Hi all,I had my new appointment with a new haematologist at a new NHS authority yesterday and the contrast to when i was first diagnosed and my treatment in the last 11 years was unbelieveable. I was really never told a lot about the condition I have, etjak2, I had to find out everything for myself through Dr,Google.Never really had any questions answered when i asked,Haemo had no answer when i asked why my platelets had never really stablized in all that time and would not discuss any other medication because as a colleauge of his suggested a "cost thing". I walked in the new Hospital apprehensive. I was shocked at the setting, nice comfy chairs and a coffee and tea machine,all free, you just had to put a donation in the Macmillan box if you wished! The whole unit is devoted to blood cancers and is not part of the main Hospital, at my old Hospital the waiting area was shared with other patients from other departments and often got overcrowded. I had arrived an hour early because of the travelling and i was seen promptly at my appointed time. Absolutey blown away by the consultant,he asked how i was diagnosed, the symptoms i experienced then and now. He seemed concerned that i experienced my second stroke while on a high dose of hydrea and aspirin and my platelets had never been consistently stable for any lengh of time and immediately said they would have to look at other medications if they could not stablise me. Anegrelide and Pegylated interferon were mentioned and side effects spoken about and discussed. He then examined my spleen,something that had never been done in 11yrs. He was unsure whether it felt hard or not so he as referred me for a ultrasound on it. He told me more in that one meeting than the whole 11yrs at my old Hospital. I was told I would be seen in 6 weeks times and he was sending me for a whole range of blood tests and introduced me to my named CNS who had sat in the consultation the whole time.I then went into another room and spoke with her at lengh,she asked if i had been referred to Macmillan when diagnosed,when i said no, she offered to refer me. I said I was fine and it was 11yrs too late! I was given a medication card and phone numbers plus booklets to take home then finally shown where my bloods are taken and the pharmacy is,all within the unit. A totally different and new experience to me and left me regretting not doing it sooner and shocked by the different level of care at different health authorities and it being a lottery when it comes to medication prescsibed. I certainly came away with a sense that my future care is in better hands and more optimistic. Every patient diagnosed with an MPN should have that level of care right from the beginning,unfortunately we know on this forum.that some patients do not. Atb, tina🤗
Absolutely different experience entirely! - MPN Voice
Absolutely different experience entirely!
Which hospital was that at?
Regards
Graham
Queen Elizabeth in Birmingham, i've just seen your post graham, I presume your going there for your appointment? Atb,tina🤗
I’m so pleased for you Tina. It sounds like first class care you are receiving at your new hospital. Even the setting sounds lovely with a calm atmosphere. Also, encouraging that they’ve mentioned Pegasys as a treatment. I’m sure at my clinic it’s not an option; I get that feeling when I’ve asked about it. Although hydrea suits me, it’s nice to have Pegasys as an option, especially with the positive results from current research.
You must feel confident now and your next visit will be interesting. Keep us updated!
Mary xx🤗
Thank you Mary,it it was a lovely calm and quiet atmosphere,at times i nearly dropped of to sleep and forget it was a hospital waiting room, the consultant certainly knew about all the MPNs and looks certain to try a different medication as he was concerned about the strokes,especially the second on while on hydrea. Also mentioned another bmb in the future as its been 11yrs since the last one. He was very thorough and very sympathetic and acknowledged that quite a lot of people with MPNs suffer with them. Its a pity more haematologists don't. Just glad i made the change! Tina,x🤗
My first appointment at Milton Keynes Macmillan was quick only took few minutes only asked about family history. That was it he wasn’t interested knowing what my symptoms I was suffering from as he mentioned all related to my condition. That was confusing. I was given a booklet from by the head nurse about mpn requested by my Hematologist to given to me. I rather my Hematologist give me more information just leave me in the dark for 5 weeks waiting for results.
Hi zar77, I am at MK hospital as well and am on my second haemotoligist. I strongly feel I was unnecessarily traumatised when first diagnosed and even now I'm not really happy, just keeping my head down. 🙋♀️
Hi Zar77, I declined to see Macmillian, like i said to my new named cns, it was 11yrs too late. I got a transfer to my new hospital because the old one could never stablize my platelets and haematologist had no answers to that. He also avoided answering questions when asked. I also got the impression he didn't have a lot of time for this forum,remarking to me once that you can learn a lot from the internet dismissively! The new consultant and the unit actively encourage you to go on this site and gives you all the booklets and leaflets about this site and your MPN in general. Atb,tina.🤗
Hi Tina, so pleased for you, this will make such a difference. Can I just ask, were the booklets you were given the ones we produce? Maz
Thank you Maz, I have never requested any booklets directly from the site but must be as it as everything about MPNvoice and the charity number and the address of Guy's and St Thomas' in London on them. Regards,tina.🤗
That's pretty amazing, Tina. I'm glad that you're finally getting the lefel of care you need.
Best,
Kim
What a good experience Tina, so pleased to hear you have found a Heamo who listens explains, and best of al understands .......I can totally get that you came out of the consultation feeling you are now in good hands.
