Nicole's Mom Posted November 23, 2004 Report Share Posted November 23, 2004 Hi. I"m sorry that I have not been here for a while to write about Nicole. I wanted to but I think I've been too tired and too immobilized to write. Nicole is still in rough shape. It's been up and down. The only thing she has going for her now is that late at night she has a window of time where she can read or write. It's a very short period of time - like and hour or so but I'm hoping it's a sign. But she still cannot ambulate except for bathroom trips and her brain is like clay except for that window of time late at night. Plus the slightest exertion still sets her back. She has never been this way- where the exertion/set-back thing was such a factor.We had the phone consult with her POTS doc back a couple or so weeks ago and he is not going to offer anything at the present time. Nicole asked him about a lot of things. One thing is that he said he does not use beta blockers. As you know she had the Toprol in her possession and had begun taking it and then stopped when her period came and brought worse symptoms. This was before the phone consult. She has not started taking it again. Her local doctor went to her apartment to pay her a house call. He wrote a prescription for Wellbutrin and for Seasonale. He did not push her to take the Toprol. Then Nicole had a phone consult with a mid-wife who suggested taking the pill she was already on (which is 20% estrogen) continuously without the placebo week even though she has break through bleeding. Meanwhile the local doctor suggested another doctor who he thought was smart and we called that new doctor and he came by our house today. (We brought Nicole home to our house on Saturday to live with us). The doctor who came by today is an N.D. and and M.D. He has no experience in treating POTS but seemed to know about it to some degree. He spent and hour and a half here. He asked a lot of questions and Nicole said he was a very good listener and he took lots of notes. He said he would read through Nicole's thick medical records. I also gave him some literature to read. His plan is to do some bloodwork to recheck Nicole's immune function, endochrine, norepi levels, cortisol and a few other things. He is setting it up to have Quest Lab come here. He doesn't like Nicole taking synthetic hormomes (i.e.- the Pill) for her PCOS and wants to give her some natural hormones. For now she will take the pill until he does the endochrine testing. He seems to be a creative thinker yet he knows how serious her condition is and how uncurable POTS is. He will TRY to help but he wants Nicole to keep connected to the POTS doc- the one I mentioned above. We told him about how the POTS is not going to help her at this time. I called Mayo clinic the other day to inquire about the whole affair. If we were to bring Nicole there in the condition she is in presently she would have to be admitted. It would be scary to imagine her doing this presently as an outpatient. She cannot even get out of the house- nevermind traipsing around from motel to Mayo, etc. Also we would rather do air ambulance both ways and would have to work with insurance to cover it. Has anyone here ever used an air ambulance as opposed to the Angel Network jets? We used air ambulance once before and it was tough to get it covered. That required a lawyer after the fact. It was a total emergency to get Nicole from CA to RI and we took a huge loan against out house to pay for it. Anyway regarding Mayo there are many huge hoops to go through to be an admitted patient to Mayo nevermind the air ambulance factor. Has anyone here on the forum been admitted as opposed to an outpatient? They are booking for February but once in a while with the right letters from the right doctors I was told you can get in soon. But it's very rare to have this happen- I was told. I'm not quite sure what would qualify as the right letters from the right people. Yesterday was Nicole's first full day here. She is so relieved to be here and yesterday was the first day she felt hunger (later in the day) in 8 weeks- since this relapse within a relapse began. Today was not so great and her hunger wasn't as great. But she always tries eat. She has lost a lot of weight. But the fact that she had that hunger yesterday for the first time in 8 weeks was a maybe small sign of good things to come. Because her psyche is so tied into autonomic stuff _ I am hoping that this sense she has of being "tucked in" at our home will help to bring her around. She needs lots of love and nurturing and can get that more readily here. She did not grow up in this house but she does feel at home. I cannot even put into words the relief she feels to be here- and grateful- she is so grateful. Within ten minutes of being here she broke into sobs of relief. She was ready to come here and felt she had made a good decision.This is a bad, bad relapse. She has come out of relapses in the past slowly even without salt and fluid loading which she is doing. And she has come out of it without Beta Blockers. Still I am afraid of the fact that she is not using a beta blocker. The doc who came today is starting off with some natural things once he gets some test results and maybe some traditional drugs but he was not big on the beta blocker. I don't know if he will change his mind. He wants to run those tests before he gives Nicole anything. I don't know if in time he will want her to try "drugs" as opposed to natural things. At this point I don't know what to think or expect. I have called lots of local docs- like cardiologists and neurologist and threw around the POTS lingo. Nadda. I called a nephrology group at our local hospital and also threw around words POTS, dysautonomia, hypovolemia. The nephrology group secretary got back to me and said that they knew about this. To what extent I don't know but I showed my husband the list of docs in the group and he works at the hospital with many docs as a bio-statistician (among other things) and he said that one of the guys in the neph group was a friend of his. So we are going to put together some talking points and my husband will call this one doc and have a long talk with him. I think that having this illness is so horrible but to have to reach around so hard for help is just beyond my comprehension. The whole thing- this illness - the severity with which Nicole suffers from it and the lack of help is beyond my comprehension. Every day my husband and I talk about the sickness in our hearts and the pits in our stomachs. I'm sorry to be so negative right now. I am just so sad and griefstricken. I just need to vent at this point even though it was hard to get up the energy to do so until now. I feel so fortunate to have all of you caring folks and this forum. I just hope and pray that over time Nicole will improve with time and by being here. Anyway I just wanted to update you about her and say that I have checked in almost daily to read what is going on with all of you. But I have not been able to get up the psychic energy to get my fingers onto the keyboard to do much more than respond to a couple of your posts. Nonetheless I have kept good thoughts for all of you in my heart. I know I've asked before but if you could send some positive vibes again this way I would be most grateful. And one other question- does anyone use clonadine and why did your doc give it to you? Regards,Beverly Quote Link to comment Share on other sites More sharing options...
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