Copper treatment

[Birgitta-A]

Hi Chirley!
How terrible that you at once got a new infection - pseudomonas bacteria are not common but dangerous. Good with your strong WBC!

Too bad if you won't be able to participate in the cruise! We hope that you can manage the new infection and receive the copper infusion without problems, so you can leave the hospital and continue with your life outside the hospital.
Kind regards
Birgitta-A

[Chirley]

Well my infection is gone (hopefully......I didn't get fever or outward signs with my last one except a horrible wound discharge) but I'm still on oral antibiotics and the cruise might still happen.

I received a copy of my discharge summary and I was given a copy of my blood results as well and I got a little jolt. Despite having had my usual copper treatments less than two weeks earlier...all three cell lines were down. This has not happened since I've been having copper replacement. If I combine these results with the two recent infections I have to come to the conclusion that something new is happening in my bone marrow and it's not good. I haven't had a BMB for 4 years.

I think it's time to talk to my physician (who never orders blood tests) about the significance of my increasing bone marrow failure despite treatment. I've been given the facts very frankly from my neurologist, now I want some answers from my physician.

[Birgitta-A]

Hi Chirley!
Very positive that your WBC and the antibiotics managed to make the infection disappear hopefully completely!

You know all infections can make all counts decrease - this means that the infections probably came first and the low counts later.

Of cause it is possible that the bone marrow isn't making enough cells because it isn't working so well and the low WBC can't fight the infections.

We hope that the counts will increase now when the infections are treated.

Kind regards
Birgitta-A

[Cheryl C]

Good to hear from you again, Chirley and to read that your infection is gone. It's great that your cruise has come back into the realms of possibility. Will be interested to read how your physician responds to your questions about your bone marrow status.

[Lifeguard]

Chirley I've sent you a private message.

[Chirley]

Thanks...I've sent a reply.

Thanks also Birgitta for reminding me that infections can lower counts...I've been so stable for the last few years I'd forgotten the basics about the disease

I've decided that when I'm admitted tomorrow I'll ask for another blood test (like I said, my physician doesn't order blood tests) and as my infection has gone my counts should have recovered a little. If they have gotten worse, then, I know it's a primary bone marrow problem and not due to the infection. The physician and I will both know we have some talking to do if that happens.

Cheryl, I've got my fingers firmly crossed that the cruise is happening and I'm going to ask for motion sickness pills from my physician while im in hospital because they are predicting tropical cyclones in the area during the time of my cruise....I don't think I'm a good sailor! I don't care though.....cyclones or not I still want to go.

[Cheryl C]

Chirley - not sure of your timing, but the other thing to remember is after a course of antibiotics you may see a drop in white cells and neuts and then a gradual recovery to whatever normal is for you. Probably good to wait a week or so to allow your blood to return to its "normal" state.

[Chirley]

The problem with waiting a week or so Cheryl is that I will be straight after my copper infusions and the count will be (hopefully) affected by the infusion. It's how fast and by how much my counts are dropping after my infusions that is the worrying part.

As a matter of fact, I'm in hospital right now and I've spoken to the physician and he refused to order a blood test for today in any case but will order one in a couple of days time after I've had a couple of doses of copper. I really can't see the point but hey...he's the doctor! I wanted to know exactly how low my counts are dropping before my next lot of copper so I know just how careful I need to be on this cruise which will be the week I'm due for next copper treatment (will be postponing treatment for ten days) so my counts will be at their lowest. i could see by the look on his face that he was surprised that I had pancytopenia again within two weeks of my previous treatment. Hopefully it's just the infection and antibiotics causing the glitch but I'll have to wait and see. It's just bad timing with the cruise coming up but that's life!

I've decided that I'm going to my GP a few days before my cruise and just get a FBC to check my counts for my peace of mind.

[Cheryl C]

I understand, Chirley. I think you are wise to have another FBC just before you go. Peace of mind is very important!

[Chirley]

I received the results of the FBC which was taken after the third dose of copper and the ninth dose of steroids. The platelets and RCC were still low but the Neuts had increased. The physician tried to make out that this was a positive sign but I've been around long enough to know about steroids causing early release of neuts into the blood stream and I pointed this out to him....he said that "next time" he will order a blood test prior to treatment.

Well, that may be some time because....I'm tired!

I'm tired of hospitals, I'm tired of treatment, im tired of people invading my privacy, im tired of having my independence undermined, im tired of trying to organise treatment in a disorganised system. I don't know at this point in time if I'm having a hiatus or if im stopping treatment.....time will tell.

[Birgitta-A]

Hi Chirley!
You know when patients are as ill as we both are we sometimes get tired of everything.