Regards Sandy
Thanks sandy, didn't really need to say too much,just the main symptoms before diagnosis,he covered everything without the need to ask anything. It was the consultant who bought the medication up,saying he was concerned the hydrea had never really stablized me and i had a stroke while taking it. Like i said,he told me more in that one visit than the old haemo did in 11yrs. Oh and treated you like a patient and not like you were not next in line at the cattle market! Lol. Atb,tina.
Wow what a difference! If only we could all have that at the start, there would be a lot less traumatised people.
Very happy for you though 😉🤗
Fantastic news. I felt a bit like that when I changed hospitals. I went to an mpn forum in Birmingham. One of the speakers was a female heamotologist. My eyes started to fill up. Every sentence she spoke was as if she was talking about me.
I was extremely impressed. She was so in touch with how we felt and what we were experiencing.
I’m really pleased for you. What was the reason for your move?
Hi wyebird, i could never get a straight answer from the main haemo,if I asked about things like when I had my bmb done what was my allele burden it was like I can't find it in your records because it was a 'long time ago' or 'our records systems have changed'. He also never had an answer for my continual unstable platelets. More importantantly I believe they could have prevented the second stroke, just before it I was in clinic with agonising head pains and platelets off the scale and was told to carry on as normal,within a week or two the stroke struck and when i got admitted to hospital the stroke consultant was shocked by my numbers and the thickness of my blood. I never forgot that and with the way my numbers are behaving recently and haemo as no answers to it and being treated like just another number,it was a no brainer. The only one i will miss is the cns who was wonderful. Atb,tina.🤗
I have moved around a bit since my original diagnosis in 1994 and have been very fortunate to have had excellent care at all the hospitals I have been at. It makes such a difference when you feel that the consultant is on the ball and is prepared to listen to you and take time to thoroughly discuss your concerns. I’m glad you have now found somewhere to get the support you need as Dr Google can be good but can also be a bit scary at times and at other times just plainly incorrect. Best wishes, Jan
Yes you are right jan,when i was diagnosed, I don't think this site was about and I had to rely on Dr Google, I wasn't even given no booklets,my Gp even had it down on his records as thrombocytopenia(too few platelets) in the first year or two before I finally corrected him,My old Haemo appeared to be very dismissive of this site also. I found this site many years later.Hopefully the new Haemo's are becoming more aware of the condition now and my old Haemo like the dinosaurs will become exstint! Ha Ha. Atb,tina🤗
Yay! 💃💃I'm glad you found a doctor who cares and a nice office to go with it. Aren't you glad that you finally got frustrated enough to look for a new doctor? This gives me hope.
Oh yeah...I forgot to ask. Did you happen to mention your blue hands to him and if so what did he say?
Yes I did mel, and he said he'd seen it before,typically in people who's condition was not stablized, that why it was important to get my platelets finally under control,they took a range of bloods, so many, not had that many done since before diagnosis. Which was fun as i'm hard to bleed, they had 2 different vein scanners on me, an heat pad, 3 phlebotomists, 1 nurse off a ward and finally a Doctor and 7-8 needle marks to show for it! Hope your keeping well. Tina.🤗
Wow...I've never seen a vein scanner. 7-8 times is crazy. But I understand bc I can be a hard stick too. I never did get an IV catheter when I was giving birth because they couldn't hit a vein which is surprising because I'm so pale you can see my whole circulatory system right through my skin. 😄 Let us know what your bloodwork shows. ❤
Oh, you are so right mel about getting frustrated enough and I hope it as given you hope. Forgot to ask, hows things going with your mom? Tina🤗
Hmm I can't remember what I told you about my mom unless it was me telling you that I have a difficult relationship with her. I am trying to forgive her and have a relationship with her...it's been going ok so far. Thanks for asking. 😊
Yeah, that was basically it,just wondering if you were on better terms. Such is life hey! Tina🤗
Fantastic care and so pleased for you after a long time 11years. Thank you for your post as it is a marker for us all to achieve. A great experience and helping you be far better informed!
great news.
Wonderful news Tina ! You must feel much more at peace knowing you are now going to have such good care in a pleasant surrounding and not just being treated as a "number" . Really pleased for you. Fran xxx
Thanks fran,how are you keeping?tina🤗
That’s wonderful news! I’ve also had the same hematologist for 11 years. Sometimes I think I should go for second opinion but I haven’t yet. So glad to hear you had a great experience the second time around.
