Day 24 post transplant–Climbing the mountain called stairs

Yesterday was a good day for me especially when I had to go upstairs to the toilet. I know exciting isn’t it, but I actually managed to walk up the stairs relatively easy. I still held onto the banister, just in case, but I managed to get to the top. I didn’t have to take crawl on my hands and knees to get to the top, which I have done in the past. I didn’t have to take one step at a time, by that I mean put my left foot on the first step, then my right foot on the first step and carry on up the stairs in the same fashion. No, this was a proper walk up the stairs and getting to the top without being that much out of breath and without having to virtually pull myself up by the banister.

I felt as though I had really achieved something, I didn’t get a medal awarded to me or a cup though, which was a shame. It was enough to know that I had the energy to make it to the top.

Today though is a different story. I’m back to taking it slow up the stairs and being tired when I get to the top. It was good while the energy lasted and I hope to have more days like that. I know I’m going to have my good days and bad days. As time goes by I’m sure I will have more good than bad until I can eventually get to some kind of normality again and start to get out of the house etc. Who knows, I may even be able to run up the stairs one day!

Day 23 - catch up talking about day 21 & 22

I thought I should catch up on the last few days.

Thursday day 21 post transplant:

I went to the hospital for 11am via the taxi ambulance. It was just for a blood test to see how I was doing. I also wanted to find out about my sore eyes, the lung issue that Chester hospital had mentioned and what I call my Hobit it feet (my swollen feet). It turns out that my eyes stinging and feet problem are nothing to worry about, its quite common and due to my body being very tired. My feet get gradually worse during the day, but are OK once I have rested them overnight. They listened to my chest and also heard what the doctor heard in Chester. My right lung was taking in less air than my left. They couldn't hear any fluid, but with my feet swelling, there could be a possibility of it being the start of fluid up, so they sent me for an X-ray. The doctor examined the results and compared the X-ray with a previous chest X-ray. It turns out my right lung is slightly smaller than my right as it is being pushed up by my other internal organs. Apparently not that unusual! Certainly nothing to worry about which is good. I'm glad I checked on these things though as I think it is always best to make sure, rather than worry about them.

My next appointment is on Tuesday, so a few day off, which is another sign everything is going OK. I also have to have my pentamidine which I have every two weeks now, rather than monthly.

Friday day 22 post transplant:

I didn't do anything yesterday, I felt rather tired most of the day. My brother and sister in law went home early afternoon. Talking about that, my brother Nigel rang me in the evening, and asked when did my other brother Nick get married, as I said my brother and sister in law! I meant my brother in law and my sister in law, not my brother! They are still my brother and sister in law, and I'm pretty sure that is how you write it when reffering to them. It is charitos sister and her husband. Pilar (her sister) along with her husband Chris hence, my brother and sister in law. It doesn't seem right to refer to them as brother in law and sister in law; maybe I should to stop an confusion!

Today, day 23 post transplant:

It's only early morning, but I'm feeling relatively OK today. Not that I have done much as usual apart from, get up out of bed, have a shower, take tablets, eat breakfast and write on blog. I might wright more later, if anything exciting happens, who knows I might win the lottery!

Day 20 - Family

Today has been a day off from the hospital visits. I spent the morning doing nothing really; watched some TV and browsed on the internet.

After lunch I felt like I needed a sleep, so went to bed at about 2:30pm. I didn't wake up until gone 5pm.

My brother and sister in law arrived at about 7pm and so spent the evening talking to them. They are stopping a few days, but won't see much of them as I am off to Liverpool tomorrow.

I have a few things to ask/tell/discuss with the doctor. My eyes have been stinging and are a bit blood shot. The doctor at Chester examined me and told me that my right lung wasn't working as well as the left; although she couldn't hear any bubling or sign of infection, it needed to be kept an eye on. Now just before going to bed after struggling up the stairs, I got undressed for bed and noticed that my feet and legs are swollen. At least I will have something to talk about with the doctor!

Day 19 – Blood

There isn’t that much to say today, I’ve spent all day at Chester Hospital receiving two units of blood.

I feel much better after receiving it, more energy than I had before.

One thing that did become clear is that Liverpool and Chester need to calibrate how they measure the bloods. I had a different HB count in the afternoon than I did in the morning yesterday. The other blood counts were different as well. Chester reports them higher than Liverpool.

