How is the bone pain, Chirley, and the other symptoms you mentioned back in July? Was just thinking about you today and hoping you were OK as you sounded quite unwell in your last post.

Copper
 

Hi Chirley,
We hope that the steroid helped you to tolerate the copper!

Positive with the Digoxin effect and that you now can drink wine with dinner.
Kind regards
Birgitta-A

Hi and such relief. I've had my first dose. I've still got the rash with itch but not quite as severe and not O2 desat, no real low BP and feeling okay. My steroids have been given pre, during and post infusion. The Doc is a little concerned about the massive steroid doses and still getting an allergy reaction but also relieved that I'm feeling okay.

My blood tests are ok. Hb 90, total WCC 1.9 don't know neuts or platelets. Digoxin level is low but he's not going to increase the dose at the moment, so all is good. I'm sharing a room with a lady (post mastectomy) with an infection on intravenous antibiotics....not so sure about that :confused:

Cheryl, the bone pain comes and goes still, I don't know what it is. The hospital didn't have a bed for me when I got here yesterday and I had to sit in a waiting room chair for a few hours and my hips and back were hurting terribly (deep throbbing) by the time I got to the room. (The nurses said my doctor was very rude to them about it and I never said anything about the wait......he doesn't miss a thing...maybe it held him up from other appointments).

Anyway, I feel a weight lifted off my shoulders that the first dose is over and so far not too bad. 2nd dose today at 2pm.

Copper
 

Hi Chirley,
Too bad with the waiting before copper infusion when you had an appointment!

Good with your HGB and WBC - as we know you manage with very low neutrophils. They are probably about 0.8 that is low for most patients.

Hope for the best during next infusion!
Kind regards
Birgitta-A

Thanks Birgitta. Day 3 today and NO reaction yesterday, I'm so happy. BP has dropped a little to the 80s but feeling okay, retaining fluid but feeling okay. Pulse is in the 40s but still feeling okay.

My roommate also developed diarrhoea and ? Influenza....needless to say I wasn't very happy about it but they've moved her out because her Insurance cover didn't cover her for any more time in this hospital. I wonder who will share next? Ebola? Sometimes I wonder about their Infection Control procedures.

When they cleaned the room after she left they didn't even wipe down her IV pole or TV, inside her bedside locker or bedside chair, or change the curtain....eek.

Maybe I have obsessive compulsive disorder but it's served me well and I've avoided having too many infections with little to no neutrophils on occasion. Hospitals are the germiest I can think of.

My Doctor is looking very tired still. His mothers death a couple of weeks ago (unexpectedly) was a major blow and reshuffling his work at four hospitals and his private rooms must have been a nightmare too. Hopefully he will be feeling a bit better when he has a chance to stop and grieve properly. What a horrible life they must live.

Update, only lung infection and cellulitis....coughing fit to kill.

Infections
 

Hi Chirley,
Too bad that a patient with a severe disease as you have can't be isolated during treatment! To cure your infections will cost a lot. As we both know you get more infections when you get steroids.

I am a little obsessive compulsive too concerning infections and I think this is important for many patients with MDS. When I come to the ER with fever I am treated like a heart patient and all tests, X-ray and so on are taken at once. Then I am moved to a ward and isolated.

Hope you can fight the infections!
Kind regards
Birgitta-A

I'm obsessive compulsive too when it comes to being unnecessarily exposed to infections. I don't blame you for being upset.

Great that your copper infusion is going so well.

Oh, I don't have the infections....my new room mate does...she's 97 with CLL. I feel very sorry for her but the room is full of visitors day and night and then the infection thing too...geez!

I did react to yesterday's copper but not too bad. The worst weal is on my leg, it's turned a dark purple/black and looks as if the area might die.

Last dose today. I can't wait to get out of here, everyone is coughing. Swine flu is rampant, it's an epidemic at the moment and I wasn't allowed to have the flu vaccine for the last few years.

It's so much safer at home.

Now they've just come in and told me they've forgotten to book discharge transport and it's too late and I'll have to stay the weekend...not bloody likely! Looks like it's a $200 taxi ride (or more) at my expense for my discharge this afternoon....not happy but better than staying here....

I'm going home in two hours and they've just come in and told me I should be on isolation precautions for neutropenia and on a neutropenic diet! Wow! A little bit too late I think!

Oh well. Maybe next time.

Neutropenia
 

Hi Chirley,
Do remember to remind them of isolation precautions for neutropenia and the neutropenic diet next time you will come to the hospital.

