what should hematologist prescribe?: So, after... - CLL Support

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what should hematologist prescribe?

JerrysGirl3 profile image
β€’36 Replies

So, after my excitement over getting the meds I realized that I had had a strange heart episode the night before (Monday night) and I had to take a high dose aspirin and a blood pressure pill to calm it down, which it did. However I noticed in the Manual Differential lab that the following showed up, marked in red: hypochromasia 1+. Elliptocytes 1+. Stomatocytes 1+. And smudge cells 2+. The commonality with these results is ANEMIA!! I've brought this up to him several times, first when ovalacytes showed up and those were also the symptoms I experienced. He never even discussed it with me! I read them on the portal when I was on the bus! I then said I thought I should probably take BP meds as well because of cardio issues on the meds. And he said "yes. You should take them with the Zanubrutinib." But if I hadn't mentioned it I wouldn't have known to take them! And when the pharmacy called me to say they were approved, he hadn't ordered any blood pressure meds!! I just sent a note through the portal to him, pretty harsh I guess, that I didn't want different doctors prescribing me different meds. I felt there should be one prescriber!! Am I right here???? Other doctors don't know about Zanubrutinib so how would they know what to prescribe and if a side effect was happening because of the BP Med or the Zanubrutinib??? I'm very upset now. Very upset. Then I mentioned that after I take the initial labs after two weeks and see him again, if I could have labs taken at my local oncologist. He was like Great! But if she is not a CLL doctor how will she understand the Zanubrutinib reactions and I'm only assuming she will be sending them to him. But how often should they be taken? Every month? Every two months ?? Something does not seem right here. I feel like im going to be taking these meds without proper supervision. Im hoping the pharmacist will have some answers for me. I just had a 13 hour day and I can hardly move and now i have to worry about this.

πŸ™πŸ™

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AussieNeil profile image
AussieNeilPartnerAdministrator

Just because something is mentioned in your blood test reports, doesn't mean that it needs medical attention. Some may be automatically reported and others mentioned in comments following a manual review. The review could be due to a request from the doctor authorising your blood test, or simply automatically added, because your results are out of range due to your CLL or other health conditions. I don't know how your portal works, but it's common (actually standard practice in Australia) not to be given access to your blood test results until they have been reviewed by the doctor requesting the tests.

Smudge cells are due to the CLL cells having a less robust cell membrane than healthy B cells. It's commonly reported on blood tests when you have CLL and it's actually a good indicator for a more boring CLL experience! Anaemia is also common with CLL, but is managed by packed red blood cell transfusions if your haemoglobin drops below 80. Starting treatment before your haemoglobin drops below 100 should give you a sufficient buffer to avoid any of these.

You certainly should have your concerns addressed by your doctor ordering those tests, even if it's something along the lines of a response to you asking "I've seen some notes on my blood test results. Are there any that you consider need specific attention other than further monitoring?"

The normal supportive drugs that you might be prescribed, (depends on your degree of tumour burden - I gather yours is low) and your degree of immune suppression, are respectively:-

- Allopurinol if you have a high tumour burden and/or are on fast acting treatments like venetoclax or obinutuzumab or rituximab, or the older chemo treatments. This protects your organs from being overloaded by rapid cell die off.

- Anti-nausea and/or anti-emetic. You may not need these, but it's good to have them on hand. Ditto something for excessive diarrhoea.

- Antiviral and/or antibiotic prophylactics if your immunity is considered low enough.

With respect to proactive cardiovascular support (and indeed other comorbidities), you should have been reviewed for these as part of the process for selecting the best medication for your CLL. As you've learned, zanubrutinib slowly but effectively reduces your CLL burden and is generally quite well tolerated, with some of us not even aware that we are on it. Among the BTKi options, it's much better than ibrutinib and seems to be as good or better than acalabrutinib, but if you have a tendency to having high blood pressure (hypertension), then you do need to have that monitored. If you are susceptible to 'white coat syndrome', as many of us are, then it's best to monitor your blood pressure at home.