I was going to ask them about this when they last took an Igs count, which measure my paraprotein it was different than the one I got at Liverpool. My paraprotein levels are lower at Liverpool. As I said to Dr Salim, I’m better off going to Liverpool as my levers are lower and therefore have a better chance of the STC working! Really this shouldn’t happen and I’m sure that both Hospitals will say that they have the correct results, but the both can’t be right. I’m not sure how often the equipment is calibrated, but for someone like me, the different between a paraprotein level of 15 and 22 is a big jump. I can’t remember the exact figure, but it was something like that!

It was good to chat the staff at Chester and to meet the new nurse Caroline. I always have  laugh with the staff and I’m sure some of them are as mad as me. They have a good sense of humour.

I don’t know when I will be back there again, it will depend on how often I need to have blood or platelets etc.

Day 17 & 18 More Hospitals and wonderful friends.

Yesterday the 23 October was my Day 17 post  transplant. I was feeling much better after the fiasco of being sick and dehydrated. The IV fluids made me much better and I had been eating and drinking OK, but still need to drink more. I found that I can drink fruits of the forest cordial as almost everything else makes me feel a bit sick.

My sister Carol and her husband Mike came all the way up to Chester from Southampton and stopped off at our house for a few hours before going on for short breaks in various hotels.

It was lovely to see them and to catch up as we don’t get that much of chance to see each other, being so far apart. They didn’t stay too long, as they realised I was getting very tired and needed my rest, which I was grateful for.

Today (Monday) I had an appointment at Liverpool at 10am again and the Taxi/Ambulance turned up perfectly on time. The driver was a lovely guy and full of stories from his life and experiences. To be honest I could have spent ages just chatting to him. The only thing I was worried about the the cleanliness of his car, although he said he cleaned it regularly, I’m not sure how regular it was! Once a year is regular isn’t it!!! We had the same driver take us home and Charito fell asleep as usual, whichever vehicle she is in, she falls asleep, I can’t blame her, she does so much I’m not surprised she takes every opportunity to catch up on her sleep. Not quite sure how she managed to sleep through the drivers anecdotes, of which there were many, but she did.

Whilst at the Liverpool hospital, they took my blood and said I could go home, which I was surprised about, but they said they would call me if I need anything done and could come back in. I don’t think they realised how far away we lived and it wasn’t just a 10 drive in. As my bloods were relatively low on the last count, 8.1, I said I would rather wait and see if I needed any blood. Thinking that they would get the result and if I needed any blood, give it me while I was there, yet again though, I was wrong. My blood results showed that my HB level had dropped to 7.1 and I would need a transfusion. However they said I could come back tomorrow as they would need to do a cross-match and arrange the bloods. So even though I waited, they weren’t going to do the transfusion on the day anyway? Wish they told me that before I waited though.

Anyway with me needing blood and having to come back in, I asked if I could have that done in Chester as it is nearer to me, only 10 or 15 minutes away from were I live. So they said that shouldn’t be a problem and they would give them a call to see if they could arrange it. She went away and came back about 10 minutes later to let me know that would be OK and it’s been arranged for first thing on Tuesday morning.

I asked about my next appointment at Liverpool and that’s been arranged for Thursday at 11am. So I have tomorrow off I thought.

We got home safely and Charito woke up just before we got home, not quite sure how she does that, but she always manages to wake up just before she is supposed to, even when on a bus or train!

Not long after having something to eat, I got a phone call from Chester Hospital, it was one of the my regular nurses and it was good to hear from her. She was confirming the Tuesdays appointment and also wanted to know if I could go in today, so that they could take some bloods and do a complete blood test and match ready for my bloods. They have to treat me as a new patient now that I have a complete new blood system ( a working one hopefully). If I didn’t have it done today I would have been at the hospital for a very long time tomorrow.

So all I had to think about now, was how do I get there? I couldn’t arrange an ambulance at such short notice, I definitely couldn’t drive myself and Amy my daughter is on holiday this week. So I turned to my adopted family and close friends who live next door, Chris and Jodie. I wasn’t sure if they were in or not as their car wasn’t in the drive, but Chris was in but Jodie was out. I asked Chris if he could give me a lift to the hospital and without hesitation he said yes. They have always told me to give them a call if I need to, but I don’t like relying on people even though I know they don’t mind. Not only did Chris give me a lift to the hospital, he insisted that I give him a call when I finished and he would come and pick me up. Sometimes friends are better than family, but I wont go into that (I will write about that in my book, My Life with Myeloma the true story).