Hope you didn't get any infections!
Kind regards
Birgitta-A

I've just had my first Neuro review in two and a half years and the news wasn't good. It seems as if the copper isn't getting past the blood/brain barrier and while it's helping the bone marrow failure it's not preventing the Neuro degeneration.

I wasn't shocked. It appears that to get into the Neuro system I'd have to have such huge amounts it would be lethally toxic to my other organs. So, now it's just a matter of when I decide to cease treatment. I know I would much rather die from BM failure than Neuro disease so that is going to be my option. But I have to keep treating while my parents are still alive and needing me, so it will be a while yet. I hope I have that time available.

I hadn't realised until this exam that my left arm had started "tightening" and I was unable to relax it. My voice has started to become affected and my swallowing isn't always coordinated. My blood pressure has become a big issue with my systolic rarely above 90 and usually a lot lower. I sometimes don't leave the house for weeks at a time and sometimes can hardly even manage to make myself a cup of coffee so I can go a whole day without eating or drinking. I have days that I'm so weak I can barely manage to shower and toilet myself.

The silly thing is that my family don't even notice. I swear that if I died theyd only notice because of the smell or because I wasn't there to sort out their bills or appointments. Sounds selfish, but sometimes, I'd like someone to ask me how I'm feeling!

Sorry.....feeling down, due for hospital on Monday, it always makes me feel depressed.

Copper
 

Hi Chirley!
What sad news! Even if you are depressed you have to eat and drink. I am sure that you can get help in your house with these things because if we don't eat we will get depressed due to low blood suger.

I have to accept that I have to get help with the cleaning of my apartment. I dare not go to my summer house to clean it and shut it down for the winter. Last year I got an intestinal infection with very low neutrophils and ended up in hospital with fever during four days. My daughters will shut the house down.

I got three years with Thalidomide and one year with Revlimid - now I don't think there are any drugs that I can accept because I am more afraid of adverse effects like nausea than having a shorter life but I am much older than you - 75 yo.
Kind regards
Birgitta-A

Thanks Birgitta but it's not depression stopping me from eating or drinking, it's being unable to prepare it or eat it. Some days I just can't physically get up to get a drink. I know I should tell my doctor I need in home help but then my parents, who live next door, would start interfering and I just couldn't stand it.

I vomit just about everything I do eat now so I usually don't bother much any more. Just a piece of toast or a drink of Milo or something.

I eat much better when I'm in hospital because they do the cooking! However, it still doesn't stay down.

I have an appointment to see a gastroenterologist because they think my stomach is slightly twisted again but I feel too tired to bother.

When my Aunt and Uncle passed away in Sweden they left their summer house to my cousin Mary and her husband Robert. He is a city person so Mary spends the summers there by herself. I forget whereabouts it is but I've been there, it's on a little lake and it's very beautiful. I know that Mary loves her "solitude" time and her break from her husband and being close to nature....to be honest, Robert is "hard work". They live the jet set life and travel the world constantly at his insistence. They've done this for 40 years and she just wants peace but he still wants 5 Star hotels and fine dining restaraunts. We never know when they are going to just "pop in" because they were in Tahiti or something. Just when you think you're safe on the other side of the world..the relatives still find you!

'm sorry to hear that the Revlimid isn't working for you any more. It seems that sometimes we just have to be thankful for all the treatments that have worked

I'm not throwing in the towel yet...there's plenty of life left in this old girl...I'm just saying...some good news would be welcome for a change.

I am concerned for you Chirley. Very sorry to read of the state you're in. I hope that when you get to hospital you will have the strength to let us know how you are getting on. Sending thoughts and prayers your way.

Copper
 

Hi Chirley!
Hope your stomach isn't twisted though it is good that you now know the symptoms if this should happen.

As far as I understand your father is OK and would tolerate that you get help when you need it. I don't really understand how your mother can prevet you from getting the help you need. We can't feel better if we only eat some toast and "a drink of something".

I know that you are aware of drugs for vomiting but of cause your stomack has to be examinated before you take that kind of drugs.

Interesting that you have visited Sweden - I participated in a conference in Melburne 1997. It was a very positive experience.
Kind regards
Birgitta-A

It may sound selfish but please make yourself a priority and know we do care how you are doing. Unfortunately, we are not in a position to really help.

Maybe your GI doctor can give you something help with the motility of your GI track. Sometimes the valve (my term) in the stomach where the food leaves gets constricted and food does not pass out of the stomach. I hope he can help you with this so you can keep up your nutrition.