Keep in mind that I'm not medically trained and the above are only background suggestions to assist you in raising pertinent questions with your medical team. It's great that you are about to start treatment. My wish for you is that you quickly gain the 'boring patient' label.

Neil

Accordion profile image
Accordionβ€’ in reply toAussieNeil

Brilliant AussieNeil!

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toAussieNeil

With the exception of Mean Cell Hemoglobin Concentration and Red Cell Diameter Width, my CBC Panel with Platelets, my Complete Metabolic Panel, my CBC Panel, My Reticulocyte Panel were ALL in the green zone! The only thing that was off was the Manual Differential! When he said to me i could wait another six months because my numbers are good or start now - he's the doctor. Was he telling me to hold off? I came into the office with high blood pressure and had a heart event the day before. And he didn't think to offer up blood pressure meds! I had to be the one to ask about them and he didn't even prescribe them for me! At Sloan Kettering after my botched thyroidectomy and. Neck dissection, I called up and wanted to know who my "team" was as their TV advertisements always mentioned "your team". She got very quiet. I said "there is no team is there ?" And she waited a bit and then replied "no". I would rather have one doctor prescribing all my needed meds because there is no "team". I can't rely on the doctors out here to always be available when only one doctor knows about the medication. I do have extreme nodal involvement in the interior of my neck and throat and upper chest. They don't stick out. They are inside and constrict my breathing and swallowing. That's my problem. I've only had two or three bouts this last year of extreme fatigue. It's the terrible nodes that prevent me from eating normally. Swallowing normally. Breathing normally. I just hope I am not setting myself up to destroy all my good, in the green, numbers....Why didn't my doctor tell me to have these other meds in place for possible side effects?

Maybe it was the very long day and standing in the heat for over two hours waiting for a late bus home that caused me to go nuts but I think I've brought up some very valid points. I hope the pharmacist is nice about answering my questions because I have a lot.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toAussieNeil

And on a good note, my doctor did take into consideration my heart issues when he suggested the Zanubrutinib. I think i would prefer slow but steady at this point 😊Thanks for your help in going through this, Neil. I can't imagine I am the only one with thoughts like this but maybe the only one insane enough to write about them!!

Best to you

Kerry

Accordion profile image
Accordion

I know the feeling! First happy happy, and the worry worry, oh why didnt I ask the dr! You are quite right that it is essential to have your hemathologist discuss your bloodtest results. And start prescribing bloodpressure medicine, if needed. But then maybe someone closer to you can follow up. I have since many years my own bloodpressure meter. Use it when needed. It can be a very relaxing thing to see it is quite ok. Or it tells me to go rest at once. And since my 2020 covid I have an oximeter for see oxygen satisfaction. Was excellent argument to the lung drs to start taper my prednisolone two days ago. Also soothing for the mind sometimes to see that it is quite ok.Bloodwork I cannot do myself unfortunately. Now three times a week(falling trombocytes!), but finally this morning a nurse started to come to my home, since I cannot get away from home due to bad angina. Things do improve.

Best luck to you Kerry!

Your friend

Christina

SofiaDeo profile image
SofiaDeoβ€’ in reply toAccordion

I disagree, my CLL specialist is not the one to prescribe my other meds. They consult with the other docs, and discuss strategies, but CLL doc is NOT the one to be prescribing for a complicated cardiac case. Weigh in on, yes. Prescribe and monitor for cardiac effects, no.

