Ineffable Joy

ICU Experience

It's day 15 after my double cholecystectomy and kidney transplant surgery. So far, I have been gaining my strength back little by little; following doctors' instructions, keeping a record of vital signs, input/output monitoring, etc. 

Please pardon, grammar and spelling mistakes as I am not strong enough.

If you have read the previous post that my brother, Noel composed, you would know how stormy the surgery went. But I have little or no recollection of the episode where, after the 2 procedures and was in the recovery room, I sat up and started pulling needles and tubes out of my body. All I remember was that for a brief moment, I heard frenzied voices and hands restraining me. Later my neph told me that it took 5 persons to finally hold me down. What caused that, I do not know. Even the doctors are not sure.

From that episode arose the complications. I was bleeding and they had to open me up again. My blood pressure dropped and I was intubated and breathed through a respirator and woke up in ICU. I was unaware of my surroundings, a trachea tube on my mouth making me gag, arms restrained, and dead scared. Doctors and nurses would come in the room, check on monitors and tubes sticking out of me, most of them quiet and not acknowledging my presence. All I heard were different beeps and alarms emanating from the machines. At lease that was how I felt. 

Then came the dreams and hallucinations. That was the most difficult part. And there were a lot. Sometimes I am aware of the 3 walls surrounding me; sometimes the room turns into a garage or an auditorium. I have created stories and scenarios that I believed i during that time… out of these world conspiracy theories. I had so many companions in that room. And I was scared and my heart would race.

I counted the seconds there. Sometimes I wake up thankful that I have slept dreamless. But only to look at the clock and find out only 10 minutes has past. 

Then I began to focus on the white board on the front wall. Whenever I drifted off some place, I try to focus back in to that board. And I think that helped. Since I could not speak, I asked a nurse for pen and paper. I wrote: Stop anaesthesia. I do not want to dream. The nurse said that she will relay it to the doctors. A bell was placed in my hand so I could ring the nurse if I needed something. 

At first I felt that I was just left there and not cared for. But later, when the staff became more communicative, I started to calm down. But I hated the tube up my throat.    

I was asked by a nurse If I wanted to see family, I said no. I felt that they too have abandoned me. It was only after the 2nd day in ICU(I think) that I agreed.

As the doctors would visit and talk to me, I started to understand what happened and why I was there. Why they had to intubate me. I have requested them to take out the tube. Then they weaned me out of it as soon as it was clear I was breathing on my own during the last day.

I spent 5 gruelling days in ICU. One realization… healing takes time.  

Transplant 101 (continued)

Image courtesy of 123rf.com

In my previous post, I said that, as a transplant recipient-candidate, I went to this orientation hosted by the National Kidney and Transplant Institute(NKTI). Attendance to the pre-transplant orientation is a must for any prospective recipient or donor transplant candidate. It ensures that all parties know what they are getting into and that they are properly informed. What requirements are expected of them. For example, the recipient must be made aware that s/he will have to be in immunosuppresant drugs after the transplant. Usually, this is for an extended amount of time, some of them even for life. This is so that the body curbs the production of antigens so that the body will not attack the foreign, newly introduced organ. Because of this, the immune system is also compromised and infections/infectious diseases maybe common if not careful. This is why a recipient is kept isolated for a period after the transplant, with limited or no visitors, and if visitors are allowed, it is a must to wear a mask. In the orientation, it was recommended that the first six months will be spent recuperating and making sure that no infections are contracted. These immunosuppresants may be reduced as time goes by but always with the doctor’s prescription.

Statistics on the success rate of transplants by the NKTI were presented. I was impressed by the numbers, over 200 transplant operations a year. Also the survival rate of transplant recipients way out do that of persons who stay with dialysis. Of course, the quality of life of dialysis persons is immensely improved after transplant surgery. Cost wise, the immediate expenses for transplant will even out with what a dialysis person would spend cumulatively  in 3 to 4 years. All indicators point to transplant as being a better option versus staying in dialysis for the rest of my life.       

On the other hand, the prospective donor should also know what is in store for him/her. A number of possible donors shy away from actually donating because of being misinformed. Some believe that the length of the recuperation period is the same as the recipients’ and that they also take the same kind and amount of medication. In fact with the advent of Laparoscopic Nephrectomy, the post-surgery recovery is reduced that some doctors dismiss it as ‘just like an appendectomy‘ with an incision only a centimeter or so in length. Maybe two weeks rest tops and the donor can get back to his/her regular routine.

