Doing Well - Waiting for 1/22 Cardiac Appt

Chris has had a good couple of weeks. She has been busy with various trips to Vermont and NY, putting away all the Christmas things, getting back to yoga, etc. She really was glad to start the yoga again and she said she felt stronger than she expected. This was encouraging and I expect she will continue this and soon get back to the gym where she was a regular less than a year ago. The yoga is also important for her mental health (or so she tells me), but I hope I don't come home some day and find a Yogi humming in our living room.

We received the full report from our BU visit back in mid-December. The entire report is 40+ pages as all of the results are included from the lung, heart, kidney, blood and liver tests. I will map the data against the trend charts as a measure of ongoing improvement. I thought I would include some comments from the summary here as an example of the results. These are all quotes:

-On physical examination, Mrs Wright looked well. She was aferbrile with a standing heart rate of 104 bpm and a corresponding blood pressure of 92/61 (mmHg). She was not orthostatic. HEENT exam revlealed no submandibular gland enlargement.

-Cardiac auscultation revelaed a regular rate and rythm without murmer.

-Pulmonary auscultation revelaed mild bibasilar crackles.

-Mrs. Wright underwant numerous diagnostic tests during the course of her eevaluation with us. Serum immunofixation revealed a polyclonal distribtion with a persistent, but fainter IgM lambda band. A pevious M-spike of 0.42 has now essentially resolved.

-Transthoracis echocardiogram notes worsening of left ventricular ejection fraction at 35% with the suggestion of worsened mitral regurgitation and persistent biatrial enlargement. Dr. (I will leave the name out here) noted her echo findings seemed contradictory to her improved functional status with decreasing need for medication.

-Dr. Sanchorawala noted that Mrs. Wright has had a great partial response of her underlying plasma cell dyscrasia and evidence of protein response with a reduction in proteinuria, BNP, diuretic requirement, and improves tolerance. Dr. Sanchorawala advises no additional treatment is needed at this time; however, she did request that Mrs. Wright return to clinic in 3 months (March 8-10) for reevaluation to include serum free light chain analysis.


Imagine 40 pages of this. So what does this all mean? Here is where I think we are as of Jan. 17.

Chris clearly has had a very good response to the chemo therapy. The amyloid proteins in both her blood and her urine are down significantly, yet she has not had the Complete hematological response we were all hoping for. Yet, she is 95% there. She is really feeling very good and her stamina, attitude, and outlook are all positive. She is getting herself into a normal routine and really feeling good about things. The worry however is clearly the heart. She is formally in congestive heart failure (you would never know it) and we have the entire spectrum of numbers around the ejection fraction - ranging from 50% to 20% ( normal is 55%-75%). As such, our next major gate is meeting with Dr. Falk, the amyloidosis cardiologist specialist on Jan 22. We have sent him the actual CD of the echo from BU and he will review that vs his own offices tests and the one done at Brigham and Women's and see what the heck is the real truth.

Chris has restarted the Coumadin (blood thinner) and has had no adverse reaction, unlike the first attempt. I now blame that reaction to Thai food (so thankfully we won't be going back to that restaurant soon). We'll see what Dr. Falk says about the implications for using this for the rest of her life, but I anticipate that is going to be the reality as it is needed to prevent a stroke from a thrombosis in her heart.

Stephen has been working very diligently on his required senior high school project which is to raise funds and awareness for Amyloidosis. He has 2 weeks off from school in March and his plan is to ride from Florida to Massachusetts. He is developing a web site, mapping the ride, creating a budget, etc. He has contacted the Amyloidosis Research Foundation as well as local sponsors - all on his own. Chris and I are very impressed with his passion and determination. He has asked for no help at all from us as he really wants to do this on his own. I am asking if I can at least join his support crew - he'll "think about it". His plan is to do this in the first 2 weeks of March, so time is now critical to get the plan locked, but I am sure he will make this happen. I will be posting a link to his web site in the next week or so.

I also have permission from Chris to post some pictures of her over the last few months. Many of her distantly located friends have been asking for pictures and she has always said no, but now she feels as if it might make people more aware if she can show them how you can come back from the hell of the high dose chemo. So I will look for some and post them here in the next week. She will of course maintain editorial control she warns me.

Again my apologies for my delayed blog updates. I have started a new ( and very exciting) job at IBM and am in the middle of reshuffling organizations. Yet job #1 remains Chris. I will certainly post an update after the cardiac appointment and hopefully post some pictures in the next few days.

A million thanks for your ongoing interest and support. I can't tell you how important it is.