Accordion profile image
Accordionβ€’ in reply toSofiaDeo

You are absolutely right SofiaDeo. I wasnt thinking at all! During my recent serious crisis I had specialists from cardiac, hemathology, lung and infectious disease department consulting each other. The life saver was the little smart energetic dr from infectous disease, who like a military put me through all kinds of investigations, multiple antibiotics until she finally found a diagnose. Coming to see me a short minute every day and holding her thumbs that it turn to the best. Wasnt I lucky! Best wishes

Christina

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toAccordion

I asked my doc for a referral in the same hospital thinking I could create my own "team". His response: go online and search and just pick any one. 😳 Personally. I think female doctors outperform their male counterparts. Just an observation. 😁

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toAccordion

Yes. You were lucky my friend ❀️

kitchengardener2 profile image
kitchengardener2

I totally agree with all you say, it cannot be right to be shipped around from doctor to doctor. I was prescribed Apixaban for AfFib after my scalding accident by an A&E (your emergency room) doctor who said I would need it for the rest of my life. My general practitioner agrees with me that it was perhaps a bit quick to say that but that at my age (70) it wouldn't do any harm. At no point did either consult with my Haematology Consultant. After stopping the Bisoprolol my pulse rate is normal for me but I am experiencing a woozy sensation when I move quickly. When I have bloods taken prior to seeing/speaking to my CLL consultant, my GP only get the results if they request them. It's all so fragmented and in my mind quite dangerous. Take care xx

JerrysGirl3 profile image
JerrysGirl3β€’ in reply tokitchengardener2

I agree. And I did not like my docs assistant at all. He seemed to find what I had to say not important. His usual female Ass’t wasn't there. Barely touched my body especially when I toldhim I had pain in my spleen area. Did no

Examination except listen to my lungs. I Found out doc did not take thyroid labs like they said they would at my request. I'm still not sure if I need to take 2 BP pills or one. Still don't know if I'm also hyperthyroid. I hope I made the right decision to start meds but they come today. It's Awful when you can feel nodes pressing on your airways and no one else can. Read the info part of my after visit summary and it was not true. I don't trust any doctor anymore. I hope the Zanubrutinib will lessen the size of my nodes. I feel all alone. I used to trust this doctor but now I'm not sure and it's really too late. Can't keep switching around.

kitchengardener2 profile image
kitchengardener2β€’ in reply toJerrysGirl3

I don’t want to switch around, my GP when I can speak to her is fine. I am happy with my CLL consultant, my worry is the A&E doctor, who didn’t have my records, I wasn’t sure he knew what Acalabrutinib was and just prescribed medication which he said I would need to take for the rest of my life. I think a medical record should be just that, not a fragmented thing where different departments don’t have access to the complete picture.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply tokitchengardener2

Absolutely right and each is protective of their info lol!!

SofiaDeo profile image
SofiaDeoβ€’ in reply toJerrysGirl3

Re:the labs, I have had the doc order labs and the *lab people* messed up the order. So verify where exactly the ball got dropped! How do you know for sure the doc didn't order the tests requested, did you see the order? Could it be possible that the lab people missed it? I find that "hematology specialty" clinic lab people can easily miss orders for things they don't routinely do, unless a truly computerized integrated computer system is spitting out labels that the doc inputted directly. A nurse entering orders for a doc, can miss things not routinely ordered. Plus If someone has to manually print something, orders can be missed. Ask me how I know haha!

AussieNeil profile image
AussieNeilPartnerAdministratorβ€’ in reply toSofiaDeo

Thanks for adding in your experience here SofiaDeo. Kerry, I thought along the same lines.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toSofiaDeo

I believe the labels were printed. It was the hospital lab where you go first so the doc has results in hand when you talk.i wouldn't have even thought there was an issue when I saw all the tubes. I just assumed it was for the labs I had requested as my most important doctors out here are no more. I wanted to make sure I was in good shape before starting this medicine. I don't think that was too much to ask. It also wasn't his regular assistant who I like and who responded that the tests I asked for would be taken. It was another PA - a smirky guy. Usually the labs are updated on the portal when they are finalized. No one has touched them since Tuesday. No one has replied to my three portal messages (although they've been seen). No one has responded to the pharmacist 😳😳. Really? My BP is very high. I still can't get answers from anyone whether I should take one or two BP meds! So much for good medical care at a top NYC hospital.

