Tuesday, March 30, 2010

So what does being listed mean....

Well I started this post last Tuesday and was writing it while the call for the dry run came in, so I'm now changing the intro but I'm going to leave the rest intact since it's even more relevant....looking back at it now is very interesting (but I guess not timely....lol)....I will add that 2 other CFers (Jess, Jerry) have had dry runs since mine, sorry guys....

The most frequent question I seem to be getting is when will the transplant happen. I sure wish I knew the answer to that, as do all my friends on the transplant list. For instance my one friend Piper had a dry run over the weekend. She got a call from her transplant center to come in because they had a matching set of lungs for her. Unfortunately after she was at the hospital for awhile she was informed that one of the lungs was not viable. CF patients unlike some other conditions requires a double lung transplant because of the bacteria we harbour in our lungs. If they only gave us one lung the existing bacteria from the CF infected lung would quickly attack the other due to the immunosuppressants needed post transplant. Short of it is, her transplant did not go ahead, but at least the one good lung was not wasted and went to save another's life. Hopefully the perfect lungs for her will be found soon. So keep in mind people when we post that we got called, it's not a done deal till the surgery starts.

So back to the topic.....When someone over the age of 12 is approved for transplant by a clinic (in the US), your data (derived in the evaluation process) is fed into the UNOS (national transplant database) system. When they input your data an LAS (lung allocation score) is calculated and is then used to demonstrate ones need as compared to others. The score can go from 0-100 with the highest score having the most need. My LAS happens to be 37.78 for those interested.

The score is derived from several pieces of data such as (list from Wikipedia):

-diagnosis of the patient (e.g. emphysema, cystic fibrosis, etc.);
-age of the patient;
-body mass index;
-presence or absence of diabetes mellitus;
-ability to function according to the NYHA scale;
-percentage of predicted forced vital capacity (FVC);
-systolic pressure of the pulmonary artery;
-mean pressure of the pulmonary artery (only required of sarcoidosis patients);
-pulmonary capillary wedge pressure (PCW pressure);
-flow rate of supplemental oxygen required at rest;
-distance walked in six minutes;
-need or lack of need for continuous mechanical ventilation;
-levels of creatinine in the blood.

Once they have the LAS score they use that coupled with your blood type compatibility and body size to list you for lungs.

Through the UNOS system organs (Lungs) are offered first locally, then regionally, then nationally using the LAS as the criteria of who gets them first. What I mean by that is:

If an organ donor (host) is brain dead in a hospital, the organs are first offered to the hospitals in the local area, if there is no match locally then the organs are offered to hospitals in the region the host body is in, if no match still exists the organs are then offered nationally to other hospitals.

So in my case right now I am listed at University of Pennsylvania, so if an organ donor of AB blood type passes at Penn and they were my height I would be offered the lungs first since I'm the only one on the list there with those characteristics. If I was not a match they would then be offered to Temple Hospital second, since they are also local. If there is still no match for the lungs, they would then be offered to all of region 2 (De,DC,MD,NJ,PA,VA,) if still no match then they would be offered nationally to other regions.

Now the reason I want to be multi-listed at Columbia Presbyterian is because they are in region 9 (NY, VT) so by listing there I would have a much larger pool to pull from and I know there currently is no one of my blood type listed in the whole region. Good old AB blood, blessing and a curse.....

Tuesday, March 23, 2010

Dry run....

Just got home from Penn....drove all the way down, completed checking in and received a call that the lungs were no good. They were from the Midwest and the person asperated and ruined them,...sigh!

Thursday, March 18, 2010

Columbia date set

Well I just heard from Columbia Presbyterian and have an appointment set for Friday Apr 23rd at 2:00 (they first said may 7th but I balked). I'm not sure with what Pulmonologist we will be meeting with, but the person I spoke with said "she" can meet with you, so looking at their site narrows it down to three doctors. I asked what the intent of the appointment is and if I needed to prepare at all for any testing and they said no preparation needed it's just an interview. I pointed out that they have all my records from Penn and they said yes they did and they were already reviewed. I asked further if I was a candidate for transplant and they said yes or I would not be having the appointment. I can't wait to get this meeting in, and hopefully get dual listed. I'm very lucky to be within 2 hours of two of the best transplant clinics in the country.

A quick update on my health, I'm feeling pretty darn good. My last day of the three week IV course will be Friday. Unfortunately my last dose is scheduled for 10pm and so if I follow that the picc line at best can be pulled on Saturday morning. I know getting someone out on a Saturday is a long shot, so I called to try and get it pulled on Friday instead. The intent would be to just skip the last dose, we will see what happens. With the weather touching 70 degrees and sunny I am hoping to get out and about some and try to work on my stamina. I would love to try and lift some weights while I'm feeling so well since that's what I enjoy most, but not sure I really can.

