I'm new

[michelle]

Hi! My name is Michelle, I'm a kindergarten teacher in Kansas,USA. I just want to say thanks for all of the messages that I have been reading. Wow, it is good to see that I'm not the only one to live through trying times.

Now on a more selfish note, I have to say that I am so frustrated to find myself in the position of having to go to hemodialysis 3 days a week. I hate it! It's painful, naseating, exhausting, depressing and I feel like it now encompasses my whole life.

I was told that I had esrf in July of 2004. By August I was on dialysis via a lovely catheter in my chest . I talked to the principal at my school before the school year began and thought that we had a good plan which would allow me to keep working without too much interference in my day. She told me I could leave 15-20 minutes before school was out (another teacher would cover my class & dismiss my students). This would allow me to get to dialysis in time for my session. At that time I was running for 3 hours. Suddenly and without warning my principal decided that this plan wouldn't work. The person that was covering my class was not going to be able to cover it any longer - even though she was assigned to my class on a daily basis. Not only that, my dialysis time was increased to 3 1/2 hours, which would be too much time to be able to leave early. I also found myself exhausted, nauseated and unable to think very well. I started having problems from the hepron that was used in my dialyzer which landed me in the hospital for a week.

Anyway to make a long story short, I ended up on short term diability beginning in October. I had a live kidney donor set up and planned to have a transplant in December, so I thought that things would work themselves out over the 6 months that short disability allows.

December 21st my wonderful brother gave me one of his kidneys. December 22nd I had an acute vascular rejection of that beautiful kidney. December 23rd the surgeon removed the kidney and I began hemodialysis through my fistula.

I have now been told that even though I have other people lined up to give me a kidney, no one will be allowed. The risk is too great for rejection. So I am on the cadaver list.

I have been informed by my employer that I must return to work by March 25 and work until May 5 with no days absent or I will loose my position and my insurance.

I am considering doing pd but I'm not sure if I will feel any better than hemo.

I just feel sad. I hate feeling this way, and I know it will pass, but I still feel like crying most of the time.

Thanks for allowing me to express myself. I'm sorry for sounding so awful.

[Mike]

Hi Michelle,

I'm so sorry to hear about all the problems you have suffered. I am on APD at the moment but just a couple of months ago I was on PD. I was in the lucky position of having a very understanding boss who gave me as much time off to do an exchange as I needed.

I have some understanding of how you must be feeling after the rejection of the transplant, My brother has been though that 3 times before so now it is very unlikely he will be able to get one. I remember how depressed he was particulary after the last one failed. I'm sure however he is an exception as ther are a lot of people on here who have successful transplants some even as long as 25 years!

I am on the transplant list myself as I don't have a live donor as none of my family are suitable as they all (apart from my mum who's the wrong blood group) have kidney disease. I don't know how long you would be expected to wait in the US but I hope it comes round as quick as poss.

Have you discussed the possibility of APD as it is done overnight leaving your whole day free? I know there was a waiting list for it at my unit in the UK so I don't know if there is a chance to do that where you are?

When they first started talking about putting me on dialysis about a year ago I was told that they wouldn't let me do PD and I would have to do HD but I managed to get them to change their mind. One thing that occured to me was on HD you actually spend less time overall dialysising than on PD!

My brother has been doing HD for about 12 years and finds that it suits him very well but he is not able to do PD due to repeated bouts of peritonitus when he was much younger. there are a lot of people on here who find HD to be much better suited to them but it doesn't suit everybody.

I hope everything is sorted out for you quickly

best wishes

Mike

[Sky]

Now if i am not mistaken the Catheter is like a IV straight to your heart that last longer than an IV. Correct me if I am worng, but thats what is right. They(The doctors) wanted to put one of those in me when I was doing Iv therapy. I told them there was no way they were gonna stick me with a tube and leave it there. I went with getting stuck every appointment.


Also I was wondering if someone could explain the HD, APD and such

[Mike]

Sorry didn't explain it properly

HD is Hemo Dialysis
PD is Peritoneal Dialysis also called CAPD
APD is Automated Peritoneal Dialysis also called CCPD

Mike

[johnsor]

I cannot tell you how sad I feel for your predicament. What I have observed is the world can be very cruel and unfair for people with chronic health problems. Unfortunately, most of the time you have to deal with the difficult situation.