SofiaDeo profile image
SofiaDeoβ€’ in reply tokitchengardener2

I remind my docs to send results to the others. I do not think we get optimum care if one doc is supposed to manage complex medical cases without specialists. A comment from a doc in A&E I would take with a grain of salt, and ask my GP/other specialists if they concur. You are 100% right they don't know your entire chart and history, and IMO it's pretty arrogant to make a statement like that as a pronouncement, unless it was a softened "you might have to be on this the rest of your life" with a sympathetic smile. I don't think anyone has an ideal setup regardless of where they live; we as patients must question and question. It's tiresome, but it's an unfortunate reality when there are strained and limited healthcare resources. Covid has affected healthcare probably worst than other industries IMO, and we need to be our own advocates. Unless you can find/hire someone qualified to monitor/document/correlate/make appointments/follow up on things, for you.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toSofiaDeo

I agree totally. But not all doctors like when you speak up and question. You are right. There is a definite difference in care before and after Covid. πŸ™

morepork profile image
morepork

It is hard/stressful when we have to try and coordinate various parts of our treatment needs and questions between medics. I remember my earlier years like that. Speaking of the idea of a "team" approach my experience in NZ has been very much that my Haematologist is part of a team of his own peers who problem solve together, but he leaves it to my GP to take care of my meds and any other issues other than the Ibrutinib, which is dispensed from the hospital. I get my blood test results the same day I have my tests done (32 different components including IG's) and my GP has never mentioned whether he has reviewed the results as the tests are ordered & reviewed by the Haematologist, (and me myself now that I feel like 'an old hand' !). I've spread-sheeted my test numbers since 2011 so I can see the trends over time. It does take time to feel confident about all of this.So - in summary

I have now undertaken to 'educate' my GP on many aspects of my CLL - sometimes using references from this site, as I don't think the GP practice has ever had a CLL case before.

And the cardiologist had never heard of Ibrutinib.

Wishing you strength and less stressing - you sound like you are already asking relevant questions. 😊

JerrysGirl3 profile image
JerrysGirl3β€’ in reply tomorepork

Thank you. But not getting relevant answers. I guess we have to survive on our own. I have so many labs in boxes around my house. I don't know where I would even begin. I am distressed and distraught. Trying to stay positive. My biggest fear is that if I have a side effect I have no one to help me in the neighborhood to help me.

SofiaDeo profile image
SofiaDeoβ€’ in reply toJerrysGirl3

Labs in boxes?

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toSofiaDeo

Hahaha paperwork labs. I have had a lot of medical issues over the years. I used to have a box set aside for each major issue until "someone who shall remain unnamed in my household" said they took up too much room where they were located and ever since then I have lost track of everything and now I don't really care because i come to each doc appt with lab reports, CDs etc and no one even looks at them. At all.

Big_Dee profile image
Big_Dee

Hello JerrysGirl3

I think you actually underscored the need for multiple doctors interfacing with each other and all having a complete list of your meds. It is hard to do but is an excellent reason for seeing a CLL Specialist. I want the most knowable doctor on my team and that includes my GP, because in the course of CLL I will have bouts with infections and etc. Blessings on resolving your health issues.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toBig_Dee

Thank you. I have no confidence in either of my GP's. One is never there and the other charges for every little thing. Still waiting for meds to be delivered. Can't leave house. They've got 20 minutes then I will have to start tomorrow because delivery will be too late.

CycleWonder profile image
CycleWonder

We do have to work to keep everyone informed. All my doctors are part of one network except for my CLL specialist. There are CLL specialists within the network but they are in Baltimore which we try to avoid. We have insurance coverage that allows us to choose any doctor who accepts Medicare.

As difficult as it is to coordinate our care, when we were managing our parents healthcare it was just as bad. We didn’t understand all the medical issues they were facing and didn’t always navigate the healthcare system well.

My friends had the idea to hire a retired nurse to help with their elderly parent. It worked amazingly well. I wish I had thought of that.