I can’t wait to win the lottery so I can thank Chris and Jodie for everything have done and do for me. They both mean the world to me and Charito and I hope they know how much we love them both.

Tomorrow I’m off to Chester, probably all day for two units of blood and then Thursday back at Liverpool. I must remember to book the Ambulance/Taxi for Thursday.

Day 15 and 16 - Hospital and home

Sorry for not posting anything yesterday, but I wasn't very well. After being sick most of Thursday and throughout night, I couldn't drink anything and I was very dehydrated. My first appointment at Liverpool was at 10am and the taxi ambulance picked me up at 9am to take me to the hospital. I was very exhausted and use a wheel chair once I got to the hospital to get up to the day ward. Once I was there and they asked how I was and I told them about the sickness andthatI would need some IV fluids if they could give me some. Normally You have to wait for the blood results to come back before they give you anything, but as It was clear I was dehydrated and Ben sick, they put some fluids on a drip for me over four hours.

They took the usual bloods and I had to wait about an hour for the results to come back, as expected they showed my eurea levels were low and I needed to drink more! Apart from that my levels were good

HB 8.1
PL 90
WBC 12.1
Neuts 9.3

As you can see my neutsaresky high. After the doctors had reviewed my bloods, I was told not to take the ciclosporin until Monday as my levels were too high again. To me that was good news as they are horrible to take!

After feeling a bit better after the fluids, I arrived home and received a phone call from the doctor telling me that they had reviewed my bloods from an earlier test and my ciclosporin levels were OK and should take them as normal. So my elation about not taking them didn't last long.

The night went relatively OK without sickness, it helped after they gave me the fluids they also gave me some IV anti sickness. The nurse recommended I take the anti sickness tablet on its own first about half an hour before taking the others and that seemed to help.

Today has been a good day and I have managed to eat and drink and feel much stronger. Hopefully I will get a good nights rest and feel even better tomorrow.

My Sister and brother in law are coming to visit tomorrow so I have something to look forward to as I haven't seen them for ages.

Day 14 - First night at home

I don't know if it was because I was more relaxed at home or some other reason, but I wasn't well last night. After coming home and settling down after charitio made me something to eat, I caught up on a bit of TV.

After I sorted all of my tablets out for the night and went to bed. The one thing I didn't do was take the anti sickness ones. The reason being is that I wasn't on the anti sickness pump yesterday at at all and I didn't feel sick, so thought I could get away with out them, I was wrong!

I was sick two or three times in the night and haven't felt well most of today. Spent the morning on the sofa and went to get a drink and immediately was sick. I've taken the anti sickness today but obviously it isn't as good as a pump as I was sick. My temperature has been fine, so just need to get over this sickness and I will be OK.

I just had to have a break from writing this, to be sick again! Thank goodness for plastic bowls.

Apart from the sickness I'm doing ok. The pain in my back and ribs was quite bad this morning after the rough night though. I did discover though that if charitio rubbed my back it made it feel much better which enabled me to go down stairs to take my tablets.

I haven't eaten anything so far today and not sure I will while I keep being sick, but will try and drink some more. The problem is at the moment it just keeps coming back up, I will just take it easy and slow.

Day 13 - Tablets to take home

I just had to take a picture of these. My tablets to take home with me.

Mmmm yummy!

Day 13 post transplant – Home

Well I can’t believe how well I have done got through this transplant without any issues (yet). I’m going home today at about 3 or 4pm, I have to wait for  Amy my daughter and Charito to finish work before they can pick me up.

This morning I woke up with the pain in my back again, which is hardly surprising the way my bloods are working overtime at the moment, so that was expected.

I have my Cyclosporin reduced again to 275 as my levels were too high, another good sign thing are working properly. I had my shower before having my bloods taken today, I will wait to see what they bring back today. I’ve also had my Pentamidine which I have to go into a room on my own for as it is yucky stuff for anyone else to breathe in. I knew I was having all of this done this morning, so I wanted to get up early and get showered so I had everything sorted. I even had another good breakfast ready for me once I had finished my Pentamidine.