I would suggest you try the PD / CAPD so you can work full time and keep insurance. The sooner you find out how you react to PD the better you can make a decision as to whether or not you can go full time. I was able to work full time, but had to deal with nightly hookups that go with the process. Please understand I am not insinuating you may necessarily be able to work full time just because I could.

As for the failed transplant, I wonder if there might be some options. Have you contacted any other TX centers to see it they follow the same protocol of not allowing a living donor and having to wait for cadaveric donor? If you have not checked with another center, I would contact another center to see if there are alternatives to your situation. I lost my first transplant over a 7 year period to chronic rejection of my sisters kidney. The second transplant is also living related, but surgeons screened potential live donors based on criterion they established. My surgeon quoted me from his mentor surgeon doc, "every kidney transplant is different" meaning there was no reason to believe the second Tx would not work just because the first failed.

One final thought. You may want to meet with a disability attorney (the first session is usually free and you may just need that visit) to determine if you have anyway to challenge your school system's threat of firing you if you miss another day. I am not a proponent of attorneys, but they are keenly aware of the law and your rights. The disability attorney I have used in the past has been very helpful in explaining and clarifying disability rights. Just bring your questions. Talking to people about disability rights from my experience can be misleading, where an attorney who specializes in the field will give you the facts even if they are not what you want to hear.

The very best to you.

[JMan]

Johnsoor has good advice.. Looka round at options from other docs.. Protocols and practices DO vary.

As for PD, haemodialysis worked well for me (I went through my entire secondary (highschool to University level) education on it. But for other people forms of PD work better..

Ask lots of questions.. there's no real reason for you to feel ill on haemodialysis if both you and the unit are manageing the various aspects properly..

just my 2p's

By all means come and visit the chat some time ..
www.dialyze.org/chat

Oh.. and hugs..

[amanda in CA]

I am very sorry to hear about all that has happened to you. All types of PD (CAPD, APD/CCPD) use the same principal. A permanent dwelling catheter is inserted into your abdomen. This provides access for draining a sugar solution into your abdomen, allowing it to dwell for a period of time, and then draining it back out again via the catheter. This type of dialysis uses the peritoneal membrane as a filter, the toxins being removed from the blood by the action of osmosis and diffusion resulting from the presenceof the sugar solution in the abdominal cavity. There are different strength solutions available, the stronger the solution, the greater the amount of fluid that the dialysis fluid will remove from the body. CAPD involves doing 4-5 of these fluid changes (exchanges) during a day, and draining in and out is brought about by the action of gravity. APD a.k.a CCPD is done through the night but involves connecting up to a machine which does the draining in and draining out, so that you can sleep. The big advantage of PD is that because it is a continuous process (a little less so admittedly with APD) you don't get the huge peak of toxin build-up between treatments, so dietary and fluid restrictions do not tend to be so great. Not having been on haemo, I can't say if one makes you feel better than the other, but because you are avoiding those peaks, my gut-feeling is that it does. The main drawback from PD is the fact that there is a permanent catheter, and there is also the risk of infection, which can be minimised by using good techniques which would be taught to you before you would be let loose on your own. I have done CAPD in the past and now do APD which I much prefer to the former as I can basically just get on with my life during the day. I generally feel pretty well on APD.

There are some advances with haemo. which are happening in the US but, not at present, to the best of my knowledge in the UK. I have been told that there are two other haemo. options, both are types of home haemo. The first one is done every day for about 1.5 hours a time and you need a caregiver present, the other one is done nightly through the night. This type is slow, requires no caregiver to be present in case of problems (the blood is cleaned very slowly). My dialysis unit have had some pretty good experiences with these types, patients are found not to have to restrict phosphate and potassium etc. and electrolyte levels are reported to be as close to have a working transplant as any method available. The only drawback is that I am if Medicare is prepared to pick up the tab for these types of dialysis at present (if they are then I understand that the private companies usually come in line with what they are prepared to pay. Hope that this helps you. Best of wishes, Amanda

[JMan]

From what I remember (and this is off the top of my head) Nocturnal Haemodialysis is being used by a few in the UK, as is Daily..