Hi Cja1956, when you start having doubts about your care it is time to think about a referral to another haemo. In my case it wasn't strictly a second opinion on my diagnosis which I have never doubted, it was more about is blase attitude to my unstable platelets and his attitude in general. If you have a good relationship with an haematologist that is good,mine had got so bad I couldn't even be bothered to talk about concerns I had, thats why I asked for a referral to another haemo. Atb,tina.🤗
Dear Tico, So very happy for you! I am so sorry you had to go through so much before finally taking a chance and it was a blessing. It could have been more of the same, but it wasn’t! I realized already as a young girl that I shouldn’t always trust the gods in the white robes. I’ve seen so many mistakes and lack of caring. With our particular group and illness, details are so important in order to achieve balance and quality of life. The human is so complex and we need personal treatment, since we are all so different! I do believe that someone should go after your last hematologist. He sounds completely incompetent and should actually be ashamed as should some of my previous doctors. It. Oils be the whole system in that hospital is poor. The fish always smells starting with the head! I am also a jumper. My platelets go up and down. I’ve had 5 TIAs and am on Anagrelid. Unfortunately, I can’t take Pegasus because of my Hashimoto thyroiditis or HU because of my inborn anemia. I have to watch myself like a hawk. I’ve done endless research, since my diagnosis. My first 2 hematologists had no time for me. 7 mins. a visit. 7 min to tell me I had cancer. “Look it up”, he said and stapled the papers together and asked me to go. I didn’t. I stuck like glue. (Have always been stubborn) In Austria, where I reside, cancer patients have one basic right, they are able to ask anything and demand that they be heard and answered. That also goes for the nearest relative!!! Such a great law, that I learned when my husband of 2 months was diagnosed with cancer. He’s now fine. I have many good questions and want them answered. Since the answers were not satisfactory, I changed 4 hemos in the first 6 months! My spleen had never been looked at until I paid extra at a private doctor. It was huge. (Now it is usually normal, except for when my thrombos jump up). The spleen is known at the blood cell graveyard! The fourth hemo I paid for, privately. €260 for the first visit and €160 for each follow up. At first, he answered some questions. After 9 months, I was still asking questions and he started to beat around the bush, avoiding any clear answers and or just trying to cover up his lack of knowledge in various areas. When I noticed that I started rethinking my care. Then, I was also blessed like you were. My 96 yr old father-in-law was very ill and was brought to the hospital just 5” from my home. There, he spent his last 5 days in the hematology, oncology unit just because there was a free bed. They were human. Really lovely and competent. Well, I called and made an appointment and went there for my first check and I had an experience like yours. Caring, capable and friendly doctors and staff and I didn’t have to pay a penny. The doctor was with me for 1’20”!!! She answered every Q and took 14 tubes of blood that were sent to 4 different labs to get the best results! 8 pages of results were ready 3 weeks later. Now we have a base line to work with. I also was given a booklet with a lot of info and a 24 hr emergency number. In the other hospital, I had to wait for 3 weeks for an appointment or go to the emergency room, if there was anything out of the ordinary. I will definitely look into the vein scanning you mentioned. Stay inquisitive, stay strong and be thankful for this new direction! We are all so happy to hear your news! Sorry for writing so much. I just wanted you to feel understood and supported and I wanted to give others more courage to dare to make changes and ask more questions! A big hug from Anag.
Yes patients should be able to ask questions and not be fobbed off and also given a look that says 'i'm the doctor,I know best'. Do not get me wrong, I think a lot of haemo's are probably more forthcoming but my relationship with my haemo had irretrievably broken down but I did have a good relationship with my cns but unfortunately they can't overrule the haemo. Atb, tina🤗
Thanks for sharing -so good to hear of such an experience. I was wondering about your platelets -you said they hadn't really settled -how much did they vary -was it variations of a hundred or so or were the variations greater or less than this? I'm interested as mine too vary and I'm wondering if I am on the right treatment. Thanks
Hi Bluetop, My platelets can vary by several hundred at a time. To give you a sense of this, one haemo i occasionally saw once said to me, "when I see you, your platelets are either in the basement or at the top in the penthouse suite"! The point he was making was the huge variations,I think my biggest variation between visits was once a whopping 450, that haemo knew it was a problem, it was that haemo that nodded at me when I asked why I wasn't tried on other medication, was it because of cost. That nod said it all. He was not my main haemo. It was because of my main haemo that I finally made my decision to move. What meds are you on and what are your variations on average. Atb,tina.🤗.
I just read this, How are you today? What treatment regimen are you own now? Thank you
Hi, absolutely fine thank you, Haemo still sticking with Hydroxy for the moment. Platelets seem to be on a downward trend,something i've never experienced before. Haemo been seeing me monthly. Last platelets results were:483,183 and 141. Surprisingly to me I was told to continue with same dose, 3 Hydroxy 6days and 4 on day 7. I thought he might have lowered it but he said my platelets are unpredictable and i'm high risk of further thrombosis. Atb, tina🤗
What difference NHS made in your MPN journey and how are you doing now? Hope your counts are now stable.
Hi neela. My platelet count is still jumping up and down between 100-200 every time I attend Haematology but i'm used to that, healthwise preety good except this pesky weather when I suffer extreme cyanosis to my hands and fingers. Next due at Haematology in 2 weeks time. Atb,tina.🤗
Thought It would be good to give an update
Hba1c up but good news otherwise 
saw emergency Gp today re stomach issues ,
Vaccine third dose experience!