On another note, I can finally announce that VP Joe Biden is coming to town on the 15th to hold an event for my friend John's congressional campaign. Needless to say this is a big deal, we can really use the support.

Thursday, March 11, 2010

Test Blog "In Denise's Words"




Ok, so...since we are getting prepared for "the call" I am taking the time to figure how this blog works. I will be taking over the blog when Jim is out of commission. You will hear the latest and GREATEST news of where Jim is and what he's up to. I even have permission to post pictures - that should be fun!! Thank you everyone for your comments and words of encouragement and support! Hopefully I will be writing to all of you very soon saying that the surgery has begun! I packed the day we were told Jim was listed. I'm ready to go...NOW!!!



Tuesday, March 9, 2010

I'm listed!

Well it's official, I'm listed for a double lung transplant at University of Pennsylvania. Since I'm a rare blood type (AB+) I'm top of the list there.

My information was sent to Columbia Presbyterian today, so I will call to follow up tomorrow.

Friday, March 5, 2010

Good news!

Pathology just came back, no cancer!

Now I have to call Penn and see if I'm now listed.

Wednesday, March 3, 2010

Well that sucked...

Yesterday was quite a day....I apologize if this is too graphic, but others may be going through this transplant process in the future and want the information.

Yesterday was the big day for my biopsy, it occurred at 1:30 and so I had to start preparing at 11:30. How does one prepare for a prostate biopsy you ask......with an enema of course. Yes that's right your humble author was humbled even further yesterday. As I laid down on my belly to deliver the fluid I had to laugh, this has to be some sort of joke right?. I kept waiting for someone to jump out and tell me I was punked or something, but alas no one came to my rescue. So I did what I had to do and man, it was as bad as the biopsy. See I have been on IVs for several days now and my butt is really sore from the loose bowels and reoccurring bathroom stops, so adding salt water to an abraded bottom was like setting a lit match on my skin. YOW!!! It was a really painful experience....

So at 1:00 Denise and I headed over to the Dr office for an ultrasound guided biopsy. After arriving, the nurse and I headed to the procedure room while Denise chilled in the waiting room. I then had to then disrobe from the waist down and sit on the table/chair contraption. After taking my vital signs the nurse then started to prepare me for the procedure by inserted a syringe type object with numbing lubricant in my already pain riddled anus. As the numbing cream took effect she showed me the apparatus that would be used in the procedure. First the doctor would insert a wand like object into the anus (ultrasound probe), the wand had a hole in the middle of it that a long needle would be inserted through. The first needle would be attached to a syringe that had Lidocaine in it, then once the prostate area was numbed up appropriately he would remove the syringe and insert another needle that would be attached to a sample gun. She told me the doctor would be taking 12 samples from various locations within the prostate.

She then left and about 5 minutes later the doctor came in with another younger women who observed the procedure. After a few niceties he asked me to lay on my left side, scoot over to the edge of the bed and bend my knees up toward my chest. He then took a wand like object and as was previously described inserted it where I would prefer it not be. This was very uncomfortable mostly due to my sore bottom. He then moved the wand around and injected the Lidocaine in many places (not sure how many times he stuck me). While he was waiting for the Lidocaine to take effect he moved the wand around and took several ultrasound pictures of the prostate. At one point he said he saw some calcification, which apperently indicated some previous trauma to the prostate. After a few minutes (I am not sure how long as I was meditating and starting intently at the wall outlet) he said he would now start taking the samples. I could feel him moving the wand around and pressure in my belly and groin area, every so often I could hear an audible click when he took a sample. I did not feel most of the samples being taken, but two of the twelve did hurt like hell. Luckily time passed and the procedure ended.

After he removed the probe and asked me to sit up I asked him what would happen now. I knew he had talked to the doctors at Penn previously to make sure that the procedure and samples would meet their needs. He said the samples go off to the lab and we would hear back in 5 days or so. I asked him if the Dr at Penn told him what happens if it is cancer, and he said he would be incredibly amazed if it was as he did not see any indications of concern.

Now I need to avoid strenuous activity for 5 days...and not get freaked out when I pass blood for awhile....

So that was my big day yesterday....man am I glad that is over!

Monday, March 1, 2010

Prostate Biopsy

Well the urologist just called, they are moving up my biopsy to 1:30 tomorrow. I'm really not looking forward to this one....but better to know than not. Most importantly if all is well then I can finally be listed for transplant. I'm looking at it as one more hoop to jump through for Penn.

Then I'm going to give myself a little break before contacting Columbia to list there.

Today is the 4th day of IVs and I'm finally not feeling nauseous. I had a really bad few days here, hopefully things are on the up now.