I had this feeling today when I woke up with back pain because I had been sitting too long in the same position recording early memories for a book with my eldest sister the day before yesterday. I could harly move.

Then my throat felt so swollen (candida infection?) that I could drink tea but not eat anything.

I was thinking of asking the nurses from the home care next time they will visit me if I could move to the hospice and tell them that I don't want any active treatment like txs or antibiotics.

Then my youngest daughter called and wanted to come here with my youngest grand child (9 yo) and have tea and this made me feel better.

Hope something positive will happen to you too during this day!
Kind regards
Birgitta-A

[Chirley]

Birgitta, while I'm sad that you feel as tired as I do it's also comforting to know that someone out there also understands.

I spoke to my physician about stopping treatment and why and he agreed that I've been fighting a battle for some time and understood my need to stay away from all things medical even if the outcome is my death. I also spoke to my psychiatrist and he agreed that, for me, there was no light at the end of the tunnel.....it was going to be endless treatment, more often, with less efficacy into the future. He also agreed with my plan to stop treatment but made it clear that I should restart treatment at any time if I wanted to. He said that perhaps I will feel differently after a break and ready to face the battle again....at this stage I'll leave my options open. I'm afraid of feeling sick and having pain, not of dying. Im not cherishing every day I have but rather wishing every day away. maybe I'm just depressed.

I should be able to go on the cruise (if my friend can still go) but I think that after that I will start feeling the effects of missing the treatment.

Enjoy your tea with your daughter and grand daughter....

[Cheryl C]

So sorry that you are feeling 'down' Chirley. It's completely understandable with all you have had to deal with.

Do you think that even if you only give yourself a short break - say a month (or even shorter) at a time without treatment - it might give you time to come to a wise conclusion? I realise that my situation is by no means as serious as yours, but a year or so ago my haematologist recommended I try a 3 month break from the IgG infusions. 3 months turned out to be too long, but I managed 2 months and it was lovely not to have to go and have the cannula inserted, etc.

[Chirley]

Cheryl I realise that I am overwhelmed at the moment and I'm trying to be objective about how im feeling but I don't ever seem to get that "time out". For instance I just got out of hospital on Friday and I have to have my Jejeunostomy tube changed for a new one on Wednesday. (Apparently the doc just pulls this one out and threads another one in through the same hole into the small intestine without any anaesthetic or sedation....looking forward to that) This is a necessary appointment that I can't avoid because the sutures holding my current tube in have all pulled through the skin and I'm holding it in with tape, it's also a temporary tube that was meant to be changed to a permanent tube two weeks ago but was delayed because of the infection.

Then I have weekly in home dietitian visits for my enteral feeds, nightly rituals with connection to my feeding pump, fourth hourly tube flushes day and night and on and on and on. today I had the surgeons receptionist try to book an appointment for my stomach surgery as well as the hospitals occupational therapist wanting to make an appointment for a home visit to assess my mobility needs etc. It just doesn't seem to end.

Ill admit to being so down that I haven't given myself my overnight feeds since I've come home from hospital but that was just a short respite from being constantly connected to pumps and I'm restarting the feeds tonight. It WAS bliss to be able to go to the bathroom without hauling a pole with me. Back to reality tonight.

I've decided to cheer myself up with some retail therapy so I've just bought a new iPhone and tomorrow I'm going to buy a new wardrobe of clothes (none of my old clothes fit, they're too big). I hope the cruise goes ahead and I get to wear some of them.

[Birgitta-A]

Hi Chirley!
You are really tied up 24 hours a day by your enteral feeds except all types of treatment for the copper defiency! No wonder that you get tired.

My back is better - I have had problems the latest 50 years - and should know better than be sitting in the same position too long.

Instead I think my eyes are a little yellow - that can depend on iron overload damage to the liver. I will ask the nurse who is coming to take a blood test tomorrow if she thinks she could control the liver tests tomorrow or next week

Then I will receive blood two days after the blood test so I get home care twice a week - not much compared to you.

Hope you will feel a little better with your new iPhone and a new wardrobe!

Kind regards
Birgitta-A

[Chirley]

Birgitta if you decide to go to hospice would you refuse blood transfusions? I've decided that even if I refuse copper treatment I will still have transfusions because I really hate being breathless/lightheaded. I'd rather get an overwhelming sepsis. Is there some way hospice can help stop us feeling bad if we refuse transfusions?

Anyway that's for another day, luckily you have had a better day and so have I and each better day is a bonus.