I hope this treatments help shrink your throat nodes quickly and your heart issues are not worsened.

Patti

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toCycleWonder

Thank you Patti. Still waiting for Med delivery if it's late I have to start tomorrow. More waiting.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toCycleWonder

Also we have so many different groups out here I can count on my hand!! And. One connect with each other and each has different info on me. If I wasn't so sick it would be laughable!

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toCycleWonder

Should read "no one connects with each other"

Alex830 profile image
Alex830

Honestly though your CLL doctor probably doesn’t know that much about bp meds and how they interact with CLL meds except for the bare minimum. My CLL specialist sent me to a cardiologist who specializes in oncology patients with heart issues when I had issues on while on Calquence. He was honest he was not that familiar with bp meds. My cardiologist talked to my nephrologist when he changed some of my bp meds. I actually got great info from the pharmacist who fills my Calquence prescription.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toAlex830

That makes sense. But why couldn't he say that to me? I just portaled my new cardio to ask if he was familiar with leukemia and BP meds and to move up my echo and other tests from December to August or September. Where are you located ?

What kind of issues did you have on calquence? My sister is on that, changed from Ibrutinib after 18 months she had a slight heart attack and has two stents in but is still experiencing shortness of breath. I told her it could be the CLL meds but she is not interested, however I am 😁

Alex830 profile image
Alex830β€’ in reply toJerrysGirl3

I have these fainting episodes caused by my bp going too low. Both my cardiologist and nephrologist agreed that in my bp meds needed to be adjusted. CLL caused my acute kidney failure but my kidneys are slowly starting to improve because of treatment hence the need to adjust my bp meds.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toAlex830

I'm really glad that you have responsible doctors. I'm so happy your kidneys are improving ❀️❀️ I do have to say low BP has never been an issue with me lol.

SofiaDeo profile image
SofiaDeo

When you have multiple diseases, it's best to have each specialist recommend a treatment. You will find it hard if not impossible, to get one doctor to prescribe *everything* for serious, extremely complex, versions of diseases. It's important that they all get any labwork and other tests done by any one specific practitioner, so they are aware of changes in your body, but IMO you are wrong in wanting "one doctor to prescribe everything".

And you SHOULD have known to take the BP meds you reported to the hematologist that you were taking when you went to see them. They operate under the assumption that you *are* taking the meds that you listed in the "medications I am taking" stuff you filled out as a new patient, or else why would you say you are taking them? They only comment IF one is needed to stop, or change, a drug or dose, and this is generally done with discussion by whoever prescribed it. Based on side effects you report, and labwork or other tests done, So I think you are wrong. And you determine which drug may be causing a side effect, by discussing it with the docs/pharmacists. They research the possibilities. Your oncologist likely has a clinical pharmacist on the team; this is a person to address these question to IMO. A clinical pharmacist (which may or may not be the pharmacist dispensing the drugs) will likely be able to answer questions like this, and know the various reactions and side effects and interactions across broad groups of drugs, unlike the medical physician specialists. They diagnose and treat, their expertise isn't necessarily in drug reactions/interactions across differing disease states.

I am not sure exactly "I'm only assuming what she is sending him" refers to. You aren't clear. What is to be "taken" every month, or two months?