The staff here have all been wonderful as usual and I can’t thank them enough, I know I haven’t been one of these patients that keeps pestering them (I think!), but they have always made sure that they apologise if they couldn’t get to me straight away after buzzing etc. I know they have had some very ill people in and not everyone is going through the transplant process as well as I have, some people get all of the symptoms, such as sickness, mouth sore etc and I didn’t mind waiting while they sorted out the more sick patients.

It was funny this morning when I buzzed at 7:30ish for some pain killers. I was one if not the first to start the buzzing off this morning (once one starts everybody buzzes as usual). I said about being the first and the nurse asked if I had a good nights sleep, which in all fairness I did, apart from waking up a few times in pain with my back. We didn’t have the buzzing all night from the usual culprits, I know that one of the nurses was going to mention it to this particular patient about showing some respect for others and trying not to buzz throughout the night and keeping everyone awake. There had been a few people complain, including myself about not being able to sleep because of the constant buzzing going off. I have no idea who it was or which room they are in as confidentiality is very important here and they really do stick to it. So even if I knew every patient from the day ward, I would know if they were on this ward with me. I have told them though that I don’t mind people knowing or contacting me and to feel free if they wanted to let them know about my blog. If it provides some help in any way to someone else, then it has been worth writing all of this that I do. Back to the story, this morning when the nurse brought in my pain killers I asked for at 7:30 I mentioned again about my Pentamidine and I was going to have it yesterday, but then arranged it for this morning and wanted to make sure that the morning staff knew I was going to have it, so it wasn’t delayed and possible stop me going home this afternoon. I just had in mind exactly what I wanted to do today.   Alarm went off at 7, take pain killers, wait for them to kick in, have shower, take breakfast then Pentamidine, all sorted. I said this too the nurse and she said and manage the nurses schedule, or something similar. …. I really wasn’t trying to organise them, but I know how easy things get lost in the mix, so if did seem as though I was trying to organise them as well, I am sorry. I must be feeling OK to jump back into my managers head and go through check lists in my brain etc. Am I the only one that does this and write to do etc or am I really that strange… rhetorical question and doesn’t really need an answer before I get lots of ‘Yes’s’ in my comment box ;-)

One other thing I must comment on as well that I have mentioned and even complained about in the past. The cupboard room that they normally put people, you know the one I’ve mentioned that had the old TV’s  and Christmas decoration as well as a couple of bed for chairs for patients. Well I’m glad to say that has had some improvement and is looking more like a waiting/medical room now. It has some new chairs and all of the old stuff that was stored their has been removed. I was talking to the ward sister and have been told there are more changes going on with more storage space available to them.So I’m glad to see things moving along and getting better for the patients. It does make a difference knowing that we are in a nice clean proper place and not just stuck in a room that feels like a cupboard and pushed out of the way until required. It was almost a pleasure to have my Pentamidine in their today, in one of the relaxing chairs listening to music as I breathed Pentamidine in.

So now all I’m waiting for is my dressing to be changed on my line, my blood results to come back OK which I’m pretty sure they will and then to get picked up.

I will sort out all of my things soon as well, although that wont take long and I really need to the suitcase to do it properly so I might just wait.I will see how I feel after.

My next blog message should be from home where I will have a proper internet connection – Hooray – I’ve had nothing but problems with it here, having to disconnect and reconnect through tethering and wireless etc. How did we manager without the internet before!

See you at home x 

Day 12 Blood Count

They took my bloods today, just in case I needed to have a cross match tomorrow; however the blood results have come back and they are even better than I had thought they would be.

HB: 10.2 up 1.0
PL: 39 up 15
WH: 12.0 up 4.2
Neuts: 7.6 up 3.2

I really can’t believe my Neutrophils they are better than they have been for a very long time. When I came in, they were at 0.7, now 7,6 WOW The normal (Normal as in doesn’t have cancer) is 7.5, I am better than most people at the moment! I think that deserves a double WOW WOW. I’m under no delusion though that they will no doubt drop again. The are in the position they are due to the GCSF and the reason why my back has been hurting. I’m sure they will drop right down again pretty soon; however for now I’m happy they are up to a level where I can go home without needing any bloods etc.