My shopping trip was a very pleasurable experience even if I came home exhausted but surprisingly I didn't spend as much as I expected. There were some very good sales on at the moment. I still need a couple of items for my cruise if it goes ahead but I'll get them next week. My friend just rang to say her mother in law has ovarian cancer with spread to her lungs. I told her I don't expect her to leave her husband under these circumstances but she seems to think that she will still be able to come....I don't want her to feel any obligation. If necessary I can manage on my own (I think).

I was supposed to have my temporary J tube changed for a permanent one today and I'll admit to a little trepidation. I turned up at the doctors rooms, was taken into his procedure room, he set up for the procedure, tried to remove the old tube and...IT WOULDNT COME OUT.....what an anti climax. The surgeon said that the internal sutures haven't dissolved yet and if he forced the tube out he wouldn't be able to reinsert the new one because of the restriction and I'd have to be taken for immediate surgery. So I still have the old temporary tube in but I was given a kit with the new tube and the insertion bits and pieces to carry with me just in case this old one falls out when the internal stitches dissolve. Either I can get a local doctor to do it or my friend on the cruise to do it (she's a nurse) but after he explained it to me, I think I will be able to do it myself if I really have to.

I told him I didn't want the surgery but he doesn't think that's an option. He is adamant I need this surgery and is determined I have it. He also told me his last patient with this exact same surgery is very sick in ICU post op and she is 20 years younger than me with no other medical problems....so he isn't sugar coating anything......I think he was trying to make sure I tried to get the best nutritional state that I can before he operates....that's if I agree to it.

Im even going to see if I have enough stamina tomorrow to try my old hobby...baking. I used to love baking cakes, biscuits and bread but have been too weak to do much. Tomorrow I'll try....

[Birgitta-A]

Hi Chirley!
Yes, I think that I only want care and no active treatment like txs or antibiotics when I move to hospice.

My throat is worse and CRP had increased from 7 to 28 the last week. This can indicate some other type of infection - bacteria or virus. I don't want to start with antibiotics now because that will increase the candida-infection.

Good that your shopping tour was a success! Hope your friend will be able to follw you during the cruise!

Too bad that your tube should choose this moment to be a problem!

Hope you will be able to bake - I am a bad cook and have hardly ever been baking!
Kind regards
Birgitta-A

[Chirley]

Just wondering how you are now Birgitta. Did the CRP turn out to indicate an infection? I know sometimes it increases with inflammation like arthritis etc., I hope that was all it was.

I have another infection of the tube. I'm back on oral Ciprofloxacin with visits to the GP every second day.....11 days until the cruise 😒 he's worried about my pancytopenia, concurrent infection and cruise liners being known for spread of viruses etc. I feel okay but as you know it only takes hours to go from okay to not okay with infections and bone marrow failure. I'm so disgusted with myself that I can't even go a few weeks without some issue happening. I'm determined this cruise IS going to happen.

[JordanN]

Hi, Chirley!

I'm so sorry you are having so much trouble with your gastric tube! I'm hoping and praying and sending you all sorts of good thoughts and hugs that you feel better in time for your cruise! You definitely deserve some relaxing downtime looking at the ocean! And, please, don't get angry with yourself over these medical issues - you've had to deal with so much, and it is the disease, not you, that is the problem - you've dealt with it admirably!

Birgitta, I hope you are feeling better as well and that the candida and any other infections are gone! Sending hugs your way!

[Birgitta-A]

Hi Chirley!
You know that 28th March I suddenly felt dizzy and had nausea. Perhaps a mini-stroke. I called the nurses and said that I didn't want more active treatment like txs. I only drink tea with milk - I can't eat anything and don't want anything for the nausea. All drugs can lead to that I can fall.

Today a doctor and a nurse visited me and they will come back next day and thirsday. We will see when I can move.

Hope the infection will disappear!
Kind regards
Birgitta-A

[Cheryl C]

Birgitta and Chirley - I'm so sorry that you've each suffered another setback. Thinking of you a lot, and praying for you both. You are both wonderful, courageous ladies who give so much support and encouragement to others.

[Neil Cuadra]

I second Cheryl C's comment. We hate to see our friends having such a hard time. I wish we could zap away those infections long-distance.

[Chirley]

I am responding to the antibiotics and the infection has improved already. The Doctor was quite happy with my progress this morning. Looks like just another bump in the road for me.

Birgitta, there is nothing I can say. Words fail me. I'm sure you know how I feel. My greatest wish, of course, is that the disease gets better but that's not likely to happen, so failing that, I wish you peace and comfort.

[Mseth]

Hi Birgitta, hope your nausea is improved a bit and you can eat something. Do take care, I wish you peace and comfort.

Chirley, great that your infection is improved, hope you can make it for the cruise!!

[Cheryl C]

Yes Chirley - great news! You must be counting the days before you get on that ship...