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Hi Donna. July has been a whirlwind. Leon had to take an unexpected one month leave of absence from work; no energy to stand 12-14 hours in the pharmacy (pharmacist). The strange thing is that his CBC numbers are the same (still abnormal low) but he feels worse. Went in earlier this week (Thursday) to visit local hemo/onco. While waiting in exam room at 9:30 a.m. Leon suddenly felt nauseous, excused himself to the restroom, and vomiting/diarrhea ensued until about 3:30 in afternoon. Dr. felt it was another bout of food poisoning. Poor guy, we live on an island and had a 45 minute car ride that was very unpleasant for Leon.
Anyway, Dr. wants BMB done next week, no waiting until for HOPKINS. He is hoping to glean something from the upcoming report. I hope the temporary rest from work (Aug. 1st start date) helps him regain some energy. I think we are all scratching our heads now, including the doctor. His Hopkins appointment is August 16th. His spirits are a bit lower than I like. My head just hurts from all the work related phone calls establishing leave of absence, short term disability, benefits, etc. my heart aches because I hate to see him feeling so poorly. The Dr. mentioned that should the BMB not tell us anything definitive, he was going to order a full body scan of sorts.
I hope you are smiling and feeling good today.
Cheryl, although my posts here so far have not been too many, everyone here is so compassionate and patient with listening and sharing their own journeys. Thank you for sharing yours. I sincerely hope your days get easier so you can enjoy the things that bring you joy. I am sorry for your struggles. While our faith gives us comfort and hope for beyond, everyday struggles seem impossible sometimes. Hang in there and continue to reach out here; amazing people here in this special group of people.
Thank you so much for sharing your journey Teri. My husband, almost 63, has been on wait and watch for almost 3 years now, mainly struggling with low RBCs, tired and afib/afib flutter challenges. All other diseases, deficiencies and autoimmunes ruled out. Like your husband, his attitude and zeal for life has always remained high. He did not let it stop him, just took it a bit slower. His first and only BMB did not show MDS, just hyper-cellular with excess iron stores, blasts were a little under 3%.
In February, 2019, right before a scheduled trip to Jamaica, he started getting ill with bouts of food poisoning, throat/tonsil virus, skin infections. We left on April 3rd as planned because he said he felt fine. Prior to that he was a bit stubborn and did not bother seeing our primary for these illnesses. At that point, we only knew his RBCs were low/anemia so he thought this bad streak would pass.
Three days into our trip, he developed a skin infection and a fever of 102.5 and he felt very sick. We got a flight back home, saw his primary and he was hospitalized with influenza A, afib & afib flutter and he was neutropenic. This continued through May.
All CBCs since are now showing both low RBCs, WBC and neutrophils. Although his local hemo wants to wait for one more CBC and a second BMB before firmly giving a an MDS diagnosis, he has been accepted into the Sidney Kimmel Cancer Center at Hopkins in early August.
Your story, like so many others here, humbled me tonight. My recent fear, sadness and self pity were lifted a great deal. Truthfully, it is the first time since allowed myself to feel it so deeply. Your story is one of strength, love and determination. I can only hope and pray that wherever this takes us, we too can face it with such optimism and hope. My prayers tonight for you and your husband and every precious person here fighting this battle and their families.
God bless you and your husband Teri.
Thanks Kathy. One of the reasons I encouraged him to let me set something up at Hopkins was b/c his hemo wanted another BMB. Thought it better to get it done there since they seem so proprietary with specialized testing at their hospital. Did not want a Leon to have to go through a third one. I think maybe my thinking is wrong. We are going to call his local hemo tomorrow and take it from there. Yes, his health and energy have changed drastically. His first BMB showed 65% hypercellular and abnormal RBC morphology. His blast count was under 5% with no abnormal cytogenics, however his hemo advised that these things can change slowly or quickly. Do you think he HOPKINS doctor is seeing him b/c she sees enough to strongly feel he should be there now, despite his local dr. Waiting another month to commit to a firm diagnosis?
I hope you are enjoying this day with smiles and peace.
