Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello everyone!
Finally some good news! I saw the new consultant yesterday and he was WONDERFUL! He actually listened to what I said and gave me some feedback.
He has said that I should have gone on epo injections when my haemoglobin dropped below 100. (It had gone down to 80 and the other consultant had done nothing) He couldn't understand why she hadn't treated the anaemia.
As regard dialysis and transplant he said the figures were certainly bad enough to warrant having an assessment done for my suitability for various options. He thought it was likely that dialysis would be required in the foreseeeable future. Because of me having had major surgery to my abdominal area previously and because of other factors like probable lack of space inslde me he thought haemodialysis was the most likely option for me. However, everything will be assessed.
As regards transplant he did not rule that out as an option but said I needed a proper assessment done regarding risk factors, etc.
After several years of being treated like an imbecile by the other consultant it felt so good to be treated like a human being.
He gave me a choice: he would either organise the assessment in the next 3 to 4 weeks and then I could revert back to the other consultant dealing with me OR I could have the assessment and he could continue to deal with me. The latter would necessitate me making regular trips off the island where I live to see him whereas, if I decided to revert back to the other consultant, she could see me locally. I told him I definitely preferred to see him as the other doctor had upset me so much. So things are getting sorted at last!
It is hard to know that my kidney function is as bad as it is and that, after all these years, things have come to a head. For so long I just tried to get on with my life and didn't give much thought to my kidney condition. Now I am faced with the reality of the illness and the havoc it has wreaked on my system.
The future is somewhat daunting but at least I now hve a consultant that I feel I can place my confidence in as a doctor. I almost hugged him at the end of the consultation! I was just so happy.
I know it will make life harder and more expensive for me to have to travel by boat and taxi or public transport to see him, but it will be worthwhile if he can give me proper help and treatment.
Glad to have something to be happy about!
Best wishes to all,
Patricia.
Finally some good news! I saw the new consultant yesterday and he was WONDERFUL! He actually listened to what I said and gave me some feedback.
He has said that I should have gone on epo injections when my haemoglobin dropped below 100. (It had gone down to 80 and the other consultant had done nothing) He couldn't understand why she hadn't treated the anaemia.
As regard dialysis and transplant he said the figures were certainly bad enough to warrant having an assessment done for my suitability for various options. He thought it was likely that dialysis would be required in the foreseeeable future. Because of me having had major surgery to my abdominal area previously and because of other factors like probable lack of space inslde me he thought haemodialysis was the most likely option for me. However, everything will be assessed.
As regards transplant he did not rule that out as an option but said I needed a proper assessment done regarding risk factors, etc.
After several years of being treated like an imbecile by the other consultant it felt so good to be treated like a human being.
He gave me a choice: he would either organise the assessment in the next 3 to 4 weeks and then I could revert back to the other consultant dealing with me OR I could have the assessment and he could continue to deal with me. The latter would necessitate me making regular trips off the island where I live to see him whereas, if I decided to revert back to the other consultant, she could see me locally. I told him I definitely preferred to see him as the other doctor had upset me so much. So things are getting sorted at last!
It is hard to know that my kidney function is as bad as it is and that, after all these years, things have come to a head. For so long I just tried to get on with my life and didn't give much thought to my kidney condition. Now I am faced with the reality of the illness and the havoc it has wreaked on my system.
The future is somewhat daunting but at least I now hve a consultant that I feel I can place my confidence in as a doctor. I almost hugged him at the end of the consultation! I was just so happy.
I know it will make life harder and more expensive for me to have to travel by boat and taxi or public transport to see him, but it will be worthwhile if he can give me proper help and treatment.
Glad to have something to be happy about!
Best wishes to all,
Patricia.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
You will likely have a lot more questions and the need for support as you move forward. We are here for you!
All the best and keep in touch!
First of all, it is good that you were finally LISTENED TO!
And that action is being taken.
At least your future is a bit more clear than it has been, and that is EXTREMELY important!
Just consider how many people have gone before you on this "PKD Odyssey!"
You are not alone!
Peace and Blessings!
CoachRichie
I am SO relieved that you've finally found a doctor who seems to know what he's doing, and with whom you can communicate. It sounds like you have a good plan of action, and now things can move forward in an appropriate way. I think your decision to remain with him is the best one, despite the added inconvenience and cost. It will be worth it.
It's also an emotional time for you, of course, but we're here to support you every step of the way.
Take care, and keep in touch.
Chewitt
I'm so glad you found a competent doctor. I believe the other doctor should be reported for malpractice. you've been through so much, I know you don't want others treated this way.
I'm so glad that you have seen someone who seems to understand the importance of your condition. Having confidence in your doctor can go a long way in living a better, more healthy life. Good luck with the evaluation for transplant!
We are here for you and are so thankful that you are finally in good hands.
Tami
I'm so happy for you. The travel is inconvenient, but a boat and taxi are well worth the effort to see a good consultant and I'm so thankful you finally found one.
Epo has been lifesaver for me. I developed anemia very early and have giving myself epo shots for 7 years, albeit not always every month. It takes time for it to kick in; it's not an overnight burst of energy as it takes time for your bone marrow to produce red blood cells and you're starting with a serious deficet. But within a few weeks to a month hopefully you'll feel much better and less out of breath.
Cayleee,
If epogen hasn't been effective for you, has your doctor checked your iron levels (iron panel and ferritin)? You need to have enough iron in your body in order to for the epogen to work; without enough iron all the epogen in the world will not get your bone marrow to produre red blood cells. It's definitely something to talk with your doctor about, especially as epogen uses up iron stores quickly and oral iron supplements often aren't sufficient to replace the amount of iron used with the epo injections with long-term use (thus the use of IV iron in many patients).
Best wishes,
Ruth
Take care,
Michele
I am still incredibly tired and just keep falling aleep in the middle of doing things. It seems a bit ridiculous. I feel about 90!
Hopefully they will start the assesment before too long and I may start to get the injections.
Will keep in touch and encourage anyone who is ever in a situation like I was to keep on until you get someone to listen. It is an exhausting business but worthwhile in the end.
Best wishes to all,
Patricia.
Hope things go well for all of you too.
Patricia.
Do keep us posted. You should feel better soon.
Love
Heather