There's also a prototype heamodialysis machine thats about the size of a good sized camera bag and with a micro dialyser (fits easily in the palm of your hand) that we may see trialled & hitting the markey in the next 5 - 10 years.
Technically anything that dialyses more slowly and contantly (thus replicating more closely the action of a kidney) *should* in theory be 'better' dialysis.

J

[michelle]

Thank you for the wonderful advice and feedback. After talking to my nephrologist and surgeon I am going to try CCPD. I think that Amanda might be right, by clearing toxins daily I won't have the peaked build up and therefore (hopefully) will feel better. I know that it will be easier to work as I won't have to worry about the scheduling conflicts.

No, I haven't as yet contacted or even looked at any other TX centers. I think the shock of rejecting and then be told I could not have a live donor is just now beginning to wear off. I do however have a meeting set up with myself, my family and the surgeon that made that decision. My family and I would like some clarification concerning that decision.

One thing that is puzzling me is that I have not recieved any written information concerning the decision to only have a transplant from a cadaver. I was informed via a phone call that I made to the transplant coordinator. I called him in reguards to lab results and he informed me of the decision made at the transplant meeting. I don't understand why I have not recieved any paperwork concerning this decision. I was told that a letter was sent to my nephrologist and I know that the insurance company will recieve written information. Am I wrong to expect anything in writing?

Oh yea, Sky, that catheter is directly into my heart. It was placed there until my fistula was mature and strong enough to stick. Thankfully I will be getting it removed next week. It is definitely a strange thing to have dangling from my neck.

Thanks again for all the comfort. I really needed it!
Michelle

[Bruce]

Michelle--

Sorry to hear of all the problems you've been through. You seem to have made the decision to do CCPD and I think that is probably the right decision for you. PD, among other things, is much easier on the body and you don't have the extreme blood pressure drop and tiredness associated with hemo. Good luck with it.

As for your employment problems: I was a teacher for over 35 years and when I started having problems my employer worked with me and allowed me to use up my accumulated sick days (over a year's worth), and when they were gone, I finally had to retire. The school system was very good about it. But the question is: do you have a union? Most public school teachers belong to the AFT or NEA. Certainly your local should have been able to help you. Also, there are federal labor regulations which might kick in. Don't let your school system push you around. There aren't that many good teachers around that they can afford to lose one. Good luck and keep us posted. --Bruce

[johnsor]

Michelle:

You have every right to get that information in writing! Ask your transplant coordinator to send you a copy of the letter especially if they are sending to your insurance company. You may want to visit
URNWEB.com (United resource network). It identifies all of the "centers of excellence" in the U.S. and their tx specialty(s). Insurance companies generally use this list to approve centers, though some HMOs will only let you use the center they have contracted. Again, you have the right to that information!!!

hope things go well for you.

[michelle]

OK, here's the latest in the ongoing saga of my life...
I had the meeting with my surgeon and apparently he received more lab results that very day. He told me that until he had those results it was unclear to the transplant team why I rejected the kidney. Now he knows that I had an antibody that was lying dormant. For some reason when they put my blood syrum together with my donor's there was no reaction, however as soon as the kidney was placed the antibody "woke up" and attacked the vessels of the kidney. He said that now a live donor would be better than a cadaver because he wants to tranfuse a pint of the donors blood into me a month prior to transplant in order to see if there are any more dormant antibodies lurking about waiting to strike.

Somebody stop the rollercoaster, there are too many bumps! I'm ready to ride the train.
Later,
Michelle

[amanda in CA]

I was wondering if you would be a candidate for plasmapheresis - this is where they take your plasma out, either filter out the antibodies and then put it back in, or take yours out and give you a plasma exchange, just as you would have a transplant. As to getting it in writing not to have a live donor, I don't think that you would routinely get such advice in writing, but I agree that if you ask you would be able to get it. amanda

[oldborris]

just before I had to go on dialysis eight years ago they put me to this plasmathingamajiggy - eight sessions in eight successive days - thinking to clear out all my antibodies. But all that happened was that the antibodies yelled out joyfully, "look, boys, reinforcements" and I was on dialysis a few days later.