Please calm down, and ask questions instead of "sending harsh notes". Or getting upset at what *you*, the non-doctor or healthcare professional, assumes should be going on. Ask polite questions, repeat them as needed/ask for clarifications, until you understand more and are comfortable with the answers. I know you have a very complicated medical situation from what you have posted, but from my point of view, your posts often seem to assume the worst and find malign intent or gross incompetence in what your docs are doing. Look at how outraged you were at the whole process for ordering the zanubutinib, when it actually was quite normal. It was normal to not be allowed to pick up specialty meds even if the pharmacy was in the building, but you didn't ask "is this normal" you got mad/upset because you couldn't pick them up. You were upset because the doc ordered a med, the pharmacy filled it, billing your insurance, and this is quite normal. A patient can always decide not to pick up the med, and the charge to the insurance is reversed. This is the usual procedure, but instead of asking *if* any of this was normal, you got all upset at what occurred. I think you will be less upset & unhappy if perhaps you can somehow ask questions (like,"why haven't you discussed these recent lab results, they are marked as out of range" which might be "normal" considering the diseases; that's what defines us sick people,from normal healthy ones, after all. People with diseases generally have "abnormal" labs and tests, otherwise we wouldn't be considered ill! :) ) And if you have read the Pinned Posts as recommended thoroughly/repeatedly, until you understood a lot of it when first joining this site, you hopefully would have realized that random, odd lab results do occur, and many are not clinically significant. You might have saved yourself some angst, there, and not get so stressed out. If and when "trends" start popping up, that's another story. But do continue to report symptoms/side effects, to all docs. It's no fun to have to tell multiple docs the various things going on, and it takes more time and is more stressful, but unfortunately I don't think it will be possible to find one single doctor, who is qualified to handle CLL as well as be expected to also be a cardiac plus other specialist. Mild cases of multiple disease states may be managed by a single practitioner, but I think that you, unfortunately, have an extremely complex medical situation, and will need to consult multiple practitioners for the best outcomes. It's stressful for you, and awful that this is your situation, but trying to stay calm/ask questions when you don't understand who is doing what, and why, should hopefully make your life a little easier (big big hug). I realize this is difficult with the past problems you have endured, but please consider trying this moving forward. I really do think/hope it might de-stress you significantly.

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toSofiaDeo

Thank you for your response 😊 however I do need to clarify some issues. I always update my meds list and come in with a printed one as well. Usually the people at the front desk will take them and upload disks and reports. I have even portaled the various doctors and asked them to update my meds list which they never respond to and don't update. I was not taking BP meds for 4 months at the time of this visit and I had already told the doc that on my prior visit. I DID tell his PA (who you give your info to first) the morning I came in that the prior day my heart was feeling "off" and my BP was high and that I had taken a high dose aspirin and a BP Med which seemed to calm it down. However on Tuesday the next day, I was sitting in his office with the PA, my BP was 170/80. A little high, no? Especially since I had told him of my experience the night before which I also mentioned was new to me as I had been doing well. And my exam consisted of me sitting in a chair when I started to get up to move to the examining table so he could feel my spleen as I was having issues. 😳In response to asking questions. It has been made "clear" to me that during a 15-20 minute regular office visit there is not much time to address things and answer questions. And my 30 minute appt (out of my 13 hr day!) consisted of waiting in the office. Speaking to PA. He goes out. Comes back in. Doctor comes in. Suddenly telling me that he thinks I could wait another six months before starting or start now as the big node in my chest is reason to start (sending out conflicting messages especially since he was so into me starting at last visit), with no explanation given as to why he suddenly changed from "I think Zanubrutinib is the drug for you with lower cardio issues. Look into it and let's set up a virtual visit to discuss. ". I looked into it, as noted here, and got lots of great info and decided to go forward with my decision, feeling good about it, I portaled the doctor that I had done my due diligence and was ready to schedule the virtual visit to discuss starting the medicine as my neck, throat and big node in upper chest were making life difficult....and he never responded. I believe I have been doing everything requested of me for nothing.

On another note, I was mad, but not in the sense that you stated, that my meds were late. I so wanted to start them that day but I knew just by tracking that the FedEx truck would never be here in time (where I live, in the summer it can take 2 hrs to go 15 miles and he was coming from 40 miles away) so I decided to take control and cancelled my two doc appts on Friday, feeling confident, and decided to start the meds with a full 2x/day dose on Friday . I wasn't mad at the driver. I was disappointed that I couldn't start that day because I had prepared myself to start them. Regarding the actual meds, the first doctor who "ordered" them was brand new to me, didn't have my whole health history. Was basically taking my word that Zanubrutinib was the med for me before even seeing me!! It wasn't until several conversations with two pharmacists (one, hers. The other, the hospital where I see my regular doc again) that I found out you couldn't just get a yes or no on coverage but you had to write a script first. I never knew that in my life. But now I do. And her pharmacist, who i liked a lot, told me she had reversed the script (and I confirmed that with my insurance company). I was mad because I thought that the approval for one year was still stated as the June date that I saw her so in my opinion I thought I had lost two months on a one year approval. I don't think that's the case tho as the new script is coming from another pharmacy entirely.

