strength for the both of you, Cas

[PrimeTimer]

Fingers crossed here too.


Love, luck and strength for the both of you, Cas

Oh thank you so much, Cas! Warms our hearts to know you send us so much support. It helps more than you know. 

[MooseMom]

I'm glad to hear that his hemoglobin is holding steady, but at 8.2, how is he feeling?  Is he feeling like "death warmed over"?  What are they doing to get it back up to 11?

When does he next see his hematologist?  Gosh, I'm really hoping that your husband doesn't have to go through a bone marrow biopsy.  Hang in there!  I guess there's not much else you can do, is there, so a cliché is in order.  lol

[PrimeTimer]

I'm glad to hear that his hemoglobin is holding steady, but at 8.2, how is he feeling?  Is he feeling like "death warmed over"?  What are they doing to get it back up to 11?

When does he next see his hematologist?  Gosh, I'm really hoping that your husband doesn't have to go through a bone marrow biopsy.  Hang in there!  I guess there's not much else you can do, is there, so a cliché is in order.  lol

Thanks, MM for your kind words and thoughts. It helps to be able to "talk" about this with people who truly understand and who want to "listen". Thank you for being there!

He's out of breath and tires easily. He also has slight edema in his ankles that the Hematologist said is also being caused by anemia. He otherwise rarely has any swelling and never fluid overloaded when he goes for dialysis. Being at 8.2 isn't good but he's got his color back and all his other labs look good. He goes back for a follow-up in a month but if his Hemoglobin drops again before that then they will do the biopsy ASAP. In that case, the doc thinks the anemia could be caused by a condition that enlarges the red blood cells that makes it difficult for them to circulate but he said there is a cure for it (pill). But looking over his other labs and the fact that his hemoglobin seems to be on the way back up, he thinks my husband is fine. He had a lot of "frequent spillage" and leaking during dialysis last month and this really does go to show that "every drop counts". A nurse at the clinic said 8.2 isn't bad...he felt like putting a boot up her. She'd probably struggle too if she was at 8.2. Seems they forget who they are talking to.


self-edited:  Meant to add that the Hematologst said every "point" on your Hemoglobin level represents 1 pint of blood. Never knew that! But again, goes to show that "every drop counts".

[MooseMom]

What does your "gut" tell you what's going on?  Do you have any idea yourself?  Do you think it's leakage or that RBC enlarging condition, if you had to guess?

[cassandra]

Hi PT, I just want to ask if I've ever overlooked what your Hubby's Ferritin is?
I know you wrote that his iron levels are fine. But Ferritin is usable iron. Some D patients need
very high Ferritin levels. Mine needs to be above 1000 (normal range for non D people around 300)
To get my HB up

Love! Cas








Fixed fonts Mod Cas

[PrimeTimer]

MM:   I think it's the result of all the spillage and leakage that's been happening at dialysis. Several times he came home with the side of his pants and shirt soaked in blood (the same side as his fistula arm) and one of those times an arterial needle went flying out. A nurse (not a tech but a nurse) went to remove his needles and instead of dealing with one needle at a time, she removed the tape from both his venous and arterial. Just as he looked down and started to say something to her the needle went flying out and needless to say, so did his blood. When we were doing home hemo we were trained to never leave a needle sit without being secured by a hand, finger or tape. And that's why.

cassandra: Thank you for bringing up Ferritin levels. I don't know what his level is but turns out he is not B12 deficient. The Hemo doc said that hubby may be getting slower at responding to EPO. Meanwhile, his Neph is starting him on Auryxia, which is a phos binder with iron in it. They said it was because his insurance co-pay for generic Renvela is $800 and that Auryxia is much cheaper however, I wonder if they've got their facts straight and almost suspect that they (his clinic) want to save money on EPO injections and Iron IV on him. Guess we will have to see what his labs look like next week.