Hi Michael. The two ointments seemed to do the trick. Abscess not as red and skin around not as hot to touch; less painful. I took about eight hours this weekend here on the forum reading a number of stories and comments. It does help put things into perspective reminding us that everyone’s body is different and reacts uniquely under otherwise same scenario counts. Three people with equally low counts have different quality of life challenges, some none at all. I guess we will learn Leon’s soon enough. The WBC’s and ANC counts are a new phenomenon for him really. The anemia was the challenge in the beginning and that was a simple fix really, Leon working at his pace taking breaks when needed, taking naps etc. No real biggie in the whole scheme of things. It does worry me that his WBC/ANC have changed and he is visibly symptomatic. It does not help that he has a cranky heart suffering with persistent a fib and a fib flutter. The low hemoglobin just irritates it that much more.
We have a bright side too! We have 4 children and our oldest daughter is expecting our fist granddaughter in October! We are so very excited. Our kids have been moving in a very slow lane in this regard more emphasis on their careers. Our oldest daughter married two years ago and we cannot wait to meet our granddaughter.
Be healthy and happy!
Thank you Michael. This is very helpful. I kept thinking how many times over the years that we all may have had a sore like this here and there and treat it as you described, no real worries. In the 36 years of marriage, I have never seen my husband battle so many back to back illnesses as he has since February, including the Afib/Afib flutter issues I did not mention for which he was hospitalized.
Your post helped put the “pause” button on wanting to get him immediate care. Thank you! His local hematologist is getting a bit concerned now. It seems the wait and watch is showing some changes now. We are thinking it may be time now to head to Sydney Kimmel Center (HOPKINS) since he is suggesting another BMB.
It is reassuring to hear that although your counts seem very very low, you are doing well. I hope you continue doing well for many years to come.
When we were first told about this MDS he was watching for, I utilized my time and researched, joined this wonderful forum. In the whole scheme of things, he was doing pretty well except for being so very tired due to the anemia. I felt reassured that things would be OK. But I’m not gonna lie, since February seeing him battle all of this, my nerves are jumbled and I am truly scared for him; for all of you challenged with this disease. He is a pharmacist and does 12 hour shifts on his feet. We are trying to ride out the next 2 years so he can retire at 65.
We have a strong faith and lean heavily on the promises it teaches. Please be well Michael and thank you for responding.
Thank you. We are going to obtain the next two CBC results (taken over next 5 weeks). If Leon’s Hemo still recommends another BMB, I thought it might be time to schedule with a specialist at the Sydney Kimmel (HOPKINS). I will take a look at this information.
Thank you. Fortunately, I was able to complete my appeal favorably. I just remember how very important it was to furnish records that spoke specifically to your disability. The caseworker, more or less, shared that had I provided them completely initially with first application, no appeal would have been necessary.
Hi Cubby. I am sorry you are struggling right now and I hope you are able to sort it out. We (my husband who is struggling) are discovering how difficult it is to gain a full knowledge in order to make certain decisions. Last March, very suddenly, my husband developed afib and then afib flutter. At the time, we had no idea he was mildly anemic. In fact, it was his cardiologist who instructed My husband to see the next set of specialists after he calmed the afib and flutter. 6 ER visits later, within a 3 week period, they performed flutter ablation surgery and put him on the dreaded amiodarone drug. It seemed to finally calm both. Because my hubby is a pharmacist and knew the long term possible effects, he weened off this med 6 mos later and switched to the normal afib med along with blood thinner, which protects from blood clots should the afib start up. Anyway, this eventually led him to every medical discipline to see why the anemia. After all ruled out, we landed in the office of his hemo/onco. One BMB later and several 2 month cbc draws, the “watchful wait” status may be changing. His BMB showed a very hypercellular marrow with macrocytes and increased iron stores, but his blast count was under 5% and cytogenics normal. However, one taken last week is showing a few new things, especially the nucleated red blood cells which should never be in the peripheral blood, low nuetraphils, high ferritin and drop in his monos count, still anemic and wbc count low. Our visit next week will probably be one that has his doctor confirming the suspected MDS diagnosis. I decided to respond to you because it really was his heart event that started this journey. I think there is a connection but we are still early in. I do know that some medications can cause afib side effects. Has your doctor looked carefully at your heart and determined there is nothing wrong mechanically and feels this afib was just “momentary” due to medicines? Hope this helps some. Feel better!