Thank you. I'm in hospital and the steroids are working...I'm hungry. I can't eat much..a mouthful here and there but at least I want to eat!

No wonder I've been feeling bad Hb and BP systolic the same on admission ...both 75. BP is up to 85 with fluids and steroids and feeling much better. My Hb will come up with the copper.

I'm actually pleased to be here. I feel I need to be looked after. No trying to cook or make the bed or clean the floor, (I might even get that home help after all)...in fact I'm not allowed out of bed without a nurse with me. I'm feeling slightly pampered and i usually try to be independant but this time I'm accepting the help gratefully.

I agree, I'm being hard on my Dad, he's not the problem.. It's my Mum. If she finds out I've been sick she "competes" and throws fainting attacks and vomiting attacks and screams with pain and generally makes my fathers life very difficult because she doesn't cope very well with my father not concentrating on her every second of the day. She will ring me and whine about the horrible nurses at dialysis and how they did this wrong and that wrong and how this patient said what, and how horrible her driver was and how much pain she's in and she never has a positive thing to say, even about my father who waits on her hand and foot. He does all the house work, washing, ironing, cooking, grocery shopping, mowing, he serves her meals to her and clears her dishes for her. He has done this for many years. He makes her bed. She literally does nothing.

If I were to get home help, my mother would be even more critical of my father because she would criticise him for not helping me but at the same time, if he did help me she would throw even more tantrums than she already does. Hes over 86, he deserves a break. Mum has a degree of dementia but it has just accentuated her personality disorder that she has always had.

I can't move because legally we all own the two properties jointly. It has tax and pension and Will legality issues.

I'm having the dreaded brain and whole spine MRI today...claustrophobia here I come but they assure me I can have some Midazolam.

I think the least I'll do when I get out is try to get Meals on Wheels (if I can sort my stomach issues out). I know I'm really past being able to cook my own meals.

Home help
 

Hi Chirley!
Good that you at last have persons around you that take care of you! Hope your BP and counts will continue to increase! "Meals on Wheels" seems to be a good solution om one of your problems.
Kind regards
Birgitta-A

Your life is pretty complicated so don't be shy about asking for help. I too think meals on wheels may be helpful.

Hope the MRI went well.

MRIs results back...not so good...I have a new lesion..this time in my high cervical area which affects my diaphragm, breathing, oesophagus, arms, stomach etc.

I'll be forthright. After the doctor left I had a bit of a self pity cry.

I didn't have a good night either...vomiting, low blood pressure, pulse in the high 30s.

All in all, my lovely Doctor didn't have his happy face on. I knew it wasn't good as soon as he walked in.

I've just been told I have to go for another type of MRIS in 15 minutes with some ? Epidural injection. I just wish it would go away!

Hi Chirley,

You've been through so much and handled each adversity with such strength and resilience. I really wanted to post to say that my prayers and thoughts are with you.

Keep strong Chirley and keep on fighting the good fight!

Rachael

Thanks Rachael.. I had the second MRI. No epidural needle. I'm proud of myself, no sedation.

I haven't got the results but I'm not proud of my reaction, I'm not handling the news well. It's not so much for me but for my poor old Dad. How is he supposed to cope with Mum the way she is, my brother being emotionally stunted and me being potentially either totally incapacitated or dead?

It's not something an elderly man should have to bear.

I think my Physician is liaising with the new Neurologist, the gastroenterologist and the discharge co ordinator to make sure that I won't slip through the cracks this time.

I think it's time I start living life instead of waiting for it to finish....if you know what I mean.

Hi Chirley,

I use to work in aged care management and there are great services offered by community groups run by large non for profit organisations whose role it is to support parents like yours who need help not only in cleaning but with supporting your Dad and getting him out to socialise and living life well. They also will put in wonderful care plans for your mum to meet her needs. I had a neighbour who mother's dementia was putting a heavy load on her father's health and well-being, unfortunately he refused to put her in a dementia specific home and wanted to care for her. I put the daughter on to the non for profit community group I worked for and it transformed their whole families life. Another service was a overnight respite service which gave a carer a few nights off to rest properly. These respite homes were amazing and looked like a glam B&B and the service was specifically tailored to the clients needs. It was so nice I would of stayed there!

They also can help you with your care needs and meal preparation, even taking you to your medical appointments. They'll take you shopping so you have your independence too.

Financially these services can be offered for free in certain circumstances. As it is this service can cost between $15 - 30 a week. This may differ between different organisations fee schedules.

Cheers Rachael