Journal

I’ve been finding it therapeutic to write these journals, so here is another update in my road to recovery.

Last week I met with my hematology nurse practitioner for my INR check and for the first time in months, I only had to do the finger prick test. J I’ve come so far in fact, that the blood lab gang were stunned that they didn’t need to do a CBC for me and were commenting on how far I have come in getting my blood drawn. It was such a good feeling. After seeing these ladies now over the last 22 weeks, many times several days a week, it felt so wonderful to hear others acknowledge the progress that I have made. My INR balanced out and is now 2.3, which is in my target range of (2-3).  My coumadin dosage stayed the same and I am finally able to have my INR checked every 3 weeks. I just about jumped for joy right there in the office!

I also asked the nurse if I should schedule the visit with my hematologist for the end of February since that will be the end of six months of anti-coagulation for me. Also, this will be the meeting in which my husband and I learn not only my treatment going forward for the PEs and DVT, but also the hematologist’s opinion of how risky it would be for me to get pregnant.

Last Tuesday I went for my final appointment with my pulmonologist. I had a second round of the breathing tests and then met with the doctor. Overall, I made some improvements in the last four months. But I am still below the norm on the diffusion testing- how much oxygen is carried in my blood stream. It was my pulmonologist’s opinion that it is what it is now. Basically, there is no need for me to keep re-testing, and that is likely my long-term damage. He also is of the very strong opinion that my multiple, bilateral pulmonary emboli and DVT were caused by my gynecological surgery and taking birth control pills. He feels that I should come off the anti-coag therapy as soon as I hit 6 months and will be stating his opinion in the reports he sends to my primary care and my hematologist.

Overall, this was a great visit. I was again reassured that I have made a great deal of progress, but I walked away still concerned that my doctors are split in terms of their opinion on how I got the DVT and PEs. Since my future care would differ based on whether it was a genetic predisposition or the Pill and surgery, its very hard for me to know what to think. My OBGYN and my Primary Care both think that it was not the Pill and surgery, but that there is a genetic marker that has not yet been discovered for me (since my dad also had a DVT). But my hematologist, pulmonologist and vascular surgeon consulted all believe it was the Pill and the surgery. If that is the case, I would be off the anti-coag therapy very soon. If my Primary Care and my OBGYN are right, then we would need to consider lifetime anti-coag therapy.

I guess that means that my husband and I are back to researching and preparing for the meeting with my hematologist at the end of the month. Once we hear what he recommends, we’ll determine if I need a second opinion.

While all this is weighing heavily on me right now, I am still regaining more and more energy every day and feeling so much more like I did before the surgery. There are some days that I don’t think about it at all during the day. And I find that while I still talk pretty openly with folks about what happened, my whole world does not revolve as much around my illness. Again, what a far cry from where I was just at Christmas time.

Finally I am feeling much better, almost like the old me, at least physically. J I am so very thankful that I finally have a fantastic new Primary Care Physician to rely on.  The night after my appointment with him I finally slept like a baby- I think I finally let go of the stress of worrying about my progress and whether I am receiving good care.

Dr. Sherman, my new PCP, recommended that I talk with my OBGYN surgeon about my concerns regarding the surgery and raised risk for PE and DVT. His advice was right on track. Last week I met with the surgeon and asked her if she thought we should have considered taking me off the birth control pills prior to surgery to lower my risk of clotting. She explained that to do that was no longer the protocol and I would have had to be off the prescription for several months, which I could not afford to do since I needed to have the surgery as soon as possible. It was an excellent conversation and I have renewed confidence in her abilities and care. I now feel that with the new partnership between my OBGYN surgeon and my new PCP I will be taken care of appropriately. This is another huge relief because I really do adore my surgeon.

I’ve now been on Amitriptyline for a little over a week to help with my pericarditis and costrochondritis. Thankfully I am able to use this prescription and be able to sleep without taking Dilaudid anymore. Unfortunately I have been having extremely restless sleep for a week. I understand that it will take 2-3 weeks of being in my system before we can determine if it is working for my pain management.

I’ve also started working more hours beginning this week. I’ve worked regular time Monday, Tuesday, Thursday and will today and took Wednesday at home to rest up and work on all my insurance and doctor bills. It feels pretty good to be closer to my normal routine, although of course I am completely exhausted by the end of the day.  On Tuesday I even tried swimming with my buddies from work. I managed to stay in the water for an hour moving, but I paid for it as I could barely drag myself to the car to drive home. And I had such awful lung pain on my right side afterwards. Thankfully Ashley told me that happened to her so I didn’t think I needed to call my doctor. J

And last night it was around 20 degrees outside and I spent all day in back to back meetings so my chest and lungs really hurt a great deal. I’m sure that’s just part of the healing process.

On Tuesday night I received a personal phone call from my new PCP just to check up on how I was doing. What a truly wonderful doctor. Because it was late, I emailed him my updates and he wrote back that night and has been emailing me the last couple days. Boy, what a difference in care. J

Overall, I am much stronger than I have been since August and in mostly a much better frame of mind. I still ride the emotional roller coaster on occasion and get frustrated when I worry about every little ache and pain. But I can see the progress I’ve made. Now I am working towards coming off the Coumadin in the next 2 months or so, and hopefully we can get my INR stabilized since it was 3.5 again this week.

My husband and I still have to meet with my hematologist, OBGYN and a perinatologist to talk about whether pregnancy will be possible, however I’m taking it one day at a time for now.

Oh thank God is all that I can say! And my good friend Pattie, who convinced me to see her internal medicine doctor and consider having him become my new Primary Care Physician. I had no idea what it could be like to have a really good doctor. What a difference! 

Today I was seen by Dr. Jeffrey Sherman in downtown DC and he was just phenomenal!! Before I even mention what he said, I just have to say that he came to the waiting room to get me personally; he saw me in his private office that also has a patient room off the side of it to do an exam (I didn’t have to tell a nurse everything only to repeat it all to the doctor); he spent over 2 hours on my appointment (and that’s the time he and I were together, not me sitting in the waiting room); he gave me his business card with his personal email, his private phone number, and his cell phone number and said I should feel free to always contact him for anything. And he explained that he will coordinate all my care from now on by talking to all my other doctors for me. I don’t have to do everything on my own anymore and worry about whether it’s right and if my other doctors are all on the same page. What a huge load off my back! 

He does not take insurance, is out of my insurance network, and is very expensive, but we’ll just have to manage because he is that amazing. Finally I feel reassured that I will actually get well.

So on to what he said. Dr. Sherman was able to read the report of my Christmas Eve echocardiogram, and said that it was fine but I do have mild thickening of heart muscle; could be hypertension, but I don't need to do anything about it now.

He also said its:

- possible that  the multiple bilateral pulmonary emboli might have caused chest wall pain by inflaming the lining of the lungs

-  possible I have fibromyalgia since I have muscle pain in various places on my body in the 9 point places

- Slim possibility its Coumadin causing all this discomfort in my chest

- Possible I am having sleep issues or is because of sleep issues he might have me to a sleep study at some point

-Prescribed Amitriptyline, wants me to try it for 2-3 wks, if doesn't help he'll look into doing a steroid taper

-Should go back to pulmonologist to redo the lung function tests, but that’s all I need the pulmonologist for now

And after talking it all through, he is not sure he would have done anything different with my surgery than my surgeon, so I should feel comfortable staying with my OBGYN and he will work with her. Also, I will have to see a parinatologist at some point to discuss if I will be able to have children, but we’ll work on that in the future.

I am so relieved I can hardly stand it. YAY!