Emily’s cited article is a good confirmation of “acceptable disease.” All medical records possible to substantiate is crucial, as they employ doctor subcontractors to review and approve. Make sure the records provided are clear and concise so that the reviewer has no questions as to your disease.
Thank you Diana. Yes, this was ruled out. He also had a high number of bands in his CBC. That count coupled with uncleared RBC show both red and white immature blood cells present in peripheral blood. I am concerned.
Many thanks. I hope you are feeling good.
Hi Keith. My husband is on a wait and watch MDS. I hope this finds you feeling well. I am responding to your post because I handled my own appeal on disability denial. Although my disease is Multiple Sclerosis, I may be able to give you a few suggestions. After receiving my denial, I was fortunate to be assigned to a friendly SSD caseworker. She strongly encouraged me to release and provide as many medical records as possible. I went back and re-reviewed the records I myself selected to include in my initial application and decided to authorize SSD via electronically to obtain any and all records. I made sure I provided all the names of my doctors and contact information. While the caseworkers are not really permitted to say one way or the other, she more or less told me that medical records/documents are so crucial in substantiating your claim. I actually called three of my doctors at HOPKINS and requested they send my clinical notes, etc., directly to my caseworker via facsimile. I was blessed to hear back within 60 days that my appeal was granted. I am not sure where MDS is on their list of recognized and accepted disabilities, but you can always contact an attorney for help. The downside to that is paying a portion of your award should you prevail. If your appeal is denied, you still have one more opportunity to appeal but it would involve a hearing before an administrative law judge. I cannot remember whether you would have to have counsel at this phase. Hope this helps.
Hi Donna. Looks my husband is similar to you in this journey. They are not able to identify origin of anemia after running all the obvious tests, including organs. He has always been anemic, mildly, but now it appears his WBC is a bit below the lowest normal. We go next week for 2nd round of blood tests before meeting with his hematologist/oncologist on the 17th. His doctor said that should his counts dip lower they may want to do another BMB. Our plan is to go to a care for excellence at Johns Hopkins for a solid 1st opinion. He is a pharmacist and works long hours. On his days off, he is so tired and really paces himself. He is only 61. I have noticed a huge change in energy levels over the last two years. Pre-MDS was discussed. I am going to inquire about the genetic testing as it was not clear whether this was included in the cytogenics testing. Hope you are well.
Hi all. I hope this post finds everyone feeling well and able to enjoy some much needed Spring air. So Leon’s Hepatologist explained that in order for his anemia to be secondary to liver disease, the liver would have to be in either a stage 3 or 4 stage (only 4 levels). They had a brand new Fiber Scan in their office and Leon was able to get a liver scan. Although this equipment has not been totally approved, it is the new latest and greatest scan that is not invasive (as a liver biopsy) and is very beneficial for cases such as Leon’s as it has been found to have excellent accuracy in identifying liver failure, scarring, etc. Although w3 have not found out results yet, the technician slipped and told Leon his liver looked great. The Hepatologist said either way, leon’s Low white blood cell count would not be linked to a liver condition. He thought Leon might in fact be monitored for pre-MDS. Assuming liver is okay, we have been tested for all other diseases and conditions that would have a connection to his anemia and now below normal WBC (3.5), neutrophils (1.4), RBC (11.2), MCV (102.7). His BMB show antigen precursor CD34+ but blast count only 1%, 60% hypercellular, increased iron stores. No abnormal cytogenics yet and his M/E ratio still normal. He is macrcytic w/o any B12, folate, or iron deficiencies. We have another round of blood work next week. Depending on the levels. We are probably going to make an appointment at the Kimmel Cancer Center at a Johns Hopkins Hospital for a second opinion.
So good to hear Allan! Leon gets his first round of blood work since having the BMB in late February. We are keeping our fingers crossed for good counts. I cannot help notice how easily he tires. I am not sure if I am noticing more now since becoming aware of this “wait & watch” or maybe his counts have dropped some in last 6-7 weeks. He saw his cardio on Tuesday and his Afib has finally settled (although he is on Xeralto and Cardisone). The cardio encouraged him to remain positive. Hoping a happy spring for all here.