Wednesday, March 01, 2006
Welcome to our new diarist
Welcome to June Taylor, our newest diarist.

Sunday, April 23, 2006
It was a very bad year...
Our favorite nurse at the hosptial told us to not bother to write a book as no one would ever believe us. My daughter had had surgery in Dec. of 2002. I was scheduled for sugery in Jan. 2003. I went into my PCP to have my pre-op done. I breifly mentioned that I had had some visual disturbances. At the last moment she decided that perhaps I should have an MRI. I really didn't expect anything to show up, so was somewhat surprised when she called to tell me that I had two brain anueuryms. So my abdominal surgery was cancelled and instead I had brain surgery - clipping one of the aneuryms. Then I developed a CFS leak and had to go back to surgery. Very shortly after that my daughter (I live with her and her family) had a bowel obstruction and had to have surgery. After that I had my second brain aneurysm surgery which had to be coiled due to the depth of the location. Three weeks after that surgery my daughter was admitted for a pulmonary embolism. While in the hospital she developed strange symptoms causing very poor motor control and ended up in physical therapy for nearly six months sometimes unable to walk without a walker or cane. (She saw many specialists, has had one more episode this year, but they have never been able to find the problem.In June 2003, I had gastric bypass. Six weeks later I went to my dr. (drove myself) and told her that I wasn't sleeping well, my appetite wasn't good, and I just didn't feel well. They took my blood and told me that the dr.on call would call me if anything was abnormal. (That never happened!) The following morning my family found me on the floor. They thought I possibly had had a stroke or a reaction to some new medication my dr. had given me. They decided to drive me to the ER and I could only walk with two people assisting me. (I don't remember anything since I went to bed the night before) It wasn't long before things got much worse. My labs were all over the place - unbelieveably high or low. Then I arrested. I was tranferred to Mass General Hosp. in Boston on life support. I had total organ failure, was on kidney diaylsis, etc. My family was told that I probably would not make it. I was in a coma for two weeks. When I finally came out of it, I was unable to use any of my extremities. I was even unable to talk for awhile. I was in the hospital for several weeks and then sent to a rehab center. After awhile I was finally able to use a wheelchair, but didn't start walking for a good while. While I was in rehab, I threw two blood clots to my chest and went into congestive heart failure. So back I went to ICU once again. I finally came home from rehab and had a nurse and PT coming to the house for a couple of months. Then in Nov. 2003 my daughter ended up back in the hospital for six weeks. So that was 2003 for us! Since then my daughter has had several problems, but I've felt great. I did have any andiogram to check to see if my coils are still in place and I had a knee replacement last summer. I have continued to feel that we have been blessed. Things could have been so much worse. next - my PPH story.

Monday, April 24, 2006
and now what?
I did everything I could to avoid doctors and hosptals after "my near death experience" in 03 (I call it because they never really did figure out what happened to me for sure . Metabolic ketoacidosis, but kinda odd for someone whose blood sugars were running normal. I expierenced some deficities after that illness - memory loss, incontinence at times, and balance issues. I thought I felt pretty daggone good for someone who had been so close to death. I first noticed that I had problems projecting my voice and my daughter was forever telling me to "speak up". I'm quite the talker, as you probably have guessed, and I found myself not able to talk for the lengths I had previously. Then my daughter and I went to visit my son and we all went into NYC for the day. There was just absolutely no way that I could keep up with them and my son was now quite concerned also. So I finally gave in and made an appt. with a local pulmonary doc. I told him that I thought that most any problems I now had started after I was so ill. He brought upmy records from Mass. General and saw that I have been intubated and had had pneumonia. My lung pressure had been 87. He was surprised that I had never been followed for that. So off I went for all of the tests which he said showed I a had a mild case of PPH. I was in the hospital (just can't seem to stay away from those places!) a couple of weeks ago for a gallstone, so my pulmonary doc stopped in to tell me that my lung scan looked pretty good, but he saw two places on my lungs and we'd do another scan in three months.BRING IT ON I SAY!!! JUST BRING IT ON!! I am a survivor and a fighter. Now if anyone should happen to have a more direct line with our Lord, tell Him that I'VE HEARD HIM AND I AM SO PAYING ATTENTION!Enough of my yaking for now. I have two grandkids home from school with the flu (which I gave them) and a daughter bedridden for a very long time with both bones in her leg broken very badly. (had surgery on the 7th)

Saturday, July 01, 2006
Last month was the Brain Aneurysm Foundation's yearly run
Last month was the Brain Aneurysm Foundation's yearly run. My daughter & I (both had brain aneurysms in 2003) always go. I've been in an online support group since shortly before my brain surgery and have become very close to many other members. Many come to Boston yearly for the event. They're from everywhere. They are usually here for 3-5 days. This year I had offered to have a BBQ at our house after the run, but when my daughter broke her leg, we decided that there was no way we could have it. A new member who lives near Boston had one at his house. He has a pool and nice big yard and it was so great to spend an entire leisurely day with all of my friends. It's amazing how close the group is - like family.

I thought about how very much these people supported me before and after mine and my daughter's surgery. I didn't know anyone who had ever had brain surgery, let alone an aneurysm. I had so many questions. Since then I myself have been able to help many folks and I am so grateful for that opportunity.

Anyway, it made me start thinking about how much I need this group. I have so many questions and sometimes I don't even know what to ask. I know I need folks who know how I'm feeling.

My previous appointments have been with a regular pulmonary doc. I had my first appointment with a specialist this week and I just love her! I'd had a few tests, but knew I would require more. I had about 18 vials of blood taken and a VQ Scan. I'm scheduled for a repeat lung scan and a cardiac cath. I gained a lot of knowledge from my new physician too.

If anyone on this list lives near Boston, I'd love to meet you. Just drop me an email. I also have the phone plan where I can call anywhere in the USA at anytime without charges, so if anyone just wants to chat, also let me know.

June

Wednesday, September 20, 2006
I can't believe it
I can't believe it - I think I've become a procrastinator. I've NEVER been one before and I couldn't understand anyone who was one. I seem to put everything off. It's hit me lately that I should realize that I don't have forever to do the things I need/want to do. I'm most upset with me not keeping up with my email and phone calls. And......this diary! Soooooooooooooo......I'm gonna try to do better. I had my cadiac cath and all other required tests for PH. So I guess it's now in stone, even though I was told in March that I had it. Hadn't had one test when first dx'd. I started into a research program at Mass Gen. Hosp. for Tadalafil this month. One in four get the placebo and of course won't know until the end of four months. I've not seen or felt any changes until this week. Of course, I still might NOT be on the drug, but I haven't been as exhausted this week. I actually finally cleaned my two rooms (live with my daughter & her family) and even helped with some painting! Wow! I have to admit that I have been attempting to get to bed at a reasonable time as I'm a night person and tend to stay up waaaaaaaaaaaay too long.