Just here to blow off steam..... For the last few days....maybe even since the splenectomy 2 weeks ago, I feel like I've been kicked in the left kidney area. Yesterday after an hour journey in the car, with the kidney area supported on a folded blanket, it was somewhat uncomfortable by the time I got home. I have been eating paracetamol on a regular basis for 2 weeks. It helps a bit but not much. Today I decided to test my waterworks. It showed BLD-SNG ERY_HB 25+ hemolysed. Now I'm no nurse or doctor and maybe my kit has not been stored correctly and I don't know what +25 means but I know its a couple of stops up the scale from what it should be if the dipstick is correct. I phoned the hospital who 'advised me to go to the surgery, see a doctor or nurse pronto to get it checked professionally and maybe I would need some antibiotics for an infection. Get back to the hospital if necessary'. Brilliant, quick advice from a specialised cancer nurse who knows I wouldn't phone for advice without good reason. So I phoned my surgery....
No appointments today....that's good then....so I quietly stood my ground and got an appointment with the practice nurse who is allowed to issue prescriptions. She found no trace of anything and I explained about the pain. What I got was 'there's nothing in the sample'.....(so go home little lady and stop wasting my time, and what are you doing with your own test kit!!!) - nb. the hospital gave me a test kit during chemotherapy when I kept getting infections and I didn't want to keep visiting the surgery unnecessarily!). So with absolutely no sympathy whatsoever for the pain, and feeling like a hypochondriac and with no antibiotics, I left. I didn't feel like bothering the hospital again, although I know I will be in trouble on Monday for leaving it, but I haven't the heart. Back to my hot water bottle and paracetamol. I know the hemolysing is supposed to have stopped, but I feel it is back. I have the shakes and the radiating pain in my jaw which presents when it is back. My chest vibrations too. It could just be that I am coming off the steroids pretty quickly as well which doesn't help. I feel a big pity party coming on.
Showing posts with label HEMOLYSING. Show all posts
Showing posts with label HEMOLYSING. Show all posts
Thursday, 5 August 2010
Thursday, 8 July 2010
AIHA AND SPLENECTOMY
Another few months have passed and I am so tired. We managed to get to Wales to see the family in May and it was really lovely. Family really is everything and those granddaughters of mine really know how to make me laugh. I hope they know how much they are loved....my daughter too.
I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.
I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.
I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.
I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.
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