The location where I live saw a HUGE influx of "city" people who moved out here during Covid and continue living here putting a great strain on our local doctors and local resources. Unfortunately, money talks and when NYU Langone moved a GP out here it was cause for great celebration and my whole family signed up early with the doctor, only to be told two months down the road, that we would have to see the PA. I said no way. I have too many medical issues and I need to see a doctor. She hemmed and hawed. I told her that I felt I had been pushed aside for someone more important who had just moved out here and that I had clearly made my appt in a timely manner. She suddenly "found" room to keep me on the doctor's schedule. I am tired of having to fight for my life even over something as simple as a doctor appt.

My BP is very high. I called pharmacist and she was concerned. We both messaged the doctor and he didn't even respond to the pharmacist !!! I am clearly on my own here and doing the best I can, with what little I have, to just survive.

If it wasn't for people like you in this group I don't know what I would do!! I thank you and everyone else for their responses. For their shared experiences. You folks have been my life preserver in an ocean of futility.

With high regards

Kerry

SofiaDeo profile image
SofiaDeoβ€’ in reply toJerrysGirl3

You are having an awful time, and I agree that whatever system you are having to deal with, isn't handling it as best/smoothly as it could be. I don't have the problems of people *never responding to portal messages*!!! for days on end; here it is 2-3 business days. It's awful that no one from the doc will respond even to the pharmacist. Unfortunately, there are some docs like that, I am not sure how they stay in business. I recall one particularly awful cardiologist early in my career who stressed his patients out like this. It was heartbreaking to have patients literally crying in front of me, because they were out of heart medication and the office wasn't responding to refill requests. Now we have laws that I could give a 5 day supply, back then our hands were tied. But this doesn't help you, who are having to deal with people on what I would call the "lower end" of the "quality of health care" scale. It must be so frightening and stressful to get either no response, or conflicting messages. I understand more now why you react so strongly when things even start to seem a bit "off." I wish I could be of more help, but I don't know what I can offer, other than to say, so sorry for the various runarounds and miscommunications that seem to be par for the course with the docs you are dealing with :(

JerrysGirl3 profile image
JerrysGirl3β€’ in reply toSofiaDeo

SofiaDeo. You don't know how much just getting responses and information from this group has helped me not feel so alone. Unfortunately it has been the story of my life. Waiting on a line for checkout, cash register working fine. I walk up and suddenly it stops working lol. I found a supply of heart medicine 100 miles away where my mother lived. I could have had her pick them up for me. Pharmacist says oh have them shipped here! Guess what ? When I came for my refill he had given them all away!!! I finally find another pill and I can literally feel it bubbling through my arms opening up clogged arteries. It was great! They take it off the market cos some people got heart attacks. I have a grandson who lives 15 minutes from me but because I can't babysit anymore for awhile until I see how I am on the zabrutinib , my daughter won't even come over to visit with him for awhile. Luck is not my lady lately..

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After having blood tests, ultra sounds & CT Scan I feel I still am none the wiser since my last...
CopJen- profile image
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8 and 1/2 months on ibrutinib , great news

After 8 1/2 months on Ibrutinib, new labs and ct scan , i was told by my Dr : 1- All labs are back...
antonb profile image
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What to do? a very enlarged spleen & very little money for treatment

Hello everyone, I was diagnosed in 2019 with CLL & told to watch & wait. Blood counts not too...
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Advice please

Sorry I have some questions that maybe you can answer. The nurse asked me as she always does at my...
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