Also discussed during the orientation is the responsibility of the recipient-candidate who is on the cadaver list to remain fit during the period of waiting. In case he/she is bumped up the list and called next by the hospital when a match is found, s/he should be fit to undergo the surgery. Otherwise, s/he is bypassed. It is also because of this that a recipient on the list commits to be on hand and ready to get to the hospital immediately if called. Another requirement is the submission of serum samples every month so as to update the records of those in the list and when there is s prospective donor, All these efforts are handled by the HOPE office of the NKTI. But of course, before getting into the list, you have to submit all medical as well as documentary clearances and requirements. And of course, show capacity to pay. There is the cash option as well as the Philhealth assisted option. And also the charity option for those who qualify. Ballpark fees were discussed and a recipient on cash option will need to raise around 1.5 to 2 million Philippine Pesos and be ready with the cash when s/he receives the call.

The panel was comprised of a nephrologist, a psychiatrist, a dietician/nutritionist, a rehab therapist, a social worker, an organ recipient, a kidney organ donor and a priest. The open forum that followed was a lively discussion as dialysis persons, prospective donors and companions fielded questions and contributed their comments based on their individual experiences. Because of this, we also learned a lot from fellow attendees.  

Again, I said that the wait time averages between six months to a year, but also it can be quicker than that. Hopefully, even if the NKTI is a government institution, I hope no politics/red tape/nepotism is involved and the list is handled judiciously. I once sought another nephrologist’s(from another hospital) opinion and she said that NKTI can have some politics in the way they treat the transplant list. But so far, I haven’t really picked up or confirmed any buzz about it.

Since the orientation is a requirement, attendees were given certificates. Well, I don’t claim to know all policies and procedures. These are just information that I gathered during the orientation and a month’s experience as a dialysis person. A live donor is preferred. Aside from it being cheaper, if money is not an issue, you can have the transplant as soon as you are cleared. 

Transplant 101

Image courtesy of pbfluids.com

Back when I was still in hospital, my nephrologist spoke to us about kidney transplant. He said, that in my present age(50) and condition, he is recommending that I undergo work up for a transplant. He spent an hour by the bedside patiently explaining several aspects of this kidney replacement therapy option. And there were many. There are two possibilities for a transplant; from a live donor, preferably a relation of the recipient, who voluntarily comes forward to donate one of his/her kidneys, or when the prospective recipient’s name is enrolled under the cadaver program and shall wait to be called as he/she moves up on the list and when a match for him/her is found.

A requirement for a live donor, aside being between 18 to 60 years old, is that there should be some emotional attachment/relationship with the recipient. Blood relation is preferred as tissue matching could be easily found among close kin. If not related, a friend, spouse, anybody with some close association with the recipient is allowed. Even an employer-employee relationship is acceptable. It is not true that one can ‘shop’ around for a matching kidney for the right price from a line up offered and paraded by physicians. If ever that practice existed before, well it doesn’t anymore. At least not legally. We have heard stories about individuals who sell their organs to the affluent buyer because they needed the money. I do not know if they were ever true and if it continues to exist. As long as there is a donor with a confirmed emotional attachment with the recipient, and both pass all medical clearances and have the capacity to pay, then a transplant can be scheduled.

On the other hand, when you are listed with the cadaver program, your hospital keeps your updated record in their database and your name moves up the list as others before you get their transplants. Donors are individuals who are declared brain dead but whose basal systems are still in function through life support. These may be victims of accidents, aneurysm or stroke. They can be card-carrying donors or one whose family decides to take that route. Of course this option is more expensive than when one has a live donor. There is an extra fee that goes to the donor’s family as well as for funeral expenses. Even the cost of transferring the donor from somewhere else to your hospital is charged to you. Of course your transplant team will make sure you get a proper match. Even if you were on the top or number two in the list, if the donor is not an ideal match, then someone down the line can be the recipient. You have to regularly submit lab results so the information is updated as you can be summoned anytime. According to my nephrologist the wait time is about six months to one year.

To get to be eligible for transplant via a live donor or through the cadaver list, there are very stringent requirements. You have to get clearances from about every medical specialty there is; Cardiology, Pulmonology, Gastroenterology, Neurology, even Psychiatry and Dental. And the process can be a slow one especially if you have to juggle all these around work. First, you are required to attend a half day orientation to make sure both the donor and recipient is educated on the particulars of transplant. It’s a lively discussion with a panel of doctors and allied medical personnel and even a is priest present. A very helpful open forum where the attendees could ask anything related to the disease and the transplant program.

Then you proceed to get your clearances from one physician, one test to the next. I had a chest X-ray and a 2D Echocardiogram last week. I’m scheduled to have the Rest and Exercise Myocardial Profusion Imaging test this coming week. Also, since I had blood transfusion just almost a month ago, I have to wait a little bit more before they could draw tissue for typing and crossmatching purposes. This is to make sure my system has stabilized with the four units of blood i received through transfusion and not get a false sample. Who knows, I might even have a live donor already. But we both have to work up for it, as the donor has a list of clearances to undergo too. I like it that the program is taking no shortcuts. This ensures ideal donor-recipient  matching and higher survival rates. 

Next, more on transplants.